Hi out there!!! Hope everyone is doing well!!! If you want to read old journal entries, just click the link above or go to "sign my journal" and then look up the archived ones!
Payton is doing great today and tonight, he is talking as I write this! Last night, he was VERY upset though,and we ALL didn't get to sleep until VERY VERY late!! Nothing was wrong with him, he just wanted me or daddy or grandma and that was it!! When I came home from work tonight, he was chillin' in his new hi-low chair. What a wonderful sight!! I can't wait for all of you to see him around the house like a regular kid! (almost anyway!!!) New pics will be up soon!
Shannon has a Suburban FULL of stuff for the yard sale, but we will take ANYTHING you want to donate!! So, please let me know if you have anything you want to give before Feb. 20th or so, and we will pick it up or get together with you...
For those of you that did not see yet, the benefit is going to be on June 8, 2002!!!!!!! I am very excited already and I have just begun!! I am going to get donation letters first, and hopefully we can get a ton of stuff donated for our live/silent auctions, like last year!!!! We already got a puppy donated, which we were unable to get last year! This is a GREAT auction item, and I am pretty sure that Shannon also got several other "things" donated that you would need with a brand new puppy!! Thankyou Shannon and a huge thankyou to the "puppy connection" for being so generous!!!!!!!!!
Well, have a great night everyone and as always, thankyou for your support and ALL that you do to help us find a cure for this disease for Payton and all of our sma angels!
Love Deb
WOW, PAYTON! All the people who love you filled up the journal so well we had to start a new one! You're amazing, kid! :-) LOTS OF LOVE, Auntie-Amy
Hi Payton,Debbie & Rob, I hope things are going well. Mary told me about your site, so I thought I would check it out. It really looks great. Please let me know about the upcoming FSMA event so we can make this years event even better then last. You all take care and I will speak to you soon.
Hey Payton, Deb, and Rob: I am so happy to hear that you got your chair. An amazing kid like you needs to have mobility! I am also glad you are feeling better. Whatever help you guys need with the benefit i will be here. I will talk to you guys later
love always! Jen xoxoxoxo
Hello out there!! Hi Amy and Bill and Jen!! We are really looking forward to this years' benefit!! I have lots of people offering to help from work and lots of family and friends that have offered their time and energy! Thank you ALL SO MUCH!! It means the world to us! Bill, I will be calling you soon! I am hoping this year is even bigger than last year!! We will have the same auctioneer! He was AWESOME with the silent auction! We will have OUTBACK food just like last year!! DELISH! :-) We will have a band again and this year we will have someone taking video and pics, which we did not have last year. Also, we are going to try VERY hard to get one of the news stations to do a story on Payton. It would be great if they could come here, to our house, or with us to PT or something. If anyone has any connections, let me know, otherwise I will just keep calling! If you have anything you would like to donate to the benefit, please let Rob or I know and you can either bring it here or to Robs' work, or I will meet you. Whatever is easiest!! We would also like to get some info about the event on the radio! There is a ton of stuff to do, and I will keep you all updated! We are going to start with donated items though, so be on the lookout!
Payton is doing GREAT the past few days! He had a great night last night and a great day today! I had to work again tonight, so I am sure that he is looking forward to some mommy and Payton time!! He definitely deserves it! We will be in Disney soon and I really cannot explain how truly excited I am/we are about this trip. I really cannot. But, anyway, it is a wonderful, exciting thing and we can't wait! I will be sure to take tons of pictures!!!!!!! Well, I must go and be with my baby, see you all soon.....and take care!!!!! Deb
Hello Deb and Payton!! We were just checking in and glad that Payton if feeling better and we are glad you got your Hi/Lo chair!! Our PT is getting everything together for the Tiger 2000 and we are so excited!!!! We are looking forward to spring and being able to get outside and enjoy the beautiful weather!! Lily sends Payton hugs and kisses!! Talk to you soon.
Hello sweet Payton!! How is your new chair? I am sure you love it & I am so happy for you that you FINALLY have it! Are you as excited for Disney as your Mommy is? :-) You will have such a great time-ESPECIALLY with your new chair! :-) Deb, I spoke to Robert....his mom will donate artwork again (yay)...Craig is trying to get a cell phone donated, I will ask Lauw about a G.C. from his store and I am having Robert ask his connection at the "Heat" to get another basketball. I will keep thinking of other stuff, too. I LOVE YOU, Me
Hey out there!! Hi AMy and Lily! HOpe you two are doing great! We are always thinking of you!! Marn, you are the best!!!! Thanks for all you are doing! That "Heat" ball was a big hit! The artwork is so awesome, this time ALL the art will be on the live auction. You can get some really good deals on art through these auctions!! I think I may try to get Rob to buy one this year for the house! Call me soon and we'll chat about benefit stuff!!!
Payton is doing great. KNOCK ON WOOD! Disney is coming and I am really hoping for good health when we go away! Have I MENTIONED how EXCITED we are??? Wasn't sure!!!! ANyway, I am getting pics developed with Payton is his new hi-low, so they will be up soon!
The YARD SALE is looking very promising!! Remember, if you want to get rid of anything, let me know, or let Shannon know!! Thanks guys! (Feb. 23rd!)
Take Care and love to all of you!!!!!!
Hi Deb,Rob & Lil' P~ Glad to hear you're soo much better Payton...hate it when you're not feeling well. How do you like watching the big screen now?? Maybe Mommy can teach you how to make cookies now that you're mobile & can get in the kitchen!!! Have received tons of stuff for our garage sale...But anything & everything that you think will sell would be GREATLY appreciated. Just let me or Deb know & if you'd like we can even stop by & pick up your stuff so it's easy for ya!! You can e-mail me at SBeatty195@aol.com & let me know.Was also thinking that a small table with baked goodies might go over well....hot coffee & muffins or doughnuts-every dollar counts so I guess it couldn't hurt to try ....also putting out the SMA ribbon pins for anyone to purchase one who would like to support the fund to find a cure. Let me know if you have any other ideas....well my dear Freemans I'm off to grab a bit of shut eye. Have a wonderful day. xoxo Shan : )
Hi Payton! My Mommy saw that your Mommy posted on my site, so we came to see yours also. You are such a handsome boy, and I hope we could meet some day. That would be great.. We loved to look at your pictures agin and let us know if new ones get up. Big hugs and kisses! Love Skylar and Tracy
Hey there world!! We had a nice evening with our friends Gary and Marlee! THey got to see Payton in his new hi-low chair and we dined on our favorite--Outback, of course! We also got to see our wedding video, which we hadn't seen since right after the wedding. It is wierd to look back and think about all that was going on that day, and all that we were doing and thinking and taking care of...but it is a really good feeling and memory. I feel so much in love with my husband and my son...and it feels really good. And no matter what life throws our way, I know we will have each other and that is all that matters. Each time I hear that line in our video song by Creed, "my sacrifice" that goes, "how life can change...in an instant" and I look around me and see just how MUCH life can change in an instant, and then realize how much Payton has changed us for the BETTER, I get choked up. Rob and I were not bad people or undeserving of a healthy child, but we were definitely not the people that we have become, while taking care of Payton and learning so much from him. I try not to get too dramatic about anything, but some things just really touch me deep...Maybe that is just cuz I am a mom now!!!:-)
Well, Thank you sooooooo much to all of you that are donating things to the yard sale! It is all very much appreciated! To those of you that plan on going down to Miami with me, let me know what time you think you can go, and what day...Fri, Sat, or Sun! Thanks!
Alot of people are asking about the hi-low chair. It is the same seat as the TIger 2000, with a different base! This was not approved by insurance, our friends at the Outback made sure that Payton had it though!!!!!!!! It is AWESOME, and if you have an sma child, you must get one!! THe Tiger is covered by ins. so you just need the base, and it is about $800 if you pay all at once!! THe company to get it from is National Seating and Mobility. They are based in Miami and Tennessee. Ask for ALex or Louis or Nelson.
Have a great night everyone! Love, Us
Hello Deb,Rob, and Payton,
I am glad to see that Payton enjoys his new chair. I love your site and am sorry it took me so long to check it out. Have a great time at Disney, and I'll be caring for you know who's cats. My friends the Ascher's and the Haber's are both looking forward to the next benefit auction as they really enjoyed last years. I'll see again if that tightwad Terry will donate a racing greyhound for the cause....be nice to him Rob and maybe we can convince him...haha. All my love...uncle john
hey guys.
i hope you have a wonderful time at disney. Patyon say hi to mickey for me ok?! I am glad you love your chair i promise to come see you in it soon.
love always jen xoxoxoxoxo
hi there payton.... i miss you and will be there to see you soon... have a fun time in disney and most of all enjoy the world in your new high low chair... have fun........hi to your mommy, my daughter in law... you are so lucky to have her...she loves you so much.... i love you baby boy....g-ma roz and bill
HI Payton, Wow, what a fighter and incredible boy you are! You are blessed to have great parents that fight with you because they love you. Take Care, Skarleth mom to Evan Breton type 1.
Hi Payton,
I hope you are enjoying yourself in Disney World! Give a kiss to Mickey for me. See you on Wednesday.
Love, Susan your therapist
Tammy and I were fortunate enough to meet Payton and family at Disney on Saturday.. Payton was sleeping at the time, but it was a beautiful day and I am sure when he woke up, he saw all the magic that Disney had to offer. We had a wonderful time ,with Ryan and Brittany. Take care and I hope you all had a super time.. You deserve it... Diane and the guy in the blue sunglasses
HEYLO! everyone!!! Well, we just got back from DISNEY!!!!!!!! What a GREAT TRIP! Payton did SO well it was amazing! He NEVER desated NOT ONCE!! I know for you sma parents, that is hard to believe! But, it is true, I guess maybe DISNEY is a cure-all or something!! Even while he was sleeping in the park, his sats were at 99-100, OFF the BIPAP!!! We went with my parents, and we ALL had a great time! Payton slept through alot of disney and some of the monorail rides, but he was happy and comfy, so we didn't bother him. When he was awake, he was just so content to check EVERYTHING out, and he was even good with the VERY loud fireworks!! We took him out to dinner (which we have not done) and that was great too! I have tons of pics which I will develop and post. Everyone was very nice and helpful, our hotel was great, and our adjoining rooms were handicap accessible and were right next to the monorail for easy access. We were sooooo happy with the hotel and the people that work there and in the park. There were TONS of people and kids, even with this being the "slow" time of year. Nobody bothered Payton though...and we got through the park with out any problems! I have a ton to talk about, but I will post again tomorrow, because I am exhausted, and I need to put Payton to sleep and get organized! I just wanted to say hi! and tell you all what a great trip we had and how good Payton was and how much he enjoyed it! Talk soon...Me
I am glad you all had such a great time. Disney is truly the happiest place on earth. It has such a happy atmosphere and i am glad you loved it payton. You really deserved such a fun filled trip. see ya later
love jen xoxo
Hey everybody! It has been a busy week, and continues to be crazy! We have a wedding, an sma event, work, and relatives coming this weekend (relatives for the wedding and then relatives from the other side of the family!) Last night we did not have a nurse, so I didn't have time to go on the computer. Payton has been doing great! I don't want to jinx him/us, so let's just say there are NO complaints!! Last night, he slept fine. I have to go in and turn him several times, and change him, and make sure his feeding pump is on,and of course, all at different times, but I am used to it. He is sound asleep right now!!! He sleeps great, just like his mommy!! It was funny because yesterday he got up really early and started YELLING for me to take him off the bipap and start his day! He never wakes up that early and I would swear he thought we were going to DISNEY again!! He is such a CUTIE! Anyway, I could go on and on about our DISNEY trip. HE did GREAT, his numbers were better than we'd ever seen, he never had a problem. Everyone in the park was nice, the characters took extra time with Payton for pics and stuff...The park was packed even though this was considered the "slow" time. I can't imagine that place when it is "busy!" But it didn't phase Payton, he just was so content and looking at everything!! He couldn't go on any "rides" with the wheelchair, but he could go into the shows, and the "tiki birds" he liked alot! He liked the fireworks (that always is a big hit with him) and he seemed so comfy in the monorail that he'd fall asleep! We took him out to dinner in the hotels' steakhouse, and he was fine there too! It was definitely the best vacation that we have ever had, EVER! And Payton doing so well, definitely made it a stress-free, awesome time!! There will be PICS up soon, I promise! We have ALREADY got pics developed!! Well, must go and get ready for work and speech, and physical therapy! HAVE A MAGICAL DAY!!!!!!!!!!!!!!!
Hi Payton-baby! I'm glad to hear that you dug on Disney World. I've always been a bit partial to the place myself. There's nothing like a little modern-magic to spice up your day! I miss you but hopefully you mom will read this and give you a big hug and kiss for me. LOVE! Your favorite aunt!
Hello out there!! Well, another busy night at the Outback! My feet are beat up tonight! Payton went right to sleep when I got home. I think he was just waiting for me. :-) We got the Disney pics back, and I will post them ASAP, so be on the lookout for them! Tomorrow we will be at Ryan and Jamies' rehearsal and dinner for the wedding...We are looking forward to seeing everybody there! Someone asked me tonight if Payton was getting better (alot of well meaning people ask me this) and at first, I was like, well, not really, he sort of stays the same, and then, I remembered! All of a sudden Payton has started to move his legs!! I know that it is crazy, but he really has! Just a little, but enough to get excited about. He has NEVER moved his legs. Maybe his first 2 months, and just barely if he did. His feet started to drop a while ago, and we are looking into splints and stuff, but we just noticed that he started moving his knees back and forth, which apparently means he is using his hip muscles! I was so proud, and happy to be able to relay this to my concerned friend! And many docs told us that he would NOT regain any of the strength he has lost, so what about that???????? Anyway, take care everyone, have a great night, and remember, WE WILL FIND A CURE!!!!!!!!!!!!!!
PAYTON! THAT IS SOOOOO GOOD! I'm so proud of you! I hope you LOOOOVE moving your legs and that you try to do it ALL THE TIME! Next time I see you, I'm going to tickle your knees and you'll have to KICK ME to make me stop! :-) Hee hee hee!!!! I LOVE YOU! --Auntie-Amy!
Hey there Hi there Ho there Freemans!!! Glad to hear Disney was a blast~looks like some of the magic came home with ya'll!! Come on Payton move them knees!!! Ya know we're all rootin for ya lil' buddy. Deb give me a holler checking in to see how P's doing. Luv ya xoxox Shan : )
Heylo out there!! Well, it is always something isn't it....I was informed today that Paytons' nursing has been cut back to 40 hours per week instead of the 84 HOURS we have been getting for a YEAR now...I guess they never expected Payton to live this long. It is such an injustice what insurance companies in this country are ALLOWED to get away with. Unfortunately, the people that suffer the MOST, are usually too sick to fight back, and therefore they just lose their coverage, as they are unable to pay the outrageous rates they are soon charged, once they are diagnosed with a serious illness (esp. one in which they require long-term care) and then they must get medicaid. So, after paying outrageous money their WHOLE lives for insurance (in case, God forbid, that anything ever happens, or they DO get sick), they are soon dropped (which could happen if you are able to somehow keep up with all the raising of their rates) and put into the states hands...I could go ON AND ON AND ON about this issue, as I am sure you all could imagine. Don't worry though, we are going to FIGHT this! I am going to get all the info tomorrow, and figure where to go next. It is amazing to me how difficult they make it for you to care for your sick, terminally ill child, that can't barely move or swallow. If they met him, and still denied us it would be one thing, but they just do a review, realize how much money they are spending on this kid, and how much it will cost to continue like this, and just CUT THE BENEFITS. They don't care, they are allowed to do it, and they probably laugh at us trying to fight. There are no regulations with insurance??? You will probably spend more money during your life on insurance than on anything else, and if you need to collect,you are on your own. God forbid, you are really sick and can't deal with all the red tape and hassle of getting what you need. Fortunately, Payton has us. I guess this is what my purpose is in life...
#1 FIND A CURE FOR SMA
#2 CHANGE OUR DISGUSTING "HEALTHCARE"
The irony is that they call it "insurance" It is anything but...
I am sure that I am not the only one that feels this way. Let me know what you think...I want to know.
P.S. The rehearsal and dinner tonight was wonderful and we are looking forward to seeing Ryan and Jamie be wed! What a great family she has!! Ryan is very lucky!
HEY PAY JAY, DEBBIE, AND ROB!!!! I MISS YOU GUYS SOOO VERY MUCH. IT'S ABOUT 2AM AND I'M AT THE SCHOOL LIBRARY DOING SOME STUDYING SINCE I HAVE FOUR TESTS NEXT WEEK!!!AHHH!! SCHOOL IS GOING VERY WELL, BUT IT IS VERY COLD HERE.I NEED A PAYTON TO SNUGGLE WITH=)OUTBACK UP HERE IS BETTER EVENTHOUGH I GOT OFF TO A ROCKY START. I WORK THERE 2 NIGHTS A WEEK AND AT A NICE BAR 2 OTHER NIGHTS. I'M GLAD TO HEAR THAT EVERYTHING IS GOING WELL. I WILL TRY REALLY HARD TO STAY UPDATED IT'S HARD THOUGH B/C I DON'T HAVE MY OWN COMPUTER AT HOME. I'M SURE I'LL BE AT THIS LIBRARY ALOT THOUGH SINCE I'M A BIG STUDY NERD!! SO DEB HOW'S OUTBACK GOING? HEY TELL YOUR PARENTS I SAID HI. I MISS YOU TOO ROB. LOVE YOU SOOO MUCH XOXOXO JAX
Hey Deb!! I am with you on the insurance issue!! When Lily was first diagnosed with SMA we had to fight for EVERYTHING!! They wouldn't let us have a simple pulse ox machine, then denied us the bipap, inex, and so on and so on!! We fought them not only with a lawyer (who thank God gave us his services for free), but with our State Insurance Commissioner, and our Local State Representative. Lucky we have a wonderful Case Manager but she can only do so much..our last trip to the ER the doctor sent us with an order for Oxygen, and our Peditritian ordered it too..and THEY DENIED IT for us too..but our Case Manager fought that too. But of course our fights are still far from over..we are fighting for nursing now too!!! Insurance companies are there when you are well..but heaven forbid you be the one SICK with something like what our kids have...they think our kids lives are not worth anything!!! I am with you and agree and am horrified that they would cut your nursing benifits that you have had...it is horrible!!! On another note Lily's stats are back to normal..I think it was a gassy problem which causes her so much discomfort!! Lily sends hugs to Payton and I do too of course..and to you too. Also to your husband if he wants them (lol). Talk to you soon.
Well, hello to the Freeman's. Everything that I've read sounds really exciting. Lots of stuff goin' on at your house!! What with that new chair of yours and all your recent activities. I can't wait to see the new pictures, especially the ones from Disney.
I have some stuff to donate to the garage sale. It's not a whole lot, but I wanted to get rid of some stuff anyway(as I'm sure we all do...)and who better to give it to than to Payton's cause??! I was really glad to read that you were having this because I would much rather help in that way than to give it to "good will". At least I know the person that I'm helping. I will call you Deb, or e-mail your friend Shannon. It sounds like you're sooo busy.
I'm also excited about the benefit in June. I would love to come with my husband this year. Last year we had just had the baby (Joseph) so our timing was off. But, hey, we could also use it as a night out alone together. We don't get many of those. Debbie, you were so right that Mommies need their alone time. (and alone time with hubby)
Anyway, I'm rambling. Talk to you soon. Love, Anissa and the Crew
P.S.-This website looks really great. I have to tell you that I really enjoy visiting it. Payton, I showed MY mommy your site and she says that you are a BEAUTIFUL boy! But, I bet you already knew that! Take care....
It is funny how things work out sometimes...Last night after Ryan and Jamies' beautiful wedding (we all had a great time-she looked beautiful) I was feeling like I was getting sick, you know, that sore throat, swollen head, stuffed up feeling. Anyway, Robert gave me some vitamin c, sudafed, and echinacea (He REALLY didn't want me to get sick-I wonder why????Hee Hee) I crashed and slept in, but felt worse in the A.M. So I decided to take the day off from everything...a meeting at work, physical therapy, the "great eskate" ....and just rest, as I have to work tomorrow, and more importantly I have to be well to take care of Payton (my mom has been doing pretty much everything--to keep my sickness away from my oh so vulnerable baby) Well, low and behold, Rob was at work, I WOULD HAVE been in Miami, and my mom would have been alone... Payton had a bit of a mucus plug, teamed up with a very serious and rough bowel movement, and lost his breath, literally. He was desating while taking breaths off the bipap. AND FAST. I flew over and starting giving him the in/exsufflator. Not the ex, just the in. I could hear a plug, but more importantly, I was giving him the blast he needed to catch a real breath. (I had to do this about 8-10 times to get him going) He was gray,eyes open, but face as gray as a ghost. THis is definitely a scary sight, but unfortunately/fortunately I have seen it MANY times, so I do not get flustered.I have learned alot in the past 2 years, esp. to keep cool under pressure. If I lose it, things get very ugly.... ANyway, Payton is napping on the bipap with the excellent numbers that we have enjoyed for a couple weeks, and he is fine. But, I was just thinking how lucky I/he was to be home...Sometimes your body lets you know more than you think....This is not something that I would want my mom to have to deal with alone. She is very capable, and we are very confident that she would act as well as me or Rob, but it is better when someone is there to help, believe me I know....Every breath he loses during one of these episodes counts. After a certain amount of time (and it is NOT long) he would experience brain damage. Fortunately for Payton we have been successful at getting him breathing again quick. But it makes me worry about the next time. He is doing SO well, and for this to happen is quite a bummer, but just a reality check. He IS fragile, and he DOES need nursing, and he IS terminally ill. All this does is make me realize how much we really need the things that insurance keeps trying to take away from us, and from Payton. It is so ridiculous that we have to "fight" for the things that these kids are entitled to. My son is LUCKY to be alive, and we are all so happy to have him here with us still, and the ins. company is NOT happy about it. He is just a huge expense to them, and they had their way we would have been dropped the day after his diagnosis. Well, I hope to see you all at the benefit, and maybe we can make some changes....for Payton, and all of the other sma babies out there!Take Care
Hi guys, sorry to hear of your rough day, but glad to know that everything turned out alright. Everything (I believe) does happen for a reason, thank God you were home Deb, not that mom couldn't have handled it, but I'm sure that Payton was glad that you were there after everything was over. We are so excited about the 2nd annual "So Many Angels" benefit! We had so much fun last year, and we know that this year is going to be twice as big, and twice as fun!We are making a difference and there WILL be a cure! Once we raise enough money to find a cure that's long overdue (I've read articles stating we should have a cure w/in a year-that was dated over a 2 years ago) then we could go after "healthcare". We will be there to support you, and I'm sure others would too. I'm so glad to hear that soooo many people want to actively help with this years benefit. The more people involved- the more successful. As soon as Bill gives you a donation letter, let me know so I can send it out to all the companies who gave donations last year ( I have all the addresses, email me with addresses of companies who responded to you too- and I will take care of them all). Are you still interested in starting your own South FL SMA chapter? I would still be interested and dedicated if this is still an idea. I still want to give you this fundraising packet I ordered- it has a lot of great information. Call me. We can't wait to see the Disney pics! Post them soon! Lots of love and prayers, from our family to yours-XOXO, Matt,Kelly, & Max
Hi out there! I am sooooo tired! It was another crazy night at work, and I am still not feeling myself, so I got a little lightheaded tonight. But I am home and loading up on sudafed and things of the sort! My mom and grandma and aunt Lorrie and aunt Joni and cousins Betsey, Molly, Samantha and Katie ALL came to visit me tonight! What a treat! I am looking forward to dinner with you guys tomorrow! Thankyou so much to Jen P. and Michelle for donating stuff to Paytons' yard sale! We are really looking forward to it! Kelly, you are so good... I definitely want to get something started, but not until next year. I just couldn't do it no matter how hard I tried right now--not enough hours in the day!! But, the benefit will be GREAT! Thanks to so many people like you! I look forward to starting our own chapter in the future. The yard sale is February 23rd! Don't forget! ANissa, it was great to hear from you. Please email Shannon if you have alot of stuff. Otherwise, call Rob at work, and either he or Michael will pick it up! Thanks alot! I look forward to seeing you guys soon! Well, our nursing is all a wreck right now, but we are going to try and get things going tomorrow--so wish us luck. I will find out how the "great eskate" went tomorrow, so I will let you know. Rob did ALL the printing for this event (about 1,000 bags and shirts and did NOT charge them ANYTHING to print them--they paid for the cost of the shirt/bag and that is all) All proceeds went to FSMA, so it was our pleasure to donate, and Robs' pleasure to print!!! =) Anyway, we are so looking forward to this years "so many angels" benefit. Kelly, as soon as I get the letter together, I will get them to you. I have been working on this... Take care everyone & goodnight!
hey guys, i just got back from studying and finally had the chance to catch up on some payjay reading!!! i'm so happy to hear that you had a qonderful time in disney. payton, did you see buzz or woody? well i'm glad i got the chance to talk to you for a bit this afternoon deb. i needed to hear some familiar voices from home. i sent some pics with mike ross so you guys can see my house up here. oh by the way my address up here is:
1878 Honeysuckle Dr. Tallahassee, Fl 32304
ok well i miss you guys sooo very much. oh and tell rob that i had to buy a stupid step stool in order to reach my kicthen cabinets. i knew he would like that. I LOVE YOU XOXOXO JAX P.S. DEB, WRITE JIM AT JIMBO0413@AOL.COM
Hey guys, We just want to Thank you both for coming to the wedding. We really enjoyed having you there. You guys made it so special for us. It meant alot for Ryan to have you there also! We love you guys. I am sorry to hear about Payton. Thank goodness you were home Deb! I hope you and Payton feel better. Hugs and Kisses XOXOXOXOXOXOXOXO
The Withey's :)
Hi Freemans! It has been a while since I have checked out the site. First of all, I am so excited about the benefit but even more excited about Payton moving his legs - that is amazing! (Deb, why don't you call Lucy...tell her to put that in her pipe and smoke it!) Anyway, no doubt this is just the beginning...I know that Payton has lots more good stuff to accomplish. Just want you to know that I am in such awe of all of you - I think you are the strongest, bravest people I have ever known. My thoughts are always with you! Deb, just left you a message at home....gimme a ring and let me know what your plans are for the weekend. I do not drive too far west anymore...but I think if you will be around I could be persuaded! Okay, back to work for me!! XOXOXOX and love from Brandon and Steve as well. -Renay
Hello there Freemans!!!! Hope you're feeling better Debbie.Things don't run as smoothly when Mommy's sick...so hurry & get better. Lots of stuff for the garage sale at the house right now(not that I'm greedy or anything)BUT every little bit will help so COME ON FOLKS CLEAN OUT THOSE CLOSETS...you know you have clothes,shoes,toys,frames,dishes,blankets,etc. just taking up precious space in your homes...e-mail me at SBeatty195@aol.com & I'll swing by & pick up your stuff.Lots & lots of baby items so if your in need or know of someone swing by the yard sale. Feb 23rd at 10855 NW 40 Street in Coral Springs. between Wiles Rd. & Sample Rd. off 110th Street. Also if you're available to help out during the sale that'd be appreciated also. Just let Debbie or myself know. Glad to hear P's feeling better...as a Mom myself it's scary enough just when my kids have problems from having the flu or something...applause & koodoes out to you Deb...every day you amaze me even more...It's a bird It's a palne No It's SUPER MOM!!! have a great day & Let's get together soon. I miss you Shan xox
"WOW!!" That's pretty much the best word to describe how I am feeling after reading the past 2 weeks of journal entries. To say that A LOT has happened is an understatement. Deb, I had tears in my eyes when I was reading about Payton moving his legs. I am sooooo ecstatic, that words cannot express it! I HAVE to come by and see Payton & you very soon :-) Please call me so we can make a date. I may be able to get some stuff together for the yard sale, I will have to talk to you about it. :-) I have left you a few messages, but have been unable to get to you. I hope you are feeling better, Deb & I am glad you were (AS ALWAYS) there for Payton when he needed you. HUGS & KISSES, MARNI P.S. "BIG NIGHT" TOMORROW @ 9PM FOR THOSE WHO HAVE A MENTAL BLOCK AGAINST REMEMBERING!!!! :-) LOVE YOU
Hey Debbie, Rob, & Payton, What a website, I have to tell you I got online a little after 10:00 PM its now 1:50 AM and I'm still here!!! I have REALLY enjoyed the pics being that I haven't seen Payton in sooo long ( He's getting so Big, and of course as beautiful as ever!!!)Also, the journal my god Deb your doing a great job. I have learned SO much. I talked to Holli tonite and she gave me the website info. and I've been here ever since(and I work at 8, ugh!!) Be sure to let Joe and I know of the next Benifit dinner. As I've said in the past if I can help in way (volenteering, flyers, etc.) let me know. I can't wait to see the pics of Disney and of Payton in his new High/ Low chair!! I'll be back. Happy Valentine's Day Payton!! xoxoxo, Lisa
Hello, its me again!! I read the journal backwards (current then past) then I went to check it out again and I remembered Payton's knees moving GOOOOO Payton I keep praying for you sweetie!!! Keep up the good work !!! You too Robert & Debbie your strenth is unbelievable & unstoppable and Payton is a VERY lucky boy with the two of you!! Happy V-day I must go directly to bed now. Good night xoxoxo, Lisa
Happy Valentine's Day to you my sweet precious little punkin! see you later, love you lots, grandma.
Hello hello to all our visitors!!! Unfortunately I have been sick as a dog, and now Rob is sick too. This makes it very difficult to take care of Payton--thank goodness for grandma!!!! Payton has remained well so far--so, keep your fingers crossed! It is NOT GOOD when he gets even the slightest bug....Thank you soooo much for donating all the great stuff to our yard sale!! We are hoping for a huge turnout for this yard sale! Don't forget--February 23rd (Saturday!) I should have the donation letters for the benefit by this weekend, so I will get them out ASAP, if you know anyone that would like to donate, and you need tax ID info, or any help at all getting it organized, please just email or call me! Remember, Saturday, June 8th is the BIG day, so mark it on your calendars!! We are hoping to out-do last years amazing fundraising efforts!! So, let me know if you have ANY ideas or suggestions!! Lisa, you were such a big help last year with the letters, if you could do the same I'd be very grateful!! I will get a couple of pics together, and all the copies of sma info,etc..and get them to Michael asap if you can do it. Let me know....Hi Marni and Renay! I miss you guys! You MUST come and see Payton!! Hello Ryan and Jamie! ANd miss Jackie! We miss you so much! When is your next visit?? SHould I mail your invite up north? or home??? Shannon, I have been trying to get in touch with you, I will email you tonight!
I haven't written in a couple days mainly because I have been so sick. But it is also because I have not been able to focus, since our latest bomb.... Our insurance company has decided that they have found a loop-hole in our policy that says that we are entitled to only 28 hours a week of nursing...therefore, they gave us about 8 hours notice and dropped us from 84 hours a week, to 40 and on the last day in FEB. we will go to 28....They do not deny that the patient needs the nursing, they just don't want to pay, and do not have to. They also have not returned one of my phone calls, and this all went down last Thursday. I figured it would be pretty easy to start with medicaid, since Payton obviously qualifies. But, I should have known better. Nothing is easy, when it comes to getting ins. or the state to PAY. I wished I had taped my first phone conversation with CMS (Childrens Medical Services- a small division of medicaid, existing to help children that are sick and needy and keep from them falling through the cracks, when ins. doesn't do what they are expected to) The woman I talked to was so negative, and basically let me know, that even though we probably would not get approved, she'd get me the number of someone else I could talk to. She also went on to give me the list of things that I needed to do and get, to even start this process, all of which would have taken me weeks...I NEVER get upset with any of this in almost 2 years, and I was almost brought to tears realizing that the people that I thought were going to HELP us, were just as defensive and uncooperative as the ins. companies. I actually got into a slight arguement with one lady, and she told me that if I was to complain to anyone it should be the ins. companies with the deep pockets, since they should be paying and not CMS!! This is actually just a very small excerpt from a crazy week of phone call after phone call and very little help, but I am sure you get the idea. We STILL do not have enough nursing, so in the middle of all this BS, who suffers the most?? Payton--the sick child that is oh so in need, suffers. ANd his family suffers. THey expect me to jump through hoops, go to meetings, spend hours at SSI and other appts....all when I have no nurse to help me with the baby. It is a total joke....It is so much red tape, and hassle, it is amazing to me that this is supposed to be considered "help" All this does is stress me out. Not Payton--not the disease--not the fact that he is terminally ill--not all the work involved--none of it stresses me out except for dealing with the people that are supposed to make it easier.....and don't. As a matter of fact, one of the ladies told me in the middle of my explaining how difficult this is going to be, that alot of people can't deal with the red tape and just stop calling her. Unbelievable. SO, you are telling me that the MOST desperate people, who are incapable of even keeping up with you, stop calling and you don't keep up with the case and help them along??? That is NOT her job. Well, we have our work cut out for us, that is for sure. I hope that you all do not EVER have to deal with the insensitivity that I have seen from ins. and the gov. agencies that we have had to deal with...I am still hopeful that we will come across some nice soul that sees the deal and actually does care, and actually does the right thing, and MAYBE even does their JOB!!!!!!!! That would be fabulous!! Take care and have a HAPPY VALENTINES DAY!!!!!!!!!!!!!
P.S. Michael and Lisa, please tell auntie nana that is the most beautiful blanket we have ever seen and thankyou sooooooooooooo much! A lot of work went into that blanket! It is wonderful!
Hey, Payton-Baby! ... Will you be my valentine? You'll be the sweetest little valentine I've ever had! ...and don't forget! Grampa's birthday is the day after tomorrow! (Give him a big sloppy wet one for me!) LOVE! Auntie-Amy
hello my sweet little boy......happy valentines day! will you be my valentine?? I love you.. tell mommy and daddy i hope they feel better.....
Happy Valentines Day !!!!!!!!
xoxoxoxoxooxoxg-ma roz and bill
Happy Valentine's Day Payton!! I hope one day we get to meet (and that we will be cured and have alot to talk about and PLAY!). Mommy put me on her lap and let me look at your pictures tonight and I thought you are so cute and handsome!! Mommy sends her love to you, your mommy, and your daddy and says for them to get better fast and for you to stay healthy!! And I say way to go on moving your legs!! It is fun to move isn't it?!!! Love Lily (SMA type 1, 8 months old)
Hellooooooo.......Update on nursing...well, I finally got someone on the phone at United. He was actually NICE and asked if I could get a letter stating that Payton needs nursing (and how many hours) from his pulmonologist and send it to him. This is actually in the works, so I said yes. He called me later to say that I would need to fax the letter next Monday to a woman that is now working on our case and that she would bring the letter to the "medical directors" attention. (he apparently can make the decision to continue coverage temporarily) SO.....keep your fingers crossed...We have an appt. with SSI (the first step of getting help from CMS with nursing coverage) next Friday (the earliest we could get) and these are just a few of the things they want me to have:
Paytons birth certificate, documentation of disease/diagnosis and description of/implications of, etc...all doctors that Payton has ever seen, hospitals he has been to, visits, what those visits were for, dates, addresses,etc...All medications, equipment that he is using (must be documented), bank statements for Rob, me, and Payton, paystubs for me and Rob, tax info for last year from me and Rob, (must be actual documents), tax assessment notice, stock information, bond info, and any mutual fund, 401K or IRA info, and life insurance policy information with policy numbers,etc.. DOB and social on all of us, mortgage receipts, make, model and year of vehicles, verification of total income of house hold, burial contracts on all of us....do you want to hear more??? This is actually just the preliminary stuff....All just to get help with NURSING for a terminally ill, well "documented" baby. I know lots of people have to go through this to get help...BUT, when you need help because you have a "disabled" child that requires 24 hour nursing care, you should be treated as a priority, and not made to feel like a liar or a cheat or like you are trying to get something for free!.... They just say that this is the way the system works, and that is it...period.... Is it me, or is this completely unjust?? Well, let's just hope that the medical director takes "pity" on poor Payton and his family and helps us with nursing for a few weeks. Then let's also keep our fingers crossed that we will even qualify for any help from CMS. And then let's all get together, in one big power hug...and pray that mommy doesn't lose it and pull a JOHN Q on them!! :-)
For those of you that don't know me...I am kidding. But wouldn't it be great if I wasn't????????
Have a great day Love The Freemans
Ok, I'm back again. I must say, if you don't like hearing me complain, you probably shouldn't read the journal for a couple weeks! Just til this nursing-insurance-medicaid thing gets rolling! :-)
Anyway, on to happier things...I am feeling 100% better today! Thank goodness! I believe that Rob is a day behind me, so by tomorrow he should feel 100% too. Payton seems to be sleeping it off but not showing any danger signs, so keep your fingers crossed!! He had his RSV shot earlier this week and little man acted like a BIG BOY, and did not even crash for the shot. This was very impressive! That was on Wed. and they promised to fax a letter of necessity for nursing, but we don't have it yet...Payton seems to be hooked on a few movies lately--not just one or two. We are very thankful to be able to choose now. He likes Shrek, A Bugs Life, Veggie Tales, Toy Story, Emperors New Groove and Atlantis. Grandpa just got him Peter Pan, so we are trying to work it in slowly. We are VERY excited about the benefit, and if you know of anyone that would like to attend or want to give me your address, just email me!! We are designing a new t-shirt for this years event. Let me know if you have any ideas!
We are without a nurse tonight, AGAIN, so I must go, but take care everyone and wish us luck!
Hi Debbie, Robert, & Payton Deb I'm very happy to hear that you are feeling better and I hope Rob is right behind you!! The insurance issue sounds like and is an ABSOLUTE NIGHTMARE!! I wish there was some way to affect them like maybe a BIG protest or something massive thru emails. Somehow get a list of their policy holders (maybe Pamela could get something like that) and email them all a standard letter about Payton and about their policies and the lovely attitudes their insurance company has and I don't know asking them in the email to take 5 minutes of their time to comment to the insurance company what they think of their policies. Wouldn't that be GREAT!! Imagine the insurance company receiving 300,000 emails on behalf of Payton a day about how insensitive they are and how much they SUCK!! Wishful thinking and sounds a little crazy I know but it felt GOOD to get out!!! Give me their address I'd like to drop them a line!! Anyways I'm just upset to hear that you have to deal with crap like this, what is insurance for if not to help people who need it??!!After hearing all Dawn's insurance nightmares and now yours I just can't believe it!! I'll stop now but I am ALWAYS praying that Payton has and gets all that you need to continue giving him the best care. I definitely want to do the flyers again. If you want you can pick some pictures from the website and give me the names of them. I can copy them into a file and make another collage if you'd like? Just let me know. I'm glad you like the blanket from Auntie. My Great Grandma actually made it and Auntie was so excited to give it to Payton. We just got back from visiting them up in Jersey. Joe and I went to the Pocono Mountains and went sking for the first time. It was amazing!! I will talk to you soon, say hello to Robert from Joe and I. Give Payton Hugs and Kisses from the both of us. Bye for now Love, Lisa
Hi Debbie, Robert, & Payton Deb I'm very happy to hear that you are feeling better and I hope Rob is right behind you!! The insurance issue sounds like and is an ABSOLUTE NIGHTMARE!! I wish there was some way to affect them like maybe a BIG protest or something massive thru emails. Somehow get a list of their policy holders (maybe Pamela could get something like that) and email them all a standard letter about Payton and about their policies and the lovely attitudes their insurance company has and I don't know asking them in the email to take 5 minutes of their time to comment to the insurance company what they think of their policies. Wouldn't that be GREAT!! Imagine the insurance company receiving 300,000 emails on behalf of Payton a day about how insensitive they are and how much they SUCK!! Wishful thinking and sounds a little crazy I know but it felt GOOD to get out!!! Give me their address I'd like to drop them a line!! Anyways I'm just upset to hear that you have to deal with crap like this, what is insurance for if not to help people who need it??!!After hearing all Dawn's insurance nightmares and now yours I just can't believe it!! I'll stop now but I am ALWAYS praying that Payton has and gets all that you need to continue giving him the best care. I definitely want to do the flyers again. If you want you can pick some pictures from the website and give me the names of them. I can copy them into a file and make another collage if you'd like? Just let me know. I'm glad you like the blanket from Auntie. My Great Grandma actually made it and Auntie was so excited to give it to Payton. We just got back from visiting them up in Jersey. Joe and I went to the Pocono Mountains and went sking for the first time. It was amazing!! I will talk to you soon, say hello to Robert from Joe and I. Give Payton Hugs and Kisses from the both of us. Bye for now Love, Lisa
Sorry about the double Deb I didn't know it had already sent!!! XOXO, Vegtable
Hello Debbie Rob and Payton, We wish you the best, you are always in my thoughts and prayers. Love, Dawn Sansone
Hey Deb,Rob & Payton, Glad to hear you're all feeling better (physically anyway). Can't stand to listen to this insurance Bull Sh*t...it totally pisses me off. I think your friend is right we all should write to these folks & let them know just what an injustice they are doing to Payton. Can't you get in touch w/the insurance commisioner of Florida?? Can't we all get in touch w/him?? God~ when is enough enough...they won't approve his formula,they won't approve equipment and now they won't approve nursing...oh I'm sorry they'll approve it just not the amount of nursing he requires. I say screw it Deb don't get sick of calling them & asking questions & demanding answers. Pester the living sh*t out of them until THEY are the ones to get sick of it & just give Payton what he needs so they don't have to listen to you any more. I say post their phone # on the journal & lets all make this happen. You can gaurantee that if one of their children had SMA this would all change in a freakin' heart beat. You just let me know who I have to call & I for one will make damn sure I'm on the phone 3 or 400 times a day!!!!! Deb~ tried to get in touch w/you today...Mom said you were at a meeting. Give me a holler soon!! I miss you!!! xoxo Shan P.S. Give Lil' P a smooch for me please!!!
Hi Debbie,Rob, and Payton, I am so glad I finally got to meet you Rob and Payton! I wish when we were there we could have helped instead of just visiting. I didn't know you were having trouble with the ins. paying for a nurse. You know nothing against old people but they have nurses come into their homes every night for years and years! I don't understand their thinking, what about the people who have ins. and hardly ever use it? So are you guys staying up all night? Oh my, I wish I could have stayed longer. I really enjoyed my visit but it wasn't long enough. I can't wait to get my pictures back, and hopefully everyone is in them!! Lorrie
hey guys!!!!! well just caught up on some reading glad to hear everything is going well. i can't till the so many angels benefit. my parents and brother are up visiting so we've been running around like crazy. well just popping in to say hi and i miss you. you can send my invite either house. i'll end up getting it ok.
did you get the pics i sent through mike? love you xoxoxo jax
Hello out there! Well, I just got home from work. I do enjoy my bar shifts very much. They are short, fun, and well worth the money! I only wish I could do them more often! Payton is doing great! He went to PT today without me, and went with daddy and grandma. I watched him going out the door on my moms shoulder and felt like I was sending him off alone for the first time, and was such a proud mommy! It isn't the first time he has gone somewhere without me, maybe the 2nd!!! Anyway, I hear he did great--and had no problems. Awesome. Tomorrow, we have a lot of work to do. I will get in touch with Paytons doc and see if we can get that letter expedited to the ins. company and maybe get temporary help. We will have our appt. with Social Security this weekend (Payton must go through Social Security first, because he has a disability and that is why we need help), actually on Friday, so I will keep you updated on how all that is going. In the meanwhile, we are managing with 40 hours of nursing a week, and as of Feb. 28th insurance is taking us down to 28. Like I said, they don't deny the need, they just don't have to pay, according to our policy. Anyway, I never thought not having nursing would affect us the way that it has. It is SO IMPORTANT!!! They give us peace of mind while we sleep. I cannot put a dollar amount on that!! I do NOT sleep when there is not a nurse here. Maybe for a couple of hours at a time-Max-and they are not sound hours.And this is not to mention all the HELP they give, cleaning equipment, taking care of Paytons' food and making sure he is fed every two hours, turning and changing and making sure that his face is dry (he could get a rash from all the drool--and plus he HATES when his face is wet) they monitor the equipment and let us know when something needs to be fixed or looked at, they monitor GI issues and respiratory issues in case we need a doc, and basically just give me some time to do laundry, go to the bathroom, write on the computer, take a shower and sleep. While they are here, I know a trained professional that CARES about my baby is caring for him at his side and knows what to do if he stops breathing or gets a mucus plug and needs help!!! I had no idea how much I needed these things, and how much I appreciate the nurses...Anyway, hi Jackie and Lorrie and Shannon and Lisa and everybody that reads this journal!!!! We appreciate it sooooooooooooo much!! Debbie and Jason, thanks so much for visiting with us Sat. night! It was a nice surprise-and we enjoyed having you-even if only for a short while!! Definitely come by and visit anytime you come down!!
HAPPY BIRTHDAY DAD! GRANDPA! FATHER-IN-LAW!!! :-) We love you very much and enjoyed dinner and ice cream cake with you last night!!
Also, HAPPY BIRTHDAY HOLLI!! Hope your 29th birthday is as fun as mine will be!!!!!!!!!!
Well, we miss you too Jackie!! I have not seen any pics yet, but I will ask about them!! When will you visit? Spring Break? Well, I will send you a pic!! Kisses and hugs from Payton me and Rob!! Lorrie it was great to see all you guys--you need to try and come down more often! We really enjoy seeing grandma-so it is nice to have her for a few months! Please send me some pics when you get them!!
It looks like the garage sale will be at my mothers house! This is because they live right on Royal Palm Blvd!! SO, if you can help or want to come or just want to donate stuff--get to me or get it to me this week!!!!!!! It will be on Feb. 23rd and it is coming soon! Wish us luck!!
Take care everyone, especially you precious innocent little sma babies out there! We are pulling for ALL of you! :-)
Hey Deb, I definitely have stuff for the garage sale. I am looking forward to it. I think I will come by and be a shopper. I wish that I could work it with you guys, but I have no one to watch the kids. Let me tell you, it is amazing how much stuff you can stand to get rid of. You think you're going to use it, or wear it, or for that matter will STILL fit into it!! Please don't laugh at the amount of shoes I'm donating. I used to wear heels to work. But, after having the kids, my foot size went up about 1/2 a size. (so did my butt!! shhh!) Anyway, I hope that I made you giggle in this yucky time you're having. Talk to you soon... I'm going to call you to come by and drop the stuff. You live close enough to me and I can swing by, if that's alright. And I will get the address of the sale. Take care, Payton, little buddy. I hope I get to see you. Anissa
Deb - It was so good to see you at Outback on Sunday, we miss you when you arent there.....Its so nice to have someone so positive and upbeat around! You have so much on your mind, yet you always take the time to ask how everyone else is and are always there to listen, Payton is so lucky to have a mom like you! I was so happy to read that Payton moved his legs! that is so great!!! I'm loooking forward to the event too, i didnt get to go last year, but i will be there this year! I'm so mad about the nursing cutbacks you are having to deal with! As if you dont have enough to worry about! Let me know if you need anything please! Good luck with the garage sale too, i still have some stuff to give Shannon! I hope it goes great!! I just wanted to let you know that i was thinking about you guys! Give Payton my love, and know that you are all in my thoughts! Love Brooke
Hey Deb, thanks for letting Jason and I come in and hang out with you guys. It was good to see you again and to finally meet Payton! Such a good boy! I hope you and Rob get this insurance thing worked out. What kind of people are in this state? You KNOW if it was their child who needed help, they would get it! Keep up the fight and never back down. Your son deserves it. So do you. All of you are in my thoughts and prayers.-- Jason said it was cool to see your mom and dad after all these years. He says HEY to every one! Well, I gotta go but I hope to see you guys again soon . Take care, Debbie
HELLO. Well, grandma was kind enough to watch Payton while Rob and I got a break, and went to see a movie. We have been wanting to see JOHN Q since the first preview, so we saw it tonight. For those of you that have not seen this movie, it is a MUST SEE. Not just because you will see what ALOT of our lives are like, but because it portrays the truth, the truth about our healthcare system, the truth about illness, the truth about docs, and hospitals, and the TRUTH about insurance companies....Within the first few minutes of watching this movie, I was like 'oh god, was this a mistake' because I was ALREADY getting tears. EVERYTHING in the movie was similar to something that we have been through. And while it has been tough, and we have seen the worst and best in people, we/Payton do not have that urgent need that someone with a defective or failing organ has....This man went through everything that we are going through, but he needed a heart for his son, and he only had days/weeks before his son would DIE. He had full coverage, but his insurance found a way to give him half coverage, then denied paying for the transplant, because it wasn't in his policy. He says, "oh no, I'm insured! It's covered." The hospital says, "you may very well be insured, but this is NOT covered!" He applied for medicaid, but did not qualify, because he made too much money ($18000 a year)...His friends started giving him money and having garage sales,etc...and I was hysterical because it makes me soooo upset that this is the ONLY way sick kids get what they need!!!!!!!! WHY DO WE HAVE INSURANCE IF THEY DON'T PAY???? WHAT ARE THESE STATE FUNDED ORGANIZATIONS FOR IF YOU ARE BROKE AND SICK, AND STILL DON'T QUALIFY????? If someone can answer this for me, please do. I was crying pretty much through this whole movie, but please see it anyway, and you will definitely get a better picture of what we have been through. I told Rob that if things ever got like that for us, I would be HAPPY to be the one to rock the boat, and get what my son needs. HAPPY.....And even if you don't see the parallels, you will see what insurance does to everyone...not just us, we just bring it to light, because we actually want to use it. But most of you don't realize how little they will do for you if you get REALLY SICK, or if someone you love does...So remember, if you EVER have an opportunity to vote locally, and change our healthcare, DO IT!!! NOT just for PAYTON, but for EVERY SICK CHILD OUT THERE!!! There are plenty of them out there and they will all be thankful, believe me. Anyway, enough about that. My ins. company has not recieved our nursing need letter yet from our doc, so we are waiting on that transaction. When I found out what their decision is, I will let you know. We will apply for SSI on Friday (you CANNOT get medical care through medicaid, without first applying for SSI ) We will certainly be denied for this ( you have to be living under a bridge and not even HAVE a father to qualify) and then after that comes through, we can be considered for medicaid. IF we get approved for this, we may get some help with nursing care. THis could take weeks, and that is why we must apply for temp. assistance with the state (while we also beg the medical director at our ins. comp. to help temporarily) We must go through an application process for this temp. service also, and wait and see if we get approved for that...Sound like FUN???? Anyway, we are VERY excited about the yard sale this weekend!! Please, if you want to get rid of ANYTHING, let us know right away!! Rob and Michael, or Shannon will pick up any big items you may have, just let us know!!!!!!!! We are only doing it for one day, and we are going to try our hardest to get rid of everything!! If ANY one wants to help, we will take it, just show up or call me. Email me and I will give you my numbers and moms address!!! We will be selling sodas and baked goods, so if you want to stop by and browse....please do!!! We love all you guys and we know your hearts are all with us in this fight, and it means more to us than you will EVER know. If it weren't for family and friends we could not fight like we do. Just watch JOHN Q and you will understand why I was hysterical when their friends started making it happen. All of a sudden you realize that the good, not greedy, wonderful, loving family and friends, that you have never given a DIME to for insurance or taxes or healthcare, are THE ONES THAT MAKE IT HAPPEN. NOT the SICK, EVIL, GREEDY, SELFISH BASTARDS that are making BILLIONS off of the dollars that we ALL give to them each month to "insure" that we are covered, just in case we ever need it. Well, I know that some of this is disturbing and uncomfortable. But this is the truth. And WE need to change it. It is absurd that WE PAY THEM, and they do not do what they are paid to do. INSURE US FOR GODS' SAKE!!!!!!! Well, enough for one night! Have a great weekend everyone, and keep your fingers crossed that our yard sale will be successful!:-)
Hello dear ones. Well, I heard that the medical director was looking over Paytons' case today. I also heard that the longer he takes to review it, the better. He had ALL of Paytons' information sent to him from our nursing company, and ALL of Paytons' most recent nursing notes sent to him. I hope that all the times nurses have seen Payton desat were charted. I don't know if they have, but I know that it is important for the ins. company to know just how fragile Payton is, and how quickly things can go wrong. Well, keep your fingers crossed...Payton is not in a good mood this evening and I am sure I will be up most of the night (no nurse), but fortunately we have a nurse tomorrow. So I will sleep tomorrow. Which is good because we are getting up at 5:00 AM!! on Sat. That may be ok with Rob, but I don't usually get to bed until about 2am or 3am, so it will be tough for me. I am excited though, so it won't be so bad! Remember, this is the last day to get stuff in for the garage sale!! If you need me to get something, let me know right away! I have an appt. with SSI tomorrow, so that should move this medicaid thing along, and maybe we will hear something from the temporary assistance people??!! Hopefully anyway........Have you seen JOHN Q yet???? :-) Remember, this is a MUST SEE MOVIE!! :-) Well, I must go because the love of my life needs me. Take care everyone. Oh, and thankyou sooooooooooo much to EVERYONE that has donated to the garage sale!!! We have accumulated alot of STUFF!! And Anissa, I am sorry I couldn't be here when you came by (had to work) but I hope you enjoyed seeing Payton!! He is quite handsome, huh?? Have a great weekend!! Deb
Hi Deb, Rob, and Payton, Tammy and I plan on coming to the yard sale, and also planning on seeing John Q. I know how you feel with the ins. co. My Mom had to have a kidney trasplant back in 1969 , but the point is she had no insurance, because they would not insure her. but after all was said and done, she had dialysis treatments for a year and finally the transplant , but did not work, the tissues did not match, so she died in 1970, then they took all my Fathers assets to pay the hospital bill. But then I read in the paper that The mexicans come over the border to Texas and get dialysis for free, does that make any sense. All I can say is keep fighting , even though you should not have to . I will pray for you and Payton, see you Sat...
Hellloooo.....Well, tomorrow is the big day! We are very excited! We are praying for sunny, clear skies, but the weather is a little iffy, so we will keep our fingers crossed and hope for the best! IF it does POUR, we will reschedule, but we are REALLY hoping that does not happen!! THANK YOU SO MUCH to all of you that donated stuff to the yard sale!! Wish us luck! Payton is doing well and we are happy to have Sandra (Paytons' nurse) coming tonight! We will need her!! Payton fell asleep after crying for about 2 1/2 hours last night. He was either mad that I made him cough, or just cranky and not wanting to fall asleep even though he was exhausted. I think it was a little of both!! But then he slept like a champ and I just got up every couple of hours to feed him. Take care and have a great weekend! Deb
Hello out there!! I am in a super rush and have to go to work, but wanted to let everyone know that the yard sale was cancelled and rescheduled for next (this coming) Saturday. We were rained out, but we figure this just gives us more time to collect stuff and get the ad in the paper this time!! So don't forget, this Saturday!! (March 2) Payton is doing great and I'll write more later Deb
Hi! Well, I am trying to get ready for work, and take care of Payton but I wanted to write and let you all know that all is good, Payton is great, we are getting SO much last minute yard sale stuff, that I am glad that it was postponed!! I would like to take this opportunity to thank everyone that has donated their goodies, and their time!! I know alot of you plan on coming and helping out and we appreciate it SOOOOO much!!!!! It is a lot easier when you have so much help!! We will have baked goods (thanks to Jen B!) and sodas, etc... so if you just want to come by, please do!!!!! We will be focusing on the benefit after the garage sale, and I am just now getting all the donation letters and bios printed so they will be ready when the yard sale is over! Take care and stay healthy everyone! Deb
P.S. Have you seen JOHN Q yet?????????
Hello Hello Hello. Well, we were approved by Paytons' insurance company for 40 hours a week of nursing, for one month. I guess they felt that we would be happy with that since they were going to drop us to 28 hours a week starting Thursday. Well, I am happy to have 40 over 28, but am very disappointed that we were dropped to begin with, and then not even notified or given ANY advance warning. We were called and it was effective IMMEDIATELY. I can't even believe that is legal when we are talking about someones health and nursing care. What if Payton didn't have us??? What if I worked days?? Or 10 hour shifts??? I would just lose my job I guess, and they don't care one way or the other, they just don't want to pay.....So, as you can probably tell, I am happy but not sending them a thankyou card. We got the SSI info in the mail today and I am mailing it back out tomorrow or the next day (need copies of several things) I am really keeping my fingers crossed that we get approved for medicaid....Let's just hope they do the right thing, and approve us. Shannon, it was great to visit with you and your family today, I want you guys to come and see Payton soon!! Bob, it was good to talk to you, and we are THRILLED that school ends early enough for you to come to the benefit!! We are VERY excited for you to be there!!!!!!!!!! Give Briannah and SHane a kiss for us! For those of you that don't know, the benefit is JUNE 8TH. So MARK YOUR CALENDARS!! We will be selling advertisements and personal messages in the auction booklet, so if anyone wants to let me know early, just e-mail me the info. We will be doing the printing through Yovino Printing again, they did a FABULOUS job last year!! I will be sending out the donation letters this week, and hopefully we will start getting the invitations ready next week. If you have any questions or concerns, or ideas, please feel free to email me about anything!! Payton is doing great and has been a "bugs life" junkie for days. He won't watch anything else!? Well, tomorrow he has speech, which we missed last week because Eileen was sick, so we are looking forward to that! He is still moving his wrists! and his legs! Take care everyone and have a good night!!!!!!!
Payton you are such a strong little man. Keep moving those wrists and knees. I think that all the love and support that you get from everyone helps. I know it always helped me. :) Keep being a trooper and i will come visit you soon. Deb i will see you saturday! Love always, jen xoxoxoxo
Hello Payton and Debbie..we were just checking in on you guys and seeing how things are. Hectic as usual huh? Just wanted you to know we are as always thinking about you all and am glad to hear things are going fine (of course except for the nursing thing). We send hugs to you all!!! Lily sends XXXXXXOOOOOOOO's to Payton too!!!
Hi everybody! Our house is FILLED with yard sale stuff! FILLED!! We are excited about this weekend! I have a very busy weekend coming with lots of work, and PT visits, and speech visits, the yard sale, and lots, lots more!! So, wish us luck and some sanity in between!! (and maybe some sleep!:-) ) Renay, everytime we try to talk, we miss each other!! I will try to call you at work tomorrow! Marni, have fun in Orlando, you know that is our favorite place!! and Paytons' too!!!Payton is sleeping--no nurse, so I must go, but he is doing great! Take care Love Deb
Hi Gang.....Go Payton,Go Payton,Keep'em movin!!! Need to get my butt by & see my little buddy soon. Excited about our yard sale...we've got so much stuff for sale I can't wait!!!Knowing me I'll come home w/more stuff than I put in the sale!! You all know how these things work so if you want the good stuff be sure to come by early...lots of baby items available:car seats,high chairs,toys...looking forward to the benefit..want to get those donation letters out ASAP. If you have any ideas for items let us know. Have a great day & I'll see ya'll soon. Weather looks good for Saturday yipee!!!!! Love you guys, xoxox Shan
Sorry to hear the sale was rained out. What is the address again? Also you speak so lovingly about your nurses...they must be wonderful. Please tell us the name of this fabulous nursing agency...please.
Hi guys, Just stopped by to read the journal. We are so proud of Payton for moving so much! How exciting is that? We can't wait to come by and see him, we know the yardsale will be a huge hit!! Glad to see you guys doing well...sorry about the nurses...i guess if it doesn't effect them, they don't care, right! Anyways...we are so proud of you little guy. See you soon!! XOXOXO Jamie, Ryan, Trinity and Zoe!
HEYLO EVERYONE!!!! What an exciting day!! I just got home from work, and must get Payton to bed, but I wanted to let everyone know about our wonderful day today!! The YARD SALE was phenomenal!!!! We had no idea what we were in store for, well, I didn't anyway! But it was quite an experience, and really entertaining, and fun! We all had a great time, and we all worked together to make it a huge success!! We had no idea how much we could raise just from a yard sale!! This money will be saved and spent on all of our costs to start up Paytons' Pals. If we need more to start it, we will have another yard sale, or car wash, or something like that. If we have more than enough, we will use whats' left over to start our account. We have a fabulous accountant, Uncle Kenny (he is the BEST in case you are looking for someone to do your taxes!) and he has worked with non-profit org.s before, so he will be helping us start ours. THis, we hope, will be a major undertaking for us, our family and our friends, and we are hoping to make a HUGE difference for kids that have sma and their families. We have been sooooooooooooooo lucky to have ALL OF YOU, to help when we needed the help, and we want to do the same for those that do not have the help and friends, etc...... that we have! So, wish us luck!! We will be doing our June 8TH fundraiser with FSMA, but plan to do lots of fundraising with Paytons Pals once we are up and running!! A huge thankyou goes out to all of you that helped us today!!!! SHANNON, DEVEN, KENDAL,JEN B., RYAN, MARY, ERIKA, JOE, TONY,GRANDMA, MY HONEY, and to all of you that stopped to by to root us on and watch TOny flag people down on ROyal Palm Blvd. (He has some great dancing moves!) Thanks Sandra, Dwayne and Dwayne, Jr! Peter, Kim, Alina, Luke and Eric, Rich, Dave, Travis and to anyone else that was there supporting our efforts!! It was really a great event and fun, so next time you should try to stop by and join us! Our next project is our benefit in June. THis event is to support the efforts of Families of SMA. THis org. donates 80 cents on the dollar to RESEARCH, and this is a GOOD thing!! We need to find a cure for this disease!! For REAL, we can do it! It is just money, and we will raise it, somehow, some way! If everybodys' yard sale discards can raise $762.00 in one morning, just imagine the possibilities!!! One of the co-producers of the show "Roswell" has a child with sma that is one month younger than Payton, but has type 2. He had an auction on ebay, that ended yesterday, where you would win a day on the set, and lunch with the writers of the show. The bidding ended at over 4,000 and all the money went to FSMA!! Awesome, huh? His mother and I have talked, she is a great lady, and lives here in SOUth Fla. Anyway, I really must go, I will write more later, but just wanted to say THANKYOU so much to everyone that is in this fight with us! I promise that I WILL NEVER LET YOU DOWN, AND I WILL NEVER STOP FIGHTING TO FIND A CURE!!!!!!!!!!!!!!!!!!!!!!!!!!! Love, Debbie and little Payton P.S. Thankyou everybody, hopefully one day, you will all see me walk, and talk good and do cool stuff that my parents can do! But, I promise I won't talk as much as my mommy! love, payton :-)
Hi Freemen's, I just wanted to drop a note to say hello and that I have been thinking about all of you. How is everything going? I really miss coming by to see Payton and work with him. I thank you for affording me the chance to work with your son. I'm writing tonight because I finally broke down and got a computer. I will try to be better at keeping in touch. Please let me know how things are going. Best Wishes, Denise Zeroff (speech therapist)
Hi out there!! We have finally got our donation letters for the FSMA benefit copied!! We have a donation letter with a bio of Payton and the "quick facts about sma!" If anyone would like some of these letters to pass out or to maybe have something donated to the benefit, please let me know!! I will get them to you ASAP....I am sure alot of you are wondering about "paytons pals?" and what it means......We will be setting up our own non-profit organization as soon as possible, called Paytons Pals. This will be similar to the ones you have heard of, Families of SMA, Andrews Buddies, Miracle for Madison, etc....we will donate 75 cents on the dollar to research, 22 cents on helping families, and 3 cents to keep us up and running. We wanted the majority of the funds raised to go to research, because obviously, our #1 goal is to FIND A CURE!!!!! But, we also wanted to make our #2 goal just as much a PRIORITY!! and that is to help the families of these children!! We have been so fortunate--when Payton needs something--our friends and family get it for him. When insurance won't pay--they find a way...But there are hundreds of families that are not as fortunate! Mothers that must stay at home 24 hours a day, and don't have the "luxury" of going to work anymore (believe me, it has definitely become a HUGE luxury- I am not kidding) or maybe don't have a workplace that can be as flexible or that cares as much as Outback! Or maybe they don't have the AWESOME friends that we have, and in many cases, don't have any friends at all. THis disease is hard to deal with, even for the families, so alot of times friends just lose touch, because they don't want to hear the bad news or deal with all the heartache, etc...Lots of families don't live close to their relatives, and therefore haven't been out of the house (no babysitter) in years!!! Thanks to my mom-Rob and I can get out once in a while, and we all know how important that is! Some parents are not together, or not together anymore. THis kind of thing can tear families apart....My point is, is that there a ton of little angels out there, that may need the hi-low like Payton did, to get a little freedom or FUN in their precious lives, and DON'T HAVE ONE!!! How tragic is THAT????????? Well, we plan to make that change! We want to focus mainly on things like the chair, and equipment, nutritional items, INFORMATION PACKETS!!, and plenty of other goodies! If you have met Payton, you will agree that these kids deserve ANYTHING that will make for a better quality of life!! SO, that is what we are doing. We will still be donating to FSMA, as we believe that they will be resposible for finding a cure, and any dollars sent to them, are good dollars, going to a good cause! We hope to be up and running by the end of the summer, and I will keep you updated as I get info on what is happening. We are REALLY looking forward to this project and hoping to have ALL of your support! If you have any ideas, or suggestions, please email me or write here on the journal--I am VERY excited about all of the possibilities and ALL of the ANGELS we will help! We will need volunteers to help with our org. So, if anyone is interested, even if you help "part-time" please let me know!! Love to you all--Payton is good and enjoying "bugs life" (SURPRISED??) Talk soon Debbie P.S. Still waiting to hear about medicaid and whether or not we are approved!
Hi Payton,Debbie and Rob. I opened an old e-mail today that I had somehow overlooked. It was from Helen and forwarded Paytons home page address. I opened it and found this wonderful site. I read all "mommy's" e-mails from January thru 5 March. I could sense in one day all Debbies highs,like theDisney trip and the lows like the insurance problem; but most of all is the love and dedication that is so evident. You guys are so great I shall continue to monitor this site. LOVE TO YOUALL,
hi,PAYTON my name is MARLENE and I do have another angel just like you named EVAN 17 MONTHS OLD,YOU GUYS ARE AMAZING PRECIOS GIFT FROM GOD NO MATTER IF YOU CAN WALK OR SIT I THINK YOU ARE GORGEOS AND GUESS WHAT IAM PREETY SURE THAT SOON WILL BE A CURE FOR THAT TERRIBLE DESEAS I WILL KEEP YOU IN MY PRAIYERS GOD BLESS YOU AND FAMILLY
Your website is great!!! Thank you for sharing.
Hi everyone! Our nurse had an emergency tonight, so I only have a minute, but I wanted to say hi, and let everyone know Payton is doing well. He actually looked a little under the weather for a couple days, but he is pink and looking good today! Yeah! I still have not heard anything about medicaid, but I will let you know. We are working feverishly on these donation letters. I made up a bio of Payton with his pic, and I have sma "quick facts" and the donation letter itself. They will all go together. Well, I really must go! Hi grandpa and Lauren and Marlene and Al and everyone else out there! We hope everyone is safe, happy and healthy! Take care--Deb
I just had to add one thing....Did anyone hear about how the airlines got smart and pooled all their money for insurance costs--and are now paying HALF of what they were paying to these criminal "insurance" companies, that were NOT PAYING when they needed to. Isn't that just the greatest thing ever???????? Maybe we should all get SMART and get on the bandwagon!! Maybe then you could actually get help when you get sick, and not just roll the dice and hope that whatever ailment you end up with, is clearly covered in your insurance policy?! Then maybe you won't pay outrageous rates (but even if you were, at least you'd have COVERAGE if you got sick). And maybe, we could FINALLY put these disgusting people OUT OF BUSINESS!! :-)
Yahoo they're finally almost done now let's get those benefit donation letters circulated!!!! Put on your thinking caps folks....who can we ask for donations?? Restaurants,hair dressers, nail techs, tattoo artists, pet shops, groomers, vets, damn how cool would it be to get some sort of plastic surgery donated from Florida's Center for Cosmetic Surgery??? Cell phone service, a years worth of oil changes, car wash/detailing, etc. Think of anyone and every one that provides a service to the public. What do you pay for every time you go out?? What are you saving for or thinking about getting or doing??? Together we can make this benefit a huge success for SMA and maybe this will be our year to find a cure. SMA and families living with an SMA child need us.....so open your hearts and put on your thinking caps!!! This is Payton we're talking about...I want this little boy to hug his Mommy & Daddy without any assistance, to run, to play, to know what a cheese burger from McDonalds tastes like!! WE TOGETHER CAN MAKE THIS HAPPEN. We have 3 months to do it so let's go out there and get those donations....every little bit we put into this counts so if you don't have 5 free hours a week but you do have 1/2 an hour please use that time to get donations..1/2 hours really add up quick!! Thanx to everyone for pitching in now and in the months to come. I love you Freemans!!! Luv, Shan xox
Heylo out there! I must share with all of you that I am SOOOOO excited about our fundraiser and future fundraisers! I can't wait to help as many of these kids as humanly possible! There are so many of us that I know we will make such a HUGE difference! Payton is doing great-running sats of about 99 OFF the bipap! He is loving speech therapy and really doing well with PT. Susan says she has noticed alot of "tone" in his hands and wrists and he is moving them more now than he ever has! How exciting! And not only is he moving his knees, but he has started to hold his legs up (in a bent knee position) on his own, which he has also NEVER done! SO, we are really looking forward to finding this cure--and I think Payton is too! Take care-Deb
Hello out there! Just got home from work, and I am sooooo looking forward to "Payton/mommy time, so I must be quick--just wanted to let everyone know that Payton is doing great and all is well!! We are planning a lunch to go over fundraiser plans next week, so I will see you then, girls! Take care!
Happy Sunday everyone!! Lots of promising leads for auction items for the benefit. If anyone has an "IN" with any of the local news stations or newspapers let us know. We'd like to get some sort of coverage for the benefit....and maybe a story or 20 to let the public know what we're doing...who knows they might just be knocking our door down to donate stuff for the benefit!!! So glad to hear about Paytons movement...keep up the good work lil' buddy!!! Deb ~ give me a holler soon.Luv ya,Shan xo
Hi, Payton! Just a note to let you know that Brian, Brittany, and I are all looking forward to seeing you next week! We can hardly wait to drive down there and tickle your toes, you cuddle-bunny, you. Tell your mom and dad for me, alright? LOVE! --Auntie Amy
Heylo everyone! I have been working SO much lately-that I really haven't had time to write my usual novel here. Sorry. I am sure you are all VERY dissappointed! Working so much is good for money--but rough on mommy! Especially because it seems that every night I work, NO NURSE!! It is actually that one of my nurses' son got sick, one started another job, etc..etc...It seems that with this whole insurance/medicaid thing, my nursing situation suffers, and won't be right til we get the other situated. It sux because this is when I need the most help--it's like getting 84 hours worth of nursing in 40, and then not getting the 40. It makes for alot more work and a lot less sleep--not just for me, but for Rob, and even grandma!! OK, enough complaining, I hate complaining, and I hate complainers, so ignore me. It will get figured out, it is just a pain in the butt!! Payton is doing well, and we are about to get him to bed, so I must go. I have some really exciting news, but I will save it for tomorrow! Good night everyone and take care! (Don't you hate when people do that????!!!:-))
Hey guys, Just a quick hello and catching up on the journal and your news. Glad to hear that all is going well. I'm really excited about all the stuff that Payton is doing! I would love to have some of those letters for the benefit. I can think of at least a few people that I can hit up for donations. Every little bit counts, right? Plus, I would love to hear what kind of help you need for your organization (Payton's Pals). If it's possible, I'll do my best to help out at least part-time. Ta-ta for now....Talk to you soon. Anissa
You are all in our hearts and our prayers always. Love, Daun
Yes, I hate when people do that. It sux. ;-)
Hello out there!! Well, I guess I better share my exciting news! I usually can't hold it in for long, and the plans are still being made, but Dr. John Bach (guru of sma protocol, and our personal hero) has agreed to come to our benefit this year and speak on behalf of sma children everywhere!! Those of you with sma in your family, know him, and what he has done for our children. For those of you that don't,he is just about the only doc known to man that actually thinks that we (sma parents) should not just go home, call hospice, and watch and wait as our children slowly die. NO DOUBT, these kids are more compromised than most--anyone that has met Payton will admit to that. But just because they can't move, doesn't mean they are not people. Or that we should just throw in the towel. They may not move much, but they are NOT mentally impaired in the least (most sma children have an above average IQ), and they deserve a chance! ESPECIALLY WHEN WE ARE SOOOOOO CLOSE TO A CURE. For me, personally, and for Rob, just letting Payton "go," was never an option. We were privy to information from other parents on Dr. Bach's "protocol," and we gradually started doing these things for Payton as he needed them. Dr. Bach has helped saved so many children, and follows many that live all over the country. He is a WONDERFUL doctor, that truly CARES about his patients and not just his paycheck....We are so completely thrilled and honored that he will be at Paytons' benefit, and we hope you ALL enjoy meeting him. If it wasn't for him, we would not have our precious son with us anymore. How BIG is that???? And a bonus, is that so many Florida kids will be able to see him/be seen by him that would not have been able to otherwise. We would never have been able to go all the way to New Jersey with Payton to have a dr. appt. with Dr. Bach. So we are VERY excited!! And, as a footnote, for those that may be reading and have lost a child to sma, I want you to know that I do not have any judgement against anyone that has ever decided not to go with Dr. Bach's protocol. I really don't. I would say if I did, because I am entitled to my opinion, but I am not ignorant, and I (Rob feels the same) understand that each child with sma, even within the varying types, varies. And some kids are weaker than others. Some parents don't even get the info that we were so lucky to get. But most important, it is not my decision to make and not my business. We do what we feel is the BEST POSSIBLE QUALITY OF LIFE for Payton, and I would not want anyone to judge us for that, LEAST OF WHICH, another sma family! We live the same sma heartache!We need to stick together, and FIND A CURE for this disease! NO DIVISIONS!! Take care everyone! No nurse tonight, must go and get everyone to bed! Debbie
Debbie!!! How exciting for you all....I am just in love with Dr. Bach because of the life we can give Lily and it is true that he is the ONLY doctor that gives our babies a chance at all. I have had the amazing opportunity to meet him and have him look at Lily and when we went to New Jersey to get Lily's g-tube we got to see him again and talk to him alot. He is one of the most wonderful men alive and I thank him so much for what he has done for all our kids. I will get to see him again in May because we are going for his conference in NJ as well. I am so excited not only for you and Payton to get to meet him in person but for all the kids in your "neck of the woods" to get to see this wonderful man!! I am so excited for you...I feel as if my balloon is bursting tonight with so much good news!!!! Hugs to you, Rob, and Payton!!!!!!! Gotta talk to you soon!
Hi Deb, Rob & Payton, Just caught up on all that is new! I have been busy with the wedding, school and being a bit under the weather! How exciting for Dr. Bach to be at the benefit! I look forward to hearing him speak! I need to get some of those letters; I have a list of places/people to ask for donations for the live/silent auctions. Looking forward to having our lunch so we can all talk about the great ideas for the benefit and Payton's Pals. I know it will be a huge success. Deb, I will call you soon so we can catch up, my voice was disappearing last night at work so that is why I'm writing. I am so excited about all the wonderful things happening for you, Payton, Rob, your family and other SMA families. We will find a cure! Everyone take care, love you all! Give Payton smooches for me! XOXO, Jennifer
Hello world! Hi Jenn and Amy!! Yes, I am excited too!! I was sooo surprised that Dr. Bach would be able to make it, but am sooooooooooooooo THRILLED!! I must put Payton to bed, we have a nurse tonight!!!!!!!!!!! YEAH!!! Hugs to everyone!!! Love Deb
Hello out there!! No nurse tonight, so I only have a minute, but I wanted to say THANK YOU to ALL of you!! So many have already talked to me about coming to the benefit, getting items donated, and so many awesome ideas it is amazing!! We are really looking forward to this event, and hope that everyone will come and support our cause and join the fight for A CURE!! Payton will be at the event, barring any illness, and so will some of our sma friends in Fl. I know that Ryan will be there, but I am not sure who else. There are many that live down here that may also want to see Dr. Bach, and may be at the event! So, we are getting geared up and very excited! Payton is doing well, he had his pulmonologist appt. on Tuesday and also his GI appt., both in WPB, where we spend most of the day on those visits. He did wonderful, he is SUCH a trooper! He is definitely realizing that it is where he gets his RSV shot, but he still handles it very well. He doesn't care much for his GI, but he doesn't like anyone messing with his g-tube! I don't think I would like it either! He is doing SO WELL with speech. He absolutely loves Eileen, and yells when she leaves! He loves talking or trying to talk, and we are really trying to work with him to do yes/no....Wish us luck! I know that there are alot of you that come and read this journal, and keep up with Payton, and I just want to thank you for caring and letting Payton be such a part of your lives! I look forward to all the things that Payton will do when we find this cure, and sharing them with all of you, Paytons' extended family. And believe me, you are. Love Deb
Just letting you know that I feel like 'extended family'. I love to hear about everything that is going on. I feel like I am involved because of the way that you relay what's going on. Thank goodness for this website. It is a great way to communicate and get info about you all. Take care...Love you Payton! Keep up the good work.
Thankyou Anissa! I love this site, because not only do you get to see how Payton is doing and what is up with sma, the cure and the benefit, etc....but I also get everything out without having to repeat myself a million times. I'm a big talker, as I am sure most of you know, and it got tiring trying to tell everyone ALL the things I had to say, and this has really made it easier, I guess, to spread the word, ya know?? Anyway, just got home from work! I am VERY tired today. Grandma let mommy and daddy go out for a little mommy and daddy time last night, so when I got off work last night we raced down to Fort Lauderdale to see Gary and Marlee, Peter and Kim and Amy and Kirk. It was Kirk's 35th birthday!! Rob will soon have the same event in his life!! Hee Hee! We had a great time, but are both very tired today, as we are getting to be old folks! It was nice to get out for a short while though. We try to do it every few months......I got to train Jenn H. on the bar tonight!! SHe did great and will be a great bartender! We were not very busy tonight, because of the holiday, I'm sure. We have a nurse tonight! YEAH!! Thank goodness......No news on medicaid. THey had requested some paperwork last week, and we are still waiting.....Payton is doing great and all of his latest movements have us really excited about the possibility of more!! Keep your fingers crossed! I heard through the grapevine that there may be some trials soon with cord blood, so we are really hoping this is true and hoping Payton can get involved.........Well, I don't think anything else is going on.....so, have a great week everyone and take care!!
Hello out there! It has been a busy time over here. Lots of Pt, speech, developmental meetings, letters to write, doc appt.s and of course I've been working alot so we are pretty tired. We have also been working on the benefit too.....Payton is doing well, we don't have a nurse again, so I am pretty exhausted. Last night was rough, Payton had a hard time falling asleep and cried for a LONG time. That is no fun for anyone. I had worked last night too.......We had dinner with aunt AMy, Brian, and Britney Spears! Thanks for coming over guys--we love having you and so does Payton!!! Tomorrow is a big day with Pt speech and work so I must try to get things going, but will write again soon! Love Deb
Hi Payton, Debbie and Robert: I was catching up on payton's journal, and wanted to tell you that I have been thinking of all of you and wanted to say hello and to send my love, I will talk to you soon.. Love Heather, Russell, Dallas, Chace and Uncle David
HEY GUYS!!!! WHAT'S GOING ON?? SO I NEEDED BREAK FROM MY STUDYING AND THOUGHT IT WOULD BE PERFCT TO DO SOME CATCHING UP ON THE SITE. I'M SOO HAPPY TO SEE THAT THINGS ARE GOING WELL WITH PAYTON AND THE EVENT. I SO WISH I COULD BE THERE TO HELP OUT BUT I'M SOOO FAR AWAY. I'LL BE HOME END OF APRIL SO I HOPE I CAN HELP WITH SOME LAST MINUTE DETAILS FOR THE EVENT. HOPE WORK IS GOING WELL DEBBIE, AND YOU TOO ROB. GIVE PAYTON A HUGE HUG AND SMOOCH FOR ME. ALSO DEB, TELL YOUR MOM I SAID HI TOO XOXOXOX
Just a quick hello to say hi to everyone!! We MISS YOU JACKIE!! Hope school is treating you well and work and fun too!! Come home soon! Hi Cousin Heather , Russell, Dallas, Chace, and Uncle David!! We miss you all too!!! Are you coming down for the benefit??? I hope so!! Well, Payton is doing well, we are hopefully going to start having a teacher here once a week and some occupational therapy too!! I am hoping for the best! Payton could definitely use the extra help! We are STILL waiting on notice from medicaid, etc...so we are STILL without adequate nursing coverage. I am sooooo upset with United, I could go on for days, but they dropped a bomb on us, with no notice, left us with no nursing coverage, and our nurses have to make a living, so most of them have gone on to other jobs, and Payton suffers. Is this what we pay $600 a month in insurance for Payton for??????????????????????? Someone please tell me how insurance companies get away with things like this???? I am still trying to figure it out. ANyway, I will write soon!love deb
I am writing to let all of the people that read this journal know there will be a car wash for payton on April 20th. It will be at the mobil station on Coral Springs drive and Atlantic blvd. I hope to see whoever lives around here there. We all need to came together and find a cure for our brave litlle man. We all love you payton and i hope to see you soon! love always, jen xoxoxo
Hi everyone! Well, I must say, I am so thrilled~Solange started back tonight, and while our medicaid thing is not figured out quite yet and we still do not have enough nursing hours, it is soooooooooooooooooooooo nice to have a sweet, familiar and good nurse taking care of Payton while we sleep....What a total treat! Anyway, Payton is doing great--he was laughing so hard with his dad tonight, that I actually went and watched the whole thing, because I had never heard him laugh so loud. This is loud for Payton mind you--but loud nonetheless. We were very proud parents. It is so wonderful to see him thrive in any way he can. SO WONDERFUL. It makes everything else seem completely stress free.....Jen Berman, thankyou sweet miss for organizing your car wash for sma!! How exciting!! I am looking forward to seeing all the girls there from Outback! I heard that we will also have Cheryl's sorority girls volunteering their time, so that should be alot of fun! If you happen to be around, and you have a car, please stop by and see us! APRIL 20TH!!!!!!!!!!!!Between 8am and 1pm. I have been in contact with Maria, and we are working on invitations for the benefit, and lots of other details. For those of you that don't know her, she is an angel.... She almost single-handedly operated and organized our event last year, and did a fabulous job!! It is really amazing how much work goes into these affairs, and we appreciate all of the time and energy everybody puts into this fight! We are all so determined to find a cure, I know that we will....So, Maria and I will be working on these things for the next few weeks. If you have any questions about advertisements, seating, food, cost, anything at all, email me and I will get back to you as soon as possible! I appreciate all feedback and any ideas you might have! pjf714@netscape.net ............We know that you all truly believe that we will find a cure and find one in time for Payton......It is what sustains us......Good night.
hey everyone...just getting ready to grab a qucik bite at friday's before i go out after some tests. i was thinking about payton today, because i was scrapbooking and put some pics of him in my book=)sorry i didn't get to call you back yesterday deb, i had to work at 4 and didn't get out till late. i'll try to call you this weekend? do you still admin in the morning? ok i'm thinking of you like always and miss you tremendously!!! send payton my love and kisses. xoxox jax
Hey Debbie! You bet Payton will be here and ready for that cure and Lily and Payton will have to meet and get to play and GET DIRTY and ruin some clothes....how exciting will that be? I am so excited to think that a cure is just RIGHT AROUND THE CORNER!!! Everytime I think about it I just get so excited and cannot wait to see my little girl (and of course all the other angels such as Payton) running around, being able to crawl up in my lap and throw her little chubby arms around my neck and tell me how much she loves me. I will do EVERYTHING in my power and pray hard that make sure that our kids get their miracle. I cannot imadgine (but am looking forward to it) being able to take my little girl to the mall and NOT WORRY about germs, or have her tasting different foods and watching her get full from THEM and not what is going through her g-tube. Our kids need a miracle and that is why all the fundraisers you all are doing is SO IMPORTANT!! We are the ones that have to get the job done for our kids because most Doctors, Insurance Companies, etc. don't give a **** about our kids. We have to fight for this and FIGHT WE WILL!!!!!! We cannot leave the fate of our kids in the governments hands, or the medical establishements hands, we have to take control ourselves and that is what people like you Debbie are doing because you know first hand what SMA is like and you will do everything you can to make the dream of a cure happen for Payton and for all the other precious kids with this horrible disease. I cannot wait until we can all get together and watch our kids play and talk about "remember when I didn't think my kid was going to pull through this episode?" yadayadayada. Sorry I have gone on and on and on....sometimes I just start going and don't stop!!!! Sorry if this whole thing doens't make sense.....Love you all and Hugs to Payton!!!! Way to go Payton on the laughing and moving!!!
Hi! We have a nurse again tonight! Yeah! I am going to TRY to go to bed before 3, so I will be short, I just want to remind everyone that our 2nd annual "So Many Angels" benefit, will be held on June 8th, 2002 @ Nova University in Davie, Fl. There will be Outback dinner, open bar, live band, dancing, live/silent auction, etc..etc... We plan on having lots of fun, and need your help! If you know of ANYONE that might like to come, please email me their address. If you have moved, and I need yours, email it to me. If you know ANYONE that might donate (any business owner you can think of) please let me know, get a donation letter, ask them if they are interested, etc... We will have an auction booklet that will offer lots of info, including advertisements and personal messages, so if you know anyone that is just interested in advertising, get me their address. Also, personal messages will be available this year in business card size, quarter page, 1/2 page and full page. The auction book alone, raised over $5,000 last year!! So, please, think of who might want to get involved, or help out, and let me know!! I have already got the P.O. Box for donations and ticket donations. The ticket donation will be $75, just like last year. The invitations will go out about 6 weeks before the event. ALL checks need to be made payable to Families of SMA, or FSMA. The checks and donations, etc.. will be mailed to The Freemans, P.O. Box 667498 Pompano Beach, Fl. 33066-7498..... Well, that is it for now, I am not sure what time the event will start, but I think it will be about 6pm. If you can think of any idea that may help, let me know! Love to you all, Us
Hi Payton, Dev and Robert, Glad you have a nurse. We may not make it again this year, but we'll do what we can for the June 8th event. Lots of love to you all. Cindi visited for a week with Danny. They flew home today. God bless.
Hi out there!! Well, I worked tonight~not too busy....Payton is fast asleep....We have a nurse....:0) We watched the end of the academy awards tonight. THey were good...Did anyone notice Gwyneth's horrific top?? Sorry, but someone should have stopped that from happening. Halle Barry was so good, I started crying. Go Halle! And I say Sharon Stone and John Travolta looked AWESOME!! Sorry, don't get out much anymore :0)......THANKYOU SO MUCH to all of you that are already sending me addresses! The more, the merrier, the better our success! I need EVERYONES address, so email away!! The invitation will come with directions to the benefit, instructions on how to advertise, etc....IF anyone knows anyone that is a celeb in South Fla., that you think may be coerced into coming to the benefit and helping out, let me know!! We would love to have some of our fav. sports figures come to the event, but this is a difficult task, so again, if you have any ideas, let me know!!......We STILL have not heard about medicaid, but I did receive a letter saying that it could take up to 120 days for them to decide. Which would be horrible, because we will go down to 28 hours of nursing per WEEK starting April 1st. Not horrible, HORRIFIC is more like it. So, keep your fingers crossed. It is hard to explain, but the best way for me to put it is....you know how when you have a new-born, you can't leave the baby's side? Like, not even to go to the bathroom really, in case something happens?? Well, it is like that, only more serious, because something happens all the time! Without nursing, we are ALWAYS waiting for that something--with no break. We don't want ANYTHING from medicaid, other than nursing, not money, not food stamps, not diapers, not formula (although that would be nice), not coverage for med. bills, just nursing care.....AND WE ARE NOT ASKING TOO MUCH!! Have you ever met Payton?? Have you seen him lately?? Have you ever seen him desat? Or turn blue? Or even just START turning blue?? Well, that is a regular part of our routine alot of the time...And even though we are used to it.... we should be able to be parents TOO! Nursing keeps us functioning pretty darn well. We were doing GREAT (yes, I mean it, GREAT...) until they dropped this no nursing bomb on us. AND it is not like there is anywhere to turn....nursing is over $100,000 a YEAR!! We are at the MERCY of the state, so WISH US LUCK!! We need it..... ANYWAY, I could go ON AND ON about this stuff, but please don't think we are living in some miserable shell...If you know us, you know that is not the case, we handle everything pretty darn well...and I think that is easy to explain. Just being near Payton is the most peaceful, easy, relaxing thing. He just takes away all of the stress and feeling of ramming your head against a brick wall. (just kidding:0)sort of) Payton is so beautiful, and so good, and so perfect.......I think I'll say goodnight with that!
Miss Debbie,Rob,and Super Trooper, wll today was my first trip through Paytons page and i am impressed!!!! i love the Toy Story theme. gotta add some of the little Marine men on here though. :o) but after reading Paytons story, i can definitly say as a Marine Ifantrymen i know absolutely dick about being tough. i thought i wasa hard ass, icant imagine going through what you guys are. you are what aprents should be made of. every child should be fortunate enough to have 2 parents like yourselves,just as every parent should be blessed with a child as tough as yours. i only hope my son is as tough as payton,make one hell of a Marine. oh well i am bbbling nw so i guess i better cut it. but anyways il be checking in regularly and cant wait for this yeas event. please pardon my spelling and grammar, the good lord made me to shoot things not write he he he. talk to yo guys sooon. Michael Murphy
Hello out there! Hi grandpa/greatgrandpa! I wish you guys could come down for the benefit! And Cindy and her family too! Well, we know you will be there in spirit, and thanks for always checking up on us!.....Michael Murphy, ever the MARINE, thankyou for reading and for keeping us in your thoughts, I love your idea about "marine for the day!" I would like to go through it myself, just for the challenge!! Do you think I'd get beat up bad?? Or REALLY bad?? HEE HEE....We should put Rob through it!:0) We are going to have security at the event this year, not just the school security guards, they will be there too, but we will have two police officers helping us out....I thought maybe about asking you Michael, but I don't know, maybe we'll just go with the cops. Less carnage. :0) STILL no word on nursing, it looks like it could be a wait......We have a nurse tonight again though!! It is so nice to have her here.....Don't forget, April 20th is Jen Bermans' car wash and apparently she has quite a team of volunteers helping out to raise money for sma! I will be there that morning and hopefully it will be nice out, so we can all get a little sun while we wash!!.........I would like to say a very heartfelt personal thankyou to all of you that are taking the time to help me right now with this benefit, and fundraising in general...We are all sooooooooooooo busy, and I know how valuable time is, and to spend some on Payton and his benefit is so awesome....I really don't know what I would do without you....So, thanks.
THIS SITE IS LIKE CRACK COCAINE I CANT GET ENOUGH.IVE STARTED TALKING TO SOME OF OUR "OUTBACK COLLEGE GIRLS" AND THEY ARE INTERESTED IN THE EVENT THIS YEAR SO I WILL START GETTING YOU SOME ADRESSES. YEAH I KNOW, I'MA MACK.OH WELL TALK TO YOU GUYS LATER. KICK ASS AND TAKE NAMES SUPER TROOPER. MURPHY P.S. I AM GOING TO START CONTACTING SOME TATTOO SHOPS TOMORROW, MAYBE GET MY SELF A LITTLE SOMETHIN' SOMETHIN'
hey Payton, Deb and Rob. I hope everyone is doing fine even if I know that you have all a lot of work to do for the event. I wish Matt and I could be there because we are moving to the States at the end of June, actually i could be there but not Matt, so he is the one to blame! Anyway, we will be there in spirit because both of us are supporting you with great enthusiasm and I talked to people over here who could maybe do something for you and the event, like giving money. Actually, I thought about firms who would be interested in your cause, because you know, in France, firms have to support causes with money to get a tax reduction...but then, the problem was that it was too difficult to support a cause overseas, you know, all the administration crap etc... Deb, if you were in France, you could get a great deal of money because here, firms are very generous! I'm just kidding...but, I tried! sorry, I failed! Nevertheless, I told people about sma, because here, this disorder is not so famous...and everybody wanted to know more about it, so I gave them the address of Payton's website and they were all moved by your story and now...Payton is a big star here, in France! They all said that you have a beautiful baby and they all asked me to tell you that you do a very good job and that Payton had and has wonderful parents, family, and friends. Keep on fighting! Hugs and kisses, and maybe, see you soon! Sophie
Hello hello hello....Payton is doing well, he seemed like he may be alittle under the weather yesterday, but is back on track today! THank goodness. Payton is fast asleep, we have a wonderful nurse tonight, so we will allhopefully get a good nights sleep! Thank goodness-after a crazy night at work....Just one problem after another, sometimes it is hard to keep up, but the night FLIES by, and before you know it, it is time to go home! I got to see Grandma and Molly and Mollys' friend from Ohio at the Outback tonight! It was great to see you guys! Hi Michael and Sophie! How cool is that, Payton is an international star! Please tell them thankyou and thanks for reading and to spread the word, sma is not rare, is killing thousands of innocent kids, and needs to be STOPPED!! I talked with my boss tonight, and she wanted to know if they found a cure, would it be able to eradicate the disease in Payton. I guess the answer is yes, if it involves stem cells, and treatment of the sort. If it were some sort of drug therapy, it may just lessen the effects of the disease, but that wouldn't be a "cure," just a treatment....We are close, it just costs alot of money. Iknow that is hard to hear, but it is true....alot of well meaning people are giving up lots of it to get us closer to a cure, but we need to SPREAD THE WORD!!! It is an attainable goal, we just need to reach people, let them know about sma, kids like Payton, that are so hidden from the rest of the world, that no ones knows they exist!! It is really hard for parents to do this alone, that is why we need your help!! Let everyone you know, know about Payton and what we are doing and email me their address, so I can mail them an invitation and we can get them at this benefit, where they can actually meet Payton, and get a better understanding of what this kids life is really like....Thanks guys....Love Deb....
Hi Payton, Rob & Debbi, This is Uncle Michael. Your Daddy finally built me a computer so I can visit your site and surf the web. Hope the Easter Bunny is good to you. I can't type to good, so gotta go. Love you guys. -Michael
Hey Payton-baby! Your favorite aunt, here. I just wanted to let you know that I miss you tons since we came back up to Arkansas... but that I'm really glad I got to visit you as much as I did, and that we got to play. You know, I think I STILL have your nose here somewhere. I'll give it back next time I see you, okay? Tell your mom I'm getting more addresses for her, and that I'm working on Chuck. :-) LOVE! Amy
Hey Debbie and Payton! We are very close to a cure for our babies!! I can feel it and I believe it! I just wanted to say hello to you all!!! Lily sends Payton hugs and kisses, very wet slobbery ones!!!
Yeah! Mommy is home early for once! How nice, we are about to watch a movie as a family, so I just wanted to say hi, and let you know that Payton is doing great! Hi Amy and Amy!! I agree Amy, Iknow it is coming too, I just wish it would get here already! We took Payton to his first drive-in movie last night! He did pretty well at first, but then he fell asleep (his automatic defense mechanism to deal with strange or foreign circumstances! Anyway, we woke him up and he was MAD!! So, he cried until we finally took him home....It would've have been better forhim, had we been a little closer and if it was a little cooler outside. But we will try again one day! Take care everyone!
HAPPY EASTER!!!!!!!!!!!!!!! Hope everyone had a great holiday! UNfortunately I had to work the whole day, but FOrtunately I got to eat dinner with my family at about 8:45 pm tonight! We had Outback for dinner and it was VERY good! Better late than never right?? When I came home, Payton was playing on the computer (with daddys help of course) and he was SOO INTO this game with Blues Clues on the computer!! It was quite exciting to see him into something new!! AND, thanks to the "hi-low" chair that everyone bought for Payton we are able to bring him over to the computer and play, which were unable to do before....So, this is a good Easter, Payton is with us and we are all Happy! Take care and have a great Easter evening!!!!!!!!!Must go to work, no nurse..........
Hi out there! Well, thanks to my mother(who is on spring break), I was able to get alot done today with the benefit, I made color copies (VERY expensive!) and got Paytons pictures done for the letters I am sending out. I sent a letter to every major sports team in Florida. I asked Paul Castronovo help us out with the event, and he said he would promote it on the air! Hopefully, that will help us along! I am waiting to get the press release to start the radio advertising, and news release (they will probably put it on their community calendar). We are also giving out lots of donation letters, so if you need any, let me know. I am also going to put together posters to put up at the Outbacks to spread awareness about Payton, sma, and the event. If anyone is particularly crafty, let me know, as I will be putting these posters together at home.....Well, I think that is it. Payton is doing great, he loves his new computer Blues Clues game, and is trying to talk like crazy! Take care everyone and I will be back soon...
Hey Deb,Rob&Payton, Just wanted to send a note to say hey & let you know that although I do not post on the journal everyday I do check in to read & see how Lil'P is doing.Soo many ideas for the benefit. I'm not too certain where to start!!! Deb let me know what's a good day for you soon so the girls & I can swing on by & visit w/Payton (Dev's feeling 100% better & got the aok from the doc) also what day would be good to go out in Coral Springs & Boca to get some donations from the locals. Glad to see Payton is getting into new & different things. Sorry to hear the drive in didn't work out he's not used to seeing the movies sooo big I'm sure!!! Give me a holler when you can & lets set up a date & time to get some stuff together!! Luv u, Shan xox
HELLO FREEMAN FAMILY!!! :-) I HAVE NOT WRITTEN IN A LONG TIME, SO I WANTED TO SEND YOU A QUICK EMAIL!! PLEASE KNOW THAT EVEN WHEN I DO NOT WRITE, I AM ALWAYS THINKING ABOUT YOU GUYS. WELL, EVERYONE BUT ROB. HA HA JUST JOKING!!! LOVE YOU LOTS! XOXOXO MARNI P.S, DEB, MRS. CLEO IS ON THE PHONE FOR YOU.....
Boy, am I tired tonight...Work was crazy....Payton is doing great, he fell asleep too soon for me though, I barely got to see him today...He woke up late and went to bed early (early for him anyway)....I have been crazy busy, but things are moving along.....It looks like the invites will go out about 6 weeks before the event....We are still working on donations....I still need a couple volunteers at the event....Just like 2 or 3 would be a big help to us....(arrive 2 hours early, help with registration, monitoring auction tables, etc..) We will definitely feed you and it will be fun.....Hi Shan and Marni, you know I love you guys, I'd have a tough time functioning if I couldn't chat with my friends....Shan, whenever you want to get together, I'm all yours...I am thrilled to report that we have a nurse tonight, and I am totally exhausted, so I think I will GO TO SLEEP!!!!!!!!!!!!!!! Goodnight...
We have a ridiculously crazy weekend, so we are trying to get everyone to bed early tonight, so I am writing early, to say hi, let everyone know that Payton is good, and he will be starting Occupational Therapy on Tuesday, in addition to his speech therapy and Physical therapy....We are also going to start having a teacher here once a week....We are excited about that! We would like to wish Michael Murphy a HAPPY BIRTHDAY!! With many more to come, even though I know you are only asking for 50 total!!!!!!!!!!!!!!!!!!!! HEE HEE Have a good one Michael, and be careful!! I am definitely such a mom now....Also, HAPPY BIRTHDAY to little Colin, who just turned one! He has sma and has his own website at oursmaangels.com if you want to say happy birthday (Colin O'neil)!! He also has a big brother with sma named Casey, who also has his own website too! Well, Take care everyone! Deb
Just reading over your story and to hear it from you when we speak does not begin to describe the strength that Payton has, it is inspiring...we love you guys and keep up your fight, the children, (and payton) are worth it. love Gary and family
Hello! Just checking in and seeing how you all are doing. Starting OT huh...let me know how it goes because we have considered having that for Lily but we also feel it may overwhelm her with to many people coming in (she has PT and Speech too). We send you all hugs and kisses!!!
Miss Deb,Rob,and super trooper, just checking in good to hear everything is going good. getting jacked about the event, still working on those tattoo parlors,waiting for some call backs.My mom is asking her boss for another donation. and well see what else we can get. definity looking forward to the car wash,hostesses,water,suds. what more could i want? o yeah and raising $ of course. well time to get ready for work. ill talk to you guys later. Michael Murphy
HELLO FRIENDS! Well, tonight was very exciting, we brought Payton to SUPER TARGET!! This was so great for him, he was wide-eyed the whole time, and he got to pick out his own toy!! He picks by eye-gaze, he will stare at the one he wants. It was funny because he didn't just want the green lego box, he wanted a specific one! So, when we got it right, he was very happy!! We had alot of fun, and now he is content and watching Toy Story.....All is good, hope you are all doing well! Jen B, you are the best, thankyou for coming over tomorrow and helping me with these posters! I know they will look great, see you tomorrow! Love to everyone!
Debbie, thanks for helping us out today! We got everything rolling for the Tiger 2000! It is so exciting and fun to be getting Lily something that will get her out and about. We did get the bigger size and the vent tray etc. I hope we get it quickly! How exciting to take Payton to Super Target! We are going to take Lily out to some shopping places this summer when cold season is over with. Well, better get to bed....Hugs to you all!!
Hey guys, I just wanted to let you know that I am trying to find out if Office Depot would like to contribute to the Benefit or SMA. I hope they do! I am trying my best. Ryan is also going to see what he can do too. We want to help out as much as we can to find a cure for SMA! So if you guys need any help with ANYTHING, please feel free to ask! We love you! The Withey's...
Hi! No Nurse tonight, so I must be short...Amy, it is my pleasure to help you with anything and if you ever need me, I will be here! Give Lily a big hug for us! Jamie, it is so good tohear from you! How is married life so far?? :0) Well, any help we can get is very much appreciated. We are selling pins, and the invitations should be ready by the 15th, so if you have any addresses for me, just email them over. A whole table is $700 ($50 less)so if you want one for your whole family let me know. We could advertise your dads' business as the centerpiece. Also, if you are talking to Office Depot you should take the donation letter. Have Ryan go by the shop or come by if you guys have time and pick a few up. They came out really good! See you soon!....I am still looking for pics of our beautiful sma children, so if you haven't sent me one yet, the address is P.O. Box 667498 Pompano Beach, Fl. 33066-7498. Thank you SO much. I am adding them to my already existing beautiful posters from last year! .....Payton is doing great..His eval with OT went great, she will be visiting us twice a week. She seems really nice and Payton seemed to like her, so we hope that goes well. We are really trying to communicate better with Payton. He has ALOT he is trying SO HARD to tell us and we just don't know what it is! Take care... Also, I wouldlike to say HAPPY EARLY BIRTHDAY to Amy Ratkowski! Hope it is a good one! 32, right??? UUGH!!! AND goodnight!
Hello Payton, Debbie & Rob, What a courageous baby boy you are having. I also have a son. His name is Anthony and he is now almost 5 months old. Anthony has SMA Type I. Anthony is having difficulty feeding and his breating is getting faster. Last week, we learned from our pediatrician (in Hamilton, ON. Canada) that Anthony is too weak to receive the g-tube. I am so glad that everything seems to be very good with Payton. I can see that he's enjoying every minutes of his life with wonderful parents like you. I wish you all the strenght... Pascale Rossi, mother of 5 months old Anthony Janssen born November 25, 2001.
Hi! Debbie I just wanted to come and see ur son, hes so beautiful. I'm here for u if u you need anything. LOVE TALIA
Hey Guys, Payton i am glad your tummy is better! Thank you for letting me take your picture yesterday.:) I sold 6 pins today and hopefully will sell the rest on saturday. I will talk to you later Love always jen xoxoxo
Good morning, Payton! I'm at work and I was just thinking about you so I want to say hi and have a good day and I will see you this afternoon. I can't wait, you are the best part of my day, you know. We will have some new pictures up very soon. Love you so much xoxo, grandma
Hello loved ones! Well, things seem to be moving right along with the event, we have been selling pins (sma awareness pins) at Outback and out and about and have sold quite a few so far!! They are $10 so if you are interested, just email Jen B. at xxgiggles4xx@aol.com and she would be happy to send you one.:0) She is our "Pin girl" this year and is doing a FABULOUS job! Something really touched me last night...I was at work, and people were buying pins and asking about Payton (we had just put up his poster with info, etc.. about the event) and one of the busboys, J.P. offered me his tipshare for the entire evening. I said "oh, no, the pins are only $10-I can't take your whole tip share." But he said, no, he wants the whole thing to go to Payton [after reading the poster]. Well, I was brought to tears over this. Sometimes, people are kinder than you expect. This kid can't be more than 17 years old, and in this single moment became one of the least selfish people I have ever met...ANd he barely knows me...And has never met Payton...Wow, huh? People are definitely more good than bad. I have been lucky to see so much good from so many people...And so is Payton....Thankyou everybody--We WILL find a cure for this disgusting disease...
Hello Freeman's! Glad to hear all is well. Thanks Mom for bringing those letters! I have a lot of ideas but if you have any you want to share let me know. School is almost over for the semester so I will have more time to work on things that need to get done for the benefit. I know it will be a huge success and will help to raise more money for research! I can't wait to come over to help make some more posters to take to other Outbacks! I think this is a great idea to make everyone aware of what SMA is. Looking forward to Payton's Pals starting up soon too! I look forward to seeing you all this week! Take care and give Payton smooches for me! Love ya, Jennifer
Well, as usual, another crazy weekend. I was OFF of work today, for the first time in a long time. It was so nice to spend a weekend day with my husband, my mom, and most of ALL, My PRECIOUS PAYTON. :0) My mother and I went down to Sullo Salon this morning, to support Cindy Sage (my hairdresser and good friend--she started Outback on the same day as me, in 1992! But she has long since been doing the hair thing and has quite a clientele over at Sullo), in her Avon 3Day Walk to support breast cancer research. She will be walking the 60 MILE HIKE from FAU to Miami. Each walker must raise $1900 on their own towards the event before they are eligible to walk. Sullo had a "cut-a-thon" today to support Cindy, and we went to show ours. It was quite fun, they had good music, BBQ, chips and dips, cookies, candy, etc.. and they were all wearing the sullo-3DAY shirts that Rob made (they came out great). We both got our hair "trimmed" and went on our way....Then it was grab a quick bite and get to Physical Therapy. This is the LEAST fun thing in the WORLD for Payton. And that is putting it mildly. He has grown to really hate PT, but it is REALLY good for him. It will prevent him from getting scoliosis as bad (scoliosis is really inevitable--but we want to keep it from getting BAD), it keeps him from getting contractures of the joints too fast, keeps him more mobile in the fingers ( which is his only movement and we'd like to keep that going). It also has helped him get to the point where he can hold his legs up without support and squeeze his legs together just slightly! Exciting stuff, huh?? PT does alot more than that, but those are the most important things. Well, either way, he gets very happy when we leave and get into the car.....My mom and I straightened up (moms are great, aren't they??) and THEN, with baby watching, attempted the Advanced-1 TAEBO workout. WOW...What a challenge. We were seriously laughing when he said, "ok, now that we're warmed up, let's go!" We thought we were 1/2 way through the workout already!!!!!! Well, it kicked our butts, but it was AWESOME!!! And I think we may try to make this a regular 2-3 time a week thing. I will never give up running, unless my legs make that decision for me, but we really enjoyed the toning workout....Payton was making faces the whole time, like, "What are you two old folks trying to do???" But, we did it. :0) Well, then we had a wonderful visit with our new friends, Eileen, Kent and Diomme. They have a type 2 sma baby (grandson & nephew) in the family (that lives in CA) and they are helping us with the sma benefit! We are very excited to be working with them, and they are SUPER people. It is really nice to meet people like them...It is a shame that it is under such horrible circumstances, but nice to meet nonetheless. Zeke is the little boy with sma, and he is just one month older than Payton. I don't believe he has a website yet, but I will let you know when they do, so you can check it out. He is a BEAUTIFUL baby.....Well, I entered about a zillion addresses over the weekend for the benefit into the computer, and I am almost done, so, if you have any addresses that I should have, please email them to me right away!!!!!!!!!!!!! We will be selling pins up to the day of the event, so if you want one please email Jen Berman at xxgiggles4xx@aol.com She is selling them until the day of the benefit! Also, our car wash is this weekend...Just in case you happen to be in the area, we will be washing cars at the gas station on the corner of Atlantic and COral Sps. Drive on Sat morning from about 8am-1pm. Thankyou so much to all my angel volunteers that will be washing cars that day, you guys are aaaaawesome!!!.......Invitations should be ready within the next couple of days...I will let you know when they go out....We have a nurse tonight, for 8 hours, but, at least it's for 8 hours. I have to be one of those glass 1/2 full people right now:0)Take care everyone--and cross your fingers--and pray that we get approved for medicaid, I should find out about that this week too. Love to you all......Goodnight & Payton sends everyone a big hug and kissxoxoxoxo
Well, as usual, another crazy weekend. I was OFF of work today, for the first time in a long time. It was so nice to spend a weekend day with my husband, my mom, and most of ALL, My PRECIOUS PAYTON. :0) My mother and I went down to Sullo Salon this morning, to support Cindy Sage (my hairdresser and good friend--she started Outback on the same day as me, in 1992! But she has long since been doing the hair thing and has quite a clientele over at Sullo), in her Avon 3Day Walk to support breast cancer research. She will be walking the 60 MILE HIKE from FAU to Miami. Each walker must raise $1900 on their own towards the event before they are eligible to walk. Sullo had a "cut-a-thon" today to support Cindy, and we went to show ours. It was quite fun, they had good music, BBQ, chips and dips, cookies, candy, etc.. and they were all wearing the sullo-3DAY shirts that Rob made (they came out great). We both got our hair "trimmed" and went on our way....Then it was grab a quick bite and get to Physical Therapy. This is the LEAST fun thing in the WORLD for Payton. And that is putting it mildly. He has grown to really hate PT, but it is REALLY good for him. It will prevent him from getting scoliosis as bad (scoliosis is really inevitable--but we want to keep it from getting BAD), it keeps him from getting contractures of the joints too fast, keeps him more mobile in the fingers ( which is his only movement and we'd like to keep that going). It also has helped him get to the point where he can hold his legs up without support and squeeze his legs together just slightly! Exciting stuff, huh?? PT does alot more than that, but those are the most important things. Well, either way, he gets very happy when we leave and get into the car.....My mom and I straightened up (moms are great, aren't they??) and THEN, with baby watching, attempted the Advanced-1 TAEBO workout. WOW...What a challenge. We were seriously laughing when he said, "ok, now that we're warmed up, let's go!" We thought we were 1/2 way through the workout already!!!!!! Well, it kicked our butts, but it was AWESOME!!! And I think we may try to make this a regular 2-3 time a week thing. I will never give up running, unless my legs make that decision for me, but we really enjoyed the toning workout....Payton was making faces the whole time, like, "What are you two old folks trying to do???" But, we did it. :0) Well, then we had a wonderful visit with our new friends, Eileen, Kent and Diomme. They have a type 2 sma baby (grandson & nephew) in the family (that lives in CA) and they are helping us with the sma benefit! We are very excited to be working with them, and they are SUPER people. It is really nice to meet people like them...It is a shame that it is under such horrible circumstances, but nice to meet nonetheless. Zeke is the little boy with sma, and he is just one month older than Payton. I don't believe he has a website yet, but I will let you know when they do, so you can check it out. He is a BEAUTIFUL baby.....Well, I entered about a zillion addresses over the weekend for the benefit into the computer, and I am almost done, so, if you have any addresses that I should have, please email them to me right away!!!!!!!!!!!!! We will be selling pins up to the day of the event, so if you want one please email Jen Berman at xxgiggles4xx@aol.com She is selling them until the day of the benefit! Also, our car wash is this weekend...Just in case you happen to be in the area, we will be washing cars at the gas station on the corner of Atlantic and COral Sps. Drive on Sat morning from about 8am-1pm. Thankyou so much to all my angel volunteers that will be washing cars that day, you guys are aaaaawesome!!!.......Invitations should be ready within the next couple of days...I will let you know when they go out....We have a nurse tonight, for 8 hours, but, at least it's for 8 hours. I have to be one of those glass 1/2 full people right now:0)Take care everyone--and cross your fingers--and pray that we get approved for medicaid, I should find out about that this week too. Love to you all......Goodnight & Payton sends everyone a big hug and kissxoxoxoxo
Well, as usual, another crazy weekend. I was OFF of work today, for the first time in a long time. It was so nice to spend a weekend day with my husband, my mom, and most of ALL, My PRECIOUS PAYTON. :0) My mother and I went down to Sullo Salon this morning, to support Cindy Sage (my hairdresser and good friend--she started Outback on the same day as me, in 1992! But she has long since been doing the hair thing and has quite a clientele over at Sullo), in her Avon 3Day Walk to support breast cancer research. She will be walking the 60 MILE HIKE from FAU to Miami. Each walker must raise $1900 on their own towards the event before they are eligible to walk. Sullo had a "cut-a-thon" today to support Cindy, and we went to show ours. It was quite fun, they had good music, BBQ, chips and dips, cookies, candy, etc.. and they were all wearing the sullo-3DAY shirts that Rob made (they came out great). We both got our hair "trimmed" and went on our way....Then it was grab a quick bite and get to Physical Therapy. This is the LEAST fun thing in the WORLD for Payton. And that is putting it mildly. He has grown to really hate PT, but it is REALLY good for him. It will prevent him from getting scoliosis as bad (scoliosis is really inevitable--but we want to keep it from getting BAD), it keeps him from getting contractures of the joints too fast, keeps him more mobile in the fingers ( which is his only movement and we'd like to keep that going). It also has helped him get to the point where he can hold his legs up without support and squeeze his legs together just slightly! Exciting stuff, huh?? PT does alot more than that, but those are the most important things. Well, either way, he gets very happy when we leave and get into the car.....My mom and I straightened up (moms are great, aren't they??) and THEN, with baby watching, attempted the Advanced-1 TAEBO workout. WOW...What a challenge. We were seriously laughing when he said, "ok, now that we're warmed up, let's go!" We thought we were 1/2 way through the workout already!!!!!! Well, it kicked our butts, but it was AWESOME!!! And I think we may try to make this a regular 2-3 time a week thing. I will never give up running, unless my legs make that decision for me, but we really enjoyed the toning workout....Payton was making faces the whole time, like, "What are you two old folks trying to do???" But, we did it. :0) Well, then we had a wonderful visit with our new friends, Eileen, Kent and Diomme. They have a type 2 sma baby (grandson & nephew) in the family (that lives in CA) and they are helping us with the sma benefit! We are very excited to be working with them, and they are SUPER people. It is really nice to meet people like them...It is a shame that it is under such horrible circumstances, but nice to meet nonetheless. Zeke is the little boy with sma, and he is just one month older than Payton. I don't believe he has a website yet, but I will let you know when they do, so you can check it out. He is a BEAUTIFUL baby.....Well, I entered about a zillion addresses over the weekend for the benefit into the computer, and I am almost done, so, if you have any addresses that I should have, please email them to me right away!!!!!!!!!!!!! We will be selling pins up to the day of the event, so if you want one please email Jen Berman at xxgiggles4xx@aol.com She is selling them until the day of the benefit! Also, our car wash is this weekend...Just in case you happen to be in the area, we will be washing cars at the gas station on the corner of Atlantic and COral Sps. Drive on Sat morning from about 8am-1pm. Thankyou so much to all my angel volunteers that will be washing cars that day, you guys are aaaaawesome!!!.......Invitations should be ready within the next couple of days...I will let you know when they go out....We have a nurse tonight, for 8 hours, but, at least it's for 8 hours. I have to be one of those glass 1/2 full people right now:0)Take care everyone--and cross your fingers--and pray that we get approved for medicaid, I should find out about that this week too. Love to you all......Goodnight & Payton sends everyone a big hug and kissxoxoxoxo
Miss Deb,Rob,and Super Trooper, glad to hear everything is going otay,just wanted to let you guys know i will be stopping by 2 tattoo parlors tomorrow, rock a billy and funhouse. maybe theyll be willing to donate some skin art.And as far as the "Marine for a day" idea is going its being sent through chain of command but doesnt look promising.sorry. But on the other hand i have spoken to about 5 of my fellow Devil Dogs and they have all given a thumbs up if you need any security at your event, so just let me know. OHHHH and get this, last night Payton was in my dream, and we were wrestling, i swear to the almighty, it freaked me out but it made me that much more reassured that a cure isa comin'!but anywhoo i better get going to bed. just wanted to drop in quick. ill talk to yall later. Michael Murphy
It is late and I am beat up, but I wanted everyone to know that 200 invites went out today and there should be couple hundred more tomorrow! Wish us luck! Love from us The Freemans
hey freemans...it's jackie coming to you from tallahassee. i'm so excited to read about all the progress that's taking place back home with the BIG EVENT!!!! i can't wait!!!! everything sounds like it's coming together really well. i'm so proud of everyone. like i said i'll be home in time for some last minute details you need done ok. anyway, i'll be home for a week in two weeks after my FINALS!!! then will be back for 2 1/2 months the beginning of June=) i can't wait to see you guys, especially my PayJay!!! well i'm going to get back to my term paper. lots of hugs and kisses. thinking of you constantly!! LOVE YA XOXOXXO
HEYLO OUT THERE!!! SOrry for my neglect of the journal!! I have been SO busy (even for me) that by the end of the night, I am beyond exhausted. We had a nurse last night though, thank God, and I got some sleep! That is a beautiful thing!.........First off Hello Jackie!!! How are you doing??? We miss you and esp. Payton misses you! I told him you wrote and that he would see you soon!..........We have officially sent out about 300 invitations!!! If you should have gotten one and don't by Monday, please let me know right away!! ........We are getting TONS of stuff donated this year!! It is all very exciting, so be sure to come and SHOP!!!!!!!!!!My boss just informed me that she will be donating one of her labrador puppies that will be born soon!! I am very excited as we could not get a dog at all last year, and this year we will have TWO!!!!!!!!!!!!!..........Payton is very busy this week, with doc visits in West Palm (he is SUCH a trooper!) PHysical Therapy, SPeech Therapy, Occupational Therapy, and SOON he will start with a teacher!!............The nursing thing has become a HUGE problem with our ins. company cutting us back even more! I believe that they are trying to cut us off completely and I STILL haven't heard about medicaid, but I will be calling today and of course, being as nice as possible even though I want to "freak out!" .............I think that is it for now, but I will be back soon! Deb
I debbie/payton just want to say I. I hope we make lots of money at the car wash tomarrow Love you lots You are the best Jamie Joy
Hello friends and family. This journal entry is dedicated solely to Conner Riggs. Conner passed away very early this morning, due to respiratory complications related to sma. Conner was almost 3 years old and his mommy and daddy took very good care of him, just like Rob and I take care of Payton. But, even with their valiant efforts, sma stole the life of their child. ANOTHER sma victim. I cannot express to any of you the extreme pain and sorrow that we feel over this loss. This is very difficult for any sma parent to deal with,.....But, to make matters worse, Conner was the son of a good friend of ours' best friend. It may seem like a small world, and it really is. Maria (from Outback--many of you know her as the girl that ran the benefit last year) is best friends with a girl named Betsey,that lives in Georgia, and is the mother of Conner...She (Maria) was one of the first and only people to approach me already familiar about sma and this has been quite hard on her too....We have always kept up with Conner and how he is doing, and this is really just a bomb...He is a BEAUTIFUL little boy and you can see his pictures and read his website at www.oursmaangels.com/conner Please go to the website and offer condolences to Betsey and John and their families...They need it right now...............All I have done is think about Conner today and I will surely dream about him tonight. I know that it is an overused generic phrase, but the truth is, is that no matter where he is, he IS in a better place....Good bye Conner and know that we ALL love you, your whole, big, loving, sma family....And when the time comes, I want you to be the one to watch over Payton and make sure he is ok!? Ok??? OK. Love, Debbie, Robert and little P.
Well, I just got home from work...ANOTHER crazy weekend...it's really just crazy life at this point...We had the car wash on Saturday. We really did not get rolling until about 10am and finished the whole thing by 1pm. We raised $450!!!!!!!! Amazing, huh?? It was ALOT of fun too! We had about 15 or 16 people helping all together, and we were washing them quick, and it really was fun, and it was SO nice and sunny out, so we all got sun too!! Lots of people at work want to do it again, and some that didn't get to come, want to do it next time, so we think we may be doing car washes at least twice a year!!! We ALSO decided to donate ALL the money to FSMA in Memory of CONNER RIGGS. I really can't even talk about it, but we are happy to be able to at least donate this in his memory......His funeral was today...............................I would like to say THANK YOU to Jen Berman for ALL of her hard work in putting this car wash together (and for thinking of it!) and for ALL of her work with the pins (she has been responsible for the selling of the sma pins in our store) AND for ALL the work with the posters!!!!!!!!!!!!! You are one AMAZING CHICK! Your help has been so APPRECIATED by me and my family, esp. Payton! You are the best!!! I would also like to say a big thankyou to ALL of you that came out and helped us on Saturday! Jen B., Lindsay, Erica, Lauren, Kim B., Jen H., Cheryl, Ramona, Jen P., Eric, Kelly, Talia, Jamie Joy and of course Michael Murphy! AND thankyou to all your family members and friends that came to help and to everyone that helped in some way, whether we washed your car or you just donated!!!!!!!!! It was great fun and I will let you know when we do it again!.....Also, Thankyou Jen H., for helping me with all of the posters....We will be putting posters up in most of the Outbacks in So. FLa. telling people about the benefit, Payton and sma. We will be selling pins in those Outbacks til the week before the event....Thankyou SO MUCH to Lori Ball for making sure all of the managing partners get those posters!! I would like to say a HUGE thankyou to Maria, for getting all of those invitations mailed out & printed! We are REALLY looking forward to this years' benefit, REALLY exhausted, but really looking forward to it! Please email me if you did not get an invitation, and should have, or want one!!! Love to you all! Deb P.S. Payton is doing great by the way!! He had PT today, his LEAST Favorite thing to do....But, it is good for him. He has otherwise been playing with daddy and grandma, and mommy and watching movies and chillin' out....Good night. We have a NEW nurse tonight. Wish us luck.
I got on the website tonight really wanting to vent...about how terrible this disease is, etc.. and lots of other things that aggravate me about sma, etc.. but I think I will just say that we NEED TO FIND A CURE FOR THIS DISEASE! Have I mentioned this lately??? Payton WILL NOT survive very long without some sort of treatment!! He is not even as strong as the little boy who just passed away. Sometimes I look at him, and wonder just HOW he has hung on this long...How disgusting that a mother has to think that about her 22 month old baby. YEah, the same one that has NEVER eaten real food by mouth, never walked, sat up, crawled,can't smile or talk to me, hug me or play with a toy, etc.. Payton will never be able to even lift his own head up if we don't do something. This is more than just unfair, or a "shame," this is UNACCEPTABLE. Children and babies that are brought into this world should not have to deal with the kinds of problems that I have had to see these children suffer with...These are not things for us to IGNORE. These children are worth more time and money than is being given...You, our friends and family, are doing all you can, and we know it, but we need to get BIG! We need this to be something that EVERYONE gets involved with. THere are about 25,000 kids living with sma in this country....AND they are dying left and right, so when are we going to STOP THIS?? We should be doing something on a national level! Believe me, I will do a car wash every weekend if Ihave to, but can't we reach more people???Can't we get on TV?? Can't we LET PEOPLE KNOW WHAT THE HELL IS GOING ON HERE?????? Maybe it's just me and maybe I am just a crazy desperate mother, but I AM TRYING TO SAVE MY CHILD??? What would you do??????
Hello sma friends...I am getting Payton ready for Physical Therapy. He had no nurse last night, and was "restless" last night, so I am a little tired, but I believe we have a nurse tonight, Thank Goodness...We had a new nurse on Sunday, and I am happy to announce that she was very nice and did very well. She actually reminded me a little of my mother, so I think she will be good...We got a call from Social Security yesterday saying they needed MORE PAPERWORK...The worst of it, is that they need things that we have ALREADY SENT TO THEM, and they sent back. She says oh, "you can't bring it to me?" I said, "no. They have cut my nursing and we are prisoners in our own home." She didn't think it was funny. Anyway, I am sending her the info she wants and HOPEFULLY we will be able to take the NEXT step to get nursing care....Yes, the NEXT step, there is a whole other "thing" we must go through, and I, being of sound mind and body, cannot figure out exactly how it works...Sound like fun??? And I used to hate waiting in line at the DMV......Our friend, and our extended sma family member, Dionne, has written to the newspapers, channel 7, Rosie O'donnell, Deco Drive, etc...etc....She has some great connections, being in the movie business, and we are keeping our fingers crossed that we end up in the sun-sentinel or even better,on channel 7, talking about Payton, sma and the benefit...I am trying to figure out which outfit I will want him to wear on TV! :0) I have been keeping up with Betsey Riggs' website, and cannot express to you how bad I feel for her, I really have taken Conners' death very hard, and if I don't seem to be my cheery, optimistic, rock-hard strong (ok--I'm getting a little crazy here), self, than just please understand, that no matter how tough you are, there are definitely BAD DAYS. Thankyou to all of you that have called me recently to make sure that I haven't had a nervous breakdown or anything..:0)
Hi Debbie: I just want you to know that you're not alone--I took Connor's death pretty hard too. It led to a crying jag that night, and I haven't been quite right since. It's obvious why. But today, one of my fellow TAs (and we TAs are all very, very poor--I told you how little we make) gave me a check for $100 to give to FSMA, and I nearly lost it again, but this time with happiness. The fact that people like Payton and Connor can generate acts of complete selfless giving, can even bring young men in grad school to say, "I will eat ramen noodles for a week to get $100 closer to a cure," in the name of a child he hasn't met and probably never will meet, is a miracle, and Payton, for all his youth and his "limitations," has already achieved more by inspiring us to transcend our superficial, materialistic, daily lives than most of us could have hoped for in our entire lifetimes. I love you, Deb, Payton, Rob, and everyone. I can't wait to see you...SOON! :-) Amy
HELLO......Amy, you are so awesome, you the best sister and WE love you so much...We are really looking forward to everyone coming down!! So, get your butts down here!! Please tell your friend thankyou-it really touches my heart when people give to help find a cure for Payton...People really DO care, and they do NOT want to see this baby lying on the couch anymore...Thank goodness,cuz there are way too many babies doing it.......Things are moving along with the benefit, we are covering the particulars, tables, linens, food, drink, and trying to get stuff DONATED, so if you know anyone that might donate, be sure to ask, or let us know, and we will....We want to have LOTS of stuff to bid on, just like last year!!!! Payton is good, he is getting ready for bed, and we have a NURSE tonight--thank goodness--didn't have one last night...So, hooray for me, I may actually get straight sleep tonight--I better be quiet, or I will jinx myself! :0) Have a great night everyone!
Hi Gang~Another crazy night at Outback...missed you Deb the place seems to run so much tighter when you're there.Thank goodness I'll see you tomorrow!!! Lots of candy bars & muffins for sale behind the bar $1 each just so you know!!! I've got lots of e-mails out to folks about donations & will let you know when I get replys.Wondering what kind of puppy you'd like for the benefit...we have a choc/black lab pup already...a golden?a pug?a doxie??Let me know if you have any ideas so I can let the Puppy Connection know. Hope you had a nurse tonight & was able to get some rest. Give Lil'P a smooch for me. Will see ya tomorrow.Luv ya,Shan xox
Well, just got off work--busy night at Outback--thank goodness!! Hey Miss Shan! I am looking forward to our day "out," collecting stuff for the auction!! Jen H., let me know if you can join us!! If anyone wants to come, you are MORE than welcome!! We can probably get alot done if we all work together! Payton is doing well, he is watching "Toy Story," surprise, surprise....But he is good, so we are happy...PT this weekend, work, work, work, and that is it....If anyone needs donation letters, invites, etc...or has ANY questions, let me know!!!!!!!!! LOVE to you ALL and P.S. extra special thankyou to Mike Froitzheim for offering to do his project on Payton and SMA, I am sure it will be AWESOME!! And I am really looking forward to working with you on the video!!!!!!!!!!!!!!!!!!!!!!!!!!!!LOVE DEB
Heylo out there!! ALOT going lately--just trying to keep up, really...I have been trying to get together all the stuff for medicaid, that I already gave them, that they need AGAIN, before they can HOPEFULLY approve us, before we can get nursing, etc.....So, that is the big project right now..Of course, trying to do benefit stuff every single day in the meanwhile. Shannon and I will be going out tomorrow looking for nice people to donate to the auction! WISH US LUCK!! It is rare to find ANY time at all to do this, so we need lots of fingers crossed for us, in the hopes that we will be successful on this very rare day.....:0) One of the Outbacks has already sold ALL the pins we gave him to sell to his "Outbackers!" How fabulous is that?? Outbackers are GREAT PEOPLE, that has been proven time and time and time again to us and others!!!!!!!!!!!!!!! Thank goodness Bruce hired me back in 1992! Huh? Well, I am thrilled and we have already raised a few hundred dollars for the benefit through pin sales!! I still think about Conner and Betsey everyday, as I am sure some of you do...It is difficult for me to even IMAGINE what her day is like without that little boy, but I believe that Betsey made a real difference in the world of sma, just by taking such good care of Conner.....If you haven't been to her website, it is oursmaangels.com/Conner ANd make sure you say hi, etc.....She is a STRONG and great lady...I am trying to clean house and I need to feed my lovely child, so I must go, but THANKYOU everyone for reading, caring, and giving...all for our little Payton:0)
I am very sorry to say that Shannons' bulldog "Dexter" died early today...Most likely from a seizure...He had been having more than normal in the past couple of days (he is on medication for them) and Shannon was very worried about him.....I am sooo Sorry for her and for Dave and Deven and Kendal...Dexter was part of their family, as most dogs are....We obviously had to reschedule our "auction item" day, so I don't have much to report, other than Payton is doing well, and we are waiting for the cure for spinal muscular atrophy.....Did you know that?? Just wanted to update you...Talk soon...Deb
hey payjay, i just wanted to come on and say thank you so much for inviting me over today. i had the best time visiting you and spending some quality time with you. i'm sorry i missed your mommy but i will see her tomorrow. it worked out well though because i got to hang out with grandma. i can't believe how big you got. you're like a little man. i loved watching that video with you too, that "i lost my hairbrush" song has been in my head ever since i left=) jim was happy to come by and see you too. he got the exact directions to your house so i'm sure he'll be stopping by solo to see you since i'll be back up in talahassee. oh and i already got a plane ticket to come back and see you for your event!!! ok well i'm going to go, thanks again for our date, and tell mommy i want a picture=) love you, miss you SOOOOO MUCH xoxoox
hey PayJay, well i just wanted to say thank you so much for inviting me over today. I had such a good time with you on our DVD date. I've have that "hairbrush" song in my head ever since i left this afternoon =). i'm sorry i missed your mommy but i'll see her tomorrow at outback. (i hope you got all your errands done=) it actually worked out well because i got to hang out with grandma and grandpa for a bit. jim had fun seeing you today too. he got the exact directions so i'm sure he'll be stopping in to see you more often. ok well i know you had a long day with PT and all so i'm going to jet. i hope you have a good night and i'll being seeing you soon. oh and i already got a plane ticket so i can come down for your event this JUNE 8th!!!!! ok lots of love, hugs, and kisses. xoxoxox JACKIE P.S. tell mommy i want a copy of the picture we took today. P.P.S. say hi to daddy, and the dogs for me too
hey PayJay... i just wanted to come on and say thank you soo much for our date today. i had such a good time spending time with you and watching our movie. i've had that "where's my hairbrush" songin my head ever since i left your house!!!! i'm sorry i missed your mommy but it worked out well because i got to hang out with grandma and grandpa!!! jim had a good time seeing you too. he got the exact directions to your house and will probably be coming out to see you when he's out your way. i can't wait to come home for your event, i got a plane ticket to come home for that weekend. well i know you had a long day with PT and all so i'll let you get going. tell mommy to try and make me a copy of the picture we took today too ok? xoxoxoxo love you and miss you bunches JACKIE p.s. tell daddy and the dogs i said hi too.
hey PayJay... i just wanted to come on and say thank you soo much for our date today. i had such a good time spending time with you and watching our movie. i've had that "where's my hairbrush" songin my head ever since i left your house!!!! i'm sorry i missed your mommy but it worked out well because i got to hang out with grandma and grandpa!!! jim had a good time seeing you too. he got the exact directions to your house and will probably be coming out to see you when he's out your way. i can't wait to come home for your event, i got a plane ticket to come home for that weekend. well i know you had a long day with PT and all so i'll let you get going. tell mommy to try and make me a copy of the picture we took today too ok? xoxoxoxo love you and miss you bunches JACKIE p.s. tell daddy and the dogs i said hi too.
hey PayJay... i just wanted to come on and say thank you soo much for our date today. i had such a good time spending time with you and watching our movie. i've had that "where's my hairbrush" songin my head ever since i left your house!!!! i'm sorry i missed your mommy but it worked out well because i got to hang out with grandma and grandpa!!! jim had a good time seeing you too. he got the exact directions to your house and will probably be coming out to see you when he's out your way. i can't wait to come home for your event, i got a plane ticket to come home for that weekend. well i know you had a long day with PT and all so i'll let you get going. tell mommy to try and make me a copy of the picture we took today too ok? xoxoxoxo love you and miss you bunches JACKIE p.s. tell daddy and the dogs i said hi too.
hey PayJay... i just wanted to come on and say thank you soo much for our date today. i had such a good time spending time with you and watching our movie. i've had that "where's my hairbrush" songin my head ever since i left your house!!!! i'm sorry i missed your mommy but it worked out well because i got to hang out with grandma and grandpa!!! jim had a good time seeing you too. he got the exact directions to your house and will probably be coming out to see you when he's out your way. i can't wait to come home for your event, i got a plane ticket to come home for that weekend. well i know you had a long day with PT and all so i'll let you get going. tell mommy to try and make me a copy of the picture we took today too ok? xoxoxoxo love you and miss you bunches JACKIE p.s. tell daddy and the dogs i said hi too.
Hello everyone!! Jackie, you can come by ANYTIME, esp. when you bring your cutie JIM with you!! We love you guys!! I heard my dad was giving one of his history of Fla. lessons to Jim--hope it wasn't too much--he gets a little over board, esp. with that Cypress Creek Canal thing! :0) Love you, dad!! Payton is doing great--he had Physical Therapy today, and while he absolutely HATES it, and turns PURPLE from the second he realizes where we are, he is SUCH A TROOPER and deals with it like a BIG BOY, he is definitely our little angel....Dionne, our movie girl, (and the aunt of little ZEKE in California--same age as Payton-suffering from type 2 sma) has got quite a list of donated items for the auction already, and is working hard on getting tons more!! BIG BIG THANKYOU to her for all her hard work, and esp. for that STAR WARS poster, that Robert is already saving for!!! Just a few items that will be there: an ELEVEN movie set of Oliver Stone movies, Spider Man Movie package of goodies, Tickets for 2 for a year to screenings of new movies, etc...etc...I don't want to tell ALL, but it is quite a list of collectibles!!!!!! Payton had a horrible night last night, and of course, no nurse, so we both we're tired today, but, we have a nurse tonight, thank goodness, so hopefully, we will ALL sleep, including daddy.....G-Ma Roz, we are hoping you are recovering well after your foot surgery!!! You must be better in time for your flight!!We love you and Payton sends you and Bill big hugs and kisses!! I have been unable to get out and pound the pavement locally, so if you know ANYONE that would like to give or donate an item, etc... please let me know!! We all heard on Zeta today how they were asking for donated items to be auctioned off for the family of the girl in Miami that was just murdered...Rob offered to donate t-shirts and printing...They called back and said, "Sorry--we got like 300 things called in that we just can't take, but thanks for offering--We got an autographed guitar that we are just going to auction off all day tomorrow" We are killing ourselves to get things donated, and zeta is turning people away left and right....The irony, huh?? Well, like Dionne says, every year will get better and better and bigger and bigger, and once people are familiar with the event , they will be much more likely to get involved, and maybe one day we will have "TOO MANY" things donated! Ha! Doubt it, but that would be great, wouldn't it? Well, still lots of work to do on the benefit, trying to find a decent price for tables and linens, etc.. Not an easy task, but we are working on it...Oh, and if you would like any information about anything, just email me! Thanks everybody and have a great night!!!!!!!!!!!!!!!!!!!
Hello Freeman Family~ Deb can't thank you enough for the care and concern and your journal entry about my Dexter. Loved that lil' piggy and he is sadly and greatly missed here in our home. But as we spoke about the sun still shines and the flowers still bloom and life continues oddly enough. His passing made me realize that you just never know what life will throw your way and it's important to do the things you want to do not necessarily the things you need to do. The house will never be perfect, they'll always be dirty laundry and the bills will always need to be paid....it's okay to leave all that crap for tomorrow,lock the front door and go out and have a good time. Spend time w/your family and your friends and to do what's important to you....not necessarily what society says is important. If you've always wanted to experience something, if you've had a dream GO DO IT NOW don't wait for tomorrow 'cuz you never know what tomorrow's going to bring. Anyway enough about me....heading up to Boca today after Kendals' school olympics to hit some of the local restaurants for gift certificates. And any other place I might stop into on my way up there. Don't know my schedule for next week yet but lets try and head out again and get as much stuff for auction as possible. We do have the diamond doves and the pair of parakeets. Need to get ahold of my friend in Davie about the cockatiel babies. Also Dave got some sports memorabilia from Hurricane Racing yesterday.What about flowers for the tables?? Do we have those donated yet? Linens,tables,chairs??? Let me know please and I'll see if I can make some phone calls to my old catering buddies. Please give lil' P a huge hug for me....I look at his picture every day and think this is the year to find the cure. That's one thing damnit that definately won't pass us by. Have a good one Deb and give me a holler today. Love you dearly, Shan xoxox
What a truly incredible site and a superb way of keeping everyone aware of this disease. Each picture is a treasure and shows the love & pride your whole family has. Best of luck / see everyone June 8th
hey Miss Deb,Rob and Super Trooper, just wantd to drop in and say hello, glad to hear everything is going ok. and if you ever need another tag along to get stuff donated lemme know, if im not at base during the day i am pretty much a couch potato so gimme a ring.oh and its good to see they are teaching good computer skills up at FSU Jack(Miss repetitive e-mail 2002). but anyways the main reason for this entry is to give you my new adress so i can get an invitation, it is......12625 nw 56th st. c.s. fl. 33076,a nd you can reach me at (954) 261-4044 if ya need anything. well time to go to bed im all doped up on nyquil so ill see you guys when i am done hybernating. talk to yall later. Michael Murphy
Hey guys! I just wanted to let you know, I have email the radio station 103.1 The Buzz to see if they would like to donate anything to the benefit, I hope I hear a response back soon. I don't know how anyone can turn this down. All they have to do is go look at payton's pictures or read his story or just read some of the entries from all the people who's lives have been touched by Payton. I am also supposed to get some donations from my work today. If not today, then monday. So we will keep in touch! Love you, The Withey's!!
Hey Guys! I went to Dinsey yesterday and Buzz Lightyear told me to say hi to his favorite kid, Payoton. I hope you like your new outfit :). I will see you on tuesday! Deb i will see you tomorrow i picked up a shift because i still do not know how to say no. Talk to you all later Love always- Jen xoxo
Hey everybody!!! WOrked tonight--a little tired, have to work the next two days too...Payton is doing great, he had PT today and tomorrow too--he is ALWAYS such a trooper! I believe that we have a "Payton" poster in every Outback in south Fla. now, except for the Keys...JUst TOO far!! So, we are hoping that every time you eat dinner in an Outback, your server will be wearing an sma pin!! If they aren't, you should ask where it is?!?!?!?! I want to send a HUGE THANKYOU to all of you that are helping me with the benefit this year!!!! Bill and Maria have been so generous with their time and efforts to help Payton, and have really opened the doors for us!! This thing will hopefully continue to grow and grow and grow, and without ALL of your help, individually, it would not happen...We have ALREADY been a huge SUCCESS!! BUT, we need to stick together and all keep working on this to actually MAKE IT HAPPEN!! EVERY single bit of help, talking to your friends, spreading awareness, getting donations, "hook-ups" for donations, etc.., reading the journal, keeping up with FSMA, with Payton, with other children affected by this disease...EVERY BIT helps to spread the word, and brings us CLOSER AND CLOSER to the day that Payton can go out and run and play and EAT and do all the things that he was meant to do!!!!!!! THANKYOU EVERYONE!! We are very excited about the benefit!!P.S. I am sorry to announce that my bosses dog had only ONE puppy (they were expecting 10-12!!) so we will not have the chocolate lab, unless we can find another one!! BUT, we still have the dog that Shannon got donated from Puppy Connection, so at least we will have one puppy!!! I will be out soliciting donations at a TON of restaurants Mon,and Tues, so if you are interested in coming or helping or need paperwork, etc.. call me or email me! You too, Michael Murphy!! OH, and we LOVE you JACKIE, even though FSU has not really been kept up to standard with computer skills!!!!!!!!!!!:0) And Shan, you are the absolute BEST, thankyou for everything you have done with the candy sales and just plain being you, we love you and we still love DEX! Jen Berman, thankyou for Paytons' awesome Disney outfit!! Only you would be at grad night and be thinking of little Payton, you are such a doll! Dionne, thankyou so much for your relentless energy and awesome donation list!! Goodnight and have a great weekend everyone!!
Hello out there! Just got home from a ridiculous night at work--amazing to me the problems people can have while out to dinner...Jamie THANKYOU So much for helping us out and getting the word out there!! Hopefully Office Depot will be generous!!! Let me know if you need any paper work, or have Ryan get it from Rob, you will probably need it if they decide tohelp out!! I am going out Tues, this week, and hopefully on Fri...Jen H., if you are reading this, I have to key tomorrow, so I won't be able to go with you, but if you want to go with Shannon, please call her, because she is OFF tomorrow!! That would be AWESOME!! Thanks guys--talk soon..Deb
Hi Payton, Deb and Rob It is so frustrating to be here, in France, and to see you guys working so hard to get donations...I'd love to be there and help you with all my heart...but you know, the distance doesn't help at all. Fortunately, Matt and I are moving to the USA very soon (the 28th of june, so in less than 2 months hooray!) So Deb, I will be VERY happy to HELP, Matt too of course. Oh, by the way, will you be happy if I manage to get money from people here, convert it in $, and give it to you when we arrive in 2 months, even if the benefit dinner is over? It won't be thousands of $ but people I know are usually students, like I am, so they don't have a lot of money but they are willing to help you. I don't promise anything but I will try. Tell Payton that we love him and that Frenchies think about him and you everyday. Love and see you soon!
Hello Freeman Family, I keep meaning to send my invitation back, Deb, but I keep forgetting to do so.I promise to send it back asap... You know I would never miss the benefit. I will definitely be there. :-) I miss you & Love you. Kisses to Sweet Payton LYB, Marn
HELLO LOVES...It is so great to hear from you Sophie!! How are things in France??? I am thrilled to hear that you and Matt are moving back to the USA!! I will definitely take you up on the help!! The more the merrier, and honestly, the more help we have, the more that we will get done, and the closer we will be, to a CURE! What a bummer that you will be just a couple weeks after the benefit!! Well, we are having someone tape it this year, so I will definitely have you guys over for a screening!!!! If you bring donations with you, I can just add it to the benefit, because it takes them a couple of weeks to get it together, to FSMA, etc....And THANKYOU for ALL THE HELP!! EVERY DOLLAR COUNTS!!!!! Marni, you are the best, please call me soon, when you have time, I need to talk to you about your "connections!" Also, hope things are going smoothly in Palm Beach!!:0) I will be out tomorrow soliciting donations with Jen B., so keep your fingers crossed (for real this time) and pray that we will be VERY successful!! I am hoping it goes well, because it is near impossible to get everyone together and get our schedules in sync!!!! Monday also looks like it is coming together as a good day, so if you want to come (Michael Murphy :) ....Please do!! Work was pretty crazy for a Monday, but I should've expected that...Payton is doing great and is getting ready to go to bed, so I must go..But, at least we have a nurse! YEAH!!! P.S. A TON of you are trying to get things donated lately, and I want to THANK EVERYBODY for helping and for asking!!! SOmetimes, it is hard to ask, but I appreciate so much all of you asking and really putting the pressure on (when needed!) to get people tohelp out...This is no doubt, A WORTHY CAUSE....Talk soon...Love Deb
HELLO DEB!!!!!!!!!!! Of course, we want to see the tape of the Benefit! We are doing fine here but we can't wait to see you guys in 2 months! We are getting ready to leave (as you can imagine, there's a lot to do...), but I found the time to call a lot of people to get donations and everyone said "of course we want to help! How much do you want?" So you see, we WILL come over with donations! I was so happy yesterday to see that people felt concerned with this cause! We reached 200$ in one afternoon, so I hope it will go on! I just called my friends and family and my teacher sent an E-mail to me today to ask if I wanted to grade final papers and get money...I said WHAT? of course I want money, for the benefit! So I will fix it... Yesterday, people asked me "why do you do that? It's not your business! Let them get away with it!"; I simply answered "and if it were YOUR child? Wouldn't you be happy to see people help you? Of course you would...so don't tell bullshit, you selfish people, and give me money!". You know, it worked! But most people gave money because their hearts were touched and really want to be of some help. Okay, I have some other phone calls to do! See you all very soon! Love
Hello Everyone! Today was amazing!! Debbie and i got alot of donations!! But i will let her tell everyone the details since she is soo good at that :) It is great to see so many people wanting to help our little man. He is worth all the time and effort. The more time that we all give the closer we will be to finding a treatment for this! Love to you all-jen xoxox
Boy, is Jen right on the money!! We were VERY SUCCESSFUL today!!!!! Dinner for a WEEK will definitely be on the auction again~~It looks more like dinner for TWO WEEKS!! I know I am SUCH A MOM, but I explain every little move to Jen as we are "working it," spreading the word, and trying to get donations!!! I believe that she has learned how to be a PRO after today!! It is a little easier for me, because this is MY CHILD, and NO ONE knows as much about SMA as I do, (well maybe a couple people!!) but, I am very confident...It is hard for me in the sense that it is difficult to pour my heart about my own son, that is TERMINALLY ILL, over and over, but I do it, and I do it again...because it is ALL FOR PAYTON and I will do ANYTHING and EVERYTHING I can to save my baby. THANKYOU SO MUCH JEN!! We make a GREAT TEAM!! Payton is AMAZING for alot of reasons, but just the fact that he is STILL alive and doing well, is the most amazing fact of all..And this is a hard fact for even me to face, let alone his grandma, his grandpa, his daddy, his G-ma Roz, his aunts, and uncles, our friends....It is so much easier to think that everything will be allright, than to dwell on the fact that it might not..The odds are not in Paytons' favor right now..But, ya know what?? We don't need odds..We need A CURE... And that is what we are ALL working on, and there are SO many of us, all working together, and working hard, so, it can happen, IT WILL HAPPEN...I read somewhere that the smallest groups of people, with the most passionate quests, are the "ONES THAT MAKE THINGS HAPPEN!" I believe this with everything I have got, and I work on it EVERYDAY...Love to you all...Deb
Boy, is Jen right on the money!! We were VERY SUCCESSFUL today!!!!! Dinner for a WEEK will definitely be on the auction again~~It looks more like dinner for TWO WEEKS!! I know I am SUCH A MOM, but I explain every little move to Jen as we are "working it," spreading the word, and trying to get donations!!! I believe that she has learned how to be a PRO after today!! It is a little easier for me, because this is MY CHILD, and NO ONE knows as much about SMA as I do, (well maybe a couple people!!) but, I am very confident...It is hard for me in the sense that it is difficult to pour my heart about my own son, that is TERMINALLY ILL, over and over, but I do it, and I do it again...because it is ALL FOR PAYTON and I will do ANYTHING and EVERYTHING I can to save my baby. THANKYOU SO MUCH JEN!! We make a GREAT TEAM!! Payton is AMAZING for alot of reasons, but just the fact that he is STILL alive and doing well, is the most amazing fact of all..And this is a hard fact for even me to face, let alone his grandma, his grandpa, his daddy, his G-ma Roz, his aunts, and uncles, our friends....It is so much easier to think that everything will be allright, than to dwell on the fact that it might not..The odds are not in Paytons' favor right now..But, ya know what?? We don't need odds..We need A CURE... And that is what we are ALL working on, and there are SO many of us, all working together, and working hard, so, it can happen, IT WILL HAPPEN...I read somewhere that the smallest groups of people, with the most passionate quests, are the "ONES THAT MAKE THINGS HAPPEN!" I believe this with everything I have got, and I work on it EVERYDAY...Love to you all...Deb
Hello friends and family! Well, we are ALL still working feverishly on the benefit...We have been really fortunate this year, with a ton of volunteers, and everyone working really hard...It is going to be a CRAZY month to say the least!! Thankyou SOO MUCH G-Ma Roz for my awesome Mothers Day gift!! You are always so generous, and we appreciate ALL YOU DO!!If you plan on having an ad or personal message in the auction booklet this year, be sure to get it in EARLY!!! We go to press with the booklet much earlier than last year, and need to have those things in by NEXT WEEK!!!!! We are all looking forward to going out again Monday, if anyone is interested in coming and helping out, please email me and let me know!!!! Payton wants me to say THANKYOU to little Max for bringing him the new toy car today!!! Payton LOVES presents (just like his dad) and he was amazing with the car, he just held on to it with his tightest grip possible and just acted like it was "HIS." Must be a boy thing!!! Thanks for visiting Max, you can come over and see Payton anytime!! By the way, I have heard from a few people saying they would like to come over, meet Payton, but didn't know if that was "cool" with me/us, or if it would not be appropriate or something...It is really just the opposite~~ We are VERY busy, but we are home ALOT, and there is no reason why Payton can't have visitors!! He LOVES to watch people, esp. kids!! The ONLY thing that I ask, is to be sure that you and your children are not "coming down with something" or feeling sick AT ALL...I am sure that I don't need to go into it for most of you, but for those that don't know...Payton is So weak, that if he contracted just thelittlest bug, or cold, or GOd forbid flu, etc...HE COULD DIE...I am not trying to be dramatic, it is the truth..He cannot handle those things very well in their mildest forms, if it was a bad one, he probably would end up very sick, and if he got pnuemonia, he would be in big trouble! So, yes, PLEASE visit, just make sure you are healthy!! And call me first, just in case I am doing tae bo!! HEe Hee Just kidding:0) Love to you all and hopefully, we will see most of you in exactly ONE MONTH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
hey everyone down home. what's up Freemans? i'm glad to see htta everyone found the humor in my 8 journal entries. let's just say i had to make up for lost times=)i see things are going smoothly with event details. i can't wait to come home for it. i've been looking forward to this all year long. DEB, sounds like you have an ANGEL on your side besides PayJay... JEN B. from what i read is heaven sent. keep up the good work JEN i know Deb, Rob, and Pay appreciate all you're doing for them. I was talking about PAYTON to my roomates tonight. i have his pictures hanging on my wall and we got into a deep conversation about him. my best friend might come home that weekend and i was wondering if i oculd bring her to the event. she seemed really interested in SMA and our boy!!!! well i'm off to bed summer school started today and a;ready gave me a swift kick in the BUTT. I miss you and love you TREMENDOUSLY!!!! XOXOXO JACKIE P.S. DON'T WORRY I'LL ONLY SEND THIS ONCE!!!!!
Hi out there!! Nothing much going on~~just waiting for the cure, ya know!!!:0) Payton had speech today and he just LOVES speech and LOVES ILENE!! Unfortunately we will have a new speech therapist in 2 weeks, because Ilene' schedule does not have an afternoon appointment open, and Payton keeps missing therapy, as he likes to sleep in (just like his mommy:0) Well, this is a real bummer, as we absolutely LOVE Ilene, but it will all work out for the best...Payton needs to have speech and the more often he gets it, the better!! He has PT this weekend, which I am SURE he is NOT looking forward to...Payton has been watching me and grandma do taebo quite a bit lately...He seems to like to watch, but then he falls asleep:0) I guess we bore him with our workout..P.S. If anyone is looking for a new workout to mix things up a bit, we just started taebo acouple of weeks ago, and my mother and I are both ADDICTED!! I am so thrilled to get a break from running, and my mom got a break from the ski machine...Not to mention I can do it at HOME with my baby, and I'd rather be within reach of him as much as humanly possible without completely losing my sanity:0).....He is also back on the "Emperor's New Groove" kick...Nice change for us, as the "veggie Tales" silly songs was really starting to take its' toll on me and grandma!!!! Everything with the benefit is coming along, this is a TON of work for everyone, even all of our volunteers, and we want you to know that we are doing EVERYTHING we can to make this years event a HUGE SUCCESS!! EVERY dollar counts and we are RACING to find a cure/treatment!!!!!!!!!!!!!!!!! Don't forget to get those personal ads and messages in ASAP!! Next week we will go to print...I have already gotten a few mothers day cards, and I want to say THANKYOU SO MUCH to all of you for thinking of ME on Mothers Day!!It is quite flattering and all of your remarks make me teary...It is GOOD thing to have a WHOLE DAY to thank us (all of us mothers) for EVERYTHING we do and sacrifice (happily of course, for our babies) for our children...I think there should be whole MONTH for Mothers!!!! I am sure all the mothers out there agree!! ;0) Being a mom has been THE MOST gratifying and wonderful experience of my life...It is the one thing that has made me become the person that I have always wanted to be...All because of Payton...So, I say I have ALOT to thank HIM for, because this whole mother thing is the BOMB...I am tougher, stronger, more confident, happier with myself and always ready to face any problem head on, without worrying about myself...That is pretty darn cool, I say...So, here's to being a mother!!!!!! Happy early MOTHERS DAY ladies!!!!!
Hey there guys and gals!!! I am glad to hear that Payton is doing good...sorry about Ilene...I know how much you guys love her. Well I just want to tell you, I have a few things that Office Depot gave me, not as much as I hoped for, but every bit helps right? Well I email Mark Summers from 103.1 the Buzz and he responded back to me. He gave me his promotions directers name and number and I am going to call her today, He said he would love to help out, but I have a feeling they will only give us CD's and T-shirts, but I will lay it on her thick and ask for more. One more thing. Yesterday I emailed Paul Castronova telling him all about you guys and he emailed me back today and said he was going to forward my email to his promotions department. So hopefully I will hear something back in time for the benefit. I know what I am doing isn't much, but I feel like I am contributing as much as I can. I hope it helps..Anyways, I know what you mean about Taebo. I was in love w/it...then all of the sudden I stopped doing it...then I got married and it seems like my looks don't matter and ryan and I are becoming these fat slobs...hee hee..but that's ok...we've been roller blading...We'll lose the weight together..ok, we will stop by this weekend to drop some stuff off. We love you guys soo much.. The Withey's
hey Mis Deb,Rob,and Super Trooper, Glad to hear everything for the event is moving along smoothly. Just wanted to drop a quick line to let you know i have an e-mail out to all the guys in my unit letting them know i need some volunteers and i already got 2 so shouldnt be a problem as far as security goes. Besides we get to be in uniform around hot chicks :o) so hopefully ill see you this weekend and you can let me know the details as far as time and everything else goes.Oh and my mom is geting the donation from her shop today so ill drop that off to ya this weekend. Well time to go running in our beautiful south fla heat. talk to ya later. Michael Murphy
Jamie, you are darn right!! EVERY little bit helps/counts...It ALL brings us closer and closer to what we are going for!:0) Thankyou so much for helping and emailing and hopefully they will remember us on the radio!!! Hopefully I will see you this weekend!! Remember, Payton has PT Sat and Sun at 2:00pm til 3:00pm, so try to come before or after that!! And bring me pics of the wedding!!!! Michael, thankyou SO MUCH for getting the guys to help with security!! I think it will be quite exciting to have marines there to help us with the security end!! Just let me know how many guys, so I make sure we have FOOD for our young men!!;0) Tell your mom thanks for getting the EAZ certificate again!! Everyone really went after that GC last year!! I think Marni was pretty relentless though and ended up with it!!! HELLO MARNI!! I am thinking about you and your family all the time, be sure to call me whenever you get time!!!!! I am working on Mothers' Day--I didn't really have much of a choice, but they are only making me work in the morning, thank goodness...I am not aggravated, they only have so many bartenders, and that is just the way it works...I believe that they try to make sure the moms are off, but a few bartenders took this week off to go on vacation, so that sort of messed things up for us moms!!! So, if you are going to lunch with mom, try to come see us at OUTBACK!! We will take good care of you!!! I am REALLY happy with our table/linen/chair guy!! What an AMAZING person!! Not only is he doing everything at cost, but he is also making a donation to the benefit, AND he is not charging us for set up/delivery/take down/pickup...How cool is that?? IF you EVER need someone for this type of thing, call him at SUPER TENTS in Coral Springs...His name is Alberto....We were REJECTED by Publix, so if any of you know managers at Publix, etc.. you should tell them they should be ashamed!!! This is such a good cause and they specifically give to childrens charities...I don't understand the problem, but we will try again next year, and maybe they will get it straightened out by then!!! Well, lots of OTHER people have been real generous and donating lots of stuff, so no worries mate!! We are still looking for sports memoribilia, so if you know ANYONE that can get this sort of thing, etc...let me know!!!! Good luck to Matt Ernst in his quest to get a couple Panther players there!!! Celebrities would definitely be the thing to get us on the NEWS!!! Keep your fingers crossed!!! Well, no nurse tonight, so I must get to work, but I will see you ALL very soon, and am very excited for that!!!
Hey Deb, Payton and Rob, I'm so happy so see that things are going smoothly for the benefit! Payton is very lucky to have so many people taking care of him! I have to tell you something...I definitely regret that I will not see marines in uniform :o)...anyway... people here keep on giving money to me for Payton, so I can't wait to see you guys to give you what we managed to get. But still, I have the impression that it is not enough and I really want to find a way which would be more productive... Love to you all! Sophie
Well, it is Mothers Day...I feel very very lucky to have been able to share this day with Payton and I will continue to treasure each and every day that I get to spend with him....Happy Mothers Day to all you mothers...Lord knows we deserve it....:0)
Hey guys...Well I just got a response back from 103.1 The Buzz. After leaving a few messages for their promotions dept and not hearing anything back, I email Mark Summers again telling him and he just responding to me. He said they don't have much but he put together a basket for me. I will pick it up today! I hope it's some goodies!! Now I just need to hear from Paul at Zeta! Talk to you guys soon!! We Love You. P/s. It was sooo good to see Payton this weekend. We miss the little guy!! Withey's
Jamie, I am so glad you guys got to see Payton!! Thanks so much for all the stuff you got from Office Depot--they will make 2 very nice packages/baskets!!And thankyou so much for my card! This Mothers Day meant more to me than you could ever imagine...of course, this is because I don't know how many mothers days I will have with my little angel, but every one I get is worth more to me than anything in the world..Really..I hope that next year I will spend the day with Payton again, and the year after that, and the year after that, but I have to be realistic..I am hopeful, but also realistic..not an easy task..Nonetheless, thankyou so much to EVERYONE that called and wished me a happy mothers day and thankyou for all of the cards I got too!! I felt very special because of all of you, and I needed it. Today is another day of soliciting auction stuff, so wish us luck!! We are going in 3 separate teams, (My friends are the BEST!!) and we need you to keep your fingers crossed for us!!! I will update you later!! We had a nurse last night, our longest coming, most reliable nurse ever, and I would like to say thankyou to Karen for always being there for us, sticking with us through this insurance/medicaid nightmare, for being part of our family and for all of the nights of sleep that you have given me!!!!!!!!!!!!You are the best!:0) Well.. Payton is doing well, he looked so happy yesterday and stared at me for SO LONG...I said, "what, is this for mommie's day, all the staring?" I mean deep into my eyes he stared and didn't stop for the LONGEST time...He never does that so it felt to me that it was my mothers day present!!!!!!!!!!!!! He is such a gift. Take care and talk soon...
Hey Buddy!! Today was another successful day!! So many people want to help you and god knows you deserve it! Did you know that you have the BEST mommy in the world, she is right up there with my mommy :). All day she talked about you! You are so special that i cant even stop talking about you to other people. I think i have figured it out... you are an addiction. Once anyone has set their eyes on you they cant get enough of you!! One of these days we will all find a treatment for this, and when we do we can all thank your mommy for doing soooooo much to raise money because EVERY dollar counts! Well i must finish my homework :(. I will see you soon. Love always, Jen xoxoxox P.S. Let me know when we are going out next b/c i cant wait!!!
Hey guys! I am sooo excited right now...I just heard back from Zeta and they are donationing....are you ready?.....A Home Surround Surround Sound System w/ a copy of Scary Movie 2. I couldn't belive they were giving that to us!!! I had to read the email like 5 times to make sure I was reading it correctly. Well I feel much better b/c The Buzz didn't really give cool things....I am sooo happy. Well I will talk to you later!!! Gotta get back to work! We Love You!! The Withey's!!
Dino-mite website Payton...loved the pic's oh by the way one is missing on page 2 c ya later hug & kisses & stuff Karen
Ok, it has been a rough couple of days for me with no computer, but yes, I am holding up...Hee Hee...Anyway, thankyou to my honey, for SOMEHOW getting me back online to do my thing...Payton is doing well, he had a LONG day today..We went to West Palm for his RSV shot and tried to visit with his GI..NO luck there.. It is an all day affair to do this visit (must be done every month) and my wonderful mother takes 1/2 day off work, to help us out and get us to the appt!! Thanks mom!! Social Security (medicaid-whatever) is now telling me that I need to PHYSICALLY bring her the info (the lady I am dealing with now acts like I am trying to steal money from her personal bank account) and I tried to explain to her that I would not be able to do that, as I have no nursing help and I cannot be there (she is there til 3pm) during the day...Well she sent me a letter telling me I needed to COME to the office, so I guess maybe she doesn't believe me or didn't hear me or something...It is so nice how these organizations that EXIST to help people like us/Payton are so COMBATIVE and DEFENSIVE and UNWILLING to HELP!!! It is SO RIDICULOUS that I cannot even think about it very long, because it is wasted energy for me to get all crazy over something I can do NOTHING about...ANYWAY, Payton was such a TROOPER today and he had to see the doctor (he hates that part too) but he was such a big boy!! AND he happened to be SUPER CUTE today too!!:0)....SO MUCH going on with the event...We are going to the printer on Monday, so if you have not gotten me your personal message or ad yet, you can still email it to me or to grandma at paytonsgram@aol.com She will be happy to email it to the printer!!! We are working like crazy to get stuff donated and this year we have some real pros (or at least they sure seem like it!) taking the reins and getting things done!! You know who you are, and PAYTON SAYS THANKYOU GUYS!!!!!! TRULY AMAZING just what you have done already and I can't imagine what is to come in the next 3 weeks!!!!! You are the best!!! I am looking forward to going back out myself and hitting the pavement with donations.. Just wish I had more TIME!! I could sure use some more of that!! Jamie, thankyou so much for all your perseverance with the radio!! It PAYS OFF TO be a pain to these people!! I have learned it time and time again, esp. with these donations!! ;0) We have just learned that Norweigan Cruise Lines is donating a 7 day cruise for two, to the carribean, worth $3500!!!!!!!!!!!!!! WOW, huh??? THANKS DIONNE!! AND DON'T FORGET, we will have THE CUTEST little labrador puppy waiting to be picked up by a happy home/family/children:0) and he/she is coming with every single thing you can think of that a dog would ever want/need!! REALLY!! You'd be amazed at the details Shannon has covered for this soon to be spoiled puppy! We have already sold 60 pins just in our store!!! So, if you have not bought one yet, you need to see Jen Berman or email her for one!!! xxgiggles4xx@aol.com We are so excited, but are very busy to say the least, so if you or anyone you know would like to help out at the benefit,etc.. let us know...It will be so much FUN!!!Take care and talk soon!! Deb P.S. I got beautiful flowers on Mothers Day from an anonymous person...anyone taking credit?? IF not, THANKYOU SO MUCH, they are WONDERFUL!!!!!!:0)ANd, Payton says hi Karen!!
Hi Lil'P~ How's it going today? Glad you got to get to the Drs. yesterday~the weather sure wasn't too good for the drive. I just wanted to let you know that soooo many people love you and think of you daily. You're constantly in my thoughts and I hope this is your year....your year to make great strides,to eat at McDonalds, to hug,to laugh and to tell Mommy & Daddy just how much you love them. Soo many people are working hard to make sure that that happens for you. You have affected so many peoples lives...lots of whom have never had the good fortune to meet you in person, but who know all about you & now thanx to your wonderful Mommy all about SMA too.If love & good thoughts could heal you you would be up & about ( & would've been years ago!!).Although you are unaware how you have touched so many people and how you have allowed them to show that the world is full of folks that really do care~I hope that one day you will realize what a truly amazing person you are and what goodness you have brought forth into this world. Mommy and Daddy truly brought a miracle into this world the the day you arrived...a miracle of love, hope and the future. Have a wonderful day lil' miracle man...I hope to be able to visit on Saturday w/Deven & Kendal. Love, Shan xoxox
Hi Gang...it's getting down to crunch time for donation items for the benefit. If you know of ANYONE who would be willing to donate items please give them a holler and ask. You'd be amazed at what people are willing to give to help out with this cause. If you have a sports memoribilia store near you stop by & ask for something to put in the auction...we can fax them a donation request letter & it is a tax deduction!!! This is going to be an awesome event & I can't wait to see the money we raise. Come on gang we can do this!!! Happy weekend everyone.....xoxo Shan : )
YES WE CAN!!! It is amazing what is going on with this benefit, and how excited and pumped up everyone is!! I can vouch for all of us soliciting donation items, that it is quite a "HIGH" getting things donated for this cause...What is more worthy than saving a young childs life???????? I can't think of ANYTHING....So, it is well worth all our efforts, and we will accomplish GREAT THINGS together....ALL OF US!!! I am SO looking forward to doing BIG things in the world of sma...Will get into that later...Please let me know if you need a donation letter, or ANYTHING at all..I will make sure you get what you need for the benefit!!!! Volunteers: Don't forget, we need everyone there at 5:00pm!! I can't wait to see everyone and don't forget, Dr. Bach will be there to speak and see our kids too!! How exciting!!! I will write soon, provided my computer doesn't go out again!! Take care everyone and talk soon...P.S. Payton is doing great and he is staring at me now, wondering when I am going to come sit by him, and get OFF the COMPUTER!!!:0)