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CommentsHey Deb, Rob, and Super Trooper. Good to hear the event is going well, and yes EVERYONE is plenty psyched about it. I've got 3 guys for the security and I will be seeing my entire unit in the next 2 weeks so ill be getting about 3 more hopefully. As for my mom, she is still bugging her boss. but he's a cheapskate. but hopefully perseverance will pay off. Well off to go do some errands, I'll see you at work this week probably. Adios guys! Murph
CommentsI feel so special I am the 1st entry on the new page!
CommentsJust wanted to let ya'll know Debs computer is on the fluke so she's having a hard time getting online. She said Payton is doing great...I saw Deb today. We are in need of items for the live auction.. that would be the higher money items such as new furniture, signed sports memorabilia, appliances, etc. Please please put your thinking caps on. Do you know of anyone who owns a painting company? A travel agency? A fishing boat? Anything that is normally a high priced item that most normal "blue collar folks" (like me) just don't have the extra cash for ie: a vacation, plane tickets, a deep sea fishing trip, someone to re-paint their home, etc. Think gang Think!! Have a great day all...XOX Shan
Commentshey little man.. Wow! You are so popular that you have filled up another one. At this rate you will have the most popular page. :) Just checking to see how you are doing and I hope that your computer gets fixed soon. I will see you on Thursday. Love always, Jen xxoxoxo
CommentsWELL Halelujah, or however you spell it..We are back ONLINE!! Thankyou to my husband for not losing his mind during the DSL Nightmare and getting it all taken care of!! I am going to the PRINTER tomorrow to get things started on the auction booklet..IF you would still like to put a personal message to Payton or our family in the auction booklet/or an advertisement for a business in the auction booklet, please email me right away and I will make sure it gets in the book...If you just get me the message, I can get in the book!! You too, grandpa!! Sorry it took so long to get you your invitation..It has recently come to my attention that some of the people that are listed under "A" and "B" in my address book(I go by FIRST name) have "missing" or "missing in action" invites...They were sent, but never made it to where they were going and never came back to me..Ahhh, the good ol' US Mail..As my dad says..."We're a little riskier, but a LOT cheaper..." Well, if for some unknown reason you have not received an invite and should have, please let me know right away and I will get it out to you!!! I want to send out a HUGE thankyou to EVERYONE that is helping out with the benefit this year...YOUR EFFORTS ARE AMAZING...Everyone has been so great this year, I don't really know where or with whom to begin, but you ALL know who you are, and I CANNOT THANK YOU ENOUGH...I really cannot...This thing could have happened to anyone, and I feel lucky that I have such a HUGE support system of people that are rooting us on and selling pins and talking to EVERYONE about sma and Payton and really truly believe that we can make the difference for Payton and the TWENTY FIVE THOUSAND OTHER CHILDREN LIVING JUST IN THE USA WITH SMA THAT ARE EXPECTED TO BE DEAD WITHIN TWO YEARS...Yeah, I know, I am a little dramatic sometimes, but it is the truth, so be sure to let people know what is going on, that we need help and that we are counting on them for support, because it is ALL ABOUT MONEY---EVERYTHING COSTS MONEY--INCLUDING THE CURE FOR SMA....AND it all adds up fast...EVERY DOLLAR COUNTS!! Shannon has been selling candy and muffins in our store for a couple of weeks and has already raised almost a HUNDRED DOLLARS for sma...Think about what you can do to help or who you know that can donate or come to the benefit, etc etc..etc..and let me know who to talk to and LET'S MAKE THIS THING HAPPEN ALREADY!!! Payton is doing great, but he cannot survive like this forever...docs are already amazed that he has done THIS WELL for THIS LONG...Think about that.. and if that was YOUR BABY or YOUR NEICE or YOUR NEPHEW or YOUR GRANDSON, because it could be...ONE IN FORTY PEOPLE CARRY THE RECESSIVE GENE FOR THIS DISEASE....OK...Enough for one night..You should see me when I REALLY get on a roll...:0) Good night.
CommentsHey Deb, Rob and Payton! Everyday I go take a look at your journal and I am always amazed by the number of people that help for the benefit! Actually, I am doing my best here, in France, and I found out that we also have an association for SMA...so some people told me that if they wanted to donate, they would do it for French people...I can understand that so I didn't say anything but the thing is that it will reduce MY donations for YOU. Nevertheless, I will go on doing my best for you. Deb, I am so sorry I didn't wish you a happy mothers'day because we don't have the same date for it (here, it will be the 26th of May), but you know, as you REALLY deserve it, I will tell you this: Deb, as you are the most amazing mom I know, I wish you the merriest life you could ever think of, because you deserve more than just a day. I will see you in a month. I hope you will get a lot of money donated the 8th of june, so I wish you good luck and have a great time everyone! Give a kiss to Payton for me. LOVE! Sophie
CommentsFirst, I want to say that I LOVE the new format on the journal!! Thankyou LAURA!! We have really been overwhelmed with all that we are doing lately...WORK... THE BENEFIT...PAYTON...PAYTONS THERAPIES...NURSING...MEIDCAID...THE BENEFIT....OH, AND THE BENEFIT....It has been NUTS to say the least!! Everyone is REALLY helping us SO MUCH though, so THANKYOU GUYS!!! WE love you!!! I must get Payton to bed...He did not sleep barely at all last night, and he is looking a little rough right now, so I must take care of him, but just wanted to let you know that all is well, and we are really looking forward to this benefit, and oh yeah, THE CURE FOR SPINAL MUSCULAR ATROPHY...Have a GREAT NIGHT...P.S. Another sma mom contacted me recently wanting information..Her son is 3 months old, and was diagnosed last Monday with sma type 1.. She lives in Boynton Beach.. This is very difficult for me to hear, and it is very difficult to talk to a "new" person, I feel so sorry for her and she doesn't even know what is coming or how crazy this thing is...BUT, I will do EVERYTHING I can to help her because I know what it feels like to be there.. with no advice from docs, and no one but another sma mom to turn to for info... And hopefully Joshua will live to see the cure.... A few months ago, I talked to an sma mom that lives in Davie, and she did not want to use the bipap or inexsufflator...She told me that she had called hospice and they would be coming in a couple of days...A few days later I got a call from FSMA telling me that Caitlyn had passed away the night before at about 10 months and the family wanted other sma parents to know...This disease is not talked about like it should be, but nonetheless, these babies are DYING.. Make sure you are spreading the word.. it is the only way to stop the RIDICULOUS IGNORANCE OF SMA...ONE IN FORTY PEOPLE ARE CARRIERS.
CommentsDear Rob and Debbie, I had the pleasure of meeting Payton when my boyfriend Jerry and I picked Roz up from your house when she came down soon after he was born. He was, and still is, a beautiful little boy, and the two of you are AMAZING parents. I hadn't heard from Roz, with whom I've been friends since Ryan was about 4 years old, in a few months, until I got an email from her this morning. I immediately checked out your web-site. I can't tell you how touched I am by Payton's story, one, because he's an innocent child, and two, because it so closely parallels something my own family has been going through since November of 2000, when my nephew's daughter was born. Payton is so very lucky to have the network of caregivers that he has, starting with devoted and loving parents, and he is truly a courageous little boy. I will check his progress through your lovely website, and I will pray for you all daily. Sue Spruce
CommentsHey Guys!! Payton... you were cuter than ever yesterday :) and i had a great time watching The Emperors New Groove. Well i just wanted to say hello.. i must go get ready for work :( Tell mommy and daddy to have fun tonight :) Love always, Jen xoxoxo
CommentsHello Debbie..I have not fallen off the face of the earth but we are FINALLY starting to get settled back in after the surgery. I am thrilled things with the fundraiser are going so well and I am sure things are hectic for you right now but we are rooting you on here in Kentucky!! We DO NEED THAT CURE!!! To many children ARE dying from this horrible disease! Debbie I am SO PROUD OF YOU ALL FOR TAKING THIS ON with all you have going on besides. Payton has such wonderful parents! Keep up the good work!!!! Hugs to you all.
CommentsI have NOT been ignoring my journal~~ Just TOO BUSY to get to writing in it!!! Really, things have been crazier than ever--with the benefit in just two weeks, and LOTS OF LAST MINUTE details! Not to mention, we are in the middle of all the last minute social security stuff (keep your fingers crossed on that one) etc etc... I have some GREAT NEW!! Thanks to our very persistent friend Dionne, we are going to be interviewed by Channel 10 on Tuesday and they will be doing a story on SMA and Payton!! It should air the week of June 3rd, so I will let you know when to watch!! We are SO EXCITED about this for obvious reasons, but we cannot really explain just how GREAT it will be to spread sma awareness on the NEWS!!! This is what we have needed for sma for SO LONG!! ANd hopefully, it is just the beginning of the awareness that we will spread as time goes on!! We also taped most of our video with Mike Froitzheim.. He is doing the short movie about sma and Payton for his school project with the Art Institute, and we met for that yesterday, and he also got to tape Paytons' physical therapist over at the hospital (Susan) and will be getting ROb over at his shop next week!! We are very excited about this, it will most likely be our video for the benefit, (if it gets done in time) and if not, we will use it next year!! THANKYOU MIKE!! AND CHANNEL 10!!! Payton is doing great! Thanks for writing Sue, and Jen, and Amy and LILY!!! We hope that you are all doing well!! We are looking forward to meeting Dr. Bach for the first time too! He will be speaking about sma at the benefit! VERY EXCITING stuff going on here!! If anyone needs ANY info about the benefit, email me right away!! It is 14 days and we are counting down!! Work was dead tonight, I guess lots of people are away for the weekend... Paytons nursing has been cut by insurance to our all time low.. 28 hours of nursing per WEEK.. So we are really praying that social security comes through.. If it doesn't.. We are in big trouble.. Love to you all and THANKYOU EVERYONE THAT IS COMING TO PAYTONS' BENEFIT!!!! IT MEANS THE WORLD TO US AND OUR FAMILY AND OF COURSE, MOST IMPORTANTLY, TO OUR ANGEL, PAYTON!! :0) Goodnight.
CommentsJust wanted to say hello & send my love to Payton & the entire Freeman clan! I leave for Chicago tomorrow morning at the "crack" with my Dad. Please wish us luck. I will be back Wednesday, very late. I will see you on Saturday at the benefit-can't wait to see everyone. XOXOXO Marn
CommentsHELLO FRIENDS AND FAMILY!! We would like to announce that RYAN AND JAMIE are having a BABY!!! CONGRATULATIONS GUYS!!! We are so happy for you and we know you will be great parents!! It is a lot of work, but there is no greater joy than being someones' mommy or daddy.. Definitely not!! We are SO HAPPY that you were tested for the sma gene early and that you were both SO RESPONSIBLE in making sure that Jamie did not carry the gene before she got pregnant! I only hope that the rest of our child bearing family does the same!! Now, Ryan and Jamie cannot have a baby affected with sma, but they can have a baby that is a carrier of the sma gene, just like me and Rob and Ryan.. Their baby can be tested when he/she is ready to have children (or whenever Ryan and Jamie want to have them tested--if they so choose) and see if they are a carrier and if their spouse is a carrier.. See how it works?? Rob and I are actually talking about future fundraisers where we raise money to do dna testing on women of childbearing age, to let them know if they are carriers (since one in 40 people carry the gene, we figure we will help quite a few people) and since you cannot get the very expensive test unless sma is ALREADY in your family, it would be a great help to so many women/families because once it is detected in their family, insurance pays for all testing in that family from there on out...The test is almost a thousand dollars! ANYWAY, we are thrilled for Ryan and Jamie and you have to call me soon Jamie and tell me everything! I have got lots of maternity stuff for you and anything else you might need, just let me know! We are very excited for Tuesday, as I am sure you all imagine.. Payton is getting his haircut for the big interview and he should be looking pretty darn cute, as usual!! :0) Wish us luck!! Marni, We miss you very much!! And we are praying that all goes well for your dad in Chicago.. Please call me as soon as you get a chance, and let me know how things are going.. AND HAVE A SAFE FLIGHT!!! Payton had physical therapy yesterday and today (his least favorite thing to do) and he will hopefully start Occupational therapy with his new therapist this week.. We are trying to coordinate speech with Eileen til we find a new therapist organization to do speech with, because the one that we work with now, cannot find anyone that will do afternoon appointments.. I think that is it... If anyone needs any info about the benefit, please email me or call... Love to everyone, Goodnight.
CommentsWell, tomorrow is the big day! Be sure to keep your fingers crossed for us!! We are definitely nervous! Well, I am anyway.. I am not sure about Rob, and Payton seems fine with the whole thing!!! He is wearing his very cute new outfit from Childrens Place and he is looking so HANDSOME!! I have been cleaning and straightening all day! Thanks for all your help MOM!! I figure we're going to be on TV.. We better tidy up!! I got to talk to Jamie today and they are SO EXCITED!! We look forward to having a little neice or nephew to have over and SPOIL!! I am calling social security tomorrow, and just mentioning that we will be on the NEWS, in case they want to let us know if we are eligible or not, since it has been THREE MONTHS!!!!!!!!!!!!!!!!We are VERY EXCITED about the benefit!! And looking forward to seeing everyone!! Let me know if you need ANYTHING!! Talk soon. Love, US.
CommentsHey guys...I just want to say Thank You for Congratulating me...We are soo excited...I know you've been here cuz we were thrilled when you were pregnant deb. I can't wait!!! Payton will have a cousin close to home..I know his misses his cousin Ashley! We all do! Well we will see you soon! We love you guys sooo much!! The Withey's
CommentsHi Freemans!! So very glad to hear that all the bugging & persistance has FINALLY paid off!! Good luck today Deb w/Channel 10 (you're a ham anyway!!) so you'll be fine!! Spread that awareness!! It'd be good to mention something about the nursing problem you've been having...maybe that'll help get it straightened out once & for all. I'll keep my fingers & toes crossed for you. Please give Lil'P a kiss & a hug for me. Luv ya, Shan xoxox
CommentsHey Guys, just writing to let you know that I am really looking forward to the benefit and can't wait to see the little guy all dressed up again. I hope all is well at the house and Rob if you run out of space for the Star Wars stuff I will be glad to "HOLD" it for you. Anyways, give Payton a big kiss on the head for me and tell him that I can't wait to smell those lovely feet again. "HERE RYAN THEY SMELL LIKE PEPERMINT TAK A WHIFF" Thanks big brother I appreciate it. Payton will have a little cousin to hang out and watch movies with soon. Love you guys and talk to ya soon RYAN WITHEY
CommentsToday was our interview with Channel 10! We think it went well! I only got choked up once and I think I gave a TON of info about sma.. I mentioned insurance and nursing issues with social security.. I talked about the disease what it means and just HOW MANY kids are living with sma, and how lots of sma deaths are written off as SIDS and miscarriages, etc.. Payton was SO CUTE, and did VERY well. He only desated once and that was for mucus, so he got suctioned, a little bipap blast and he was fine.. They had footage of Rob kissing Payton and me on the computer:0) and of Rob and I looking at pics of Disney.. We are hoping that this really generates some awareness about sma and of course, helps with the benefit!! Keep your fingers crossed that it comes out GREAT!! I got into an argument with the social security lady today. I really kiss a lot of butt when it comes to those people, but I just couldn't take it anymore today, when she asked me for yet MORE INFORMATION.. I was like "How long is this going to take once you have gotten what you need?" She says, "well, I don't know" I say "well, this is ridiculous because I have all but lost all nursing through insurance" And she says TO ME " Well, Debbie, we have given you FOREVER on this and..." I said "EXCUSE ME? YOU HAVE GIVEN MEEEEEEEEEE FOREVER???" "NO! I HAVE GIVE YOUUUUUUUU FOREVER AND YOU STILL HAVEN'T FIGURED IT OUT YET--YOU SHOULD HAVE TOLD ME BACK IN FEBRUARY EXACTLY WHAT YOU NEED FROM ME AND MAYBE I WOULD HAVE NURSING BY NOWWWWWWWWWWWWWWWW!" I don't know if you have ever been through any kind of bureaucratic BS, but if you have, I am sure you feel my pain.. I told her that I did not want to get in an argument with her, but that she needed to call Rob, get EXACTLY what she needs, and get this thing expedited, because this is RIDICULOUS. We are talking about the welfare of a child!!! She wasn't happy with me, but apparently her and Rob were fine and she is going to call him tomorrow and try to get this worked out. She TOTALLY acts like we are full of crap and that we don't deserve one penny of her/the states money.. This system is total BS. If someone is sick, they DO NOT automatically qualify for help.. THEY MUST BE DESTITUTE. I don't mean barely making ends meet.. I mean DESTITUTE. And you MUST get into this program to get help with nursing!!! Nursing costs over 100,000 a year... Why would someone that makes less than that or a family that makes less than that, and has met all the medical requirements for "need" be denied??? I don't get it. I think I am going to write to my state legislator and try that avenue, because this is why people die, and why people suffer, and why people do NOT GET HELP. The people that are the MOST NEEDY in this country.. The SICKEST ones, are the ones that we do not help. THey are the ones that are at some friend or family members mercy and slowly suffer from not enough care, etc.. and do not get the care or medication, etc.. they need. No one deserves this crap, esp. some innocent little baby or child. DON'T YOU AGREE?? We are trying to make a difference and even though these things take a long time, we are in this for the long haul, and we plan to do what it takes to get these children what they need, and change some things along the way. WISH US LUCK!! And be sure to write a letter to YOUR state representative, if you have the time, and ask them WHY LITTLE PAYTON DOES NOT HAVE NURSING CARE YET????? Thanks.. ANYWAY, I could go on and on and on but I will stop for now! Just want you to know that Payton is well. Last night he had a pretty thick mucus plug and WHILE ON THE BIPAP started to desat (he has not done that before for mucus) and so I suctioned him and calmed him down, and he was ok, but it was really wierd to hear the machine go off and start beeping WHILE HE WAS ON THE BIPAP. VERY weird. I was a little nervous honestly, but he was fine all day and his mucus seems to be ok, so I am not panicked. He was so cute today and his numbers are good. He is sleeping now, and I guess we don't have a nurse.. I am not sure.. We only have about 6 minutes of nursing per week now, so who knows.. Hopefully Rob will get that whole thing straightened out because I feel that this person has really just tried to hinder our efforts and maybe even hold back info on purpose. I know that sounds crazy, but look how long this has been going on! Since FEBRUARY!! On a happier note, we are so THANKFUL for everyone one of our friends and family and everyone that is helping with the benefit.. You ALL have been AMAZING this year, and it has not gone unnoticed.. I told Channel 10 that our friends and family are the ONLY ONES that have come through for us, and that they are the ONLY ones that we can depend on!! Even though we spend $600 a month on insurance for Payton and tons of money in taxes.. The real help comes from you all! We LOVE YOU & Goodnight!:0)
CommentsMiss Deb,Rob, and Super Trooper(or Mr.TV celebrity should i say?)Glad to hear everything went well with the 10 people,cant wait to see it on the idiot box.Anywasy we missed you at the picnic today Deb,we had a BLAST.But you had bigger fish to fry, just like i hope we fry those social security rat bastards. We should really bring back tar and feathering and public punishment for people like that.(ok snapping into Marine mode,breathe, breathe.) ok good now.Sorry i missed your call yesterday but i called back and "met" your mom in modern day fashion over the phone, sweet lady. So if you need anything feel free to call me tomorrow i will be at base in the AM, and at outback in the PM but ill have my cell on me. so gimme a holler. I guess the theme for the day is long entries so ill stop now, lol. Talk to ya alter fellas. Lots of prayers,Michael Murphy.
CommentsHey Deb, Rob and Payton, even if I love the States, I have to say that the social security system is goofed up...I don't understand why they do not want to help. The USA is a very wealthy country though, the first power in the world, so I DON'T get it...Why do they NOT care at all for their people health???? In France, you wouldn't pay anything at all so I'm not used to that...Anyway...that's the way it is but I hope things will change because as you said, it is VERY ridiculous. In any case, here, people DO really care about your little Payton and I receive money for him that I didn't even ask for! That's great and I am very optimistic. Tonight, I will meet my cousin (who by the way was Bush's bodyguard 2 days ago at Omaha Beach) and will tell him about Payton. I will also tell him, that next time he will meet Bush, to tell him that his people need financial help! lol...but when you meet so influencial people, it would be interesting to take some profit from the situation, am I wrong??? People do not meet the President of the USA everyday...:o) Anyways...I hope that you will invite us to watch the tape of channel 10!!! and also the Benefit's tape! AND TELL YOUR PARENTS THAT WE THANK THEM SOOOOOO MUCH FOR LETTING US STAY AT THEIR PLACE!!!!! I hope that we will come to the USA with a VERY thick envelop for you and FSMA. LOVE to you all and take care! Sophie
CommentsHi there, This is my first visit to Payton's website - how beautiful you are little Payton. I hope to meet you soon. You may be 22 months, and I may be 32 years, but we have a big thing in common - we both use a bipap and it's probably saved both our lives. Keep fighting! To your parents - after reading your story I was both horrified by the ineptitude and attitude of some of the medical staff you experienced. Noone should EVER be treated like that. You two seem like really special people - best of luck with your fundraiser, I'm sorry I will be up north, I would have loved to be there. Take care, Daniella
CommentsOK, the big day is coming!! 9 days left!! I am SO EXCITED right now!! We just found out that Paytons' interview will be airing TUESDAY JUNE 4TH at 5:30!!!! Be sure to watch!! We are also working on lots of things with the benefit and a new doc in Miami that is doing research on sma!! I will keep you all updated as it goes on!! SO MANY LAST MINUTE DETAILS!! Still more stuff coming in for the auctions!! And again, if you need ANY info about the benefit--directions, etc.. just email me or email me your number so I can call you!!!! P.S. PLEASE no cursing on the board!! I love you guys and believe me I get caught up in the heat of the moment more than ANYONE!!! But, this board is alot more public now, and I want it to be "G" rated!! Thankyou for respecting this!! And if you REALLY want to curse, CALL ME AND VENT!! :0) I would like to wish Shannon a SPEEDY recovery--she just underwent surgery the other day and is at home resting comfortably until she is back in action!! All is ok, and if you would like to wish her well, her email is SBeatty195@aol.com Also, for those of you that will be volunteering.. We need you to be at NOVA by 5:00 pm!! If you need help with directions call me and let me know!!! THANKYOU SO MUCH and be sure to be watching Tuesday!! OH, P.S. We also have ads in todays City Link and New TImes!! Be sure to pick one up!! Oh, and in the Herald Happening in THe Miami Herald!! There may be more, but I will let you know and you should here something on a few of our local radio stations! They will be running PSA'S about the event!!! Take care everyone!!
CommentsHI GANG!! THANX FOR THE GOOD WISHES!! THANX TO YOU & LORI M ALL IS WELL....SOMEONE'S GOTTA LOOK OUT FOR ME!! DAVE'S HEADING TO HURRICANE RACING SAT. TO GET THEIR AUCTION DONATION(KEEP YOUR FINGERS CROSSED FOR SOMETHING AWESOME!!). ALSO GETTING W/DEBBIE FROM PURPLE POODLE TO GET HER DONATIONS. SO TOTALLY STOKED ABOUT THE TV INTERVIEW & ALL THE NEWSPAPER ARTICLES...AWARENESS HERE WE COME!!! HOPE TO SPEAK W/YOU TOMORROW...GIVE LIL'P A SMOOCH. LUV YA, SHAN XOXOX
CommentsHello friends and family!! Payton had his first visit with his "teacher" today!! She is a homebound teacher that works with kids up to 3years old(then they become part of the public school system), and she was WONDERFUL!! I absolutely loved her and she will be great with Payton!! He has SO many girlfriends lately!! In case you haven't heard, be sure to watch CHANNEL 10 on Tuesday June 8th at 5:30!!!!!!!!!!!!!!!! Payton will be on the news!! And mommy and daddy too, but he will be the STAR!! I am really excited to spread awareness, and this looks like it may be the beginning of getting south florida AWARE!!!! Wish us luck!! Maria Bailey, from Momtalkradio.com will be doing a live interview with us next Tuesday at 9:45 am so if can, tune in to am radio at oh goodness, I forget, I think it is 1407 or 1470.. I will find out and get back to you!! I would like to say one BIG OFFICIAL THANKYOU TO DIONNE FOR BEING SO PERSISTENT WITH THE TELEVISION STATIONS AND FOR WRITING SUCH A GREAT LETTER!!! Thank goodness Channel 10 took an interest and Amber Statler is absolutely fabulous!! She was our Channel 10 interviewer and she was lovely! And then she went out of her way to hook us up with Maria Bailey and also found us a doctor at University of Miami that JUST GOT A GRANT TO WORK ON SMA RESEARCH!! This doc should also be in the interview next week!! All of this is so exciting and SO BIG FOR PAYTON!! AND ALL SMA AFFECTED CHILDREN!! WE ARE MAKING A DIFFERENCE!!:0) So, make sure you watch CHANNEL 10!! I want everyone to know that Shannon is recovering well from surgery!! We all wish her a speedy and healthy recovery!! Well, super busy lately but can't wait to see you all next week! Be good, and goodnight!!
CommentsSorry, just a little excited I guess!! The radio station is WFTL 1400 and it will be Tuesday at 9:45 am on the 4th!! The interview with the news is the SAME DAY at 5:30!!:0)
CommentsSorry, just a little excited I guess!! The radio station is WFTL 1400 and it will be Tuesday at 9:45 am on the 4th!! The interview with the news is the SAME DAY at 5:30!!:0)
CommentsHey out there! Be sure to check out your Showtime in the Sun Sentinel today.. We are on page 39!!! Wow, huh?? Dionne has been working feverishly with print ads and we may (if we are VERY LUCKY) eventually get Sun Sentinel to do a story on Payton/sma!!!!Keep your fingers crossed on that one!!Talk soon.
CommentsHey Guys! If all of this keeps up Payton and SMA will be a well-known thing. And that is what we all are hoping for. Only 1 week until the benefit, I am so excited. I will see you guys soon. Love always, Jen xoxo
CommentsHI everyone! We are swamped!! Totally nuts, but very excited for this weekend! And for tomorrow!! We will keep in touch, so have a great week!!!!!!!!!!Love, Deb:0)
CommentsHello Hello Hello!! We are SO HAPPY with the Channel 10 interview!! Unfortunately they told us 5:30pm and so we told the world to watch and tape at 5:30pm, but the segment aired at about 5:20pm.. We fortunately caught it because we were watching ahead of time, but I am sure most of our friends and family missed it.. SO, we have a tape of the broadcast and will pass it (we actually are making a few and my sister is putting it on the internet..) around so if you want it, just let me know! It really was great!!! Thankyou CHANNEL 10!!!!!!!!!!!!!!!!!!!! And Amber Statler!!!!!!!!!!!!!!!!!!!!! The radio show was short and I was very nervous but we got the word out about the interview, the benefit and SMA... We are EXHAUSTED but SO EXCITED to raise money for a cure!!!!!!!!!! WE NEED TO FIND A CURE FOR THIS DISEASE!! Jump on the bandwagon (if you haven't already!) and help out!! This is a good cause!!!! Love to you all! The Freeman Family:0)
CommentsHi Gang!! I turned on the news last night around 5:25ish & watched & watched,but unfortunately I missed the interview :( If there are any others out there who missed it (I thought it was on at 5:30) you can go to the channel 10 website & read it. www.click10.com/health/kristisgoodhealth/index. the title of the article is: "Little Boy's Genetic Disorder Leads to Fundraising Effort".Pretty informative & there is a link to the FSMA website as well as to Payton's site!!Deb I hope you taped it!!How's it feel to be a TV star?? I hope this brings alot of attention to SMA as well as the benefit...I'm keeping my fingers crossed!!Looking so forward to Sat.night w/high expectations for research money...they said we're close to finding a cure & just because the benefit is over on Sat. doesn't mean our efforts to help find a cure are over.More carwashes,garage sales,bake sales, etc. to come!!Not just for research money but also for the families & children who suffer from SMA. Christmas will be here before you know it & honestly we all know that Deb,Rob & Payton aren't the only family who are having a horrific time getting what they need for their child...I think we should earmark some of the funds we raise to go to these families who are in need.Whether it be food for a month or a piece of equipment or the all time favorite in the Freeman house a new DVD or tape. Sort of on the same idea as "Toys for Tots" but we help a specific SMA child. I'm sure I'm going overboard(remember I'm Deb's friend & we luv to ramble on & on!!)...but anyway....Congrats & way to go Ms. Debbie!! My hat goes off to you again & again you are a total inspiration to me & have made me be a better mother to my own children.Totally think you're the BOMB!! Luv ya, xoxox Shan (Smooch to Payton please!!!!!)
CommentsHi Debbie, Rob and Payton, Looking very much forward to The Benefit Saturday! I'm sorry I missed the Channel 10 interview, but a great write-up on their website! I am forwarding to everyone in my office! Just a quick note to say hello and look forward to a successful fundraiser. See you soon. Love, Pamela
CommentsWOW... What a wonderful segment on sma.. I can't get over how well put together it was, and if you haven't seen it.. Please click on "on the news" right here on this website thanks to my sister AMY, her boyfriend BRIAN and of course LAURA STANTS!! ALL computer GURUS!! We have been so very lucky to have such great family and friends and we know that you are all in it for the long haul with us and that we have your full support and it means the world to us.. IT REALLY DOES.. We COULD NOT DO THIS WITHOUT YOU!!!!!!!!!! I am so excited for this weekend and I am really excited to see everyone!! I have to go and take care of Payton--NO NURSE AGAIN!!!!!!!!!!!! But, take care everyone and THANKYOU!!!!!!!!!!!!!!!!!!!!!!!!!Love Deb Rob & little P..........P.S. Shannon, rambling is the best thing in the world isn't it??? I don't know what would happen to me if I couldn't ramble on and on and on!!!!!!!!!!!!!!!!!!!!!!I am so looking forward to doing EVERYTHING you talked about and PAYTONS PALS is just around the corner and then we really rock the boat!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
CommentsHey Deb, Payton and Rob. I just wanted to drop a line and say that I saw Payton on the news thanks to Amy and Brian, thanks both of you! Debbie, you looked great and Payton too. We barely saw Rob...but it was very moving and I hope that a lot of people watched it. I sent a copy to my friends so that they will know more about SMA and its damages on little babies. Matt and I can't wait to see you guys and I hope we will know each other a little bit more. Once we get to Mia, we want you Deb to ask anything you want from us...ie if you need help or anything else, don't hesitate, ask us, and we will be delighted to be members of your team! :o). We are unconditionnaly devoted to your little son. We want to fight at your side. LOVE TO YOU ALL!!!!! Sophie
CommentsHey everyone!!Just wanted to let you know that the awesome folks at the Puppy Connection here in Coral Springs have not only donated a yellow lab pup for the benefit but also an all white poodle. He's 7 or 8 months, still just a pup!! Wanted you to know there are 2 precious lovable pups availabe to take home, complete w/his or her own doggie package. How wonderful is that!!!! So many totally cool items up for grabs....I'm soooo looking forward to a wonderful evening of good times, but mostly I can't wait to see the money we bring in for research. Although I don't get to see Payton every day I do speak w/Debbie almost everyday & they have become part of my family so I look at this benefit & all the effort & hard work put into it by everyone as helping out a memeber of my OWN family. How can you not just love the Freemans & want to do anything & everything in your power to make Payton better & to help spread awareness & to save 1000s of childrens lives. Sometimes it amazes me that all of this existed right in front of my own eyes but I never knew it was out there until someone spoke to me and made me aware that crap like this really DOES happen to real life people not just in the movies.I know from all the effort that's been put into this benefit that most people feel the same exact way and I think it's truly amazing that such a rotten disease could unite so many hearts together for the same reason.Thanx to everyone who has clicked onto this site,had the nerve to ask a question,asked for a donation,sold a SMA pin,given their time, effort and energy into making this benefit kick butt!!! Can't wait to see you all Saturday night!! Luv ya, Shan xoxox
CommentsHey Guys!! Shan i could not have said it better myself. :) We WILL find a treatment for this thing and saturday night will bring us another step closer!!! I love you all! xoxo Jen
CommentsShan, I couldn't have said it better myself either!!!!!!!!!!!!!!!!!!!!!!! See you all tomorrow!! CAN'T WAIT!!!!!!!!!!!!!!!!!!!!!!:0)
CommentsWe at Firstat are very excited about the wonderful event Saturday night. Some of Payton's nurses, his Coordinator and of course his favorite Casemanager will attend. Debbie....you are an inspiration to all..AL
CommentsHI!! Thanks to Maria I have finally got some decent directions to the benefit!!! Take 595 West to University Go south (left) on University Make a left on SW 30th Street Make a right on SW 75th Avenue The Athletic Center is down on the left! There will be signs in the ground (thankyou KELLY!) by noon so you will also have something to follow!! See you all there!!!!!!!!!!!!!!!!!!
CommentsHello Debbi, The time is near... the benefit is finally here!! Michael and Rob are still at the shop, so I just wanted to let you know I am here for any last minute requests you may have... just direct connect me if you need anything. I am just sitting here thinking what a super Mom you are, you are an angel too! Please keep up your super Mom strength, get a good nights sleep and kiss Payton for me and Michael. I know tomorrow night will be an awesome time and everyone will dig deep into their pockets to help find THE CURE! Good night and Sleep tight, see everyone tomorrow. Love, Pamela
CommentsWow payton sure is a handsome fella! i just downloaded the newsclip and it sure was worth every minute. it was very well done. congratulations and good luck with teh fundraiser this saturday!
CommentsHello Payton, Debbie & Robert, Well I'm in New Jersey and sad I can't be there with you tonight. My thoughts and heart are definitely there with you. I pray that tonight will go beyond anything we can hope for and will bring SMA that much closer to a cure. All my love to you Payton, I was hoping for new pictures I bet your a big handsome boy now. Maybe we will get to see some Birthday shots after next month (Mom, Dad Hint, Hint). Anyways things are going well up here and I'll be back soon to hear how everything went. God Bless, Robert give Michael a BIG hug and kiss for me!! Love, Lisa
CommentsWOW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! What an amazing event!!!!!!!! I could go on and on about the details but I am exhausted, so I will write all the details tomorrow, but I can tell you that it went wonderfully and everyone had a good time and we raised more money this year than last (I do not have a total yet--hopefully will in the next couple of days!) We are putting the video together so that is a PR tool, and something we can use to show people just what we are doing down here!!! I can't wait for the next project but am thrilled to have a few days of R&R! THANKYOU EVERYBODY!!!!!!!!!!!!!!!!!!!!!!!!! WE COULD NOT HAVE DONE THIS WITHOUT EACH AND EVERY ONE OF YOU!!!!!!!!!!!! EVERY DOLLAR COUNTS, AND SO DOES EVERY MINUTE THAT YOU SPEND THINKING ABOUT PAYTON OR FIGHTING THIS FIGHT WITH US!!!!!!!!!!! YOU ARE ALL INCREDIBLE!!!!!!!!!!!!!!!!:0) :0) I would like to send a special thankyou out to all of you that worked tirelessly and volunteered your valuable FREE TIME to help me with so MANY details of this event!!! The reason we were more successful this year was because of the countless hours you all spent spreading the word, selling pins, getting DONATIONS!!! and constantly offering your help!! IT IS ALOT OF WORK TO ORGANIZE SOMETHING LIKE THIS, and I was really overwhelmed in the end, but came through because of all of YOU...................That is pretty darn cool.
CommentsHey Guys!! Last night was truly amazing!!! All of the hard work that everyone put in really paid off. So many people came i couldnt believe my eyes, and all to help kids like Payton. I will see you soon payton:) love always, jen xoxoxo p.s. Hi Robbie!! :)~ How are you heels??
CommentsI was really touched by your story, I have 3 kids of my own so I could imagine what you must be going through. Payton is a beatiful child I know god will help you, just have faith. There is always a higher power. God bless you.
CommentsDebbie - What an amazing night!! I can't wait to hear the grand total! And I just wanted to say what an amazing support team you have! Everyone that gave of themselves to pull this wonderful event off was so unbelievable. Working with everyone on the benefit was an amazing experience and I really want to thank you for the opportunity to help make a difference and to hopefully speed up the process of finding a cure! You and Rob are amazing and inspirational people and I welcome the chance and the challenge to work on more events and to raise as much money and get as much exposure as we possibly can!! Payton is lucky to have you guys and so many who are fighting for him!!! Kisses! Dionne
CommentsHELLO! HELLO!! I hate to make everyone wait, but we still do not have an exact total! I can tell you this though.. It looks to me that it is just about $50,000!!!!!!!!!!!!!!! Well, it was a wonderful night.. Payton was such a trouper and did SO WELL and we had such a good time and we had another SUCCESSFUL sma fundraiser!! We are feeling so good about all of this, and have ALL OF YOU to thank for this!! This is all about saving these children from sma and dying some horrible death, and I think that we are making a difference!! We are really going to rock the house with Paytons Pals and we hope that you are all in this with us for the long haul, because we will not stop until we find a CURE FOR SMA!!!!!!!!!!!! If you haven't already and are checking out this website for the first time, now is the TIME TO GET INVOLVED!! THIS IS THE CHARITY TO BE A PART OF!! We are 100% volunteer and 100% non-profit.. THAT IS RARE IN THE NON-PROFIT WORLD!!! You would be hard pressed to find very many non-profits that are all volunteer!! We are working harder than paid employees would ever work.. Because we want to SAVE PAYTON and all the sma children all over the world.. THIS is about SAVING CHILDREN AND BABIES!!!!!!!!!!! We are currently getting the details worked out to be officially tax-exempt and have 501-3-C status, but when it is all finished I will let you know and we will be on our way!!! Our next project will be a car wash and then another garage sale(so save your throwaways!!) and then on to planning the benefit again!! If you have ANY IDEAS about future fundraisers.. etc... or want to be involved, please let us know!! Email me or write on the board!! If we work together as a team we WILL MAKE THIS HAPPEN!!!!!!!!!!!!!!!!!!!!!XOXOXOXOX
CommentsDeb,Rob,And SUPER TROOPER, cant tell you guys enough the wonderful time i had on Saturday. i am so happy to hear the total is well over last years. YOU DESERVE IT! And so does Payton and all the other babies. Lets not give up until something is done! But mainly Deb, just reading this journal motivates me each and every time. You put a fire in all our hearts. keep up the hard work, you have no idea the amount of people that appreciate this. THANK YOU SO MUCH! In a world we live in today we can only PRAY for more selfless people like yourself and Rob. Thank you, you are an inspiration to me and everyone you know. Well i am getting sappy so ill quit it(im not even drunk!) but just wanted to say Thanks. Talk to y'all soon. Michael Murphy
CommentsDebbie --- great job on the fundraiser. You are so right about the stress and work preparing for it but the out come is always the best. I know Dr. Bach was a great assest to this year's event as the guest can see a real face in the battle with SMA. HE is a great man and has helped many kids and will continue to help the kids until the cure is found. I am sure Payton had a great time - I know MAdison has a great time at her event. She is a big ham --- we need them to be hams. Now take that need rest and also enjoy the summer.
CommentsHi Gang...Just wanted to let ya'll know what a wonderful success the benefit was.A pretty big turn out,lots of auction items,money money money & a good time had by all!!I myself am anxiously awaiting my 7 day cruise I won on the live auction!! Yeehaa!! Although it's only been 5 days since the benefit we've already begun to plan for the 2003 benefit....if you'd like to help drop a line & let us know or if you think of things that we can change or you have a connection for an auction item please please let us know!! Last year we hit 40 thousand this year 50 thousand who knows maybe 2003 we'll hit 100 thousand. With all the help and energy put into it how can we loose!!They say aim high & you won't be disappointed right?!! Way to go Deb,Rob & Lil'P...lets keep up the good work & get you more interviews w/the TV stations,newspapers & other media outlets...spread that SMA awareness!! Love ya, Shan xoxox
CommentsWell, lots going on...AS USUAL!! We are in the middle of sending out thankyous! (I have help this year--thank GOD!!) I sent out 300 handwritten thankyous with pictures last year and that was quite a project just in itself!! Thankyou Maria for helping me with this!! It is so important for everyone to know just how thankful we are and I don't just want it written on this board! We want each and every one of you to get a personal thankyou from all of us with a picture that you can keep of our little angel!! WE COULD NOT DO ANY OF THIS WITH OUT ALL OF YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Be back soon-must get Payton to bed.. Will share lots about Paytons Pals soon!!!!:0)
CommentsHi everybody!!! Wanted to let you all know that we have TONS of really awesome SMA T-shirts for sale. Various styles & colors e-mail Deb for more info. Saw Payton yesterday & he had speech while I was there. I couldn't get over the noises he made & the intense look he had while trying to concentrate & communicate w/Eileen. It really was awesome to watch & made me even more determined to raise more money for research LETS FIND A CURE FOR THIS BADBOY & give Payton the quality of life he should've had from the start. If you know of a jeweler or anyone who might be willing to donate an item for the 2003 benefit please let us know.We're setting our sights higher each year & the benefits keep getting better & better but these kids are still being born w/SMA & still dying 'cuz we don't have a cure....YET. I know we can make a huge difference not just to Payton but to the 1000s of SMA kids & their families...there bodies have already failed them don't you be next. I LUV YA Freemans!! xoxox Shan
CommentsJust wanted to say, i do not know any couple who could be any stronger than Rob, Debbie and of course little Payton. I hope this years fund raiser was more succesful then last year.Wish we could have stayed longer. Go Payton !!! Love, Claudia & Frankie.
CommentsRob & Debbie I know your on the way to therapy... Just wanted to say keep dry, it's lousy weather out there........... Rob, I have now known you 23 years of my life, which is hard to believe......we are getting old : ) Keep up the great work!!! I love ya , Brother. Keep on pushin.........Good things wiil happen. Frankie. ; )
CommentsRob & Debbie Rob, I have known you now 23 years of my life. You have always been a strong person, especially now. Keep up the great work and keep pushin...... Good things will happen. I love you guy's. Keep dry...it's raining cat's & dog's out there. Love ya.... Frankie God Bless Payton.......the Angel
CommentsHello, well I heard and I see from the board that the event went very well and was very crowded. Again I'm sorry Joe and I didn't get there. I heard Payton is getting bigger and quite the handsome boy!! Joe and I are gonna move back up here. He should be here in August. Well I'm really glad everything went so well and I will be back to the site to see how you all are doing. Love, Lisa
CommentsHappy Fathers Day Rob!! AND Happy FATHERS DAY DAD!! AND Happy Fathers Day to all you fathers out there!!! Have a great one!!! Work was busy tonight and tomorrow should be nuts.. Payton is great.. We are looking forward to hashing out the details for Paytons Pals and future fundraisers!! Promise to give all the dirt when it is figured out! We are having a car wash very soon.. Probably either July 21 or July 28.. Payton will be TWO on July 14th and WE ARE SO EXCITED to be able to plan his party and celebrate the BIG ONE!! The textbooks (dated from the pre-archaic times) say that type 1 children "do not usually live to see their second birthday" and we all know that normally that would be considered old age for a type 1, but with the bipap, a cool diet and some coughing assistance, Payton has kicked some butt and proved to alot of people that you can be pretty darn handicapped and still laugh and enjoy life.. Payton doesn't know any different, so to him a day with nothing but videos and mom and dad and grandpa and grandma is the best day there is! Take care and we will have details for his party soon too! Love Us
CommentsDear Payton, Hey! It's your favorite speech therapist. Okay, you're only speech therapist, but we are definitely buds. You know that I'm going to miss you when you get another therapist. If you weren't up partying all night, you would be awake for therapy. Even when you get another therapist, I'm still going to come over to hang with you. Okay? Hope you're having a good day. Be nice to Daddy because it's Father's Day. Be nice to Mommy also. Tell mommy and daddy I said , "Hi". Hopefully I'll get to see you next week, you little sleepyhead. Love you......Ilene
CommentsHappy Father's Day Robbie!!!Hope you all enjoyed your day together (missed you today Deb it was nuts at Outback!!)Excited about the upcoming 2nd b-day for Lil'P...how cool is that.Hoping one day Payton will realize just how lucky he is to jave two such dedicated & loving parents...it'a because of you two & your unyielding determination to keep your son alive that this big event will be happening. YOU'RE BOTH SOOOO AWESOME!!!I wish all children had such wonderful folks,especially all the type1 kids, just think about how much better the world would be. Hope to speak w/you soon. Luv ya, Shan xoxox : )
CommentsHey Deb, I just wanted to say hi, and let you know that I haven't forgotten about the addresses you need I will have them all soon. I'm so excited about all the money that was raised at the benefit to help Payton, now we just have to work on making twice as much money next year. Please let me know what I can do to help. Payton looked so cute at the benefit. I can't believe he's going to be 2 next month, that's so great!! Please tell rob I said Happy belated Father's Day. You both are the most amazing parents I have ever met. Well give payton a big kiss for me, and hopefully I will see him soon. Love ya Kelly
CommentsHello all!!! Well The next car wash has been scheduled!! Yeah!! It will be held on July 21 at the Mobil station on the corner of coral springs and atlantic. I dont know the time yet but i am sure that deb will fill you guys in on the rest of the details. Hope your visit went well today Payton you are such a trooper!!! I will see you guys soon. Love always jen xoxo
CommentsJULY 21st!! Be there!! Our second car wash!!!!!!!!! It will be fun in case any one would like to volunteer!! We expect to have a sunny day so get your bathing suit and come on out and help us wash some cars!! We took a ton of pics last time and everyone had a great time!! Look forward to seeing some of you there!! The FSMA annual conference is this weekend.. Hundreds of sma families go and meet and talk and listen about SMA... I wish so badly that I could be there.. Esp. to meet some of the other parents, but there is just no way.. Maybe next year.. I am hoping someone takes notes for me and takes lots of pics too.. Maria is still taking in money from the event but we are definitely over $50,000 so JOB WELL DONE BY ALL!! I hope that our sma family is pleased and maybe we will see that CURE/TREATMENT sooner than we thought!!!!!!!!!!!!!!!!!!!!!!!!:0) Payton had his visit in West Palm Beach today.. he turns purple now as soon as he sees the girl that gives him the shot.. He is such a trooper though.. As soon as we walk out he is fine.. Just take me home mommy:0) Thankyou so much grandma for always being there for us and helping us get to the doctor!! We know you are so busy with work, yet you always take off to help with Payton no matter what he needs!! We love you mom/grandma!!!!!!!!!!!!!!!!!:0) Well, I think that is it.. Talk soon Debbie
Commentshey Deb,Rob,and Super Trooper, Just dropping in real quick, awesome to hear the total is well over last years, but well all know its still not enough. CANT WAIT FOR THE CAR WASH!!!!!!! i had such a blast at the last one i cant even fathom how much better this one will be.......EVEN IF I STILL HAVENT SEEN THE PICTURES DEBBIE! LOL. Well i am off to go hit the rack, hopefully ill see you before i leave for California on Friday Deb, if not keep up the good work, you motivate us all. G'night Freeman Clan. Michael Murphy
CommentsHey buddy!!! I enjoyed watching Toy Story 2 with you today :) Thank you for warning me before the scary parts....like when that mean toy wants to hurt buzz. we wouldnt want that now would we?? You are such a great buddy and i am glad that you did not make me sit through veggie tales again....i like barbara the manatee and all of them but they can never find their hair brush :) LOL!! I cant wait to raise some more money for my favorite munchkin!!! I will see you soon Love ya jen xoxox ps tell mommy and daddy i said hi :0)
CommentsHi Kelly, Michael, Shan, Jen and everyone else!! Payton is great.. We are looking forward to celebrating his SECOND birthday soon.. It is so weird because even though Payton is only turning two it feels like 10 years have passed since I was pregnant..Very strange..We haven't been able to book it yet, but it looks like we will try to rent out a single room at a theater to watch a movie with Payton and friends! If all goes the way we hope, we will have an open invitation to any of our friends and family that want to come!! KIDS ARE VERY WELCOME!! So,as soon as I have the details I will post them.. We are already working on our Paytons Pals website with Laura and should be up and running as soon as possible... I will let you know about that too.. The car wash is July 21st.. Don't forget.. wear your bathing suits!! Talk soon Deb
CommentsHEY THERE.. If any of you that read this board are sma parents.. could you PLEASE do us a big favor and send a pic of your child?? NOT an email please and no paper copies from your scanner.. I want actual photos or copies of photos!! We plan on blowing them up and using them for a wall at the next benefit that we have!! We want people to SEE our children so that they can see that this is not just happening to Payton but happens and has happened to many children all over the world!! I know it is a pain, but if everyone participates, this will make a huge difference in our fundraising efforts and will be SO APPRECIATED by all of us who are working so hard in south florida to raise awareness and funds for research,etc..!!!!! SO, Please help us out and send a pic!! The address is Payton Freeman P.O. Box 667498 Pompano Beach, Fl. 33066 We are already working on the date for next years benefit, so any head start we get will be SO HELPFUL!! Thankyou for this!! I will also post on the FSMA board, etc.. but want to start here... We were denied SSI which means we are ineligible for medicaid and therefore unable to recieve nursing care through medicaid.. This is a very BIG DEAL.. We were denied based on the fact that there "was a lack of information" or something like that.. THE LAST THING that Carol said to Rob was, "Well, I don't have everything I need, but I don't know for sure what it is that I need, so I will call you back" We got the denied letter a few days later.. So, now we are going to talk to an attorney provided to us by the state (I guess they help you if you were denied--but they must somehow work for SSI) and we are going to fight this.. It is a real shame though, that Payton who so obviously needs nursing (My nurses are all beside themselves that he can't get nursing, esp. when they constantly go to different cases that do not have the need that we do) cannot get it and has already waited over 4 months and counting to get anywhere with this.. This has had a huge impact on Rob and I and our relationship and of course affects Payton too, in probably more ways than I even realize.. I wish I could sue them for every second of Paytons days that he has had to suffer because of them.. And I wish a few other things too, but I will leave it at that and I will keep you updated as things progress.. Right now, we are just going to meet with the attorney next Tuesday and see what happens next.. Keep your fingers crossed!! We have alot of t-shirts and a couple jackets,etc.. leftover from the benefit that are now being sold by me and Jen B, so if you would like one get yours now!! They are being sold at a discount and are quite nice!! I also have some of last years model too, but there are limited sizes and styles from last year left.. Take care everyone and talk soon.
CommentsDeb,Rob,And Super Trooper, sorry to hear the screwing continues, we all really need to find out something to do. we are all concerned about finding a cure in general but we also need to find something to do for payton himself, and get this nursing he needs.Its hard to believe people can be so heartless just knowing that if it were their child in this situation theyd eat glass to get something done. Well i have to cut this short i am leaving for California for a couple weeks to go blow some stuff up in about 2 hours. But i will see you guys when i get back and cant wait for the carwash! talk to you guys in a couple! Michael Murphy
CommentsHey guys~ just read your journal entry re: the SSI situation/medicaid. What the crap I swear do these people not get it. We're not talking about being approved for elective surgery here this is a childs life.Explain to me how this crap can go on in the good ol' USA/united we stand & all that stuff. How freakin' hard is it to understand SERIOUSLY what is wrong with our health care system. There are people constantly robbing them blind...getting assistance when they don't need it because they're lazy & don't want to get off their butts,they falsify documents and use the system to benefit themselves while screwing those that NEED it to survive. What is this bullcrap all about. It's soo wrong and unfair and the worst part is they're hurting an innocent child and just don't seem to care. Not enough information??? Well Carol why don't you drop by one afternoon and meet Payton,see what his life is all about then tell us you don't have enough damn information.One look at this child is all the information she'll need.It's absurd just totally absurd and honestly makes me sick to my stomach.Let me know what happens Tues. w/the attorney Deb.. appeal appeal appeal until they get so sick and tired of hearing your name, until they know your # by heart. I'm sorry to go off but I've never been known to hold my tongue and this touches my heart. My fingers & toes will be crossed for you!! Have a wonderful weekend. xoxox Shan
CommentsThanks Michael and Shan!! I need you guys to pump me up like that cuz I get pretty tired of this crap and it gets harder and harder to fight these people.. SO THANKYOU I NEEDED THAT!!!!!!!!!!!!!!!!!!Talk soon! Deb
CommentsHey Deb & Rob~Wanted to wish you luck tomorrow with the attorney.You know that if there's ANYTHING I can do to help with this or anything else I am here 120% for you just say the word!!Hope this finds you all doing well...especially Lil'P. Luv ya, Shan xox
CommentsHey Guys. That goes for me too. I hope that everything goes well tomorrow. I hope you like your new toy buddy it took me a while but i finally found it :) I will see you all later. xoxo jen
CommentsHey, Payton! Hope you're doing great! Getting ready for Football? Summer practice seems just around the corner! Your Aunt Amy mentioned a wonderful dinner party in your honor and to help out FSMA which, alas, I have not been able to attend -- but be on the lookout for a little something in the mail that I hope will help out! See ya!
CommentsOK I KNOW.. I have been neglecting the board.. I think I was just sort of "vacationing" from everything for a few days to recoop and figure out exactly what I want to do as far as fundraising and next years benefit, etc.. We are starting our own NON-PROFIT organization called PAYTONS PALS.. We are 100% non-profit and ALL VOLUNTEER!! We are doing this because we see a void out there in the sma world that we want to fill!! There are a few organizations that raise the majority of their funds for research (FSMA, ANDREWS BUDDIES, MIRACLE FOR MADISON) and we SUPPORT THESE ORGANIZATIONS 100%!!!!!!!!!!!!!!! BUT!! When a family (like ours) needs a new bipap or a new in/exsufflator, or a wheelchair or a power wheelchair or a wheel chair accessible van or a wheel chair lift, THERE IS NO ONE THAT HELPS!!! THERE ARE CHILDREN OUT THERE THAT GO WITHOUT!!!! THEY NEED THESE THINGS!! THESE ARE NOT LUXURIES!! These children don't have luxuries, believe me.. They are currently given no hope whatsoever by the medical community and the type 1 children are not given hope by anyone but their family and friends... THIS WILL BE DIFFERENT WHEN WE SPREAD AWARENESS!! Alot of sma children do not get the exposure that Payton has.. Some of them, are in their homes, unable to leave the confine of their rooms, and that is life for them.. Machines, feedings through a tube, and laying on a bed, watching TV.. THEY DESERVE TO ENJOY WHAT LITTLE TIME THEY HAVE!! SO, We want to help them.. We are going to raise money for research, but we will also be raising money that goes DIRECTLY TO THE FAMILIES OF THESE CHILDREN!! NOBODY does this so far that we know of, so we feel very proud to start helping those that need the help! You could imagine what a mom goes through that acts as a nurse basically, constantly taking care of their childs medical needs, adjusting and lugging around equipment, fixing special formulas, going to countless therapy appointments, giving air when a baby desats and getting so used to it, that it is not "weird" to them anymore but just how they take care of their baby.. AND, doing this day in and day out they tend to get a little tired but these moms are relentless and tireless and NEVER GIVE UP! NOT ON THAT BABY!! AND, the dad works twice as much to make up for the loss of income for mom, so he comes home from work EXHAUSTED but still finds an ounce of energy left to read a book til he passes out and the mom sleeps about 4 hours and then goes and feeds (Sma children can't go more than 2-3 hours without nourishment) and turns (they can't move so you can imagine how sore they would get if you don't turn them--not to mention you don't want secretions to get too comfy in those lungs and get infected) and feeds and turns, and without ANY nursing at all this would be impossible and SSI is actually trying fight ALL of US on this issue--or medicaid or whatever they are--THE ORGANIZATION THAT WAS PUT INTO PLACE TO HELP PEOPLE LIKE US, BUT DO EVERYTHING THEY CAN NOT TO--- ANYWAY, I know I am rambling, but can you just imagine what life must be like for the family I just described.. Well, I know about 50 families like that and not all of them can afford the stuff they need and not all of them have Outback or Striptees or my MOM or Channel 10 or Susan or nurses that care and OUTBACKERS THAT ARE THE BOMB and g-ma Roz and FAMILY THAT ALWAYS HELPS WHEN THEY CAN and SO MANY OTHERS that have given of their time and money ALL JUST TO HELP SAVE A DYING LITTLE BOY.......................... SO we want to step in and make a difference! I am loving ANY ideas you all have! I WANT YOUR IDEAS!! We are going to do some great things TOGETHER and this is a joint project!! WE WILL MAKE A DIFFERENCE!! Next years benefit will be for research, but all of our other projects will go to helping families!! Please email me if you want to help or have anything you want to talk about! We are in the process of getting our organization up and running! We are working with an sma dad! Jacobs father, Adi, who has been just wonderful is helping us PRO BONO and we are SO EXCITED to get this thing rolling! WISH US LUCK!! AND LETS FIND A CURE FOR THIS DISEASE!!! One more thing, Rob and I working on a short video of Payton and the interview with Channel 10 and a couple clips from the event, etc.. THis thing is professional and going to be quite awesome.. IF anyone wants a copy to show to someone you think might want to be involved or just want one period, let me know!!! The video should be done in the next couple of days!! Thanks for everything guys and talk soon! OH, P.S. THANKYOU JEN FOR PAYTONS JULY BEANIE BABY!! You know we have been looking for that bear.. You are the best! OH, GEEZ, one more thing!! We are planning Paytons b-day party at Muvico on Saturday the 13th of July and want to invite you, our friends and your children of course!! As many as want to come are invited.. We are NOT sending invitations! TOO last minute, so please do not be shy and come! THIS IS THE BIG BIRTHDAY!! ALL textbooks say that type 1 sma children "do not live to see their second birthday" We are quite excited to prove this archaic statement WRONG!! Join us! I will have more details later! LOVE LOVE LOVE :)
CommentsOh my Deb i think that this is you longest novel in awhile!! :) Well speaking of fundraisers i hope to see all of you at our Second Car Wash that will be on July 21. We are putting up flyers and everything. If you want to volunteer just let Deb know. The more hands the more cars we can wash and the more money we will raise. I cant wait until this whole thing is up and running!!! Well i will see you guys later. off to my oh so fun hostess meeting :( xoxo jen
CommentsHello Hello!!! We are thrilled to announce that Paytons SECOND birthday party will be held at the Muvico in Pompano!! We rented an auditorium and are welcoming all of our friends that would like to join us!! The dates have been changed, so for details please email me at pjf714@netscape.net!! We have kept in contact with Amber over at Channel 10 and she has decided to do a follow up story on Payton at his party!! WOW, HUH?? We are THRILLED!!! People may actually start to recognize Payton soon and realize that this baby needs HELP!! We are picking up the video tonight that we will use to encourage celebrities/press/new people to help, etc.. !!! This tape should be awesome with clips of the interview on Channel 10, the interview with Dr. Baumbach, the event and some important info about sma, with music by Creed and lots of pics of Payton, so if you want a copy or know someone that you think should see it, please let me know!! I am ordering a bunch of these to send out!!!! Don't forget about the car wash and SAVE YOUR GARBAGE!! Garage sale soon!! ALSO, A BIG THANKYOU goes out to Jim and Maryann and Paula and Tom and the "James Jr. Fund" for taking an interest in Payton and for paying for Paytons' entire birthday party and then some!! We are so happy to be able to afford to make this birthday (the big one) as special as we are because of YOU!! THANKS SO MUCH!! We really appreciate it!!!!!!!!!!!!!!!!!!! I promise to put up pics soon! I know some of you are thinking, yeah right! But I promise as soon as this party is over I will start getting them up.. I have LOTS!! All the way back to DISNEY!! Sorry! Love Love Love Deb
CommentsOK, So this is whats up.. I went to the "legal aid" office in Fort Lauderdale yesterday.. These organizations are not set up for you to call.. When you do, you get a VERY LONG VERY ANNOYING voice mail, and I guess basically they figure if you want help bad enough, you will come get it.. SO--my mom is off (thank God)from work for a couple weeks (perk of working for the public school system and MAJOR help to me!)and she stayed here with Payton so they I could go figure out what to do next about SSI.. BECAUSE, in all reality they LIED on our denial form by telling us that we were denied because we "did not provide them with the information that they requested" In fact, we supplied them with EVERY BIT OF INFO THEY REQUESTED and THEY did not know what to ask for next, said they needed more, but did not know what and that they would let us know.. Well that was the last contact we had with them.. SOOOOOOOOOOO when I went to the legal aid office.. They were like what do YOU want?? ... I said I need "legal aid" They said for what? I said I was denied SSI for my very disabled son and have been cut from nursing and am basically desperate for help (this was all through this like bullet proof glass).. Anyway, she says, well have you been denied twice?? I said no this is the first time.. well she says, you have to be denied twice for us to take you on, (or homeless or HIV positive) but go ahead and appeal and let us know if you don't get it.. SOOOOOOOOOOOOOOOO I said well, ok I understand I am going to have to appeal but I just want to make sure I don't NEED you guys because they sort of screwed around with us.. What do you mean she says?? I explain what happened and she calls one of the legal interns and asks her is she has "2 seconds" to talk to this lady out front.. So, FELICIA comes to get me.. I love FELICIA.. Felicia is this young.. take no crap intern that KNOWS THE SYSTEM.. I tell her my short version (yes it was short) of what has gone on and how I just want nursing.. She says well, why haven't you gone to the DEPARTMENT OF CHILDREN AND FAMILIES? (this is welfare for those of you that don't know) and I said well, Payton is "disabled" and no one has ever told me that I can go directly to DCF and EVERYONE has told me that we MUST GET APPROVED FOR SSI BEFORE we can get medicaid and "into the system" She said well, Payton IS disabled so you should get SSI benefits, but if you cannot pay for your medical needs (including nursing) you can get help from medicaid through DCF and it is a separate entity.. And medicaid (once you get approved) will pick up where insurance leaves off.. SO if insurance only wants to pay for 28 hours of nursing per week.. Medicaid would pick up the rest!! WELL, I almost started hysterically crying in her office but I held my composure and asked what to do next.. She said well, you need to go down to DCF and apply but first lets find out what happened at SSI.. They do this crap all the time, etc etc.. SOOOOOOOOOOOOOO she calls and it was GREAT because they messed with her, kept her on hold, switched her all around, made her wait and wait, and when she demanded to talk to the manager.. KEVIN MCCORMACK, they switched to CAROL POWERS voicemail!!!!!!!!!!!!!!!!!!!!!!!!!!!! Well, as you all know Carol is the case worker that lied and messed everything up to begin with, so FELICIA was pissed.. Then she called back and could not even get the girl that would switch her to the proper person.. So, just like any normal person that calls SSI, she got DUMPED and she was NOT HAPPY.. I heard her telling her supervisor what bull#$%^ this is and he said that we are not their "client" yet, but to call Kevin back and ask him nicely to take care of this the right way, so that they DO NOT HAVE to get involved!! Well, this would just get them to figure out what it is that they need, and let us give them the info without having to "appeal" or "reapply" (All of which is lots of red tape and hassle) SO WISH US LUCK.. I am to call Felicia next week and find out if she got anywhere with them.. IF NOT, I have to APPEAL and go through all the crap, but they will probably take this case more seriously since we have ALREADY talked to an attorney about their negligence........................SOOOOOOOOOOOOOOOO then I went straight to the DCF and got an application.. I filled it out and brought it back today.. I waited in line.. Waited waited waited in the lobby and finally an appointment setter upper type person came and got me.. She told me what I would need to bring, what time and day I needed to come back, etc.... She was very nice but basically just gave me an appointment.. ANOTHER thing you can't do over the phone..... SOOOOOOOOOOOO I will go back next week and PLEASE KEEP YOUR FINGERS CROSSED ON THIS ONE.. This is our ONLY chance of getting nursing any time soon.. I cannot tell you how much I am hoping this works out.. I don't know how much longer we as a family can take the whole no nursing thing....ALL I can say is THANK GOD FOR MY MOM:0) Well, We are SO Looking forward to the party and again, if you want details, email me!! Laura Stants is currently working on our Paytons Pals website.. It will be at www.paytonspals.com There isn't much there yet, but be sure to check it out in the coming weeks!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Also, if anyone knows info about this whole DCF--SSI thing that I do not or can help me with any of this process please let me know.. I feel like an alien when I go into these offices and like everyone is looking at me like why are YOU HERE??????????????? Meanwhile, I have more right to be there than alot of these people but whatever.................. Just let me know if you have any experience with this!! The garage sale date will be announced SOON!! Don't forget to save your throwaways!! OH and don't forget summer fun and car washing on July 21st!!!!! Love to you all--Deb
CommentsBar cleanup today--work tonight--and now I am so thrilled to be home and getting ready to watch a movie with My Baby Payton and Rob and g-ma.. I will make this very short as I have been long-winded the past couple of days!! We are going to watch a "beautiful mind" Talk soon... Love to all.. Deb P.S. Got the Hepatitis A shot today at work--seems there have been over 300 reported cases of it in Broward county in just the past week and it was MANDATORY for all Outback employees to get the shot or we would not be able to return to work!! We thought this was a little crazy, but did not mind getting the shot if it would prevent us from getting it.. Just wanted to make sure it would not affect Payton and everyone (including the nurse) said it would not.. Talk to you all later.. :0) Deb
CommentsHey Buddy!! I leave for a few days and so much happens. How am i ever going to keep up?? Just checking in to see how everything is. Your birthday is coming up soon! I will try to come by and watch a movie with you this week.... but i have just one request....try to pick something besides veggie tales ok?! :) Talk to you all later. xoxo Jen p.s Rob i am still waiting and waiting and waiting. The board misses your wisdom :)~
CommentsHi'ya Gang!!Wanted to drop a note to say hello & make sure all ws going well.So glad to hear about the same crap happening to the attorneys w/this Carol(blech)lady that happened to you.Maybe now they will totally understand & do SOMETHING about it.See just how much of a differance you're making Deb!!Keep up the good work & hopefully this will not only benefit Payton but other families that have to deal w/the same crap that you do.Who says 1 person can't make a differance?? Way to go!!!Excited about the big 2nd b-day...that is soo TOTALLY awesome.Think maybe you should start a website about all you do for Payton on a daily basis & the different ways that you do things for him & yourself in the hopes that other type 1 Moms & Dads will read it & get some sort of knowledge & understanding of how to live day to day w/a type 1 child.That making the choice to keep your child alive, using the bi-pap & making them cough & the 1000s of other things you do, actually works & that you CAN watch your child grow & they CAN celebrate their 2nd b-day & 3rd & 4th.Title it "DEBBIE DOES IT...SO CAN YOU!!"(Daily life of a SMA Type 1 Family). Hey maybe it's corny but it might help!! Anyway I love you Deb,Rob & Payton!! Love, Shan xoxox
CommentsHey There lil boy!!! How are ya doing?? Your website is very very cute!! Thanx for lettin me look at it!! Tara
CommentsI WISH YOUS THE BEST OF LUCK.EVEN THOUGH I DONT KNOW PAYTON I LOVE HIM ANYWAYS. AND I THANK YOU FOR NEVER GIVING UP....YOUS ARE TRULLY LOVING PARENTS. MAY GOD BLESS YOU...I KNOW HE WILL!!!!
CommentsHappy Fourth of July Buddy!!!!! I hope that you have a great time watching all of the fireworks! You deserve it. :)~ I will talk to you all later and have a great fourth of july. xoxo jen :)
CommentsHi everyone! HAPPY FOURTH OF JULY!!!!!!!!!!!!!!!! We are celebrating with Payton at the beach so I cannot write for long but I HAVE A LOT TO TELL, so I promise as soon as we get back I will fill you all in!! Love to everyone! And have a safe and fun holiday!!
CommentsDear Payton, Hello! My name is Eric, and I am now 12 years old. I live in Tennessee. When I was a baby, I was very sick with a heart problem. I was hooked on monitors and was in and out of the hospital. The doctors didn't think I would live, but I proved them wrong! So hang in there, Payton. You are a big boy and Jesus loves you and has a special purpose for your life and for my life too. Thats what my mom always told me. My little brother Justin likes to watch Toy Story too. He likes Buzz Lightyear. Justin and me are both homeschooled. Justin is 9 years old. Take care and be happy Payton. We all will pray for you and we all love you! Eric and Justin
CommentsHi Freemans, Hope you had a wonderful night watching the fireworks,what an awesome idea!Will give you a holler when I get back from R.I.(keep your fingers crossed all goes well)Love ya,Shan xoxo
CommentsHey Payton!! Thanks for letting me watch Shrek and fireworks with you. I had a great time :)~ Tell mommy and daddy that i say hello and tell them thank you for me. I cant wait for your party it is going to be sooo much fun =) I will come and visit you sometime this week and we can watch another movie together. xoxo Jen
CommentsHi everyone! Hope your holiday was great!! Ours was very nice--we stayed on the beach with Payton just for one night so that he could watch the fireworks--they are always a double edged sword for him, because he loves the lights, but HATES the noise.. We had a nice room and a decent view, but Payton seemed hot and a little disturbed by most of the noise.. He did seem very happy to see the lights though so it was all worth it.. As long as Payton gets to see different scenery he is happy!! OK... Paytons Pals!! We are having our first board meeting in July and we are ALL VERY EXCITED about this!! I think we will all feel very good knowing we are really making a difference for some REALLY needy children.. These kids deserve to have the absolute best quality of life we can give them, being they have so little time and are so limited at what they can do.. So, we have a lot of work to do, but we are all looking forward to it!! Our first project as Paytons Pals will be the car wash at the end of this month and then the garage sale in August!! We are planning another car wash before next years event, and of course do candy sales at work (great idea SHAN!!--we have already raised a couple hundred dollars just in selling candy for a dollar!!!!) We are looking for a couple ideas for projects so if you have anything that you think sounds interesting LET US KNOW!! ............MEDICAID............... Ok, on Tuesday I went to DCF.. This is the Department of Children and Families.. This is where you go for food stamps, etc.. etc.. etc.. Now, I wasn't sure if they were even going to be able to help me, but I got as much of the things off their "list" as I could (birth certificates, current utility bills, bank statements, pay stubs, life insurance policies etc. etc.. etc..-most of which I still haven't gotten back from SSI) I went early to my appointment and I only had to wait about 10 minutes to be seen.. Rueben was a very nice guy.. probably late thirties early 40's.. he was definitely not NEW.. He typed faster than I do, and knew who to call and had contacts at the places he called.. He did not, however, know anything about HOME HEALTH CARE.. And I made it very obvious that that was the reason I was there!! I got a little aggravated at one point and started ranting about how they promote the breakdown of the family and how Long do they think my husband and I going to last when they practically force us into splitting just to get the care we need for Payton.. Well, I don't know if that was good enough for him or what, but based on the info I gave him (I didn't have any pay stubs or life ins. policy--they were at SSI) he signed me up for KID KARE.. To be honest with you, I STILL don't know what that means as far as medicaid.. if we are in the system or not, but I think that we are NOT. I think it is just supplemental insurance in case Paytons insurance drops him or doesn't pay for medical care.. Which is nice and we appreciate it, but I left the office with a "medicaid #" that I was unsure of what I could do with.. And NO NURSING. SO, I went straight to SSI.. I asked for GUS.. This was the guy that Rueben had talked to and the same guy that told Rueben that we had NOT been denied, just that they were waiting for more information.. Well, I waited for about 15 minutes, and out comes my favorite lady.. CAROL POWERS.. She says DEBBIE FREEMAN.. I am like oh, great.. here we go.. I walk in and go straight to her desk.. She is looking me up and down, like "why are YOU here, again????" She says, why are you asking for GUS?? Because he is the one that just told the guy at DCF that we were not denied.. She is like oh , ok we couldn't figure it out because I handle this case.. (Obviously if you want to go over this lady's head--good luck) Anyway, I am like, Look... If you just need more info, you NEED TO TELL ME WHAT IT IS, BECAUSE YOU NEVER DID!! SHe says oh yes I did, and I say OH NO, YOU DIDN'T!! SHe did not really want to get into it with me, because I was yelling out all the facts, and she couldn't even remember who she talked to last or what was said.. She kept saying she just got back from vacation.. ANYWAY, make a long story short.. Once I told her about legal aid, etc.. I think she realized that we weren't fooling around, and that we were not going to just blow this off. SHE ACTUALLY WENT SO FAR AS TO SAY THAT ROB TOLD HER THAT HE DIDN'T THINK WE'D BE ELIGIBLE SO HE TOLD HER TO FORGET IT.. I was like, ABSOLUTELY NOT.. HE would NEVER SAY SUCH A THING.. Anyway, I think she started to remember and next thing I know she says, and I quote, ya know, just maybe, and I can't guarantee anything, but just maybe you guys will qualify! OH MY GOODNESS.. GET ME OUT OF THIS OFFICE.......................... I have to drop off MORE information to this office on Monday, but I am hoping that we will finally clear this thing up soon!! WE NEED NURSING!! It will never cease to amaze me, that a child who is determined disabled and obviously needy of home health and medical care should have to wait ANY LENGTH OF TIME, to get the medical care that he needs??? Why has Payton waited 5 months to get nursing care and it is still PENDING!! We DO NOT HAVE IT YET!!! AND WE DO NOT KNOW IF WE WILL!! THIS IS RIDICULOUS!!It scares me to think of all the sick people in this country that just do not have the strength, energy or time to go and fight for themselves, that just go without, or just end up homeless.. I fear that it must happen more than any of us realize... Well, wish us luck and take care of yourselves!!! Love Us
CommentsHello family, Hope all is well.....good luck w/ your medical assistance.....sometimes i wonder about this countries rules & regulations when it comes to that stuff. It's crazy !! Hope you had a happy 4th..sounds like it. I'm working today :( Not used to working on Saturdays, but we must do what we have to. Hopefully i'll see and talk to you guy's soon. Love, Frankie. Oh yea..... Claudia and I are getting hitched Aug,23rd. very small ceremony........It will be family only.....Then off to the Boca Hotel........See you guy's soon. Kiss for you Payton. Me. : )
CommentsGOOD LUCK TODAY DEB WITH THE MUTANTS AT SSI!!!!!!!!!
CommentsHi out there! I want to apologize for my neglect of this journal! I have been SO busy and keeping up with many sma issues has kept me preoccupied and off my journal!! I promise to try and keep up!! Well, we are really looking forward to the party next week!! I hope that he will be feeling GREAT that day and I hope he likes "Lilo and Stitch!" We are planning a meeting with the University of Miami to see what they are working on and hopefully we will be able to help them with research in the future!! The car wash is set for July 21st and the second annual "Paytons Pals" rummage sale is set for August 24th!! (Garage sale!) IF you have ANYTHING you want to get rid of, please send it our way.. Even if you think it is worth 5 cents, it is good!! We'll take it!! We will have baked goods, thanks to Jen Berman and sodas and water too! So, if you are out and about early in the a.m. that day, come on by!!! Well, take care everyone!!! You guys are all the BEST!!!!!!!!!!! Wish me luck at SSI, should be dealing with them today or tomorrow in the a.m. Could not get info from the accountant yesterday.... It is always such fun to go there and hang with Carol. :0) Talk soon Love Deb
CommentsJust wanted to say God Bless Payton, and all of you who surround him and support him with so much love. Just know that God is watching over him, and you are changing the lives of many babies with your hard work. You and the cause will be in my prayers, and my three year old's prayers, as well.
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CommentsHELLO FREEMAN GANG, JUST CATCHING UPON THE JOURNAL, WOW WHAT ENERGY YOU ALL HAVE. SPOKE TO ROB YESTERDAY AND HE SOUNDED TIRED, YET AS STRONG AS EVER, VERY INSPIRING TO SAY THE LEAST. CAR WASH SOUNDS FUN, I WILL GET MORE DETAILS AT THE B-DAY PARTY CAN'T WAIT, I GET TO PLAY HOOKIE FROM WORK WITH THE FREEMAN'S (I NEW YOU GUYS WHERE A BAD INFLUENCE!!!!! HA HA ) ANYWAY KYLE AND I LOOK FORWARD TO SEEING YOU GUYS, SPECIALLY PAYTON LOVE GARY
CommentsHey Guys, Can't wait for the b'day party! We never made it to see 'Lilo & Stitch', so I'm glad we'll get to see it with Payton. My husband will also be playing 'hookey' for a couple of hours from work to be there. Isn't that nice? See Payton, you are one special little dude. We all want to hang out with ya. Hope all is well. Take care and see you soon... Anissa
CommentsOh, I went on 'Payton's Pals'. It's gonna look great!! Can't wait until it's fully up and running. By the way, the 'thank you' that you sent out was nice. You all looked very good. See ya...
CommentsHAPPY BIRTHDAY TO YOU... HAPPY BIRTHDAY TO YOU.. HAPPY BIRTHDAY TO BABY PAYTON HAPPY BIRTHDAY TO YOU!! Hey buddy your two!!!!! I am so happy :) I hope you have a great birthday and i cant wait for your party!! I love you!! xoxo Jen
CommentsHAPPY BIRTHDAY SUPER TROOPER!!!!! HOW FAR YOU'VE COME! AND A WHOLE LOT MORE LEFT! HOPE YOU GET ALL THE PRESENTS YOU WANT AND THEN SOME. YOU DESERVE IT PAL.HAVE A GREAT DAY THIS IS YOUR DAY!OH AND I CANT WAIT TO SEE LILO & STITCH, THANKS FOR HAVING ME, I PROMISE ILL BE ON MY BEST BEHAVIOR.ONCE AGAIN HAPPY BIRTHDAY PAL. MICHAEL MURPHY.
CommentsHAPPY BIRTHDAY! TO THE MOST COURAGEOUS SUPERHERO OF THEM ALL!! ...PAYTON FREEMAN (AGE 2). I LOVE YOU ....GRANDPA
CommentsHAPPY BIRTHDAY PAYTON!!!!!!!!!!!!!!! YOU MADE IT!! YOU ARE TWO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! All the docs said no way, and look at you.. Talking away watching Toy Story like the world is yours!! Well, dude, we are doing everything we can (with a whole lotta help) to make that really come true, so HOLD ON!!!!!!!!!!!!!!! We are working hard on it! THANKYOU EVERYONE for making this a very special birthday and we can't wait to see everyone tomorrow!! If you are able to come and don't know details or directions, please email me right away!! Love to you all!! Debbie:0)
Commentshappy 2nd birthday little man! you have come a long way...how can you lose with parents like yours and your other g-ma who is there always.... i am with you too every day in all of my thoughts and prayers that you will be with us today, tommorrow and forever.....FOREVER is now!!!!!!! I love you................g-ma ROZ enjoy your party......
CommentsWow Payton, you are TWO...hip hip hooray for you!! I hope you have a GREAT day today and always, being two is too much fun! Love, Kalair (and her mommy too!)
CommentsHappy Birthday Payton! I love you very much. Hope you have a great day mister 2 years old. Enjoy the movie tomorrow. Love, Grandma
CommentsHappy Birthday Payton. Have a wonderful day!
CommentsWe just wanted to wish Payton a very Happy Birthday. We knew you would prove those doctor's wrong...Next thing you know you'll be on your first date...Can't wait to see you tomorrow...We love you very much. Love, Aunt Jamie and Uncle Ryan and Cousin Trinity and Cousin Zoe. XOXOXOXOXO
CommentsHAPPY BIRTHDAY PAYTON ! ! ! ! Defying the odds as only a super trooper can. Looking forward to your next birthday. Your Favorite Case Manager, AL
CommentsDEAR PAYTON, JUST WANTED TO SAY HAPPY 2ND BIRTHDAY!! HAYDEN ABSOLUTELY LOVED LILO & STITCH!!! WE ARE SO GLAD THAT WE COULD BE A PART OF YOUR SPECIAL DAY! LOOKING FORWARD TO THE CAR WASH AND YARD SALE. I HAVE LOTS OF STUFF! DEB, PLEASE LET ME KNOW IF I CAN BE OF ASSISTANCE AT ALL WITH PAYTON'S PALS, I'D LOVE TO HELP!! LOVE, JIMMY, LORI AND HAYDEN JAMES
CommentsWELL FIRST I WANT TO SAY THANK YOU TO ALL OUR FRIENDS AND FAMILY WHO MADE PAYTONS 2ND B-DAY THE GREATEST DAY OF MY LIFE SO FAR,WE LOVE EACH AND EVERYONE OF YOU THANK YOU,THANK YOU,THANK YOU,ALSO I WANT DADDIES BIG BOY TO KNOW HOW VERY PROWD I AM OF HIM,THE STRONGEST KID ON EARTH,YOUR THE ONLY PERSON ON EARTH WHO CAN TURN DADDY TO MUSH WITH JUST A LOOK.I LOVE YOU MORE EVERYDAY HAPPY BIRTHDAY BUDDY,LOVE DADDY
CommentsHey Guys, Today was a great success! It was sooo cool. We had a great time. Thank you for making us a part of it all. The t-shirts are great and I can't believe all the cool stuff you put in those bags. I hope Payton liked the movie, too. After all, it was his BIG day! I'm also very glad to have gotten to see you guys. It's not that often that we've seen each other in the last 2 years. But, I'm looking forward to the upcoming and future events you have planned. Take care. Talk to you soon.... Anissa, John, Johnny, and Joey
CommentsP.S.- The only thing I wish about today was that we had more time to really hang out. And, by the way, what the heck did you guys do with all of that cake???!!! Just kidding.....
Commentshey buddy!!!! what a great party!! i had a great time!!! you got soo many great presents!!! thanks for inviting me. i will see you friday!! and tell daddy that his entry was great!! lol talk to you guys later xoxo jen :)~
CommentsHi Guys,Wanted to drop a note of thanx for the awesome b-day party yesterday.What a super idea!! That was such a cute movie(I actually had a tear or two!!).The t-shirts were terrific & the fact that Payton did soo well,didn't hear 1 beep out of the machine,was amazing!Know he's not into crowds or loud noises so I wasn't sure how he'd react-Way to go Big 2 year old!!How will Mommy & Daddy outdo this one?? Love ya gang,Shan xoxo
CommentsDeb,Rob,AND MR. BIG BAD 2 YEAR OLD!!!!! Just wanted to give a shout and a thank you for the awesome party yesterday i had a blast. And i love the t shirt. Great Idea. Hope the BeanBag Chair is ok, if not ill just blame Becky lol.Oh and Shann had a tear or two in the movie? Wow the warrior princess sheds one for Lilo & Stitch who'da thunk it??! lol. Oh well time to get ready for work(first day back in a month pray for me) well ill talk to ya later. Michael Murphy.
CommentsHI EVERYBODY!! Well, the big TWO YEAR BIRTHDAY PARTY was a great success! The movie was great.. All the kids had fun and got to roam around as needed.. Lots of little ones at the party.:0) And, best of all, Payton stayed awake and did not de-sat not ONE time for the entire movie!!! I was so impressed with my big boy and daddy explained to him ALL ABOUT being a big boy!! Paytons is already good at it! Anissa, the cake thing is funny, because it was a HUGE cake and they did not give us any time to eat it, so we took it home and each had a slice (it was pretty good by the way:0)) and then we had all this cake leftover so we had Jen B. take it over to Outback so someone would be able to enjoy it.. SORRY ABOUT THE CAKE GUYS!!! We have heard already some jokes about it...:0) Next year we will sing and do cake in the BEGINNING, so that afterward there is no rush!! Payton really did have a great day and I want to THANK EVERYBODY for being there for us and for him and for ALWAYS being so AWESOME to Payton!! He loved all his gifts and already watched Jimmy Nuetron last night!! Daddy explained to him ahead of time that this is a "Big Boy" movie and Payton watched it! Didn't even make a face (his MO with new movies sometimes) and watched the whole thing!! That is how we know he likes it.. We are already looking forward to next years flick!.................. CAR WASH next Sunday! We are all planning on going out for dinner and drinks that night, so come on out and join the fun! We wash cars from about 9am--12 or 1pm and we have music and sodas, water, and GOOD, FUN people! We will all shower and change and meet back out for dinner, so email me if you need more details! THE GARAGE SALE IS AUGUST 24TH.. I think I may have listed the wrong day last time, but it is on Saturday, August 24th, so if you have ANY goodwill type stuff or even stuff you think is "Throwaway," we will take it! All proceeds will go to help start up Paytons Pals and we should have all our "tax" stuff done by the end of the year (we are hoping much sooner, but no LATER than that!!!!) Our first board meeting will be at the end of this month and everyone is VERY excited to get REALLY involved in helping some sma children and get us closer to a CURE TOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Love to you all!!:0)
CommentsHello world! Well, I just got home from work a bit ago and am very tired! I am VERY happy to tell you ALL that we were approved FINALLY for SSI.. THIS IS BIG. We are finally IN THE SYSTEM. This means that Payton will actually get an emergency meeting and they will determine how many nursing hours he needs and from there we will receive nursing care. THIS is a big thing for me and my family as we will be able to focus more on being parents/grandparents and not AS MUCH on being a nurse/doctor all the time.. PLUS, I will get some much needed sleep and be able to take some heat off Rob too.. ALL GOOD THINGS COME FROM BEING ON MEDICAID.......... This is what they tell us anyway, I will believe it when I see it and I will let you know and keep you updated!!!! Gotta go! Love to you all!! THANKS FOR ALL THE BIRTHDAY WISHES!!!
CommentsP.S. Love you Shan!!:0)
CommentsRight back atcha Deb!! xox
CommentsMiss Deb,Rob,And Super Trooper, THAT IS SO AWESOME!!!!!! CONGRATULATIONS!!!! Its about time one of those rat bast@&#s realized you need some help. But like you said seeing is believing these people have been screwing you around for long enough. Pretty soon were not going to be organizing a car wash but a mass but kicking. (sorry i guess i am in one of my violent moods today hehe) But none the less i wanna say congrats. And cant wait for the big car wash Sunday.Oh well time to go torture myself at the gym. Talk to you guys later. Michael Murphy P.S. i am wearing my Lilo&Stitch shirt to the gym, i figure its a great way to pick up chicks.
CommentsHello everyone,i was so busy with my birthday and my 2nd t.v. shoot that i forgot to call my aunt amy and uncle brian to say hi but most important to say HAPPY BIRTHDAY TO AUNT AMY! i hope everyone will help me out and say happy birthday to her when you say hi to me.thanks everyone, love payton
CommentsHey Buddy!! How does it feel to be two?? I heard that you like your new movies... finally something new to watch with you :) I cant wait until sunday!! Our second carwash!!!! Hopefully this one will be better than the first!! I hope to see you soon buddy!! I love you xoxo Jen p.s Happy Birthday Amy!! You are the best aunt that payton could ever have. I think that he likes watching you laugh at the emperor's new groove more that just watching the movie. :) I hope that you had a great birthday.
CommentsYou KNOW I have TOO much going on when I FORGET to put on the board that we are going to be on the NEWS!!!!!!!!!!!!!!!!!!!!!!!!!!! We were on the 5:00 news on Channel 10 with Kristi Krueger again (just as good if not Better than the last interview!!) today!! IT was FABULOUS!!!!!!!!!!! Thankyou SO MUCH to Amber Statler over at channel 10 for producing such great segments on Payton and sma and for caring about Payton so much!! She really wants to see an end to this disease and a cure for Payton just as much as we all do, and has helped get us on the news TWICE in less than 2 MONTHS!!!!!!!!!!!!!!!!!! GO CHANNEL 10!! We are DONE with all the other stations!:0) If you did not get to see it, I have requested a tape from Amber (my tape is all STATIC!) and I will make a copy for the website again! It really did come out wonderful though and just about everybody at the party was on TV!!:0) How cool, huh?? Payton looked so CUTE and esp. happy when he cracked just the slightest smile right at the end of the segment!!!!WELL, PAYTONS PALS is proudly hosted their second car wash on Sunday, so come on out and join us!! We will have lots of fun! Good night--Deb:0)
CommentsHey there world! Mommy and daddy got to go to the mall tonight and to dinner too! THANKS MOM!!! EXCELLENT day today--we went to west palm to get Paytons RSV shot.. HE WAS SUCH A BIG BOY!!! Only made a face and that was it!! NO DESAT and no crying.. just sort of got choked up a bit and that was IT!! We were so PROUD!! Then, it was off to meet JACOB!! This is Adi and Shaina's son who also suffers from sma type 1. He is SOOOOOOO ADORABLE and SO IS JORDAN!! (Their almost 3 year old!) You make VERY CUTE kids, Adi and Shaina! It was a wonderful visit and we hope to make it there again whenever we are in palm beach! I am SO looking forward to getting together with everyone for our first Paytons Pals meeting!! It won't be long now!! The car wash is set and we are hoping for a mad rush of cars.. THe garage sale will be very exciting as we are already collecting everyones "garbage!" SO, it is OFF WE GO!!! I got a VERY encouraging phone call from our favorite case manager over at FIRSTAT, our favorite nursing company.. AND he says that next week we should be sitting pretty with skilled nursing with plenty of hours!! I still have to call and talk to him and find out the details but just that message alone made my whole weekend!!!!!!!!!!!!!!!!!!! We are really psyched about living a "semi-normal" life again!!!! Take care everyone! Love US..............
CommentsHappy Birthday Amy!!Lots of wonderful people were born in July I see. Glad to hear that this nursing nightmare might end for you soon. Did Channel 10 happen to mention anything about the problems you've been having trying to get Lil'P approved for nursing?? How lucky you are to have such a supportive & understanding Mom.I can't begin to think how this nursing issue would've been fixed if she wasn't here to let you leave the house.How do these other Moms do it??Christ,there's grandparents out there that have perfectly healthy grandchildren who can't be bothered with them yet "Grama-Deb" goes the extra mile each & everyday. A truly amazing woman...obviously the apple doesn't fall far from the tree!! Will speak w/you soon I hope... oh & Rob...no more "alone time" with Debbie unless you get it approved 1st!!! Love you guys..you always make me smile!! xoxox Shan
CommentsHey Guys!! The Car wash is tomorrow!! Yeah!! I hope to see everyone there. It is the Mobil Station on Coral Springs and Atlantic and we will be there from 9 til 1230/1. Come and visit. See ya tomorrow!! xoxo Jen
Commentsi had the pleasure of stopping at your car wash this morning. i hope my donation can help with you and other young friends.
CommentsHey Gang~ Great car wash today!! Wanted to say it was a blast & looking forward to the next one.Sorry we didn't make it to dinner...w/3 kids sometimes things don't always go as planned.Will talk w/you soon! xoxox,Shan P.S. Kendal's fine!!
CommentsHey Guys!! WOW.... what can i say except that this was the best car wash that i have ever done. I would have never guessesd that a carwash could raise so much money. :) I cant wait until the garage sale!! Paytons Pals is going to start off with a bang! I will see you guys later. xoxo Jen
CommentsOkOKOK SOrry I have been BUSY!!! WE RAISED $ONE THOUSAND AND FIVE DOLLARS!!!!!!!!!!!!!!!!! YES, that was $1005 at the car wash!! IS that AMAZING or what??? When people hear what we are doing, they want to help and they become VERY generous!!! THANKYOU SO MUCH TO Jen Berman, Shannon, Kendal, Michael Murphy, Kelly, Kenny and Cory, Robyn, Lori and Jimmy, Hayden, Becky, Kim, Carol, Jamie Joy, Cheryl, Noelle, and Jen Haws for doing such an awesome job WASHING CARS and talking about Payton!!!!!! AND THANKYOU to ALL of you that came and got your car WASHED!!! We love you all and could not be the successful organization that we are going to be and help as many kids as we are going to help, WITHOUT ALL OF YOU!!!!!!!!!!!!!!!!!!! WE KICKED BUTT!!!!! ```````````````````````Now, on to the next project!!!! THE SECOND ANNUAL PAYTONS PALS RUMMAGE SALE will be taking place on August 24th!! Be SURE to gather all your "garbage" and get your neighbors and friends to help us out too!! We need their GARBAGE!! If it is worth 5 cents we'll take it!! Let me know if I need to pick stuff up and we will come and get it, I want to get everything as early as possible to set up prices etc.... Meeting with the UofM this weekend, will update you on that afterward. AND, our favorite case manager is working feverishly to get us the nursing we are entitled too or Payton is anyway, and it looks like we are only DAYS away from having skilled nursing care in our home again!!! WISH US LUCK!!!!!!!!!!! Love to you all the Freemans:0)
CommentsWell, the nursing hasn't started yet, but I am assured that it will begin soon. Not soon enough as far as I am concerned, but at least we are getting it now. I just finished Taebo, the workout of the century (I LOVE taebo) and Payton is watching, Emperor's New Groove (Mommy's favorite) and Robert is working about 23 hours a day.. We went to PT today with grandma, and Payton did wonderful, he is such a big boy... I am STILL finishing up thankyou cards for the benefit and for Paytons party... We are trying to get together all the garage sale stuff.. Paytons Pals is having its' first board meeting at the end of the month.. We are already working on next years date for the benefit.. There is talk of a golf tournament, more car washes, a walk/run.. Have I mentioned we need your help?? WE REALLY DO. We need EVERYONE to help us out in any way they can!! Even just to volunteer at a car wash for a few hours is a HUGE help to us!! We appreciate everything that everyone is already doing and in the coming months with all of the projects we are working on, we will need even more help!! SO, don't be shy! Email me and let me know what you can do, wash cars, make phone calls, pass out donation letters, flyers, collect garage sale stuff, volunteer at a walk/run, etc.. etc... We need all the help we can get if we are going to make a real difference! Thanks everybody and have a great night!
CommentsMiss Deb you know i am down for whatever, just lemme know. Michael Murphy
CommentsHELLO EVERYONE! JUST WANTED TO SAY HOW INVIGORATING IT WAS TO TAKE PART IN RAISING OVER $1000 AT THE CAR WASH! WE REALLY FELT SO GLAD TO BE PART OF SOMETHING SO AWESOME! WE ARE LOOKING FORWARD TO THE RUMMAGE SALE AND I AM GATHERING LOTS OF STUFF FOR YOU DEB. PLEASE LET ME KNOW IF I CAN BE OF ANY HELP WITH PAYTON'S PALS. ANYTHING YOU NEED! I HOPE THE NURSES ARE ON THEIR WAY SOON, LORD KNOWS YOU ALL DESERVE IT !!!! LOVE TO ALL, LORI, JIMMY AND HAYDEN
CommentsHEY PAYTON, I JUST WANTED TO LET YOU KNOW THAT I'M PRAYING FOR YOU. AND THAT I HAVE FAITH IN YOU! HANG IN THERE BUDDY YOU CAN DO IT. I BELIEVE IN MIRACLES,AND I KNOW YOUR GOING TO BE ONE!!!!!!!! TALK TO YOU LATER DON'T FORGET GOD AND I LOVE YOU!!!!
CommentsHey Deb and payton! Well I just wanted to come check out the web site again see the changes. I also wanted to see how everything is. Well have a great day and see you at work. Love always Talia P.S if you ever need anything just ask I'll drop anything to help
CommentsOk, heylo everybody!! Lots been going on.. Still do not have nursing yet. I know, I know, it is past ridiculous, but they have to do all the "red tape" stuff I guess to make sure that we are in need of nursing.. Al told me that they wanted to know why I needed so much nursing now, when I have been getting by with out it??? Like I must not really need it or something??? YES I KNOW THIS IS HILARIOUS. I basically lost my mind with Al, and let him know that whomever or where-ever we need to see/go---just say the word and we(the whole lot of us) with all of our equipment and special needs will go and explain how my family is BASICALLY FALLING APART ON 28 HOURS A WEEK OF NURSING!!!!!!!!!!!!!!!!!!!!!!!! It should be funny to me but it isn't. I had a breakdown the other night and poor Rob who doesn't know what to do, sent me a dozen roses the next day from Payton... He is so good, my mom is so good, my friends are so good. BUT WE NEED NURSING!!!!!!!!!!!!!!!!!!! Payton meets all the requirements and is entitled to these things and it is such a shame that he must suffer and our family must suffer for so long before we can get the help we need. I really fear how many children out there are suffering worse than Payton even, and are not getting the help they need and just slip through the cracks because their parents just can't handle all the red tape or don't have enough knowledge or resources, etc.. I really do, because there are ALOT more sick kids out there than you or me or anyone realizes.. You think it is the exception, and it IS NOT. It is just that sick kids get pushed out of circulation, and usually their families too, so you don't hear from them anymore or about them anymore and their families would just assume not deal with you either, because you could not possibly understand what they go through. BUT THAT IS NOT US. We don't want to be on the other side of the fence. There is no need for that. I must share with you painful pieces of my life, but ya know what? IT is worth it to be able to spread awareness. LOTS OF KIDS ARE SICK AND DYING. NOT just PAYTON. ANY bit of help that we can provide in making people aware of this fact and hopefully inspiring them to help out good causes like "paytons pals" is worth it too!!! We are in this for the long haul, and while we may have a breakdown or 10 it is all good because we don't want to hear about ANOTHER child dying-- another family suffering-- another statistic that nobody cares about or even worse, nobody knew about. Even if the world doesn't step up and DO SOMETHING about sma, at least there will be ALOT more people that have heard of sma because of us, our family and our friends!!!!!!!!!!!!! We love you guys! OK>...............................NEXT.............. What a great day!!! We (me, Jen B., Eileen and Dionne) spent the afternoon at the University of Miami (the rest of our board members had to work), speaking with the director of the genetics lab, her assistant, a grad student, and the directors of research and development ladies. We learned SO much and got to really understand what they are working on and it seems that we will be working on a project together that NO ONE else in the country is currently working on and it IS BIG!! I can't even explain ALL the details yet, but YES, it could very well lead to a treatment for this disease. Unfortunately, it looks like realistically, it could be a couple of years before they actually have treatment for sma, but if they come up with something ALREADY FDA approved then it could be much sooner, so keep your fingers crossed. In the medical "world" we are SO CLOSE with a treatment for sma.. MUCH CLOSER THAN MOST DISEASES. So, we are happy to be working with Dr. Lisa Baumbach, Elicia Estrella and the team over at University of Miami!! THIS is exciting stuff and we are so excited and proud to be involved in the SOLUTION to this PROBLEM.The more awareness we spread and fundraising we do---- the faster this treatment will come.... Love to you all :0) and good night!! We are taking Payton away for the weekend (not far-just to the beach) so I will be back online in a few days. Take care!! The Freemans
CommentsHey Buddy!! I hope you all had a great time this weekend. I am leaving tomorrow night. i will see you all when i get back. i will call you when i get the results from my dr. appt. talk to you all later. xoxo Jen
CommentsWe are Back! We had a great time, but it was extremely hot and WAY TOO HOT for Payton. So, he spent most of his time enjoying a movie in the cold a/c and went down to the beach at night when there was a little breeze! It was nice though, no phone, no computer, no work, etc.. I got THE CALL this morning! We are approved for nursing!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Yeah!!!! AMAZING, huh?? I almost don't believe it but a nurse is scheduled a long shift tonight, so I guess it is finally happening!!! I am thrilled. It was alot of hard work and stress for me and Rob but after 5 very LONG months, we finally GOT IT!!!!!!!! I am SO EXCITED to tell you that our FIRST EVER Paytons Pals board meeting will be held tonight!!! There are 10 of us in total and we are all affected by sma very deeply and are dedicated and commited to making a difference!! EVERYONE on the board has ALREADY done so much to help Payton and sma children I CAN'T even IMAGINE what we accomplish together but I am excited and really looking forward to tonight! Take care!
CommentsP.S. Jen we are thinking of you and keeping all positive energy going towards you and your results!!YOU MUST STAY CANCER FREE!!!!!!!!!!!!!!!!!!!!!!!! We love you very much! :0)
CommentsHello out there!! Just got home from work a little while ago.. Another busy night at the Outback!! It is so great to get out and go to work, but it is always good to come home!! Payton had his second visit today with a TEACHER!! She is fabulous too!! Really gets involved with him with shapes and colors and is really almost helping him vocalize some things!! He seems to enjoy having her here and the attention of course and as time goes by and he gets used to her he will probably get excited when she comes and upset when she leaves!! Just like Ilene!! ~~~~~~~~~~~~~~~~~We had our first EVER Paytons Pals board meeting last night and it was WONDERFUL!!! We spent two and a half hours going over details about our fundraising events, how we want to spend the money we raise and shared ideas from each of the board members about what we have already done and what we plan on doing.. We also decided on a specific project that we want to work on with the University of Miami involving carrier testing and basically setting them up to be able to do carrier testing and our goal is to sponsor "sma carrier testing day" where we pay for 'so many' carrier tests and people can come and test for free that day!! ONE in 40 people are carriers!! This will help to spread awareness and that in turn will make people more likely to donate to our cause and help in the search to find a treatment for sma and of course THE CURE!!!We hope for local if not national attention for this project and I will get more detailed about it later, but this is the idea of what we want to do with UM.. We also will be spending money on LITERATURE!! Packets we can pass out or mail out to newly diagnosed parents, doctors, medical professionals, etc.. to educate them about sma, so that we can get to the point where parents are not made to feel like NOBODY knows what sma is.. etc... We also plan on giving money to research, projects that we feel are very close to finding a cure/treatment for sma....And, last but not least, we will be purchasing "quality of life" items for these children.. Insurance doesn't even want to pay for life sustaining equipment or nursing, etc.. so trying to get them to pay for something that will improve the quality of life for an sma child is a joke.. We want to make a difference in these childrens' lives, because if they are only going to be alive for a short while, shouldn't they have the BEST life possible???? AND shouldn't they have TOYS that THEY can play with??? We want to make these kinds of things happen for kids that wouldn't have them otherwise.. High-low chairs, switch toys, pillows made special for sma kids for comfort(they can't move so they tend to get very sore and can even get bed sores and rashes if you do not constantly turn and move them) These pillows are great and sma moms are sewing them and sending them to each other when possible...AND lots of other things that we figure will make a difference in the life of an sma child! ......................... I would like to say a very special thankyou to all of you that have volunteered to help with our projects for Paytons Pals.. I very often feel that people may get "sick" of us and our needs with fundraisers, and I try very hard to not make anyone feel pressured to help and always leave it open for ANYONE to come out no matter what we are doing and help us and I want you all to know how very much we appreciate your help!! We will find a treatment for Payton and all these children because of YOUR hard work and dedication! Believe me, I could not do ANY of this alone and you have all been so GOOD and basically made sma part of your own lives and spent many hours and many dollars to help change things not just for generations to come but for those that are living with and suffering from sma NOW! We love you ALL!!! And a HUGE thankyou goes out to all of you that volunteered to be on the "board" of Paytons Pals!!!!!!!!!!!!!!! You could really feel all the enthusiasm and passion in the board members and I look forward to future meetings and projects!!!!!!It is such a BIG COMMITMENT to be on the board and I know I can rely on each and everyone of you to be there not just for Payton, but for me and my family... We have been through alot and some days I really don't know how long I can keep on going like this, but because of you guys and the extra mile (millions of miles) you have gone, I know I can continue and I KNOW WE ARE GOING TO KICK SOME BUTT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! LOVE TO YOU ALL!!!!!!!!!!!!!!!!!!!!!!!!!!
CommentsYou're right, Deb. Awareness is key. This coming Fall I will have almost 80 students, and I assure you they will all know about SMA before they leave my class. What does SMA have to do with World Lit? Well, I'm not sure yet, but I'm pretty sure I'll figure that out soon. We've got to get the word out any which way we can. Big kisses to you, Rob, and to Payton. Tell Pay-pay that Brian has come up with an answer to "Barbara Manatee"--He sings "Hugh Manatee"... get it? He's a shameless punster. LOVE! --Amy
CommentsHi Buddy!!!! I miss you!!! Well i am just stopping in to say hi before i leave for my cruise! :)~ I will come and watch a movie with you when i get back. I cant wait. Love ya Guys!! xoxo Jen
CommentsHello Hello everyone!! Well, it feels like a different house having all this NURSING help, but boy is it wonderful!! We are so thrilled to be back on track to a more "normal" life!! Thankyou MEDICAID. Payton has been great! He spent the day at the "dog party" at Michaels house and had a GREAT time!! He LOVES being out and about, esp. when NO doctors are involved!! We are SO EXCITED with our Paytons Pals project and have already come up with our mission statement, logo, and are currently working on literature and hopefully will have our "birth announcement" ready soon!! For those of you that do not already know, we have a garage sale scheduled for Saturday August 24th, and we NEED YOUR STUFF!! Even if you think it is GARBAGE, we want it!! The more garbage we have, the more money we will raise!! If it won't fit in your car, or it is not convenient for you to get it to me, just give me a buzz or email and I will gladly pick it up!! Thank Kelly Nobles for all of the stuff you gave me yesterday!! It will definitely help us to raise lots of money!! Now that we are official, we will have our own Paytons Pals account, and our newsletters will tell our supporters who we are helping, what projects we are working on, and basically WHERE all of the money goes!! We will also have "Regina's Corner" where Regina will share LOTS of info about sma to parents, etc.. and we will keep people abreast of sma children all over the country.. Hopefully, once things start rolling , we will be able to spotlight one child each newsletter, with their "story" and what they have been through and how they are doing, etc.. We will have pics, etc.. etc.. If you have been part of the first two benefits that we have done with Outback, then you are automatically one of our members!! If were not, and would like to be part of our TEAM and become one of our members and receive our newletters, etc.. then you must mail a donation to: Paytons Pals P.O. Box 667498 Pompano Beach, Fl. 33066 and you MUST write that you are making a donation to Paytons Pals and that you would LOVE to become a MEMBER of PAYTONS PALS!!!!!!!!!!!!!!!! ANYONE that makes a donation from here on out to our organization, will automatically become a member!! If anyone has ANY ideas, thoughts, concerns, please let us know!!! We want this to be a team effort!! We will make the biggest difference and be the MOST successful if we all work together!!! THANK YOU EVERYBODY!! YOU HAVE ALL BEEN SO GREAT!!!! Love to you all and goodnight!!
CommentsHi Payton! Tell your mom that I volunteer to proofread/edit any written materials Payton's Pals produces. There's nothing like typo-free literature to give your org that professional touch! xoxo! --Your favorite aunt!
CommentsThanks Amy!! We hope to have some impressive sma literature!! Our nursing is coming along nicely, but our DME company nightmares have just begun.. NOTHING compared to the nightmare of nursing issues, so we will get through, but just a real pain that with each step, a whole new roll of red tape falls into my lap.. Payton is doing great. He is looking super cute lately in case you don't already know..:0) We only have 4 spots left for the "crop-a-thon" so be sure to let me know right away if you are interested!! Nov. 8-9....We are also coming up on our garage sale scheduled for Saturday August 24th... Our pile of "garage" stuff is GROWING, so please let me know if you need pick up!! Anissa, I got your email today.. I don't know if you recieved mine because my computer had a BAD virus and we have been down for a couple of days, but THANK YOU for all that you are doing!! Let me know if you need us to pick anything up! Rob has a BIG pickup truck that will fit a ton of stuff! ALSO, the Bloomingdales' day at Town Center is scheduled for November 16th.. You go, you shop and a certain percentage (not sure how much yet) goes to Paytons Pals!! You MUST have the invite for them to give us credit, so be sure to let me know if you would like to shop there that day--we need to have at least 75 people shop there with one of our invites to get the credit!!!!!!!!!!!!!!!!!!!!! I am guessing right now, but it is either 10 or 20 percent of everything we buy from them.. I am just going to do some Christmas shopping there.. THANK YOU SO much for all of the birthday wishes AND great presents that Payton got for his MILESTONE birthday!! He has enjoyed almost everything now and there were some pretty creative gifts for an sma kid!! THANKS so much for everything!! He seems esp. impressed with his rainmaker and his projector and his mobile and he likes staring at the bean bag and wagon that I STILL have to exchange!! The wagon we just need a bigger one and the bean bag I just need one that is firmer to hold him!! If there is anyone who has moved recently or thinks that I don't have their address let me know!! I am making up a master list of addresses for Paytons Pals and I want to make sure that i have everyone on it! I must go because Paytons beeping machine is going off but take care!!
CommentsAs Debbie mentioned, the Bloomingdale's Holiday Charity Shopping day will donate 10% of our group's sales to Payton's Pals, so be sure to mark your calendar to do your holiday shopping there on Saturday, November 16th (at the Town Center Mall location in Boca Raton.) Bloomingdale's will also host an in-store reception for our 75+ guests w/ holiday tastings and beverages, provide personal shoppers by appointment and offer complimentary gift-wrap, monogramming, etc. How could you go wrong with that??? We will be sending out invitations for this very special shopping event shortly, so if you are not already on our mailing list and would like to participate, be sure to e-mail your address to Debbie so we can get you an invitation!!!
CommentsHey everybody. Payton seems to be a little under the weather, so we are watching him closely, he is wearing bipap almost 24/7 and he is getting regular neb treatments along with in/ex every few hours... He is NOT HAPPY when is sick or getting sick, but hopefully he will back to his normal self very soon. If not, we will likely have to get him on antibiotics/sterroid or one of the two. We are working very hard to make him feel better and clear out his chest, secretions, etc.. Take care and good night.
CommentsHi Payton! I hear you're not feeling your best? Do you say "achoo-moo-moo"? Then I say "boo-hoo-moo-moo!" Feel better, Pay-pay! I love you-you! :-) LOVE! Amy
CommentsI used to say that time goes by faster as you get older, but little did I know!! I literally feel like whole weeks go by without a second to sit down and chill.. I guess they do! Well, this week went by faster than they usually do. I think with all of the nursing and therapies that Payton is getting now, it makes the days go by even FASTER than they were. Well, he seems to be a LITTLE better than yesterday, but definitely not himself and STILL needing the bipap 24/7. He is just running better numbers than yesterday, thank goodness. He is supposed to go to Kyle's 3rd birthday party this SUnday and I am not sure if he will be able to make it, but it doesn't look good so far... Occupational therapy FINALLY started today and we like her alot. Payton really liked her and I am guessing she will be his favorite because OT doesn't stick anything in his mouth, nor does she stretch anything out! She does however, give him a GREAT hand/finger/arm massage which he DID NOT complain about!! HOW FUNNY IS THAT???!! He is SO CUTE, and kept staring at her and was obviously happy with the massage! She will also be helping him with fine motor skills and getting him to work with the switch toys that we have ordered for Payton. THESE are toys that Payton can actually PLAY with!! Unfortunately you can't get them at TOys R Us or anything and they are expensive, but it is worth it to see him play!! If he is able to maneuver these toys and switches they will surely recommend that he get the computer where he uses a switch instead of a mouse and THAT would be FABULOUS!!! My house is FULL of garage sale stuff and am labeling and packing boxes full so that we can be better organized! I am getting a "garment rack" to hang clothes on, so if anyone knows where I can get one cheap or used or whatever, please let me know!! They were SEVENTY dollars on line and that is TOO MUCH!! I really want one though cuz the clothes situation at our last garage sale got out of hand and unfortunately people have no qualms with picking up your nicely folded clothing and throwing it down on the driveway in a heaping mess! If anyone would like to do the crop-a-thon but can't do 24 hours.. And would like to 12 hours in a split shift with someone, please let me know!! I know that some of you cannot possibly do 24 hours straight (me included) and if Dionne has any space left toward crunch time, we could keep the 12 hours shifts in reserve!!! I went and bought a "scrapbook" at the "scrapbook den" today and it is an AMAZING store!! If I were disgustingly wealthy, I would #1 Buy a cure for sma and #2 Have that store in my basement of my grossly magnificent house!! It will be SO MUCH fun to crop away and I am looking forward to making pages for our "paytons pals" scrapbook that I just got!! If anyone knows someone that would like more info about Paytons Pals, etc.. please let me know!! I have literature in the works and a FABULOUS 4 minute video on us and what we do in the spring!! Maria and I have been talking about a "santa's workshop" type thing in the fall--like maybe making stockings, ornaments, etc.. If ANYONE has any ideas or is crafty at all, let me know! We are just now in the works of discussing this project and welcome any advice/ideas, etc.... Well, I think that is it. THANKYOU SO MUCH TO ALL OF YOU that have already and are giving me your garbage/garage sale stuff!! We REALLY APPRECIATE IT!!!!! Our birth announcement for "Paytons Pals" should go out in less than 2 months and our first newsletter should be on its' tail!! Please be looking for new stuff on our Paytonspals.com website in the next couple of weeks, and have A GREAT DAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Commentshey Deb,Rob,and Super Trooper, hey guys just dropping in catching up i went to Orlando for the week so i missed out. Hope Big Dog is feeling better and everything is going nicely. Ive started getting some dtuff together for the garage sale and we have alot, ill talk to you about when to drop off/pick up whatever. And i dont know what this crop watch thingamabob is but ill ge the ifo for you but i am up for anything you know that, so lemme know as soon as possible. Well i am gonna go shwoer up and try to pick up a shift at work, ill talk to you later guys. Michael Murphy.
CommentsHey Buddy!! I am back!! i missed you soo much :) i cant wait to see you. i have a really cute present for you from one of the islands that i went to. well i will see you later. xoxo Jen
CommentsWell, it is late and I should be in BED, but I just wanted everyone to know that Payton is doing SO much better!! He sats are back to normal and he looks like his old self again. It is very nerve-wracking when he is not well, and we are thrilled to tell you he is WELL again!! Take care everyone and good night! P.S> Welcome home JEN!! Hope you had fun on your cruise! We missed you!:)
CommentsHey guys, We are glad to hear that Payton is feeling better. He's a strong guy and we know he can make it through anything!! We just wanted to let you know that Next friday (aug 23rd) we find out what the baby is (hopefully). We will see you guys at the garage sale. Love, Jamie, Ryan, and the girls.
CommentsI have been offline AGAIN for a few days now. But, we are back up again, and Payton is doing well, so things are good. Nursing is going well. Therapies are going well. Payton especially likes Occupational therapy--and all his massages:) I have REALLY GOOD NEWS!!! WE ARE OFFICIAL!!! We have a tax ID number and everything!! We can finally start getting serious with our organization and we are all so EXCITED!! Thanks so much to ALL of you that have helped to make this happen!!! We are going to ROCK THE HOUSE!!! Please check out paytonspals.com as we are working on setting up the website!!! HAPPY BIRTHDAY JEN BERMAN!!!! HOpe you are having a BLAST in the keys!!!!!!!!!!!!!!!!! We love you very much and hope your 18th is WONDERFUL!!!! Talk soon--Deb
CommentsHeylo everybody!! We would like to send out a special Happy Birthday to Jackie Mailhe who is in Argentina but celebrating we are sure!!! HOPE IT WAS GREAT JACKIE!! We heard from Jen in the Keys and she is having a blast too!! Lots of birthdays going on and lots more coming.:) 4 Spots left in our "crop-a-thon!" Sign up now before it is too late!!! To participate, just for those who don't know, you must raise at least $200 from outside sources and then we will crop from November 8th (6pm) til November 9th (6pm).. We are sponsored by the scrapbook den and they will host our "scrapping!" Also, food and drink will be donated and brought in the entire event, and if anyone wants to sleep, they are more than welcome!! We are trying to get some sort of press coverage and hoping that they may something about what the girls are doing the day of the event and why and WHO we are!! We are very focused at first on getting the word out about Paytons Pals so that we can SPREAD AWARENESS about sma!! We figure if we spread ENOUGH awareness, people will become familiar with sma and Payton and all of PAYTONS MANY PALS!! and people are more likely to donate and get involved when they are familiar with something or some cause. SO, speading away we go... Payton is doing great. His teacher couldn't come today as she is not feeling well and doesnt' want to chance giving anything to Payton.. BUT, speech will be coming today and he likes Ilene..:) Payton will be "casted" later today for some sort of braces or "stint" type thing for his feet. I will learn much more later today and have all the details but this is to prevent him from getting such bad contractures in his legs and feet. To try and keep him more flexible in the hips too. We will see. GARAGE SALE NEXT WEEKEND. Please get your stuff to me asap. I am labeling and boxing and organizing and I want to get as much done ahead of time as possible!! THanks everybody!! OH, also, HAPPY HAPPY BIRTHDAY TO NANCY TOO!! We had dinner at Michele's house on Tuesday and dinner was GREAT and we all had a wonderful time celebrating Nancy's 50th birthday!! OOoopps, I mean 38th!!! Hope it was a great day NANCE!! Take care every one and I will update more later. Gotta go!
CommentsIt is amazing to me how much each person suffering from sma differs in their abilities, their strengths, their weaknesses, and the levels of such. Sometimes I read about kids with sma doing things that Payton could NEVER do and I am so amazed. Payton is VERY well taken care of, he "eats" a special diet, he recieves breathing treatments to help clear his airways, he wears a bipap probably 12 hours a day, he is suctioned regularly, turned regularly, given physical, occupational, and speech therapies, he works with a teacher twice a week, he is being fitted for AFO's, he receives an RSV shot every 30 days, etc. etc. etc. etc. etc. etc. etc. AND YET, I will read about some child that can lift their legs up or turn their head slightly or even LIFT their head slightly, or lift their arm up, even slightly, and I am AMAZED. Maybe I am jealous... Sometimes I wish so much he could do all those things and more, and sometimes I just wish he could smile. I will tickle him in the morning while he wears his bipap and it is the only time he has enough strength to let out a howl. It is him laughing. But there is no smile cuz he can't lift his cheeks. This kind of thing can really get to you after a while. Watching someone suffer is different, like if he were in pain. I think I could not handle that AT ALL. But, watching someone you love more than you love life itself not be able to do ANYTHING AT ALL is really really difficult to say the least and then to do it for 2 years is BEYOND. I can't even explain it. I guess it would be called DRAINING. Draining to constantly deal with all the ridiculous RED TAPE to take care of my oh so fragile baby, and then at the end of the day, when I put him to bed and he is so sweet and happy--when I should feel satisfied and good that I worked so hard for him and was such a great mommy and that the light of the end of the tunnel is here or coming... AND IT DOESN'T. AND THAT SUX. FOR ME. FOR ROB. FOR OUR FAMILY AND FRIENDS. FOR PAYTON....Being a mom is the MOST important job I have ever had--ever will have. I treasure my role and take it very seriously. I am to protect Payton from ALL things that are not good, and while I do ok, I CANNOT stop sma from killing my son. Imagine that and if you have a child you will understand that this is not right. I will NOT sit back and take a beating with this. I WILL do whatever I can for as long as it takes to make sure that Payton is oblivious to the BS that goes on around him. I just hope I don't have a breakdown in the process. Good night.:)
CommentsHey Guys!! I am home!! I had a blast in the keys!! Deb you are doing great!! I dont think that you could try any harder and still accomplish all the other things that you do :) You truly are a rolemodel for many sma moms out there!! or should i say postermom he he :)~ I will talk to you later and we will go over what goodies we are going to make for the garage sale :) love ya guys! xoxo Jen
CommentsAhhhhh Miss Debbie~ With everything you've gone thru & everything you continue to go thru on a daily basis~ wife,job,Mom,bi-pap,suction,feeding, appointments, people constantly in & out of your house at all hours,endless phone calls,e-mails, payton's pals,fsma & the countless other things you do on a regular daily basis you're bound to get beat up & tired. You're a terrific and amazing woman don't EVER forget that. The awareness about SMA that you alone have brought to endless number of people~ just by being YOU~ is outstanding. Think about it if you were the type to sit in & have pity parties, the oh woe is me type~ how would anyone of us have ever known about Payton & SMA? You're outgoing friendly nature draws people to you, you've stood up for yourself,for your son & for SMA and said wait a minute gang something isn't right here. Something needs to be done to change this. These children shouldn't be dying. You have set such an example for EVERYONE ~ not just the families suffering from SMA directly~ but EVERYONE. Every person who stopped at the carwashes, the garage sale those aren't people who knew you & SMA. But now they do. Each person you come in contact with now has a little piece of knowledge & understanding about Payton, SMA & what needs to be done. If you're not too tired you yourself need to stand up look in the mirror pat yourself on the back & say "WAY TO GO!"...look at-REALLY LOOK AT- all you've done already. It's overwhelming isn't it! It's okay to get tired, it's okay to breakdown ~ sometimes that's just what is needed to make us stronger. To make us want to get back up & fight a little harder. You have the backing of sooo many people please know we're all here to pick you back up, to give you some strength, to close the blinds & let you re-coup when you need it. You're not alone with this & although I don't personally live with SMA right inside my home I do live w/it because it directly affects you & you my dear are one of the most important parts of my life...a close & wonderful friend. I'm here 24 7 for you for whatever...a hug, a cry, a board to bounce things off us....ANYTHING. I luv ya Deb & it really is okay ..... believe it or not you are only human. xoxoxo Love, Shan
CommentsMan, if you ever need to say anything and you dont know how to just ask Shan. She definitely but to words everything i wanted to say but couldnt. :) Cant wait for saturday. xoxo Jen
CommentsWow. THANKS Shan & Jen. I don't breakdown often, but when I do, I feel TOTALLY overwhelmed. Just completely defeated. It is ugly for me when I get down. I am feeling much better but I am not totally back to myself yet. Payton is not himself yet either and I am guessing that is why I'm not. When he isn't good, I tend to be the same. Take care everyone and goodnight.
CommentsWOW! Everything Shannon said - I second that! What an amazing way to put it into words! Debbie, you are an amazing human being...and you will bounce back! Thanks for being such an inspiration to me!
CommentsThankyou Dionne, and thankyou for all your garage sale stuff too!! TONS of stuff I should say, and thankyou Ryan and Natalie and Jasmine and David too!! We know from past experience that baby items, esp. bassinet, car seat, high chair, etc.. type stuff go very quickly at garage sales! We have a ton of work to do, labeling and getting everything ready for Saturday. Plus Jen and I are baking brownies, muffins and cookies for Saturday and we will also have soda and bottled water.. Payton is having major stomach issues now, so he is pretty much miserable and it is so upsetting for us, because we want so badly to make him feel better, but he is just so uncomfortable and constipated, and just plain not happy. He has been on bipap pretty much 24/7 and taking some pain medication for a little relief but it doesn't do much good. I am hoping he gets a good nights rest tonight because he must have only slept for a couple of hours last night and refuses to sleep all day today. We had to cancel PT today and may have to cancel again Wed. if this keeps up. Well, time to get ready for bed. Take care and goodnight everyone.
CommentsHi Deb~ Keeping my fingers crossed that Payton is feeling better. And that both you & he were able to get some sleep. Can't they give him some sort of medicine for the constipation?? Something to relieve the pressure & to help him feel better? Talk soon I hope. xoxo Shan
CommentsHi all! I am happy to let you all know that Payton felt better today than he has felt in a week!!Probably OVEr a week now! He did not have to wear the bipap all day and his coloring was better and his numbers were wonderful compared to theother day. I can't even believe it really. Things looked really bad there and he wasn't sleeping. He hadn't slept in 2 days and was looking pretty bad.. But, to my complete relief, and to Robs too, he is sleeping soundly tonight and I can go to bed without that SICk feeling that I've had for a couple days now. Thank to everyone that has been wishing Payton well. Goodnight.
CommentsHello out there. Payton is doing pretty good. He seems to be ok-so far so good. His numbers are good and he is not needing the bipap 24/7 anymore thank goodness! He is watching Shrek and chilling out before he goes to bed!! THANK YOU Jen B and Jen H for ALL your help today!! We spent a few hours labeling and organizing stuff for the garage sale.. What a JOB!! It is UNBELIEVABLE I know but there seems to be some MAJOR construction project right in front of my mothers house this week (and for many weeks ahead I am guessing) I am talking MAJOR and we are just hoping it doesnt' put a HUGE dent in our garage sale! FOrtunately alot of people will read about us in the paper and stop by that way, but we really depend on those "drive bys" and being blocked like we are you can't even see their house from the street!! I think we may try to put a sign or two on their equipment if it is in the way over the weekend. WISH US LUCK. This garage sale has been and continues to be alot of work and moving and lifting and labeling and organizing and I just hope that we are successful!! We are in the works with our logo and are already working on several projects and the SKY IS THE LIMIT!! I have been recharged and am back in action. Payton is officially over his "sick" hump and I can relax again--sort of anyway:) Our neighbors Brian and Polly have also planned a garage sale in our neighborhood for October 5th also to support Paytons Pals!! We were so thrilled to see the flyer in our neighborhood, they are completely doing this on their own to help out with our nonprofit! How awesome is that?? We appreciate it so much, esp. after seeing just what goes into these "little" yard sales! Jen and I will be baking lots of goodies tomorrow for this weekend and we look forward to seeing you all there on Saturday morning and having some FUN!! Talk soon!
CommentsAHHH what's a little construction!! We TOTALLY scored last garage sale & it'll be done once again COUNT ON IT!! With the organizational skills that are backing this baby how can it fail?? Damn I'd show up just for Jens baked goodies (Although I can't believe they allowed Debbie to bake....!)heehee! Anyway...it'll be awesome & Payton's Pals will make lots & lots of money. It's from the heart so how can it not!! Can't wait to see ya'll tomorrow...it'll be nice to shoot the sh*t for a while & hang w/my budz.....I MISS YOU!! xoxo Shan
CommentsThanks for the vote of confidence Shan!! I don't know if you saw it yet, but the construction is a little major. I hope people still see us! What a CRAZY week!! We have been organizing and organizing picking up loads of stuff from people, labeling, baking (Jens been baking--not me!!:)) And basically just working round the clock on this garage sale!! AL, where is my TV????:) THANKYOU SO MUCH to all of you that plan on being there to help or shop or that have already volunteered so much of your time to make this garage sale a success! It is a lot of work but it is fun and we are really looking forward to tomorrow!! I don't drink coffee but I may just have to have a cup--maybe ice coffee--or don't they make yummy coffee now?? dunkin donuts?? Starbucks?? Well whatever it is, I will definitely be a little beat up at that hour!! 5am doesn't ever see me unless Payton and I are having a bad night and are STILL UP!! If anyone wants a wake up call, you better call me tonight and let me know!!! I will take pictures and post them on the website (I swear!) for those of you that can't make it and for those of you far far away!! WISH US LUCK!! Have a great night! Deb P.S. Our baby looks great!
CommentsFan-freakin-tastic garage sale today!! I was so overwhelmed over the amount of items that were donated...it was literally ridiculus....don't you people EVER throw anything out?? Although from the items there today I can obviously say NO YOU DON't & thank goodness for that 'cuz the cash we made was a little crazy too!! Had a great time today... enjoyed bustin' my butt w/Deb & hangin' w/the girls (oh & you too Rob!!)...hoping that the next one might be towards a little cooler part of the year. Nice job gang just wanted to say WAY TO GO!! xoxox Luv, Shan
CommentsI am SPENT, but I want to let everyone know real quick how we did!! First of all, it was AMAZING!! People were asking me if we bought a whole warehouse of stuff. I took pictures so you can see what the craziness looked like... WE BUSTED OUR BUTTS today--ALL OF US. WAY harder today than last time.. We must've had 3X as much stuff as last time (if not more) which meant for an incredible amount of work for me and all of our WONDERFUL VOLUNTEERS!!!!!!!!!!!!!!!!!! I would like to say a very EXTRA SPECIAL THANK YOU to those of you that busted your HUMP today!! Shan, Jen B, My hubby, Michael, Ricardo, Robin, Kelly, Jen H, Dionne, Eileen, Kent, Carole, and of course my lovely mother who basically watched Payton for a week so we could get this thing together. Thank you dad for letting us use your house and for being so hospitable! Thank you to those of you that stopped by during the day to wish us well and pick up a couple things!! OK OK OK SO we raised today, $1560.00!!!!!!!!! NOT BAD HUH?? This is a HUGE amount of money for a garage sale, but I must admit that the work and I MEAN PHYSICAL WORK involved was insane.. SO, we will only be doing the garage sales once a year (our neighbor had planned a garage sale for Payton that we did not even know about for a while, and it is planned for October 5th in our neighborhood at the tennis court--so the "leftover" stuff that we have --and there is LOTS of it, will be there). We will also be doing "drop off days" to prevent us from going crazy driving around and loading and moving and lifting etc etc. This past week or two we all feel like we work for Rooms to go or something... The drop off days we will let everyone know about way ahead of time (probably 3 of them) and that way everyone can drop off big items at Robs shop or wherever we decide to do it and it will make a lot less pain for us:) Well, we are all WIPED out and are looking forward to passing out, so congratulations everybody--WE KICKED A@#!!!! And you all made it happen!!!!!!!!!!!!!!!!!!!!!!!! I had a lot of fun and these garage sales never lack for entertainment value and fun--I think that is why we keep doing them!!:) Take care and now that I have written my quick book I will be back later. GOodnight!
CommentsOOPS.. I forgot to THANK our lovely pregnant helpers too!! THANK YOU LORI AND TAMARA!! :)
CommentsHello everyone!! Yesterday was AMAZING!! It was crazy but wonderful. It took a lot of work from lots of people but it is worth it. Just to let everyone know that the next car wash will be on September 29th. It is the last sunday of the month. Hope to see all of you there !! :) Love ya Guys!! xoxo Jen
CommentsHey out there! Work was a little crazy tonight--school starts tomorrow! I thought it might be slow because of that, but instead it was rather busy! Tomorrow is Ryan Nolans 5th birthday party!! He won't be 5 til September 15th but his family is in town and they are celebrating his birthday together tomorrow!! Happy early birthday RYAN!!! Ryan looks FANTASTIC by the way--so STRONG and SO HEALTHY!! I am STILL sore from the garage sale, so I must getting be getting OLD!! I think we are ALL a little sore still!! Our next car wash is September 29th at the "usual" spot. It is on a Sunday, and we will definitely get pizza and sodas and stuff for all our volunteers!! After the November Bloomies event we will take a break from our fundraising (except for candy sales!!) for a couple of months!! We will ALL need to recharge for the spring benefit! We want to plan a golf tournament and a walk/run for next fall so we have got a LOT of planning to do and don't want to BURN OUT!! Payton is doing GREAT! He looks so great, these kids are so resilient it is really amazing! If you would have seen Payton 2 weeks ago, you wouldn't believe this is the same kid! He looks great and is talking away and just plain HAPPY! Well, another busy day tomorrow so I must try to get bedtime started. Thanks to all of you for caring and continuing to support us in our fight against sma. Goodnight.
CommentsT.V took a little spill off my Dad's truck....needless to say she didn't make it. But I will start to gather other cool things for the next garage sale. Sorry :( AL
CommentsHi everyone. Slow night at work, Paytons doing great. I am getting ready to put him to bed, but wanted to share. I met someone tonight and he asked about Paytons Pals and what it is. He also asked if Payton can live for a long time with his disease. I told him he[Payton] is very lucky to be alive as long as he has. Then he went into a story about how he doesn't go crazy over death because EVERYONE has to die and it doesn't matter who you are, we all die. He also said that I should feel lucky that Payton was born this way because he won't know any better.. I didn't freak out on this guy or anything because I know all too well that different people deal with things in different ways, and that he was not trying to offend me or make light of the fact that my son is dying from a terrible disease that he was born with. People refrain from saying anything at all often times because they are afraid of saying the "wrong" thing. And I think that is even worse. Being ignored sucks. So, even though he may be a little in denial or a little young, or a little ignorant or a little selfish or maybe none of the above I am still glad that he said what he honestly felt. It doesn't hurt my feelings or even upset me.. Really. It doesn't. It does however, make me appreciate EVEN MORE the people in our lives that have BENT OVER BACKWARDS TO HELP US AND HELP PAYTON. Appreciate even more that so MANY people don't have to be Paytons mommy or daddy to understand how wrong this is or how ridiculous or how unjust or that we are not lucky that Payton was born with sma and that he won't know any better when he DIES... and THEN TO GO THAT EXTRA STEP and GIVE OF THEIR TIME AND MONEY, well that is just amazing and all I know is that we are very lucky. Thanks guys. Goodnight.
CommentsThat made me feel sad - really sad. Don't know this kid & yes you're right everyone's entitled to their own opinion...but HOW can you have an opinion about Payton & his life/death situation if you have never even met him?? I think COLD might've accurately described him? That sucked & that is MY opinion. Shan
CommentsHEY THERE. Thanks Shan. I started to think I may have been a little rough on him. It is hard sometimes to be objective when I am in the middle of this whole situation, but I think I have remained fairly sane, against all the odds, and I do believe that no baby should be born into the world without a fighting chance and CERTAINLY not without SOMEONE FIGHTING FOR THEM. Fortunately for Payton and sma kids like him all over the world, there are a TON of people fighting for them. Payton just had OT. HE LOVES OT. Marilyn is good with him and of course he loves the "massage!" We have pt also today and we are also going to do some Paytons Pals business today and tomorrow--we are currently looking into pricing and details to do a golf tournament next September so if anyone has any info or details for me please email me!!! THis should be alot of fun!!! Nursing is going great by the way, there are always kinks in scheduling and people that don't work out like with any job, but overall the change has been wonderful and giving me time to SLEEP and some time to take a shower and actually get some things done during the day. THank goodness. I am also still looking for one more or two more garment racks if anyone comes across any, and we will need volunteers at our car wash September 29th (it is a Sunday!).. TTYL Love Deb:)
CommentsHey Deb, Rob and of course Payton just reading up to see how your garage sale went and to see how Payton is doing these days. Congratulations on a very successful garage sale Wow! I am so glad to hear Payton is doing better these days as well. I also want to thank you and Rob for helping out with the T-shirts for our tournament, Deb for volunteering Rob and Rob for doing this for us, Thank You! I also want to tell you I would be happy to send you any information on what we do for our golf tournament if you think it might help you, just let me know. Samantha (sma type 1) sends lots of hugs to Payton and she loves his web site and pictures.
CommentsHey out there! Hi Wanda! NO problem at all! Rob likes to do as much as he can for sma and he is always happy to help! GOOD LUCK with your event!! I hope it is HUGE!! P.S> I would LOVE info about the golf tournaments--we are just now researching the details on this kind of event.. I need ALL THE INFO you have! Thanks a lot Wanda and give a huge hug to Samantha!! Well, we have alot going on today so I must be short--Paytons teacher will be here any time and I must work tonight. Hopefully tomorrow I will be able toget the logos etc.. for paytons Pals and start doing some printing!!:) We are putting together a catalog with "Paytons Pals" wear and will be using a few of our favorite kids as MODELS!!! SO, if you are interested in having your child in our catalog, (and don't live TOO FAR away!!) please let me know!! Thanks everybody and have a great day!!!
CommentsJust wanted to write and say that I had a great time at the garage sale and "man, moving those stoves around were pretty heavy. Next time have more boxes they are easier to do the unloading of the trucks, j/k" Glad you made some dough and hope Payton is doing well. Uncle Ryan, Aunt Jamie, Cousin (no baby name yet), Cousin Trinity, and Cousin Zoe.
CommentsHey Buddy! Just checkin to see how everything is going! :) Making sure that you are being a good boy.I know you are. Tell mommy and daddy to have fun tonight. :) I will come and watch a movie with you soon. :) I will see you later! Love ya!! xoxo Jen
CommentsWow-what a crazy weekend. Rob and I went to see Cher on Saturday night.. WHAT a GREAT show. I love Cher but she really does put on a great show. After being burned by Madonna last year, this was refreshing! We had alot of fun and then, yesterday we took Payton to Michael & Pamela's house in west palm! He had a great time and just LOVES any new scenery. We also took grandma and grandpa and we had a nice break from everything this weekend, no work, and we never do that so it was a real treat. Thanks for having us over Michael and Pamela!! We are making plans to go to Halloween Horror so if anyone wants to go, let me know! We are very excited as we haven't been able to go for at least two years now.. We have a car wash planned for September 29th (Sunday) and we have our coconut key neighborhood garage sale on October 5th so if you were not able toget me the stuff for the garage sale, you can go ahead and drop it off to me and I will put it in the neighborhood one.. The crop is full.. I am in the process of setting us up to be able to take credit cards and all that good stuff and also getting our print stuff taken care of. We shouldhave our announcement go out in just about month or month and a half or so and if you do not receive it by the first of November let me know right away so I can put you on the mailing list. We have over 400 families on our mailing list so far!!!:) If you have any ideas, suggestions, anything let me know and HAVE A GREAT HOLIDAY!!!!!!!!!!!!!!!!!!!!!! Work should be nuts tonight!
CommentsHello out there!! Payton is doing great and we are working hard on Paytons Pals stuff.. Working working working period, but all is good... I bet Rob a few weeks ago on the american idol show that Kelly would win and he bet on Justin, so we are excited to see just who wins tonight!! I love when life is simple and we can enjoy a tv show or just enjoy each other without a whole lot of stress--when I think back to the SSI nightmare I still get chills... NURSING is going great by the way, and while we are not where we need to be yet, with hours etc.. things are moving along and soon enough I will be able to function a "normal" day for Payton and I... we are actually just about there!! VERY EXCITING STUFF. We hope in the future to make a difference through Paytons Pals for other families so that they do not have to go through all of the same unbelievable red tape and BS that we did! Take care and talk soon..P.S. I would like to wish my wonderful brother, BOB, a happy belated 31st BIRTHDAY!!! And also we would like to congratulate Shannon and Bobby on the news that they are pregnant!!! :) We are hoping for many many neices and nephews to spoil in the years to come, so keep it up!! Also, HAPPY BIRTHDAY TO SHANNON TOO!! :)
CommentsHello!! Congrats Deb! Girls always know how to pick a winner!!! :) Just wanted to say hi.. off to finish my home work :( yuck! See ya guys tomorrow!! xoxo Jen
CommentsGreetings Freeman clan, well just wanted to pop in and say hello.....i havent written in a little bit. Glad to hear everything is going great with nursing we'll have to make a night to all go to Crabby Jacks soon, i hear its alot of fun me personally dont prefer to frequent those types of establishments! Anywhoo i am very excited about lowering my testosterone level at the crop a thon and know it will be fun. well just wanted to stop in hope you guys have a great night. adios, michael murphy. ooo p.s. what were you thinking rob? that justin kids head looked like a chia pet gone horribly astray!
CommentsHello hello!! So great to see you all yesterday~ even you Rob!! Payton looks incredible~ such a fighter~he'll end up a WWF wrestler or something you watch!!Deven's psyched about getting her magazines....thanx Deb!But the girls were ticked I went while they were at school so one day next week we'll be swinging by so they can visit too!! They're totally excited about being models ~ both such big hams!! I can't get over the # of hits on Payton's site....7055. WOW!!! I remember when we got excited over 1000!!! Have LOTS of ideas to go over w/you Deb but I'll need ducktape your mouth shut until I finish telling you or else it'll never get done!!We NEVER seem to stay on 1 subject!!Looking forward to spending some QT together SOON!! I'll bring the tape!! :) Off to get my day started...Love ya, Shan xoxox P.S. I'm still giggling about Rob's comment(s)!!
CommentsHELLO FRIENDS AND FAMILY!! Hey Shan, Jen and Michael.. Lots of action on here lately!! Michael, I have seen your handy work, so even though you will be the ONLY testosterone around, I know you will fit in with our crowd!!:) Shan, you know that he MUST abuse you, he can't help himself.. We tried to see if the lawn guys were smoking your cigarettes but they were not smoking so we let it go.. IT HAD TO HAVE BEEN THEM THOUGH!! Who else could it be???? THANK YOU JEN BERMAN for ALL YOUR HELP tonight with the posters!! They really did come out wonderful and these are now laminated so we won't have to constantly be making these posters up.. WE GOT SMART.:) Well, our literature is coming along and we CAN'T wait to send out our birth announcement,etc...!! I am organizing our mailing list (BIG job) and things of that sort.. Payton is doing great.. Things are VERY busy around here lately with OT, SPEECH, PT, TEACHER, NURSING.. LOTS & LOTS of traffic, but I guess we are used to it, because it doesn't really annoy me.. I just get nervous about so many people being around Payton and just HOPE that no one is SICK around him.. His AFO's should be ready any day now.. We have a crazy weekend (as usual) planned but I wish you all a beautiful and FUN weekend!! Take care..
CommentsWell, A horribly slow weekend at the restaurant!! BUt, it could have been worse, so no complaining.. HAPPY BIRTHDAY TO LEAH!!!!!!!!!!!!!!!!!!!!!!! I am so so sorry that I can't be there to share in the celebration, but I hope you have a blast on your 32nd b-day!! Kisses to Teah too!! Payton is great, all is well on the homefront--talk soon--Deb:)
CommentsHello dear friends and family.. SLOW night at work, and I am home at a decent time for a key shift.. Payton is doing very well.. He was watching a movie with Daddy when I got home and it seems as though they were reading a couple of books while I was at work.. I don't think Payton enjoyed it for very long, but ANY time that he will let us read to him, we take!!! Lots of things going on tomorrow including OT and PT.. I recently heard about a baby that is as we speak intubated at Miami Childrens Hospital.. THat has been finally diagnosed with sma type 1.. She is much stronger than Payton was, and is about 6 months old, but they are giving the family a hard time, etc.. This family flew this child here from Ecuador where they live and they do not speak ANY english so things are VERY difficult for them right now to say the least. They do not have family here (Just in Ohio) and they do not speak the language and their baby (they were just told) is suffering from a terminal disease and will not live very much longer.. We have been trying to communicate to these parents the details about sma and they even went to meet Ryan and Regina and Jim (Regina speaks spanish) and they really want to help their baby but are meeting alot of resistance from the hospital to even FEED the baby!! IT is disgusting I know, but this goes on all the time with sma babies.. A baby in Callifornia just died last week and all over the world babies are dying.. Please help us to spread the word about this disease.. Make sure that the people you love and your friends and family all know about Payton and kids like him and their fight and that these children are given NO CHANCE to live and that we are ALL trying to change ALL THE RULES with sma.. Let's test parents for carrier status, let's give them CHOICES about care etc.., let's EDUCATE the public (and not keep them in the dark about handicapped children), let's change the way the "System" treats these children, let's actually TAKE CARE OF THESE KIDS that are so unfortunate to be born this way, instead of TORTURE their parents with red tape and make them jump through hoops to receive the appropriate care/therapy/nutrition/nursing/equipment, etc... Let's give these kids a BREAK and make their oh so short lives a better time a better place a better LIFE.
CommentsEven after all that i have seen, heard, and been through, i still cant believe that doctors, who are supposed to help people, can be so heartless. If she is stronger than Payton than she still has a chance for a life. i swear that when i become a doctor i will NEVER give a family a hard time if they want to keep their child alive. And when i hear of doctors that dont give a family a choice, it makes me want to work even harder. Deb,you have all ready spread so much awarness, and Paytons Pals will help so many people and one of these days everyone in the world will have heard of SMA, and the kids who have it will actually have a chance for a life, even if it is just full of movies. hey, what kid dosent like movies :) Okay i think i have rambled enough. I love you guys!!! see you later. xoxo me :) p.s. Car Wash September 29th!!! Hope to see all of you there!!
CommentsHi, I am a friend of Grandma Roz, my son and I helped with the fundraiser a few times. We haven't had the pleasure of meeting you, but we love you and carry you in our hearts. I have MS, although I do know pain and suffering, I cannot imagine my child having to go through it. You are strong and courageous and your actions and efforts will lead to great things. I told Grandma Roz on the phone yesterday that we will be there again this year and the next and next etc. Take care and keep up the good work!!!!! Lesa & Dusty
CommentsSEPTEMBER ELEVENTH... I didn't have much time to reflect on this today, believe it or not.. We had speech this morning, then OT, then straight to PT, then Straight to work and it was a very rough night at work... I saw ONE story today though and it was amazing.. A woman in the first tower had walked down over 50 flights and was beat up and just not doing very well--a couple firefighters asked her if she needed help getting down and she said yes. There were several helping her after a few flights because she could not hold her own weight... People were urging them to hurry and they did the best they could.. When they got to the 4th floor something wierd came over her and she said "stop" " i can't go any further" "I can't breathe" They all stopped to rest for a minute and at that VERY MOMENT the building collapsed... All of a sudden one of the firefighters saw light and asked himself " how am I seeing light from a staircase?" Then they all realized the building had collapsed.. At that moment they all had no idea what just had happened, but found out later that the group of them were spared because of the way the building had collapsed and that if they had been one floor higher or even one floor lower they would have perished in the collapsed building.. The way the building fell, the stairwell on the FOURTH floor was sort of cracked open and the building did not fall on top of it!! Is this not amazing?? The firefighters call "Josephine" their guardian angel and had they gone any slower than her or any faster they would all be gone now.. This doesn't make up for well over THREE THOUSAND LIVES but it was a remarkable story nonetheless.. I would like to say how thankful I am for the fact that we live in this country (even when I hate the healthcare in it--it is still better than most places) and for the fact that so many men and women are willing to stand up and fight for it.. And also that I am so sorry for the victims and for their families and SO SO MUCH for their CHILDREN. Goodnight.
CommentsHeylo out there! Hope this finds everyone doing well.. This morning I woke up to the first day of that "coolness" in the air.. You floridians know what I am talking about (that feeling of almost fall that we get that is SO NICE!!) We don't get a winter and not much of a fall so the "cool" air is a nice break for us!! Payton had Speech today and then he spent an hour with his wonderful teacher Miss Kelly! She is teaching him to look in peoples eyes and to communicate shapes and colors!! How WONDERFUL!! He is trying SO HARD to talk too, it is just crazy-I CAN"T WAIT TIL HE TALKS!!!!!! He says "uh-huh" but that is it and not REAL pronounced either.. I don't know if he will be able to pronounce things much better but he should be able to say alot more real soon... TOmorrow he should get his braces and I am very excited to see how he does with them. While we were at PT yesterday Payton was showing off moving his legs like crazy (Payton has NEVER moved his legs--even when he was a baby!!) so it was quite a thrill to see him actually showing off moving his knees back and forth!! He is SSuch a cutie sometimes!! I re-did our Paytons Pals logo cuz it just DIDN'T look right, so I am now still waiting on it to get finished so that we can start printing all of our business cards, birth announcements, and even start printing some literature!! THe baby that is in MCH is still there and is doing so-so.. I hear that the insurance company refused to pay for her to go to NJ to see Dr. Bach (THE doc from the benefit) but they are trying to use his protocol here (Not so easy a task) Regina has been in contact with them and has been trying to help and give as much info as possible and we are just keeping our fingers crossed that she can get well enough to get OUT OF THE HOSPITAL and then they can get her to Dr. Bach by regular flight or even drive and then learn how to take care of their baby since no one else will help them.. It is such a shame that people that want to use a bipap are not even discouraged from using it but told that they CANNOT!! Payton has actually gotten STRONGER lately and we are SO AMAZED!! EVERYONE told us that this is DEGENERATIVE (It is even in the textbooks) and that Payton would get WEAKER!! Than why is he starting to move his legs I'd like to know??? AND his therapist says he has even gained some strength in his NECK! Well, if a baby can get stronger than WHAT ELSE are they keeping from us??? IF they do not want to help an "expensive" baby than they should not be allowed to practice medicine and if ins. doesn't want to pay for longterm care than they shouldn't be allowed to solicit our business.. THEY SURE DON"T HAVE A PROBLEM TAKING OUR SIX HUNDRED DOLLARS A MONTH FOR PAYTON DO THEY... But they deny deny deny DENY. Well, enough rambling for today.. Paytons Pals is going to be SO GREAT and we are just getting geared up for an uphill, but TOTALLY WORTH IT battle.. Thanks everyone for being a part of this team of this family really.. LOVE US:)
Commentsway to go little man!! I am soo proud of you!Keep the motions coming :) your are soo cute.. cant wait to see it for myself. Love ya guys! xoxo jen
CommentsHello out there.. Payton has had a terrible day. He has had a lot of traffic around here lately and I am not sure if he is coming down with some sort of cold, but in the meanwhile we made him cough (as usual) last night and he started vomiting his food (from about a 1/2 hour prior).. We usually give him more time to digest but we were headed upstairs and figured enough time had gone by.. Unfortunately with the first or second round he started spitting up food? And this is NOT supposed to happen. Payton has a nissen (that was done over a year ago) and he shouldn't even be ABLE to vomit so we are a little freaked out about this.. All day today he seems a little uncomfortable but not spitting up and we also gave him a little motrin/tylenol to make sure he was comfortable.. He went to sleep FINE but we are watching him like a hawk.. I am not sure what to do about the nissen, but OF COURSE it is Friday and we couldn't just buzz the doc.. I think we may put a call through if it happens again, but don't want to go into panic mode if it was just a one time thing?? Any sma parents with experience with this, please let me know and email me any info you have. Thanks so much.. We all watched movies tonight and CHILLED with Little Man--He was definitely not feeling so good.. Work tomorrow and I think that is it! If you happen to live in the VIRGINIA area make sure you bring all of your garage sale goodies over to SALON 1220 and give them to Grandma Roz--she is having her first ever rummage sale to benefit Paytons Pals on October 27th!! I believe that it will start in the EARLY AM and go into early afternoon!! GOOD LUCK GUYS AND THANKS TO ALL OF YOU FOR THE HELP!!!!!!!!!!!!!!!!!!!!Love The Freemans
CommentsPayton isn't vomiting anymore since the other night but he does seem to be uncomfortable while we feed him so we have to feed him less food, more often and he finally just was able to come off the bipap this morning after being on 24/7 for two days.. His coloring is better too. He is SUCH a trooper this kid. :) Take care everyone.
CommentsHey out there.. Payton is doing better, we are taking him to the doc tomorrow.. HAPPY BIRTHDAY RYAN NOLAN!! This is a BIG day for you little man (big man really) and we are so HAPPY for you and hope that you had a GREAT day!! We are looking forward to coming over and spending the day with you reall soon, but waiting for Payton to feel better before we do. Kisses and hugs to you RYAN!!!!:) Our calendar is up and running on the paytonspals.com website so if you can think of anything that I should put on the calendar please let me know!! I will add it!! Birthdays, etc.. I can't remember everyones!! Have a good night and wish payton luck tomorrow..
CommentsHi Gang~ Hope all went well today at the doctors. So glad to hear Payton is feeling better. Happy Birthday Ryan!! CALLING ALL IN THE BIZ PEOPLE..... For those of you that are in or have been in the restaurant business I am holding a restaurant pin drive to benefit Payton's Pals.If you have any pins from any restaurants please let me know. Even if you are out of town e-mail me at SBeatty195@aol & I'll send you my address. Just pop the pin or pins in the mail. I'll even re-imburse you your postage. Old, new, even closed restaurant pins. It doesn't matter. I know places like Outback,Friday's & Chili's reward their employees for their efforts with pins. This are the pins I am collecting for the drive. Please let me or Debbie (PJF714@netscape.net) know if you have any you would like to donate to Payton's Pals. Thanx Gang!! This is an easy donation~ no cash, no work...just pins!! Thanx!! I'll let you know how it all works out!! Luv ya Freemans!! Shan xoxox
CommentsHello everybody!! I am thrilled to report that Payton is great! His doc said that he should be fine and that a nissen loosens up after time and unless he is continuing to vomit (which he has not) than he should be fine! THANK goodness. We were very nervous about that whole situation.. SHAN, great idea about the pins! Lord knows I have a TON of pins to donate!! I will put the word out at Outback and collect pins through the outbackers!! It may take some time, but I am sure that we can get a lot of Outbackers to participate for a good cause! I will put a call in to a couple people that live out of state and see what we can come up with! We have made reservations at that restaurant in lauderdale on commercial and federal?? I think?? It is pronounced "buca de pepo" ALL of you that have volunteered at our various events are welcome to come, so PLEASE email me and let me know if you are interested so I can FILL YOU IN WITH DETAILS!!! It should be alot of fun and this is on us, to say THANKYOU to our WONDERFUL volunteers that have given of their time, time and time again for no gain of their own... ALL JUST TO HELP PAYTON AND CHILDREN LIKE HIM!!! You are all the absolute best and I don't know what I would do without you!! See you all soon!!THe passwords on the calendar are Payton and James if you would like to check it out at the paytons pals website!! Take care!!
CommentsHey a little birdie told me tomorrow ~19th~ is Debbie's 29th b-day (AGAIN!!) Just wanted to wish you a freakin' Happy B-day Mama!! You're da'bomb!! Luv ya, Shan xoxox
CommentsHello everyone!! HAPPY BIRTHDAY DEB!!!! I hope that you have a great one.... you deserve it! Payton, you have to be extra cute tomorrow for mommy :)~ See ya guys soon. Love ya xoxo Jen
CommentsTHANK YOU SHAN AND JEN and EVERYBODY for the birthday wishes and cards,etc..I feel like 20 years has passed in the last two and I am sure that enough has gone on in those two years to fill up 20, but I still feel pretty young regardless, and I try very hard to do all the things that would keep me able to give the absolute best care and be the best mom I can be. I am going to have dinner tonight with my immediate family and parents and am looking forward to some cheesecake and MEXICAN food! 32 isn't so old is it????? Take care and have a great day everyone!!:) OH PS HAPPY BIRTHDAY TO MY VERY DEAR FRIEND MARNI WEINBERG ALSO!! HOPE TURING 28 IS GREAT!!!!!!!!!!!!!!!!!!!!!!!!!!!(Can you believe I met you when you were 22?? Or maybe even 21 turning 22!! )
CommentsMiss Deb,Roberto,and Mr.Super Trooper, ok ok ok ok Miss Deb, well happy b day deb, hope the mexican and cheesecake go well and good to hear everything with the super trooper is going awesome. Well i gotta take my sick butt to the gym but i will talk to you later and in the mean time enjoy your big day! Michael Murphy
CommentsWOW!! WHAT AN AMAZING BIRTHDAY!! This was the absolute BEST birthday I have ever had, and I must thank my WONDERFUL husband and WONDERFUL parents for pulling off a COMPLETE SURPRISE party for me!!! Rob had me thinking that we were having dinner at Dave & Busters with my parents for my b-day and that we were going with Michael and Pamela (his partner and fiance) and of course, the baby.. He had already given me my gifts and I wasn't suspicious of Dave & Busters because about a month ago, he took me there for dinner and kept going on about how great it would be to take Payton there.. SO, when there was a night out with Payton, naturally that was the first place he thought of and I wasn't even suspicious... Rob sent out a ton of invitations, and did the rsvp at work, and NO ONE let on to me ANYTHING AT ALL, and when I came around the corner at Dave & Busters I totally expected to see Pamela and instead I see some familiar faces.. I was like "oh my god, he invited some people for my birthday, and THEN, I realize that EVERYBODY is THERE!! I was so surprised I started crying! I really was in a state of shock most of the night, but it was so fun and so wonderful to have SO MANY people come out to celebrate my birthday!! I would like to say THANK YOU TO ALL OF YOU FOR COMING!!! WHAT A WONDERFUL BIRTHDAY! This was DEFINITELY THE BEST BIRTHDAY EVER, AND I GOT TO SHARE IT WITH PAYTON--WHAT COULD BE BETTER THAN THAT??? Payton was a little stressed at first because so many people were around him, but after it settled down a little he got cofortable. We were out very late and when we got home Payton was EXHAUSTED!!! The food was great, the drinks were flowing, the games were awesome and the company was the BEST. I love you guys, and Rob, you are the best husband in the world!!:) Mom, I could not function without you and thanks for doing this for me!!! I think that EVERYONE should get at least one good surprise party in their lifetime!!!! Have a great weekend everybody!!
CommentsHello out there internet friends and family!! Today was a NON-busy day which we have very few of, so that was particularly nice! Went to the orthodontist but that was pretty much it and spent most of my day hanging with little man.. He is still taking a nap so I am going to have to wake him but wanted to say hi, and let you all know that Payton is great!! He is a VERY busy little boy BUT he is doing well and we are thrilled. Take care...Deb
CommentsHey Payton and Family, Just to drop a note to say you are all in my thoughts and prayers. God bless you all as you battle this disease and know that we're all rooting you on! HUGS Cher & Family
CommentsTHANK YOU WELL WISHERS!! AND, thankyou to those of you that have been checking on our paytonspals.com website!! We have alot of work to do on it but it is coming along!! I worked the past two nights, a little crazy at work, but all is good.. Payton is great and he had his favorite massage lady today, Marilyn, his OT!! He has been vocalizing like crazy lately--I am really hoping that his speech comes along soon!! Don't forget the car wash this coming Sunday!! We have alot of new volunteers coming out to help, so BRING ON THE CARS!!! AND, don't forget DINNER AFTER WARDS!!! If anyone is interested in scrap booking?? Please let me know.. We are having a scrapbooking party in November and plan on having a HUGE scrapbooking EVENT with Dionne and Andy's school, etc.. in the coming months.. Details will come soon!! If any of you missed it, Jacob Rappoport had his TV interview on channel 5 news last week. If you go to thestatus.com and then click on check on a patient and then enter rappoport and then enter bubble-groovy you will get to Jacobs' site and then you can also download the interview and watch it! Be sure to say hi to Adi and Shaina... OH, also HAPPY BELATED BIRTHDAY JAMIE!!! I totally forgot and meant to post a birthday message ON YOUR BIRTHDAY!! Hope it was a great one and we hope your pregnancy is going well!! I know it can be rough sometimes, you should probably stock up on TUMS now!! Have a great night everyone and JEN B, THANKS SO MUCH FOR THE PICS!! I love them!:)
CommentsVery nice day today.. Got LOTS done.. Business cards for Paytons Pals.. THANK YOU TO MIKE YOVINO of YOVINO PRINTING for everything you have done for Payton and our organization!!! Also got a phone line for Paytons Pals.. It should be hooked up next week... Also working on my new business at home.. Trying to start up my own company from home.. will pass on details later... We would like to wish ERIKA a wonderful and SAFE trip to Colorado, and of course be sure to CALL US when you get there and get settled!! WE WILL ALL MISS YOU!!!!! And hopefully, you will be back soon!! We had dinner tonight at The Original Steakhouse and visited with our good friend Kelly. It was definitely jam packed and the food was good. We had a great time and THANK YOU MOM FOR STAYING WITH PAYTON!!! You are a true angel!!:) Our car wash and dinner is this Sunday and of course, our volunteer night out!! PLEASE let me know if you need details, etc.. Everyone is welcome that has volunteered their time to help us with any of our benefits/events!!!! I signed the board of director papers today for Paytons Pals and it was quite a high!! I hope you are all as enthused as I am about taking action against sma and really getting the word out there!! We can make BIG things happen and I can't wait!!! Payton had OT today and of course he loves Marilyn, (his masseuse) and he had a great day.. Has been vocalizing and giving LOTS of great eye contact... Nursing has been going FABULOUS (THANK THE LORD!!) and I have been getting plenty of sleep most nights (I still go to sleep VERY late, but at least I don't have to wake up every couple of hours or very early either:)) It is definitely the little things that make life good..:) Well, I must put Payton to sleep but I wanted to wish everyone a great weekend and also let you know that "death to smoochy" is not such a good movie to rent!!! Rob is watching it now and I could not even finish watching it. Good night!!!
CommentsBOY IS IT HOT OUT THERE!! I just got home from our 3rd ever car wash! Everyone did such a great job and while we were very slow and just did not have even half the amount of cars to wash, we made up for it in volunteers and enthusiasm and STILL managed to raise $581.00!!! Not bad, huh? THANK YOU SO MUCH Jamie Joy, Jen B, Kelly and Matt and Max, Lori and Jimmy and Hayden, Tamara, Carole, Jen Haws, Rani, Becky, Talia, Beth, Michael Murphy, Jessica, Lauren, Melanie, Brittney, Kareem, little Jonathan, and his brother and sister, Nancy, Michele, Stuart, and ThankYOU HONEY for bringing us all of that delicious PIZZA!! We had a great time and while football season probably put a dent in our day, we still raised alot of awareness about sma and still did pretty well!!! We are going to do them on Saturday mornings from now on because they seem to be a busier day and we don't want to compete with the NFL..:) Our next car wash should be just before Christmas--I will have dates later.. We are doing our 24 hour CROPATHON from November 8th at 6:00pm to November 9th at 6:00pm.. That will be our next fundraiser and we are starting to work on our benefit with Outback Steahouse in June of 2003.. The date for that event is June 7th if you want to mark your CALENDERS!!! Thank you for your continued support in our cause and if you have any questions about any of our fundraiser, suggestions, or ideas, please email me at pjf714@netscape.net Thanks again and have a great day!! P.S. Payton is doing great--talking AWAY!!
CommentsWow! Even though it was the Slowest car wash yet, we still kicked butt!! I was so happy that we had more volunteers this time :) Cant wait for the nest event. Love ya guys xoxox Jen :)
Commentshello Miss Deb,Rob,And of course Little Dawg(super trooper)well i am about to go hit the rack and get some rest so i can get rid of whatever i have. but anyways just wanted to say i had a BLAST today i always have a great time at the washes and then the dinner was awesome soooooo much fun, thanks again....well i am gonna get going, just wanted to drop a quick line and glad to hear everything is great keep yapping bud! Mike Murphy
CommentsHey Miss Jen and Mr. Murphy!! So so happy you had a good time yesterday!! I really did too, and dinner was great!! When I look around and see the same smiling faces over and over--ALWAYS giving of their free time to help with our cause and being there for us and thousands of others, I can't get over how wonderful it is. I don't know what I would do without you guys and I can NEVER THANK YOU ENOUGH. But I know you know--I just really appreciate you all so much.:) We are planning another "thankyou" BBQ at Tradewinds when the weather gets nice, so I will let you all know!! We are also planning a run/walk for next fall at Tradewinds too, so keep on the lookout for our sign up tri-fold in the coming months, and also our watch for new events in our "actual calendar" on our paytonspals.com website!!! I have been compiling a list for the scrapbook party and Maria has been working on a Santa's workshop tent that we will be doing in Springs by the mall/or at the parking lot of Outback--that is already in the works and we will be giftwrapping, making stockings, and selling crafts including handmade ornaments!! That will be on December 14th (Saturday) so LOTS of good things in the coming months that we are working on!! We definitely NEED VOLUNTEERS!! IF you are interested in volunteering for any of these events, please email me!! We are need of volunteers for the workshop, the car washes, the bloomies shopping day, and the benefit in June!!! Thanks everyone!! Payton is doing great--he is taking a nap and we are having mommy/Payton QT today.. NO THERAPIES!! And mommy is NOT going to work, these days are rare but very nice for us!! Grandma stopped by and daddy will be home early so all is nice and mellow today:) We are going to TRY AGAIN with Monsters Inc later today--he DID NOT like it last time we tried.. I think that it scares him or something because he CRIES when it starts to play. He usually doesn't get THAT upset when he doesn't llike a movie.. SO, we will try again!! Oh, another movie update for you-- 40 Days/40 Nights I thought was terrible--Rob said "eh, ok" and Van Wilder is pretty funny, but has one scene in particular that has me laughing the hardest I have laughed in several years--I am not kidding--THAT FUNNY. Have a great day everybody!!!
CommentsHello everyone! I hope Payton likes Monsters Inc this time, it really is a great movie! Deb, I'm pretty sure I know what scene you are talking about in Van Wilder! I have watched that scene more than once because it is so funny! Glad to hear you are off work so you,Payton, and Rob can spend time together. Take care and get some well deserved rest! I'm so excited about Paytons Pals and our upcoming fundraisers; You know I'll be there! I love you all! XOXO, Jennifer
CommentsI just got home from work and JUST received some horrible horrible news. Jacob Isaac Rappoport passed away early this morning in his parents arms (Shaina and Adi).. We are so so sorry for their loss and continue to support them and their family during this tragic time. Please send emails to shaina@gate.net or go to their personal website at www.thestatus.com Click on check a patients status Then type in rappoport and then type in bubble-groovy You can leave kind words and condolences there. Jacob has now joined a long list of angels to run free and play with in heaven.. We are praying for strength for Shaina and Adi. Goodnight.
CommentsHello everyone. THis has been a very sad time as Jacob passed on Tuesday morning.. We are going to visit with their family next week. His funeral services were yesterday... Another sma family that is from Ecuador visited Payton and I and Rob and my mom today and they were for here for a couple of hours asking questions and learning about sma while their 6 month old daughter is awaiting gtube surgery and a fundaplication.... It is such an impossible position to be in... Type 1 sma. Your child is going to die. There is no treatment no cure you are desperate--you look at that innocent little helpless baby and you know you will go to the end of the earth for them and then some insensitive doctor tells you there is nothing you can do and you should just take them home love them and let them die and then you meet me and Regina and people like us and you wonder?? Should I not let my child die?? Should I use the bipap on my baby and prolong their life? What if they are going to die anyway?? WHEN IS THAT CURE COMING?? Will it be in time for MY child?? Is it right to let them go? CAN I even do that?? Will I be able to live with the guilt now that I know I can do something for them? Can I live like that-doing all that suctioning and feeding through a tube-etc etc etc etc? Can my family? Can I handle all the work?? I don't THINK SO! BUT BUT BUT.. ALL I know is that for us (me and Rob) and thank goodness we were in TOTAL agreement because some parents are not and that is a whole other ball game... But for us, it was never a question of WHETHER to use the bipap.. Payton started to suffocate... We educated ourselves and knew what was happening to his body when it started to happen. We knew when he started to just not be able to breathe. We knew he needed help. He was basically gasping for air. We had the bipap. We used it. And it worked fine and Payton has been healthy and OUT OF THE HOSPITAL ever since. There were things about sma that WE knew that intensivists in hospitals getting paid 4X the amount of money that we make together (to practice medicine and tell ME what is wrong and what is going to happen and what our CHOICES ARE) that they DID NOT KNOW. I am not joking. I can give very specific examples where many docs were just not familiar with sma and instead of telling us that, they pretended to know and to know the progression and how it worked with sma and how we could NOT use a bipap, etc..etc.. etc... Well, since we met a 3 year that used one everyday we knew something was fishy.. ALOT of things sounded fishy. THey made us feel like they were trying to pull a fast one. We were not buying a car, we were talking about the life of our baby!!!!! We knew we needed to question these docs, NOT take for granted that they are assistants to GOD (which some of them like to believe--some even thing they are the real thing) and find out for ourselves what would work for Payton and what would not. SO, here we are 2 years later, with a beautiful, happy, smart, very compromised and very handicapped little boy. We are the family that you never think you are going to be. THAT HANDICAPPED KIDS FAMILY. It is not weird for us though. I don't know why but as hard as it is, we (MY FAMILY) has adapted to the whole situation very well. If anything we have embraced it and told it to watch out because we are STRONG, we are SHARP and we are RELENTLESS. So, I guess what I am saying is that for US, using the bipap was the right decision. It wasn't a difficult decision for us, because Payton comes FIRST. That is a given with us, no matter how much our lives are turned upside down, we adapt to make him comfortable and his safety and happiness come first. That is why I/we HAD a baby. To bring a life into this world, nurture it, love it, give it the best of everything, and protect it from ALL HARM. Sma is one of those things that we fight everyday and still probably will not win against. But, we NEVER lose HOPE and while we are realistic and know that Payton may not benefit from the "future Cure" we know that he will live as long as he can and watch as many darn movies as he feels like and everytime we look into that little face it all makes sense and we know we did and continue to do the right thing for US for PAYTON with Paytons' care. If we were not totally dedicated to him, it would not make sense for us to prolong the sma nightmare. It is a very strange situation to be in and sometimes very scary. We get scared that Payton may actually LIVE for a long time and what will we do when he wants toknow WHEN he will be able to walk/run/play/swim/eat/hug/kiss/talk/etc..... I wanted to give him the world.. NOT explain why he can't swallow or lift up his head. And sometimes we are scared that he WON'T live and how will we go on. I don't think using a bipap or not using a bipap is right or wrong, I just think this disease is ridiculous and parents are expected to make ridiculous decisions for the one thing in their lives that they would surely give up thier OWN lives for. Well, maybe this sounds rambled but that is how it always is when you analyze things every which way you can. And there is no right/wrong answer. THere really isn't. You make your own decisions and you decide what you want, what you can handle and what is best for your child. Sometimes, it is an impossible pill to swallow but no matter what, all of us sma parents are trying to jam the SAME pill down our throats. So, we all support each other even though some of us take different routes with our children. Please remember that unless you have ever lost a child or have a terminally child, you could never really understand how these feelings and emotions penetrate so deep that you cannot breathe. I pray that Crystal(in Miami) is ok and her parents have the strength to make decisions for her and their family that make sense and that they can also find strength in each other. I know that without Rob and knowing his love and commitment are there 100% for me and for Payton I would not be able to handle any of this like I do. I love you Rob. I love you my family, and my wonderful wonderful friends who have stuck by us for and through everything through our sma challenges. Goodnight everyone.
CommentsHello everyone. This has been a very sad time as Jacob passed on Tuesday morning.. We are going to visit with their family next week. His funeral services were yesterday... Another sma family that is from Ecuador visited Payton and I and Rob and my mom today and they were for here for a couple of hours asking questions and learning about sma while their 6 month old daughter is awaiting gtube surgery and a fundaplication.... It is such an impossible position to be in... Type 1 sma. Your child is going to die. There is no treatment no cure you are desperate--you look at that innocent little helpless baby and you know you will go to the end of the earth for them and then some insensitive doctor tells you there is nothing you can do and you should just take them home love them and let them die and then you meet me and Regina and people like us and you wonder?? Should I not let my child die?? Should I use the bipap on my baby and prolong their life? What if they are going to die anyway?? WHEN IS THAT CURE COMING?? Will it be in time for MY child?? Is it right to let them go? CAN I even do that?? Will I be able to live with the guilt now that I know I can do something for them? Can I live like that-doing all that suctioning and feeding through a tube-etc etc etc etc? Can my family? Can I handle all the work?? I don't THINK SO! BUT BUT BUT.. ALL I know is that for us (me and Rob) and thank goodness we were in TOTAL agreement because some parents are not and that is a whole other ball game... But for us, it was never a question of WHETHER to use the bipap.. Payton started to suffocate... We educated ourselves and knew what was happening to his body when it started to happen. We knew when he started to just not be able to breathe. We knew he needed help. He was basically gasping for air. We had the bipap. We used it. And it worked fine and Payton has been healthy and OUT OF THE HOSPITAL ever since. There were things about sma that WE knew that intensivists in hospitals getting paid 4X the amount of money that we make together (to practice medicine and tell ME what is wrong and what is going to happen and what our CHOICES ARE) that they DID NOT KNOW. I am not joking. I can give very specific examples where many docs were just not familiar with sma and instead of telling us that, they pretended to know and to know the progression and how it worked with sma and how we could NOT use a bipap, etc..etc.. etc... Well, since we met a 3 year that used one everyday we knew something was fishy.. ALOT of things sounded fishy. They made us feel like they were trying to pull a fast one. We were not buying a car, we were talking about the life of our baby!!!!! We knew we needed to question these docs, NOT take for granted that they are assistants to GOD (which some of them like to believe--some even thing they are the real thing) and find out for ourselves what would work for Payton and what would not. SO, here we are 2 years later, with a beautiful, happy, smart, very compromised and very handicapped little boy. We are the family that you never think you are going to be. THAT HANDICAPPED KIDS FAMILY. It is not weird for us though. I don't know why but as hard as it is, we (MY FAMILY) has adapted to the whole situation very well. If anything we have embraced it and told it to watch out because we are STRONG, we are SHARP and we are RELENTLESS. So, I guess what I am saying is that for US, using the bipap was the right decision. It wasn't a difficult decision for us, because Payton comes FIRST. That is a given with us, no matter how much our lives are turned upside down, we adapt to make him comfortable and his safety and happiness come first. That is why I/we HAD a baby. To bring a life into this world, nurture it, love it, give it the best of everything, and protect it from ALL HARM. Sma is one of those things that we fight everyday and still probably will not win against. But, we NEVER lose HOPE and while we are realistic and know that Payton may not benefit from the "future Cure" we know that he will live as long as he can and watch as many darn movies as he feels like and every time we look into that little face it all makes sense and we know we did and continue to do the right thing for US for PAYTON with Paytons' care. If we were not totally dedicated to him and his care, it would not make sense for us to prolong the sma nightmare. It is a very strange situation to be in and sometimes very scary. We get scared that Payton may actually LIVE for a long time and what will we do when he wants to know WHEN he will be able to walk/run/play/swim/eat/hug/kiss/talk/etc..... I wanted to give him the world.. NOT explain why he can't swallow or lift up his head. And sometimes we are scared that he WON'T live and how will we go on. I don't think using a bipap or not using a bipap is right or wrong, I just think this disease is ridiculous and parents are expected to make ridiculous decisions for the one thing in their lives that they would surely give up their OWN lives for. Well, maybe this sounds rambled but that is how it always is when you analyze things every which way you can. And there is no right/wrong answer. There really isn't. You make your own decisions and you decide what you want, what you can handle and what is best for your child. Sometimes, it is an impossible pill to swallow but no matter what, all of us sma parents are trying to jam the SAME pill down our throats. So, we all support each other even though some of us take different routes with our children. Please remember that unless you have ever lost a child or have a terminally child, you could never really understand how these feelings and emotions penetrate so deep that you cannot breathe. I pray that Crystal(in Miami) is ok and her parents have the strength to make decisions for her and their family that make sense and that they can also find strength in each other. I know that without Rob and knowing his love and commitment are there 100% for me and for Payton I would not be able to handle any of this like I do. I love you Rob. I love you my family, and my wonderful wonderful friends who have stuck by us for and through everything through our sma challenges. Goodnight everyone.
CommentsHey everybody! Just got home from work recently. Great shift. Payton has had an upset stomach today and last night. He is not happy at all and has been trying to have a bowel movement for a while. He finally had a small one (after a suppository) tonight and he is sleeping comfortably now with some tylenol, but he didn't seem too well this afternoon. I hope he wakes up feeling much better. The family that came over yesterday is getting their daughter the gtube and fundo on Monday and then they are renting a house nearby and staying in the US to take the best care of their daughter that they can while she is alive. They are not happy about all of this, but they want to do what they can for her for as long as she wants to live. I think it is quite admirable as parents to give up their home, their business ( he owns shrimp farms) and leave their entire family to come here and they plan on staying for at least a year and if she does well then even longer. Amazing. Their lives have been turned upside down, but they remain strong for each other and for their baby... We are having our neighborhood garage sale tomorrow. This was planned by our neighbors Brian and Polly who have been quite wonderful and supportive of our efforts to fight sma. They see Payton when we take him out and they really want to help andmake a difference to help us get closer to a cure. If you are out and about the sale is at the tennis court and will go on all day. I am pretty sure they will be cooking burgers and have raffle prizes, etc..!! Wish us luck! Also, CONGRATULATIONS to Matt Ernst on graduating the fire academy!! You will be a great fireman!! And I am sure Max will follow in your footsteps!! Well, that is it for now, Take care everyone!
CommentsGood morning Freemans!! Hadn't been on the board in about a week & I see lots has happened. My sympathy & heartache go out to Shaina & Adi. I could NEVER imagine losing my child. It chokes me up just to even have that thought cross my mind...they say time heals all ~ so hopefully with time & the love of their family & friends Shaina & Adi will one day look back and be able to smile. I do know that if there is a family suffering with SMA that needs guidance, help, understanding or even just a hug to say I know my friend..I know ~ Deb you and Rob are there for them. You two together can and have been able to tackle the living nightmares that would indeed be the end of most "regular" parents. The issues, problems and bull crap that you deal with on a day to day basis is more than most people go thru their entire lives. You two have set an example not just for SMA parents but for ALL parents ~ LOVE CAN AND WILL CONQUER ALL ~ You are living proof that if you stay together & work together & live & laugh & love together ~ Anything is and can be possible. You don't living in a false fantasy world where everything is calm & peaceful & serene but REAL life...the nurses in & out all hours, the monitor beeping, running a full day on 2 hours of sleep, working outside jobs, therapy, doctors, on & on....but you do it. I think it's not just for the love you have for Payton but also because you know (well I know anyway) THAT TOGETHER YOU TWO CAN AND WILL OVERCOME ANYTHING life happens to throw your way. I think the key word there is together. That's what it's all about...you're living proof!! You need to pass that onto the people you meet ~ not just the ones living in the world of SMA ~ but all people. My thoughts are with you as always & all the families of our SMA babies. I love you!! Shan xoxox
CommentsHello, Hope all goes well today, Maybe we can stop by today. Good Luck !!!! talk to ya ltr....... see ya little guy. : )
Commentshey Deb,Rob, PAYJAY..... well it took me forever but i finally got caught up on the website. i'm glad to hear everything is going well i miss you guys soooo very much. things up here have been super crazy with work and school. i'll be home this upcoming weekend and hope to stop by and visit if y'all aren't too busy. well i'm on my way to bed hope to hear from you soon. ps debbie, i hear the tim is FINALLY back in the country so he should've gotten your envelope!!!!
CommentsHey out there!! THANKS SO MUCH to all of our wonderful and AMAZING neighbors for what you did at yesterdays' garage sale/silent auction!! What a great day!! And even though we all BAKED in the sun, and loaded and unloaded like a moving company, we ALL had a blast and so much fun playing basketball, selling and eating burgers, hotdogs, cookies, cupcakes, etc etc etc..Thanks so much Robyn for all of that delicious lemonade and thank you Maureen for all of your wonderful baked goodies!! A great time was had by all and we raised $1400 all together!! AMAZING HUH?? These garage sales can get quite crazy, but bear in mind that our customers are aware that it all goes to charity and therefore get VERY generous!! I doubt that most garage sales raise 1400-1500. I mean, I could be wrong, but I am thinking that is why we have been as successful as we have. We are going to try and do this within the community once every 6 months, so I will post when we have the next one. Our next fundraiser is the crop-a-thon November 8-9th. Please see PaytonsPals.com for the latest details concerning the crop!! Payton is doing so Much better today--his stomach was a mess this weekend and he is SO MUCH better and happier today. Thank goodness!! Take care and goodnight!!:)
CommentsI want to say thankyou for the INCREDIBLE amount of support we have recieved lately from friends, family, co-workers, neighbors and just plain strangers too!! It is quite amazing to see so many people want to see Payton do all the things that a child SHOULD be able to do!!! It inspires us so much to go on telling our story/Paytons story and keep on fighting this fight and keep on fighting for Payton and for all the children around the world living with and dying from sma. I feel like I have "gotten used to" this disease but when someone looks at me with such sincerity in thier eyes and tells me that they will pray for Payton EVERY DAY until they find a cure, like someone did to me tonight, I am so amazed and touched and I feel it like they are feeling it and I want to go out with a billboard if I have to, to spread the word. All it takes is a ton of people like this, and a ton of money, and kids like Payton will be able to LIVE!! I can't wait for that day.
CommentsThis is one of the saddest days of my life. I found out this morning that my BEST FRIEND IN THE WORLD was in car accident and killed at about 1am this morning. Leah Lorraine Flynn. I am sure many of you do not know her, but some of you know her from high school. We went there together and met in 1985. We have been best friends ever since and have not gone more than a couple of weeks without talking even though she has lived in Fayetteville Arkansas since 1988. We did EVERYTHING together from the time we were 14 til now and have always managed to see each other quite often, as Leah is quite a well-traveled girl. She has been all over the world and we have been on many vacations together from Orlando to Vegas to California. She was the maid of honor at my wedding and her daughter was one of my flower girls. Leah has the biggest heart and is the kind of person that will go out of her way to help ANYONE and just doesn't bad mouth people--that just wasn't her way. SHe is a TON of FUN and we NEVER had a bad time together. We went to college together (University of Arkansas) and after 2 years I came back to Florida. She stayed, opened up a business called Travel Depot and has owned and operated it ever since. She had a baby in 1997 named Teah Lorraine, and has loved that little girl more than anything in the world, all 5 1/2 years of her life... I really am still in shock and CANNOT believe that Leah is really gone, but I will be in Arkansas for her funeral this weekend.... Apparently, her fiance, Andy, Teahs' dad, was driving around this notoriously hairy "s" curve 1/2 mile from Leahs' house and drove straight off the s and landed in a tree and Leah was killed instantly. Andy was not hurt, but he was very intoxicated and has been in jail since the accident. This is a horrible horrible horrible thing as they have a little girl who has been left now without a mother and a father. She will be in the full custody of her WONDERFUL grandparents, Daun and George. Please say a prayer for Teah today/tonight, for Leahs' family, and for my BEST friend in the world, LEAH LORRAINE FLYNN. I miss you already Leah....And I am so so so sorry for your baby and your mom and the rest of your family. If anyone would like to send condolences the address is:Luginbuel Funeral Home 115 North Neel Street Prairie Grove, Arkansas 72753 Thankyou.
CommentsAlmost dont know what to say....been away for the past couple days and was just popping in to see how everyhting was when i read about your best friends passing. Wish i could say something to make you feel better but unfortunatly i know all to well that isnt possible.The only thing i cans ay is you have a strong circle of friends here and if you need anything dont hesitate to call, you know where i am.Until then feel better and keep your head up.Leah as well as her family will be in my prayers. Michael Murphy.
CommentsThanks for writing Michael. I am taking Leahs' death really hard and have done nothing but think about her all day. It is just inconceivable to me that she is no longer here. I heard all the details about the car and the accident and it seems that they flew 409 feet before they hit the ground. The entire car is so crushed that they put it on the news in Fayetteville and they say it doesn't even look like a car. (It was an Explorer) No one can believe that Andy walked away from the accident. He was so lucky to survive it and unharmed. Unbelievable to me that a person with not one mean or bad bone in her body could just be taken away like that. Leahs mother, Daun, and her were VERY close. Closer than any mother and daughter I ever knew and she is feeling a huge loss tonight. This is so devastating for her, please keep her in your thoughts. Goodnight.
CommentsHey Miss Deb.... I am so sorry about Leah. When i met her at the Benefit I saw what a great person she was. As Murph said if you need anything just ask, you are a strong person so i know that you will get through this. Feel Better and i will keep leah and her family in my prayers. I love you guys!! xoxo Jen
CommentsDebbie, I know it has been awhile. We just want to send you our deepest sympathy. I knew Leah too, and can't believe it. How truly sad it is. I am glad that I did get to see her after so many years at your wedding. I wouldn't know what to do if anything happened to my best friends. Life is short, and you never know when God will need you. We will say a prayer for little Tia tonight. Love, Holli, Ashley and Troy
CommentsDeb, I am so sorry for your loss and also for Leah's family/friends. I remember meeting her and her beautiful daughter at your wedding and at the benefit. I will keep you all in my thoughts and prayers. Love ya, Jennifer
CommentsThanks so much for writing Roz, Carole, Jen, Amy, Jenn H, Holli and for all the private emails, etc.. Leah touched alot of lives and has known very many people in her life, so she will be missed and definitely remembered. It is still not real to me. When I think to myself that LEAH IS DEAD I am just not even believing it. I can't imagine NEVER getting another phone call from her, or not chatting with her soon even. It is very very upsetting and she was way too young to die. I feel so sad for her baby that she will not get to know her mom and how wonderful and generous and loving she was. Leah was a lot of really good things. Thanks everybody for thinking about her these past couple days and for saying a prayer for her baby, Teah, too. Goodnight.
CommentsDebbie, Ryan and I would just like to send our condolences to you and Leah's family. That is very sad and we were so sorry to hear it. Please know that you and Leah will be in our thoughts and prayers. Please kiss Payton for us. The Withey's
CommentsThanks for writing Jamie and Ryan. It is a very tough time for me. Today was Leahs' funeral. It was quite beautiful and her church was beautiful and HUGE and the flowers were incredible and her cemetary is quite beautiful. I did her eulogy. I cried through most of it--maybe even all of it. I don't really remember. The people who knew Leah really knew Leah, and I know that she will always be in their hearts.. It was quite sad and I was one of only a few that watched them lower her into the ground. I definitely miss her already. We went to a place called Club West after the funeral services and ate and drank. It lasted for about 2 1/2 hours. People told many stories about Leah, including me and all were quite funny. She shared MANY good times with MANY people. We are all lucky to have so many good times to keep in our memories. We went to see the car shortly after the lunch service and it was very scary. Leahs' side of the car left enough room for a small duffel bag. Not a person. The tow truck guy told us lots of details but all in all, Andys' side of the car bowed out, giving him just enough room not to get crushed and Leahs completely caved in and then they hit a tree on her side to completely close her in. I think that Leah would have wanted us not to be mad at Andy. I imagine that this could have happened to many of her other friends including me, so I do not hold any ill will towards Andy. I actually feel a little sorry for him. He is quite distraught and is barely holding it together. Leahs' parents will get full custody of Teah and Andy agrees that that is for the best. This has been like something out of a movie, and I am very exhausted. Tonight we are all having dinner at Leah's favorite restaurant, Jose's. I still can't believe this has happened but I do believe Leah has gone to a better place. I miss you, my baby Payton and Rob. I love all of you. Debbie
CommentsWell, I am back from Arkansas. With the worst cold/flu that I have had in probably 5 years. It was just too cold (40-50 degrees) and I could not sleep while I was there (and for a couple days before). And I cried and cried and cried. I had knots in my stomach all weekend. It all just caught up to me and I just couldn't fight off whatever I got from whomever... This weekend made me realize and continue to realize alot of important things about life. It REALLY IS short. There REALLY ARE NOT any guarantees. I have spent alot of time venting on this website, and I appreciate the time that you all have spent reading it. But, from now on I am now focusing on giving Payton my absolute attention and time. So, I am sorry but I will not be entering any entries here for a while. Maybe in a few months when I get a little more comfortable but I want to make some changes for Rob and Payton and I and I want to focus more on our paytonspals.com website and it's construction and focus also more on our upcoming fundraising events, etc.. too, so I will be taking a few months off from this website. Please email me anytime at pfj714@netscape.net for updates on Payton or if you just want to chat. Thank you so much for sharing this journal with me, it was a great source of venting/sharing, etc.. for a long time. Love to you all and be sure to check out paytonspals.com for future info on the spring benefit and other upcoming fundraisers and updates on sma research etc..!!! Love to YOU ALL & GOODNIGHT!!!:)
CommentsDeb ~ It TOTALLY stinks not being able to pop on this site & know how Payton is doing :( I miss it. Hope to talk soon! Love you, Shan xox
Commentshey peyton go dolphins!!!!!!!!!!!
CommentsHow about installing a hyperlink to Payton's Pals? Then people can simply click on over to it. AL
CommentsGreat idea AL!! Laura is working on a button to link you straight from here to Paytons Pals! I would like to apologize to the good people out there, that came here very often, with great intentions, to keep up with Paytons fight against sma. For many reasons, it has become something that I will not do anymore. BUT, I will be working on the journal at Paytons Pals. I will keep updates on Payton and how he is doing. I am just not going to be writing almost everyday like I was. It has nothing to do with any of our loyal and supportive friends and family out there, so please continue to show your support--just on the PAYTONS PALS WEBSITE!! THANKYOU and have a great HOLIDAY EVERYONE!!!
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