Laura Stants
laura@our-sma-angels.com
27 Nov 2001
15:27:58
Laura Stants
laura@our-sma-angels.com
27 Nov 2001
15:27:58
Hi Payton, I just wanted to leave a message and test your journal and say that I look forward to getting to "know" you!
Hi Payton!! We love you!! Love, mommy and daddy!
Hi Payton, How are you? Are you being a good boy? He's always a good boy! We really enjoyed visiting your web site. We love you very much. See you real soon. Love, Grandma and Grandpa
Hi there little man! We love your webpage and most of all your pictures...We miss you and hope to see you soon. We are so proud of you for being such a courageous, brave and smart little boy and we're are so happy you are doing well. Ryan wants to show you more of his toys and wants you to come over soon...bug your mom and dad so they bring you over!!! Love ya, Regina Jim and Ryan
We just want to say hi and thankyou to all that come to visit Payton at his website! I will definitely update pictures often so be sure to look and a HUGE thankyou to Laura Stants for putting all of this together for Payton and our family!!! Take Care everyone Deb and Rob and Payton
Hi Payton and all The Freeman household.Love the site.I put it under my favorites so I can pull it up anytime.Your proably watching Toy Story as we speck.I'll let you get back to the movie.Yell real loud to keep mommy awake ha ha love, Sandra
Dearest Payton and of course Deb & Rob, This web site is COMPLETELY & TOTALLY AMAZING!! I was so moved reading "your story" and seeing all your wonderful pics. (I know there will be more pics to come soon, Deb, I just couldn't control myself!!) :-) Payton, I love you VERY MUCH & you have the VERY BEST Mommy and Daddy in the entire universe! I know I can speak for everyone by saying that we are praying every single day for a cure... I love you ALL, Marni
this is to commend you deb and rob.. you are the 2 best parents and Payton could not have made it this far with out you..Rob you are my son and i don't know how you you do it but i am so proud of you for all the love you have and give to payton and your loving wife and my wonderful daughter-inlaw, who truly came from the heavens. deb is like an angel herself, calm, relaxed and beaming with love.. you both make life worth living.......every day we have payton is a given and don't anyone ever say it will never happen to you because it can... we love you g-ma roz and bill kisses to payton my #1 grandson0!!!!
hi my little angel.. i miss seeing you since i live so far away but i think about you often..i remember walking you to the dock so we could hear the birds when you were little..i love you payton! keep bugging your daddy when you don't like his choice of movies.. i don't blame you he has lousy taste in movies that is.... love g-ma roz and bill see you soon xoxoxoxoxox
Dear Payton, Debbie & Rob
What a beautiful website! Keep fighting, my prayers are with your family!
Hi Payton, I love your new pictures. You are a very handsome little boy. Your mommy and daddy take such good care of you. I love them and I love you too, very much. Love, Grandma
hi my sweet little boy .. your little photo album is so cool... all those people who love you very much.........see you soon love and kisses grandma roz oxoxoxoxoxoxoxoxoxoxoxoxoxox
A life filled with love is a good life, the best life... and WHAT a good life my nephew has! My love to you and to your mommy and daddy, too.
i love the website... you are so precious... and so are your mommy and daddy... love to all...kisses to all... Unka Rick
Hi Payton, I hope i get to see you soon! Love the pictures!!!
Hello Payton,
I love your web page. Just think Payton, you will be able to look at your own web site when you get the high-low chair!! Won't that be the coolest. Rest up for Wednesday. Hugs and Kisses,
Susan
"To infinity and beyond!!!!!"
This is a great site, and thanks to Rick Dillman for sending it to me. Keep up the good work, and continue fighting the good fight.
Best of love to all of you. I hope to see all of you again soon, especially Payton.
Hey Payton!!! Wonderful pictures, I loved every one of them! You and your mother and father are awesome (and grandmother and grandfather too)!! Love to all the Freemans and Letters!!! Uncle Bobby
Hi out there! We are so thrilled to have this site up thanks to Laura Stants! We have added pictures so be sure to look and I will update them often!! Payton is doing well, except for the constipation that has him very uncomfortable right now. I think he spent more time awake last night with Sandra then he normally does. This morning he finally got a suppository and he is CRASHED now. I think he is a little exhausted!! It is so nice to see everyone's' entries to Payton's' site!! I will be sure to write on here often with how he is doing and what we are doing,etc.. Love to you all!!!!!!!!!
Hi Payton! I just left your grandmothers shop and got the best haircut ever. I see your photo in Roz's station every time I go in and we always talk about you! You are so loved. I want to wish you a very Merry Christmas and a wonderful New Year. Ann
I know your gramma Roz. What an amazing story. You have learned so much about yourselves and the truly important things in life. God be with you.
hi Payton, my name is Sophie and I am the girlfriend of your cousin Matt, I live in France and your aunt Amy sent me your website's address. I saw you once last year when you just discovered the world. You're so cute! I hope I will see you again, maybe next summer... if that doesn't bother your parents of course! Deb and Rob, I want to tell you that Payton is lucky to have parents like you. I am very moved by your story and I keep asking Amy for news about your wonderful son. Keep fighting against the disease because the weapon of love is stronger than anything else. Take care! Love to everybody and hugs to Bob and Debbie. Sophie
Hey Bud, I Just Wanted To Tell You How Very Proud I Am To Be Your Dad, And That I Love You So Very Much! And No Matter How Bad My Day Is Going, Just One Big Kiss From My Little Bud And I Forget It All. I LOVE YOU, Love Daddy P.S. I Love Mommy Too.
hi my little boy! see how much people love you and how many hearts you have touched and you don't even know them..i love you little man and your mommy and daddy too!!!!xxxxxxxxooooooooooooo
grandma roz & bill
Robert and Debbie, Your always in my thoughts. Your journal is very special. Love your aunt candy
Hi The Freemans!! I think this website is so special to everyone who knows payton as well as those who don't. I hope this educates all the people out there who don't know what SMA is. Payton is very special to us and we love him so much, We never take anything for granted because of him. To Rob and Debbie, you guys have taught us the true meaning of love. You guys love payton so unconditionally and we are so thankful to have you in our life. We will find a cure for this disease, because we have dedicated people like you trying to find a way to make it better for everyone else. Thank you for being so thoughtful. We love you so much little guy.
Hello Sweet Payton! I love the new pics, Deb & Rob!! My absolute favorite one, however, is "Payton at 7 months"....I just love his smile in that picture!! Every time I go online, I check Payton's site, I love to read everyone's comments and to look at the pictures! This was a WONDERFUL idea!!! Kisses to all of you.... :-) Love, Marn
Hi, I am one of your cousin Matt's French friends, and he gave me the url of your site. You have a cute wonderful baby... I admire you for your courage and your strength. I wish they will soon be able to find a way to help your cutie child to feel better. I am happy you found friends and nurses who have been able to support you. Hugs.
Hi out there! Payton had 2 doctors appointments today. Both were in West Palm Beach(I cannot go anywhere with Payton alone-in case he needs help breathing, gets a mucus plug,etc.-so my wonderful mother takes 1/2 a day off of work to help me whenever we have these visits)and we drive for about an hour to get there. Payton absolutely LOVES going for drives. I think he feels more mobile or something and just loves watching ANYTHING and EVERYTHING go by... First, he got his RSV shot, which he anticipates now,because he is so incredibly smart:-) and desats before the shot even goes in. Then, it was across the hall to the GI doc, Dr. Adams (who we really like...very smart,professional and helpful) where he got his mic-key (g-tube button) replaced. Payton HATES to have his g-tube messed with and basically hates docs period so he really freaks in Dr. Adams office EVERY single time we go there. It sucks because every time we see a doctor, they see him at his worst, purple faced and desating...me applying the bi-pap and Payton giving it all he's got just to put out that cry. Anyway, as usual, as soon as we left the office, I'm talking before we even get into the elevator, he was all bright eyed and happy.He is such a trooper. He just doesn't like docs and I don't blame him. We just got our denial letter for the hi-low chair. THis is something that we would use to lift Payton up high and move him around the house so that he isn't stuck on the couch all the time(Payton has to stay flat, otherwise he gets mucus in his airway, aspirates, and basically can't breathe). Even lifting him up to move him has to be done quickly, so we figured the hi-low would be great, but ins. says that it is not a medical necessity. THey consider this a "luxury." Ridiculous I know, but this is common dealing with ins. You must fight for EVERYTHING. They don't just give you what you need, even with doctors notes, etc... you HAVE to fight. And being that we have our work cut out for us as it is, this fight gets very tiring, esp. when you don't win. We are also in the middle of fighting for formula or help with it, because Vivonex is so expensive. They denied us for that because they sma is not inherited. HaHa. So anyway we gave them proof that it IS inherited and they told us that it doesn't matter, it has already been denied so now we are going through the appeals process. Can you imagine if Payton was an adult and had to deal with insurance on his own? He couldn't. And I have a feeling that there a TON of people in the world that are sick that end up not being able to get what they need because they do not have the time or energy,etc...and I'm sorry but that is complete BULLSHIT! Anyway, on a lighter note. Payton is looking very cute these days and I should have pics of the wedding and recent pics of him up soon!
Love to all!
Hi Payton,
It's me your #1 cousin Ashley. ;) I LOVE YOU. I hope you feel better. Be good because Santa is coming soon! I love you very much and send me A email. I miss you very much Ashley .
Hey little guy,
I want you to know that you are ALWAYS in my thoughts. I hope you are enjoying the presents we brought to you last month. You seemed to like the vegetable dvd. I hope you haircut is growing in nicely. You'll notice after 6 weeks or so you'll have to get the ends trimmed. I'll email you soon, and keep being a good boy in the mean time.
Love, Aunt Holli
hi my little angel. hope you are having a good day today..watch a good movie and put your feet up and relax..i love you and miss you...kisses to you... grandma roz p.s. tell your dad i hope he enjoyed the music awards and let you watch them.........
Hi Payton, Mom & Dad. I came across your website by chance at work. I believe you are a very lucky little boy. You have the best parents in the world. In return they have the best & cutest son. I don't have much however, If I can help with giving what I can I'd like to give what I can to help you receive your high low chair. I will tell all my friends about your website, I'm sure they will want to help as well. Stay strong Payton, you have mom & dad your very own angels at your side.
Hi PAYTON, Rob & Debbie,
All of you are always in my thoughts and prayers, We love you all very much.... Love... Heather, Dallas, Chace & Russell
Hi Debbie, Rob, and Payton,
Thanks so much for sending me your website. The pictures and your story are very moving. Previously I could only try to imagine what you were feeling and experiencing; I really appreciate your sharing some of that with us. I am proud of you all and your parents. I especially enjoyed my visit with you last June. Great grandpa and I love you all very much.
Love,
Great grandma Helen
Dear Debbie, Robert, and Payton, We were very touched by your story and the outpouring of love from your friends and family.We had never before heard of SMA and now are wondering why? How can we h elp to eliminate and/or bring more awareness to other people? Payton ,you are a beautiful gift from heaven and are very lucky to have such WONDERFUL parents. Robert, Debbie, I give both of you more credit than I ever thought was possible. You are both amazing. I have only seen pictures of your son and he is a perfect mix of both of you. Holli keeps me updated on what's happening and I am pleased to hear he is doing ok. This webpage is absolutely beautiful,thanks Holli for showing it to me. Rob and Deb you are always in our prayers and thoughts. your friends in Daytona Beach, Deb and Deb.
Hi out there! Thanks so much to all of you for checking out this site and writing to us! It really does mean a lot to hear from you all on this site!! It is a great way to keep in touch and keep everyone updated!! A lot of people ask us how they can help,etc...We had a benefit last year through Outback that raised a lot of money for sma research. 100% of that money went to FSMA(Families of Spinal Muscular Atrophy). They are a 100% non-profit and 100% volunteer (this is because it is run by parents of children like Payton). They give 80 cents on the dollar to research, 17 cents to an equipment pool, and 3 cents to keeping them up and running. They provide a message board that I read daily (www.fsma.org/) and have helped us on many occasions with info,etc....We are going to have the second annual "So Many Angels" benefit again in 2002, probably late May, early June. All I know so far, is that we are definitely doing it again, and we have our work cut out for us!! For those of you that want to help, we would be forever grateful if you helped with the benefit. Our biggest concern is to find a treatment/cure for this disease and to save our son from dying from sma, so we are commited to this benefit and want to raise as much money as possible for research!!We are soooo close to a cure/treatment!!!I have been told by the most reliable of sources that we are about 14-17 million away from a probable treatment/cure. So that is our goal...Please tell EVERYONE you know about the benefit and please e-mail me with your addresses so that I can mail you invitations (pjf714@netscape.net). If you can help with the benefit as far as volunteering, please let me know. If you know anyone that would like to donate anything please let me know (I have all the tax ID info-to write it off, etc..)And if you can think of anything else that might be a good suggestion or anything I might be forgetting, let me know!! We appreciate ALL the help so much!!!ALL the generosity of so many people!!! And we know that we will find the cure for this horrible disease sooner with All of your help!!!!!!!!!!!!
Hello Payton, Deb and Rob; Just wanted to write in response to the upcoming benefit. I would LOVE to help in anyway that I can. Please know you ALWAYS can count on me!I am here for you... I love you, Marni XOXO
Hi Payton!
You have a very beautiful story to tell. We look forward to meeting you in person soon. God bless you and your wonderful Mom and Dad. Do you like Clifford the big red dog?
Love, Aunt Marge, Uncle Mark, Jacob and Joey
hi payton Its me ashley you are my #1 cousin I love you vrey much Hi rob I MISS YOU VERY MUCH hi DEBBIE I miss you very much Ilove all of you very much from ashley .
hi to my #1 precious little boy.........hope your having a good day..........love to all of you......keep up the good work.. the web page is really awesome....you know i'll be there for the fundraiser............i wish i could do more....... love g-ma roz and bill
Hi Payton and family. Debbie, thanks for posting on Conner's site to tell me about Payton's. I love it! Conner absolutely loves Buzz and Woody. I really do hope I can get down to the next benefit. I'd love to meet Payton. I'm sure he'd remind me a lot of Conner. He does in the pictures. I'll be keeping up with the site to see how Payton and you all are doing and I hope to meet you in person one day soon!
I just want to say hi and thanks for visiting to all that come to this site! Also, I do not know who Clifford the Dog is Aunt Margie!? But I do love Toy Story and Veggie Tales and Shrek. I would have to say that Toy Story is my all-time favorite. I have now seen version 2 over 1 million times!!!!!!!!JK :-) Really only about 800,000!:-) Also, I want to say that I miss my cousin Ashley, we watched Shrek together when she was here and I want her to come and watch movies at my house!!I love you all and thankyou for caring about my fight and for all your help! Payton James Freeman
Rob, Deb & Payton, This is absolutely beautiful- I plan on sending everyone in my address book the link to this site! It is a pleasure to know such loving people like all of you. You are amazing and courageous! Payton is so lucky to have such wonderful parents, family, and friends who love him so much! And of course we are blessed to have Payton in our lives. I tell everyone about Payton. I love him; he is such a handsome and wonderful boy. I'll always remember the first time I met him; It was a joy not to be forgotten. I look forward to seeing you all again soon! Love ya, Jennifer
Hi Payton, I love all your pictures. Toy Story is one of my favorite movies too. I hope I get to see you again soon. Love your cousin, Molly
hi Debbie, Rob and Payton - You all are such an inspiration.....Payton is so lucky to have such a strong , brave and loving family. The pictures are beautiful, he has really grown since i've seen him! This site is so great and you have done such a great job with it! i'll keep checking for new pictures! love and prayers always - Brooke
this is from samie in her words: Payton is so cute, I want to go see him and watch toy story with him too, and hi to aunt debbie! she says she could also bring her clifford tapes!!!
Hi everyone!! I am pleased to say that Payton is finally over his constipation nightmare and he slept for about TWELVE hours last night! He used to do that alot but not lately!! Rob and him are playing fart games right now...don't ask...I don't even know:-)
Well, time for bed...tomorrow is a long day...love to all!!
Hi Rob, I have,nt seen you since you were very little, 2 or 3 yrs. old I guess. Your Mom & Dad named you after me, Robert Joseph. I was real good friends with your Mom & Dad, and still am of course! Your Dad has been up to visit me a few times in the past, and I went down to visit him this past July. I live up in the Boonies in Northern N.H.--Pittsburg, Moose-Country! I've also been in touch with your Mom, I found her through Classmates.com . She wants to come up here to do some Snowmobiling this winter. I want you and your wife to know that my Prayers are with you both. God Bless you Payton, I wish I could meet you someday. Your parents Love you very much, along with a lot of other people pulling for you. Sincerely, Robert J. Murphy
Hi Debbie, Rob & Payton: Thank you for sharing your angel with us. He is one of the most beautiful babies I have EVER seen. And his smile is so precious. Looking at his pictures makes me smile because he looks so happy, but also sad because I know what you are all going through. SMA is a nightmare. Your family is a true inspiration and testament to the amazing nature of the human spirit. I will pray for you all and ask my little angel Andrew, or Booper, in heaven to watch out for your little Payton. I pray for lots of smiles for all of you. Thank you for loving your son so much. Love, Gina
Hi Payton and Family, Sorry I missed you Thurs.Have had a tooth ache.Sure do miss you.Are you keeping Mom busy?I'll see you Sunday. Love, Sandra
hello everyone, first things first, i just want to say how nice it is to hear from each and everyone of you. paytons web page helps all of keep in touch and allows people who are new to S.M.A. to understand that you don't and shouldn't give up, I know that as i pictured life as a dad i thought some of my major problems would be, mcdonalds or burger king, or what number my son would wear on his base ball shirt, i always thought he would be number 22 like his uncle Ryan. I thought that when we started to go to see the dolphins play on Sundays that i would somehow pull for the fins (paytons #1 team), and with everyone's continued support for a cure we can watch all of our little angels hit a homerun. thanks to everyone who reads this and don't forget about our big fundraiser tell everyone. together we will find a cure, we love you all. P.S. I LOVE YOU PAYTON AND DEBBIE.
Hi Payton!
I am one of your Aunt Amy's friends here in Arkansas. Although I haven't had the pleasure of meeting you personally, I know that you are a great fellow who has brought joy to the lives of all who know you.
God bless you, your mother, father, and everyone else who loves you(we are many),
Doug
Hi Payton! Your Aunt Amy is a friend of mine here in Arkansas and I'm so glad she let me know about your website. I'll be keeping you and your mom and dad in my thoughts. Thanks for sharing your brave story. You all are an inspiration.
Sandy
Hi Payton,
What a beautiful baby you are. And what strong and loving parents you have. I too am a friend of your Aunt Amy's - I should have known the rest of her family was as terrific as she is. Best wishes to all.
What a beautiful boy Payton is....his eyes are beautiful. I too have a daughter and have also lost a son with SMA type 1 and we too are fighting for that cure!! Keep fighing Payton and Lily sends you hugs and kisses!!
I'm also a friend of your Aunt Amy's.
What a beautiful baby you are. And what strong and loving parents you have.
Best to all, Elizabeth
Well Payton, we haven't been formally introduced, but I am friends with your Aunt Amy in Arkansas. It's kind of crazy, but I got a late start going to school, so I'm closer to your grandmother's age than your aunt's. Your grandmother really threw me for a loop looking at these pictures. I was looking for that little old lady in the Tweety Bird cartoons, you know, with the cane and shawl and the glasses on her nose? Yeah, her. My grandma passed away last spring and she was 96. Now that's a grandma. I think I want to move to Florida with you, Dude. All the women in your life look young for their age.
You know, I have a daughter who is 11 now. When she was four she started having trouble breathing, especially at night. The doctors told me it was asthma. But the medicine didn't help. It just got worse. She was falling asleep during the day and they tested her for narcolepsy and all kinds of exotic stuff. She started wetting the bed again and losing her motor skills. She couldn't write her name anymore. The doctors never could figure it out and finally they told me to just enjoy her while I had her. She started vomiting in her sleep; her digestion was shutting down at night. Her limbs would be asleep and she couldn't walk when she woke up and it would hurt to get her moving again. Finally, a doctor had the bright idea to put her in a sleep lab, because I kept taking her to doctor after doctor just because I knew someone had to tell me what she had at least. And they found out she had a sleep apnea and with two operations they were able to restructure her breathing paths and remove the obstruction. It was a long time before she got all her motor skills back. But I do know about nurses and doctors who have no idea how to deal with people's lives. Today, earlier, I was telling that daughter she better get her act together and wash the dishes and I was wishing I had some time to myself for the millionth time this year and I forget that I have been given the miracle of my baby not once, but twice. Maybe, today, in a small way, for a third time. Payton, you are a beautiful human being and I cried those big starlet tears down my cheeks reading your mom's story on this webpage. I want to tell her that sometimes there are miracles, and that if I could have another one, I would give it to her. You are beautiful and alive and that's all anybody has today, just today, and no guarantees about anything more. I hope you get lots more. Lots lots. I wish you time and life and miracles, but not love. I think you have plenty of that already.
You know, your Aunt Amy said to look at the pictures so we could see she didn't know how to hold a baby. Don't tell her I said this, although you probably have noticed this for yourself, but she is full of kaakaa once in a while. There's only one way to hold a baby, and she figured it out already. You hold a baby with love. I would like to hold you too. Here, in my heart. :)
Hey, Payton!
I'm ANOTHER friend of your Aunt Amy here in Arkansas. From the looks of your journal, you are making new friends every day! I'm not surprised. You are a brave, handsome dude, and I am glad to know you. This is the first time I have heard of sma, and you can be sure that after hearing about you and your wonderful parents, I will be finding out more.
I see from one of your shirts that you like the Dolphins. My brother went to the University of Miami, who will be playing some time around New Year's Day. Will you get to stay up to watch the big game?
Gotta go now. You and your family will be in my thoughts and prayers always.
Peace and love, Jim.
Hi Payton! I am a friend of your Aunt Holli! Your web site is wonderful. You and your family will be in my thoughts. Happy Holidays to all the Freeman's and all those who visit this site.
hi payton, i'm yet another one of your aunt amy's friends in arkansas (we're a very loving bunch, ain't we?) i wanted to tell you that the doctors only gave my dad 2 weeks to live, and they couldn't have been more wrong. so you hang in there.
Payton, You are such a handsome boy! I pray everyday for a cure for this terrible disease. Until then, stay strong and keep fighting. Once they do find the cure, hopefully you and Skylar could meet and play....Wouldn't that be great?
to the cutest ring bearer in the world,PayJay, and Mr. and Mrs. Freeman of course, loved the site. the "toy story" wallpaper...very appropriate. well just wanted to say hi and I LOVE YOU so very much. can't wait to see you soon. missing you. xoxoxox love always, jax
hey lil bubba.. i just stopped in to get my daily dose of good feelings... and to remind you that the dolphins are playing tonite... tell your daddy to let you stay up if you can.,..lol..good night payton..sweet dreams love to your mommy and daddy, Unka Rick
Payton, I hope you like your signing snowman! My Mom picked it out because she thought you would like it. I can't wait to see you again! Rob & Deb, Gabe and I would love to help out with the benefit! Please let us know as it gets closer how we can help. I can't wait to see the new pictures from your wedding! Love, hugs and kisses to you all!
Hello out there!!It seems my sister is more popular than we thought!!:-) Arkansas is an awesome place with lots of great people!I have all good memories of Fayetteville and the Razorbacks,etc..thankyou all for watching out for Amy while she is on her own for the first time!!:-0 Hee Hee..Love you Aim...Seeing all of your messages on this board is wonderful for us and our family...I promise to keep everyone updated on Payton and the benefit. As of right now, we are waiting until after the holidays to start organizing the benefit. The first thing we do will be get the venue confirmed (which will hopefully be Nova University again) and when that happens, things will start to roll...Jim, I think you asked about UM...yes, he can stay up and watch as long as it doesn't interfere with a Bills game!!.....Payton is good...he is already asleep! He usually falls asleep between 12-2 if we are lucky and tonight he fell asleep fine. We had a very busy weekend but tonight we took Payton around our entire neighborhood looking at lights, and fortunately for us, our neighbors really get INTO it!! So Payton loved it-( he REALLY loves lights) and Rob,my dad and mom and I enjoyed watching him have a little fun!!...Roz, I never got the phone# for Novartis.Did you get it? If not, call me and I'll get it from one of Robs' invoices....Well, it is time for bed...
Love to all! Debbie P.S. I love you my sweet Payton and my sweet Robert too;-)
I forgot! I also wanted to send out a huge Happy Birthday to Jenn H!!! Thank you for being such a great friend and so good to Payton!! We love you! Rob, Deb and Payton
Rob & Debbie, Thank you so much for allowing me to help out and see Payton. He is such a doll and I always feel all the love in your home. You are very special people.
Denise, Speech Therapist
To Payton, Debbie & Rob,
I'm a friend of Amy's in Limerick, Ireland and I want to say that your story, filled with so much courage and bravery, reached deep within me and will be a source of inspiration forever more. I think you guys are leading the most extraordinary life filled with more love than most of us can imagine.
If there is anything I can ever do for you on this side of the Atlantic just e-mail me. Don't hesitate, not even once, as I can imagine no nobler cause than to help the wondrous Payton.
I look forward to hearing more about your amazing family and seeing some more photos.
Best wishes, Naoise.
Great pictures! Best wishes for the holidays, John (Amy's ex-teacher, FAU) Amy had mentioned making contributions for sma research, yes? Let us know if we can help.
Hi Payton, Mommy, & Daddy,
I love your website. I really enjoyed all the adorable pictures. What a handsome boy!!!! I will check back often for new pics. Mommy did a great job with this site.
Love you all, Reea
To Payton's family... My name is Julia, and my best friend Jennifer Haws emailed your site to me. I found your story to be amazing, and I truly admire all that you are doing. I'm a first year medical student, and I'm horrified at the experiences you have had in the past with different physicians... but not entirely surprised. Many of the doctors I have worked with have been caring, wonderful people; but unfortunately many others were not. My desire to become a physician is based purely on wanting to help people like Payton and yourselves, and reading his story has reminded me why I decided to come to medical school in the first place. We medical students need to be reminded that there is so much more to healing than studying textbooks, and I plan on emailing your website to my entire class, so that maybe your story will affect them the way it has affected me. Thank you so much, and God bless.
Reading your story makes me sorry to admit that not all doctors are created equal. As a medical student, I hope that I never become as jaded as some of your doctors were. Congratulations on Payton's success!
Best wishes, David
Hello everyone! How exciting to see future docs on Paytons' website!! Please know that while we have had some horrible experiences, the docs and nurses that DO care make up for the ones that don't, over and over again. ALL of Paytons' nurses now, are WONDERFUL, and Paytons' pediatrician, Dr. Leon and his asst. Lynn are on Paytons side and help us out all the time. Payton goes to see a pulmonologist in Palm Beach (the one that is 5 minutes from our home told me that he "didn't want to get in the middle of a 3-ring love triangle" (whatever that means) over Paytons hosp. bed in the PICU, while he was hooked up and intubated in January, because he found out from the intensivist there that I had gotten some advice from another pulmonologist) named Dr. Sallent, that is so good that he has just about every sma baby and child in Fla. traveling to see him. I had forgotten about the pulmonologist here until I started writing this. I think that with any job, you get burnt out people and people that don't care. Fortunately, not ALL docs are like this, no matter how long in the field....Thank goodness for the internet though...the intensivist that we had made a point to tell me and Rob in his "the buck stops here" voice NOT to get on the internet, and that it was filled with "quacks!" Well, if I had listened to him, Payton would never have made it this long. Unfortunately, I think that was the whole idea. I know he felt that he was doing what was "best" for Payton and probably had decent intentions, but Payton is not suffering...he is not in any pain...he is not neurologically impaired in the least, instead I'm told that sma children are usually of above average intelligence...he's happy.. and so are we that we have the time we have with him...it would have been alot more painful to lose him before we had to, just because we didn't have the information that the "quack" filled internet gave us...Anyway, sorry for rambling, but if you know me...you know that there is no other way!!LOL Thanks for visiting everyone! Payton sends his love and says goodnight!!!!!!!!!!!!!
I'm Julia Bracewell's classmate (USF Medical School). I'm sorry to hear you had such bad experiences with doctors. I'm glad to hear Susan is great (I'm a PT graduate from FIU myself). Above all, I'm glad that you took the time to share your story so that others don't take forgranted what they have. You're wonderful parents and I will definetily keep Payton in my prayers. God Bless!
I keep forgetting!! There is a huge rollerblading event in south beach from Feb.8-Feb.10 and all the money raised goes to FSMA. This event lasts all weekend with tons of fun and prizes and skating! They are raising this money on behalf of Ryan Nolan and we support this event 100% !!!Ryan and Jamie are getting married on February 8th, so we will not be there Friday but we will be there all day Saturday. They have a HUGE police escort from Miami to Key biscayne. If anyone is interested, the web address is www.skate-events.com. If you have any questions please ask me and if you would like to volunteer or know anyone that would, let me know! Thanks alot! We love you all! Rob, Deb and Payton
I am a medical student and I am horrified at how you were treated by healthcare professionals. Payton is a beautiful child and he certainly deserves the best of care. I hope that something miraculous happens for you and for Payton.
Hi Payton! Your G-ma Roz called me the other day and told me all about this site. It is amazing-I learned so much about SMA. You are a beautiful boy. Mommy, Daddy and You are always in my thoughts and prayers. I am going to send the site to your aunt Darlene. Take care sweet boy love, Aunt Diane
hi payton, hope your having a great night......wanted to say i love you and soon i will see you.....deb, i got the # , thanks. did you mail the video? i love your daddy and mommy too payton, you are a very lucky little boy as they love you more than life itsself..........you are life, we are so close...hang on little bud! g-ma roz
Hi Payton, I'm at work and I was thinking about you so I just want to say hi and have a good day and I will see you later. We'll play a little and maybe watch a movie, okay? Love you lots, Grandma
Hey there little guy,
Sure am gald that I can keep in touch with you this way. I would never want you to think I forgot about you. I just wanted to say Hello and let you know I love you very much. Be strong.
Love, Aunt Holli
Hello out there!! Payton slept so GREAT last night! He is sleeping so great lately! I'm very happy about this. Yesterday morning, I woke up to the pulse ox beeping and when I went in Paytons' room his sats were VERY low, lower than I had seen them. I checked the bi-pap hose first, it was hooked up fine. Then I immediately brought him downstairs and started to in-exsufflate (make him cough and clear his airway). He was cleared almost immediately and was fine after that... This is not uncommon, Payton getting a mucus plug that he can't push out himself. But it is uncommon for him to get one while he is on the bi-pap that makes him desat and start to turn gray. He was pushing a bowel movement at the same time so I thought maybe the combination of pushing plus the plug made it impossible for him to recover if he lost his breath....But for those of you that are sma parents, we had forgotten to make him cough the night before (Payton coughs 3x a day-once in the morning, once in the afternoon, once before he goes to bed--by once, I mean the whole round of coughing that we do with him),so the lesson learned here is to never forget the coughing!! It is soooooooooo important to cough!!!!!! I know that it was a combination of a couple of things, but to see him desat while ON the bi-pap was something I'd never seen, and do NOT want to see again! Roz, I thought that Rob sent the video??? If not, I'll make sure it goes out!!!!! Payton is going to see Ryan this weekend at the Nolans' Christmas party. Ryan told Regina that he will make ALL the kids that come over, CRY, except for Payton. He likes Payton!!aawwwwwwwwwww Anyway, take care everyone and have a great day!
Dear Freeman Family, I must say I am so glad that there are people like you in the world who will fight for someone they love no matter what the odds. You are an inspiration to everyone who knows of you story. I know you have inspired me to become a better doctor so my patients do not have to deal with the treatment you received. Again, that you for following your hearts and showing the rest of us that anything is possible. You are all in my prayers. Sincerely, Amy Johnson
Hello Freeman's, (ESPECIALLY Payton) I wanted to say a quick hello and tell you that I am ALWAYS thinking about ALL OF YOU. Debbie Deb, your comments are my absolute favorite, b/c they keep me up-to-date with everything that is going on!! It's just like talking to you on the phone, minus all the call-waiting's we must endure! Ha Ha :-) Anyway, many hugs & kisses!! XOXO Marn
My prayers are with you and your family. Happy Holidays!
Hi Freemans! Just wanted to tell Payton that I love his website...he is like a famous person now! I also want to wish you all the best during the holidays and always. I hope that 2002 is filled with only things that make you happy. You are all always on my mind and in my heart. I love you. XOXOXOX -Renay
Hi Payton..we just wanted to say that we think about you everyday and we love you sooooo much. We are so glad your parents love you so much and we know they would move the earth for you!!! Hi Rob and Debbie, you guys are doing such a great job on this site!!! We are proud of you both for being so strong...we will support you guys in everyway we can!! Ryan and I love you guys from the bottom of our hearts and we are so lucky to be apart of YOUR family!!! We love you!!! Hi Debbie and Bob! Ps..Trinity say's Hi and she misses Grunt and Gage soooooooooo much!!!!!!!!!!! <3 <3 <3
Glad your son is still with us! I am Brooke Binning's grandmother. She will be 4 in June 2002. she is not on g-tube, or anything else. But has been sick often the first 2 years of her life. You can read her story under SMA kids. she is very thin but still eats by mouth, laying flat on her back! As the doctors told you, they told us - guess what 3 1/2 is a long time when you are told she won't make it a year! May God bless you. Pam
Hi Payton, I'm Renay Green's Aunt Mich. She talks about you, Mommy & Daddy since the day you were born. She couldn't love you anymore if you were her own flesh and blood. I'm so happy that she sent me your website so I could see what you're really like... AND you're everything she said you are and more. I wish you and your whole family a HEALTHY AND HAPPY NEW YEAR. Love, Mich
Payton, I miss you! I look forward to seeing you very soon! Love you tons, XOXO, Jennifer
Dear Payton, Rob, & Debbie
Tammy gave me the web site address and I read your story. I was totally unaware of what those awful people in the hospital did. I can hardly believe it,with such a beautiful child and I guess they don't realize that you are at your lowest point in your life, and need strength and encourgement.. I think you are the bravest people I know. Tammy is close to Rob, because she works for him, and she see's the toll it has on him, I can't imagine how they do it, but keep up the good work. I have known Rob for years , he has been very good to my daughter Tammy, giving her a job after she was divorced and had to go back to work and put her son in day care. Thank You Rob.... I pray for a cure. Take care Rob , Debbie,&Payton, and if there is anything we can do just let us know. I love the Buzz Lightyear Payton is lucky to have such great parents. Merry Christmas....Diane and Tammy
Hello,Hello,Hello! Thankyou soooooooo much for all the nice comments everyone! It sure is nice!! A friend of ours was watching us with Payton once and after seeing the bi-pap and how much we actually have to use it,etc..., they asked,"do you ever just want to give up?" And we looked at each other, with that quizzical look, and said "no, never." We may get frustrated, angry with disease, upset, but anyone who has a child would understand that they are your #1 priority in life and if he isn't happy or o.k. then we aren't. I don't think anyone realizes when preparing to have children, just overwhelming it is, but it's the truth...and WHATEVER they need, they get... We are taking Payton to see the lights again at Tradewinds tonight! He loves this, so we try to go as much as we can! Also, through the help of speech therapy and our 2 wonderful therapists, Eileen and Denise, Payton is actually starting to lift the corners of his mouth when he tries to smile!!!!! This is very exciting and daddy spends plenty of time getting him to do it! Well, take care everyone and thanks for reading!!!!!
Dear Debbie,Payton,Rob,and Freeman family, Just wanted to tell you how touching your story was. Debbie, you are always so loving, caring, and concerned for everyone at work, I never really imagined what a full plate you had outside of work. It sounds like you have a very supportive, and caring husband - that really makes a difference. I don't understand all of the things that this cruel world has to offer, especially to many innocent children - it seems as though they really never have a chance - although for many of them this is all they know, and with all the love they receive, they are happier than anyone of us that take so many things for granted. I do know one thing though, and it is that God promised two things-1) He would not always deliver us from pain, but he would walk the tough walk ahead of us. He knew Payton before he was born, he knows Payton's future, and he has a purpose and a meaning for his life. He has made your family seem very strong, and you value every moment you all have - that is very important and so many of us forget to tell the ones we love just how important they really are, although I don't believe that you ever had this difficulty. This is just your nature. God never gives someone a situation that he doesn't have the grace to cover it with. He knows you and Rob are a very strong team, I believe that is why he chose you. He knows you are filled with so much love and you are not a quitter! He needs someone strong to help find a cure for all of the other individuals suffering out there! 2) He promised that what ever you ask of him, if you believe with a pure heart that he can answer and provide he will - he holds nothing back. He works miracles every day, and has worked many for me, someday when we have time I will tell you! But I do want to let you know that I will be praying, and many others will be I see as well, for a miracle for your angel Payton, and I do believe he will answer - he always has! It has been a blessing to have met you and make you a very special part of my life, and anything I can do to help, please let me know. I would love to help with any fundraisers. Look forward to seeing you next time at work (I'll try my hardest to be on time!)ha,ha. God Bless! All my love always, Cassandra xoxoxo P.S. What a beautiful baby you have been blessed with. He picked up on all of the best features of you and Rob. What a hunk he is going to be!
hi little bud, sure hope you night went well, did you enjoy the lights? i love the lights too, they are so pretty......hey my handsome boy i want to tell you i love you and your mommy and daddy also.....have a good day!!!! g-ma roz and bill p.s.tell daddy cookies will be on the way soon....
Hi out there! Well, we didn't get to see the lights last night..Payton slept through our window of opportunity! But we will go next week, and I think grandma and grandpa may come too! Payton has become a veggie tales addict! I think he likes it more than, dare I say, TOY STORY!! Maybe he is just taking a break from Toy Story! I imagine even the obsessed Toy Story fan needs a break from Woody and Buzz once in a while! Payton tries sooooooooo hard to talk to us, I am really hoping that we can get "uh-huh" and "uh-uh" soon! I know that Ryan talks, but I am not sure when he actually started communicating words. Well, tonight is Ryans' x-mas party, we are looking forward to seeing the Nolans! I think that Ryan loves to see Payton because he is just like him! He sort of wants to look out for him! How cute! It is great to hear from you Cassandra, Brooke, Jenn H., Jackie, and my friends from Outback! I have been there so long, that people of Outback are like a second family to me and have been for a long time. And when things started to get tough for me, every single Outbacker has been there for me when I needed...How many people can say that about their job? Their peers at work? Their employer????? Well, I am very proud to say that I can! I love the Outback, the way it is run, the people that run it, and their employees and they have shown to me and my family that they DO care about their employees, unlike alot of other companies, I'm sure... Love to you all!
hey guys, well payton,i'm sorry to report that the dolphins lost today=( don't worry we'll get em'next week right. well just wanted to check in an see how your seekend was. tell mommy i'll be seeing her on wednesday if she's keying, tell daddy i said hi too. i also look forward to our "movie date" some time very soon. love you bunches xoxoxo jax
hi there little bud its your pesty g-ma roz.....just wanted to see if you had a good time at the party and how the lights were...i love you.... good night sleep tight..........love you too rob and deb..............
Hello!!!!!The site is back up! Yeaaa! I got so used to writing every day that I felt a void for those few days! Well, the party at the Nolans was great! We had a great time and Payton did too! He watched his veggie tales and was bright eyed most of the night. He got a little stressed when the noise level got too high, but destressed with the veggie tales. Ryan was so cute in his little ralph lauren outfit. He looked just like his dad.:-) We had 2 pt appt.s this weekend and Payton did great. He gets a little upset when his feet and legs are stretched out because they are getting tight, but we know it is good for him and try to do it often now. He fell asleep today on his belly and he looked so cute...in his dolphin shirt. Usually when he wears it, they win, so I'm not sure what to do now!:-) Sorry Grandpa. Anyway, hope everyone is doing well!!!!!!!!Love from the Freemans!
HELLO!! I am soooo glad that the site is up again! Deb, I missed "talking" to you & "hearing" all about Payton! Anyway, glad to hear that Ryan's party was fun. Will speak to you soon... Kisses to you all XOXO Love, Marni
DEAR PAYTON,
PLEASE TELL YOUR PARENTS THANK YOU FOR THE INVITATION TO VIEW YOU SITE, IT IS AMAZING AND SO ARE YOUR PARENTS. (WHAT A GREAT WAY TO COMMUNICATE AND KEEP EVERYONE UPDATED)I AM SO GLAD THAT YOU ARE SURROUNDED WITH SO MUCH LOVE AND SUPPORT!!
IT WAS GREAT TO SEE YOUR PICTURES, I CAN'T BELEIVE HOW BIG YOU ARE GETTING! I AM SO GLAD THAT YOU HAVE NOT HAD TO FREQUENT THE HOSPITAL LATELY, KEEP UP THE GOOD WORK (trooper)!
WELL I MUST GO, I HOPE SANTA BRINGS YOU LOTS OF GOODIES AND MAY THE NEW YEAR BRING A CURE TO SAVE YOUR PRECIOUS LIFE.
HAPPY HOLIDAYS! LORI, JIMMY AND HAYDEN JAMES
ROB,DEB,AND PAYTON,
THIS IS PRETTY AMAZING! I LOVE THE TOY STORY THEME. TAYLOR AND I JUST GOT BACK FROM DISNEY OVER THE WEEKEND, AND AFTER SEEING THIS WEBSITE, I KNOW YOUR GOING TO LOVE YOUR PRESENT! I WOULD LOVE TO HELP WITH THE EVENT AGAIN, JUST LET ME KNOW WHAT YOU WANT ME TO DO. IM GLAD PAYTON GOT OVER HIS POOPY PROBLEM.THAT CAN BE A REAL NIGHTMARE. I WANT YOU GUYS TO KNOW THAT I WILL ALWAYS BE HERE FOR YOU -NO MATTER WHAT. WELL TAKE CARE, I LOVE YOU GUYS, AND HAVE A GOOD NIGHT!
LOVE ALWAYS, MARY TAY-TAY, & PEDER
Hi Payton,
I am a friend of your aunt, Jamie. You are a beautiful little boy!!! I wish you & your parents the best.
Love, Ana
Hello out there! We have been really busy with the holidays, so I haven't been able to write in a couple of days! I'm sure you all know how it feels!! We finally got our tree up, and I must say that we are so thrilled with it. Out of convenience, we bought our first fake tree(pre-lit!) and it is awesome! The lights are better than anything I could have done, all strategically placed. The branches are all perfectly spaced and it LOOKS real. Rob set it up in about 6 minutes and I added the ornaments and that was it. AND we can use it NEXT year! For those of you that love the real ones, I admit that it doesn't have the x-mas tree smell, but that is the only thing lacking!!!!!!!!!!! Anyway, Payton had a great day. Speech has been progressing really well. Payton is choosing his toys now with eye-gaze and is talking up a storm! He has SO much to say (wonder where he gets that from!) and we can't wait to be able to understand it ALL!
I want to share something with all of you...We went to UofM on Monday to get our carrier test results...me, Rob, Robs' brother (Ryan) and my mother. For those of you who don't know, if you have one parent that is a carrier, than you have a 50/50 chance of being a carrier. Those were Ryans odds. We knew that with me being a carrier, that at least one of my parents was a carrier, so my mom was tested first....We were not surprised to find out that Rob and I both showed the necessary gene deletion to be a carrier of sma...However, we did not expect to find out that my mom and Ryan are BOTH carriers of the gene deletion for sma. The reason that I am sharing this with you, is so that you better understand that Payton is NOT an isolated case. 1 in 40 PEOPLE ARE CARRIERS OF THIS DISEASE. If you have a baby with someone that is a carrier,you have a 1 in 4 chance of having an unaffected child. You have a 2 in 4 chance of having a carrier, and you have a 1 in 4 chance of having an affected child, like Payton! I want the world to know just how often this happens!!!!!I shared this because I want to raise awareness levels, but my main reason is to let our FAMILY know that this is a reality, and that they need to be tested if they ever plan on having children, or if their children ever plan on having children, etc...10 years ago, Payton could have had sma and there would have been no way to test for carriers or even diagnose sma with a blood test. TODAY THEY CAN. Take advantage of technology, and please, out of respect for us and for Payton, get tested, and do not let this happen to another baby in our family again. Thankyou We love you all...........
I just remembered this morning...My brother and his wife found out that they were having a baby just a few weeks after Payton was diagnosed in late '2000. Bob was tested right away and his results came back positive. He too is a CARRIER of sma. FOrtunately, his wifes' test came back negative....But Briannah may be a carrier and one day she too will be tested to protect her children, and her childrens' children, etc...
Hello Freeman Family! I want you to know that I am SINCERELY GRATEFUL to learn JUST how important it is to get tested for the carrier gene PRIOR to having children. If it had not been for you (Payton) I would never have known what SMA is or to ever get tested. I am sure that many people are much more aware now & will get tested. I love you & think about you EVERYDAY! Deb, I will see you tomorrow. Tell Payton I am looking forward to seeing him! :-) LYB, Marn
HEY PAYTON, JUST WANTED TO SAY HI AND SEE IF YOU LIKED YOUR X-MAS PRESENT.YOUR MOMMY WILL BE BRINGING IT TO YOU TONIGHT.I CAN ONLY WRITE REAL QUICK--IM GOING TO THE BRITNEY SPEARS CONCERT TONIGHT.IF YOUR NOT SURE WHO SHE IS,ILL BRING OVER THE DVD AND YOU CAN LET ME KNOW WHAT YOU THINK?WELL IM HAPPY YOUR GABBING LIKE YOUR MOMMY,HAVE A GOOD NIGHT,& I LOVE YA GUYS! MARY
HEY PAYTON, JUST WANTED TO SAY HI AND SEE IF YOU LIKED YOUR X-MAS PRESENT.YOUR MOMMY WILL BE BRINGING IT TO YOU TONIGHT.I CAN ONLY WRITE REAL QUICK--IM GOING TO THE BRITNEY SPEARS CONCERT TONIGHT.IF YOUR NOT SURE WHO SHE IS,ILL BRING OVER THE DVD AND YOU CAN LET ME KNOW WHAT YOU THINK?WELL IM HAPPY YOUR GABBING LIKE YOUR MOMMY,HAVE A GOOD NIGHT,& I LOVE YA GUYS! MARY
I hope the Britney concert was good! Ya know that Marni was going too! Maybe you will see each other there! Ha! It is late and I just got home from work a little while ago. Outback is soooooo busy! GC sales are crazy!!
Payton was 1/2 asleep when I got home but feeling much better than when I went to work! His belly was soooo bloated from gas. Poor baby! It makes it so difficult for him, because he uses his belly to breathe! But he is asleep now and he looks like a perfect little angel, which he is.:-)
I will soon start selling the sma benefit rose pins. If anyone is interested, just let me know and I will send you one. They are $10. Also, if anyone wants to volunteer at the "Great Eskate" in Miami, the # to call is 954-262-1270 and ask for Marianne. She is in charge of the details. THe event runs from Thurs. to Sun. We will only be there on Sat. (Ryan and Jamie will be married on Fri. :-) ) but if anyone wants to come with us, just let me know. Payton will not be coming, but hopefully he will be at our dinner benefit!!Hugs to everyone..
I'm sorry...I made it sound like the event is THIS weekend! IT IS NOT. The "Great Eskate" runs from Feb. 8th to Feb. 10th! Thanks for all of your help!!
Also, Rob said that I was confusing when talking about passing the carrier gene, so let me try again...
1 in 40 people are carriers...
If you are a carrier, and you have a baby with another carrier, these are your odds..
1 in 4 chance of having a completely unaffected (by sma) child 2 in 4 chance of having a carrier(like Rob and I) 1 in 4 chance of having an affected child (like Payton)
If you are a carrier, and you have a baby with another carrier...
2 in 4 chance of having an unaffected child 2 in 4 chance of having a carrier.
More info later..........:-)
I know that this is INCONCEIVABLE, but I screwed up AGAIN!!!!!!!!!!!!
The odds that read:
2 in 4 unaffected child
2 in 4 carrier
are when a CARRIER has a baby with someone that is NOT a CARRIER!
The rest was correct, believe it or not...I am very tired, I must go to sleep now:-)
HI PAYTON,DEBBIE AND ROB THANKYOU FOR LETTING ME VISIT YOUR WEB SIGHT. I HAVE ENJOYED READING YOUR STORY AND LOVE THE PICTURES. I KEEP A PICTURE IN MY DRAW AT WORK. I LOOK FORWARD TO MEETING YOU IN PERSON PAYTON HOPEFULLY TOMARROW. :) LUV CINDI W/ FIRSTAT NURSING
Another crazy day! It seems impossible to catch up sometimes. I am just going to have to stay up later and later!:-)
I have a lot of people ask "how do you do it?" and "how do you stay positive?" My doctor told me that I seem very unstressed for my situation....I would like to share my secret....It is my mother. I know that mothers never get the credit they deserve, so in the spirit of the holidays and me wanting to thank her in a bigger way, I would like to share with you, just HOW MUCH she really helps....My mother comes over my house EVERYDAY after work. EVERYDAY. I go do any errands I have or go for a jog or clean the house, whatever I need to do and she tends to Payton during this time. This is for at least an hour, usually longer as there are many times that Rob and I have to go do something or we need to shop or whatever. Then she stays here on the weekend to babysit while we work, and if we want to get out on a weekend night for dinner or a movie, she watches Payton...You must understand that watching Payton is not your typical babysitting job.........No No No......This is something that only an experienced nurse would tackle. Those of you that have spent time with us, know that we don't let anyone watch Payton except my mother. We are very lucky to have her and so is Payton. She does not get frustrated or irritated with him. She plays with him like a grand mother and takes care of him like a nurse!!If it was not for my mother, I would probably feel trapped in my home, and I am sure that that frustration would get taken out on Rob. She prevents us from having THAT problem. So, I want to say, and I speak for Rob too, that I love my mom and I don't know how she does it or how she stays positive, but she does and I guess that's just what moms do! We love you! Payton, Rob and your favorite (just kidding!) Debbie :-) Goodnight to all!!!!!!!!!!!!
at times life is wicked and i just cant see the light,a silver lining sometimes isn't enough to make some wrongs seem right. whatever life brings, i've seen everything,and now i'm on my knees again. but i know i must go on, although i hurt i must be strong, because inside i know that many feel this way. children dont stop dancing,believe you can fly away...away.at times life's unfair and you know its plain to see. hey god i know im just a dot in this world have you forgot about me? whatever life brings, i've been through everything and know im on my knees again. but i know i must go on, although i hurt i must be strong because inside i know that many feel this way. am i hiding in the shadows? forget the pain and forget the sorrows. but i know i must go on although i hurt i must be strong because inside i know that many feel this way. children dont stop dancing, believe you can fly, away...away.am i hiding in the shadows? are we hiding in the shadows? HAPPY HOLIDAYS EVERYONE. Payton daddy loves you so much. how much? too much and all the much in the world! Deb i love you very much as well and your ( our ) mom and dad.
Payton, Hey little buddy, hope you're doing good. Getting excited for Santa's visit soon I'm sure. I was at Disney last weekend and I spoke to Woody and Buzz. They asked me to say Hello and wish you well. They also asked me to give you a big hug so when you read this tell mommy to give it to you. Well I like your website and I'm looking forward to your next big shindig. It just so happens that I bought a signed Hurricane football last year and you brought them a whole lot of good carma. I may have to buy a ball every year just to keep the good luck you bring up. Alright bud you go have a good christmas and lets get into the new year. Take care give your Mom and Dad some love from Taylor, Mary and Me. See you soon. Peder
Hello there Debbie, Rob & Payton.It's taken me a while to muster up the courage to visit your website.I've seen pictures of Payton in the office at Outback but just the other day Debbie showed me some recent photos & I listened to her speak about Payton & Sma (in her calm & so matter of factly sort of way) & working w/Debbie & honestly feeling that she was a friend I found that I needed to find out about Payton & Sma so I signed onto the site. And have actually been on it about 4 times today reading & trying to understand more & well here I am again.I cried & my heart actually ached. I can't even begin to imagine this in my life - I don't know if I would be strong enough. Debbie you are absolutely amazing. I had no idea of the "Double Life" you lead. You're always so upbeat,caring & so put together....I now look at you in a different light...not just as a friend & co-worker but w/admiration & TOTAL respect. Payton is one very lucky little guy to have such a wonderful mother(& father too from the entries I've read in your journals). I spent hours today looking on the web to find out even more about Sma, I spoke w/my two daughters about Payton & showed them his pictures. I can't seem to get this out of my head & couldn't wait to come home from daily errands to look some more. I am more than willing to help out w/your benefits..please just let me know the details.Debbie if you could please let me know the exact name of that Hi-Low chair the insurance company wouldn't approve.I feel that one way or another we will get that for Payton (pardon my french but...) "Screw The Insurance Company"... Have a wonderful Christmas and may this New Year bring you nothing but what you deserve...THE VERY BEST!!! My thoughts are w/you Luv, Shan xoxo
Hi Payton, Debbie and Rob,
Payton you are definitly the cutest! You have two really amazing parents. You hang in there, and keep fighting. You are a very strong little man. I know how those doc's can be. I was in the hospital every two weeks for three years for chemotherapy treatments and some of the nurses and docs do not know how scary hospitals and doctors offices can be for kids, Especially when there is needles involved. Just hang in there. See you at work Debbie! You will always be in my heart and in my prayers.
Love always Jen xoxoxox PS email me anytime :p
Such a busy day!!!!!!!!! First, I want to say HAPPY BIRTHDAY to my favorite mother-in-law!! I am sorry that we could not spend it with you but I am sure Bill took you out for a special night!!You are a wonderful mother-in-law and mother and grandmother and we miss you!!!!!!!
Mary, I can't go on enough about the "monsters" disney blanket. You are always so generous and you are such a good gift-giver!! Your gifts are always so personal and thoughtful! Oh, and I love the Disney frame-you are so great to always be thinking of Payton whereever you are:-) Hope Taylor likes her clothes! I will see you at our key meeting-Hi Pedder!!
Cindy, thankyou so much for the gifts...we will open them on Christmas!And thankyou for visiting us and Payton! It was great to finally meet you!
Marni, Thankyou for "the Tape" You are the ABSOLUTE best! Payton said your visit went well, but that your little red device kept ringing??? What could that be??JK We love you...
Shannon, I would love to say that my demeanor at work was this well thought strategic thing, but it really isn't...I have NEVER brought my personal stuff to work EVER, I know you are the same. Work is work and that's it. I am lucky because while I am AT work, Payton is with my mom and I trust her with him so I don't worry...Not to mention, it is a good distraction and gets me OUT OF THE HOUSE!! If I could, I'd work a lot more but I really can't...I am lucky that I can work the days that I do....I really appreciate the nice comments though... It makes me feel good when people care and care enough to look into the disease and go that extra mile...There is so much crap in this world and we all have problems, so I never expected people to react like they have. SOOOOOOOOO many people REALLY care, really care about Payton, for real, and they want to help, not just donate, but give of their time and volunteer and there is nothing more valuable than that. So I want you to know, ALL of you, that someday, in some other life...we owe you BIG!:-) Love to you all! The Freemans
P.S. Also, about the hi-low chair--I am actually in the middle of a fight with the insurance co. to get it. If I get denied again, I will definitely let you know, but I know that somehow he will get that chair!!!!!!!! Thanks for writing everyone! You too Jen!
Speaking of work, I just want to say a quick thankyou to people like Shannon and Mary and Jenn and the Kellys and Lori-my boss and Kirsten etc etc etc etc for always treating me normal and not like the "sick babys mom." You guys are all very real and honest and when you want to know something you ask and it is never a big production or anything. I appreciate it more than you can imagine, because as much as we know this not the norm, we try not to be isolated from our friends and work and just the world, ya know???Thanks!!!!!!
Debbie, I will call you this weekend; Christmas eve is Monday and I want to give Payton his presents early since the holidays are so hectic! I hope he likes what I got him and that no one else bought it for him yet! I also have something for Payton, you and Rob. I know you all will be busy too this next week but I'd like to come by and see you all! Also, I'd love to see the wedding video! Your Mom is amazing; I'm so glad you have her to help you out! Also Deb, I would love to help out with the rollerblading (Eskate) event in Miami in February, probably on Saturday. Count me in for any fundraising activities to help raise money for SMA research. Payton, you are the cutest, you get more handsome every day! I love showing your pictures to everyone! Deb, also thank you for being such a great friend! I love you all bunches! XOXO, Jennifer
Payton, Do you have " How th Grinch stole Christmas" on DVD? I wanted to get it for you but I wasn't sure if you had it yet?! It is on of my favorites along with Shrek. Maybe we can watch it together sometime! I love you so much, I think about you always! XOXO, Jennifer
Hey baby Payton, my favorite beautiful nephew in the world! I see your mommy is still very active and wonderful and spreading the word about you, and doing everything humanly and superhumanly possible for you and for other little babies with sma! I just want you to know that people in France, Ireland, and Romania (all far-far away places!) have all come to your site (even people from Arkansas have come! And THAT'S a VERY far-far away place!) and read about you, and all send you their love, whether they wrote in your journal or not. This makes you an international super-star, Payton-baby! You're hot property! You're wowin' 'em in twenty different time zones! I hope fame doesn't go to your head: many child stars fall prey to this glamour and glitz, but I know you're more down to earth than all that, and you've got such good parents to keep your feet on the ground. Remember that even though it's good to keep your eyes on the stars, it's best to keep your head out of the clouds. Love and Hugs and Kisses, your favorite aunt, Amy
Merry Christmas Payton. I love your pictures. You are my first and beautiful great-grandchild.
Debbie and Rob, Your parenting should go in textbooks. You're the best. Love, Mom-Mom
Hello hello! I have not written in a while, although, I do visit the site EVERY SINGLE DAY!! Sweet Payton-it was WONDERFUL seeing you last night-especially because your daddy was not around to give me a hard time(Ha ha JK ROB-you know I love you) Deb, call me I can't wait to hear what you thought!!! You looked so happy & content with Grandma! Well, I just wanted to say hello & tell you that I love you & am thinking of you...ALWAYS! LYB, Marni
Hi Payton: I got your Christmas card today and I was so happy to hear from you....and I love your picture - you have made the fridge once again. Please tell your mom that I know she is busy, but I miss her voice! I need to arrange a date with you, so tell her to give me a call. If I do not see you before Christmas I hope you have a very merry one! Smooches to mommy, daddy, grandma, Grunt & Gage. All my love, Renay
HI! I forgot to mention it last night, but Rob and I were in a car accident last night. We are both fine, we were pulling into a plaza and some guy that was "rubber-necking a bad accident on the highway, veered over into our lane and even though we beeped and came to a complete STOP, he didn't even hit the brakes and ran into us head-on. Fortunately we are o.k. but the car is banged up pretty good. I think Rob scared the guy at first, but then we felt bad, because he was arrested on the spot. Apparently, he had a suspended license and was on probation or something like that and he knew he was going, he said it right away...and we felt bad, but what do ya do? Tell him not to worry about it??? We just hated even having to deal with it. But, thank God, Payton was not in the car.....As I am sure some of you know, Payton CANNOT sit up AT ALL and they don't make a car seat for kids like him, so we restrain him in the strangest of ways, and try to keep car rides to a minimum (even though he loves them---it is just too dangerous--esp. with the wonderful drivers here in Fla.)
Hi Renay and Marni! Thankyou so much for the tape, Marn! We must talk soon....If you guys want to come by and see Payton on X-Mas eve you are more than welcome! Jenn H. is coming by and a few other friends and family!! If any of our friends or family are reading this, and you too would like to visit, please do! Just give me a buzz, and let me know you are coming...Payton needs to see his friends and loved ones this holiday season!
Hi Amy! I sure do miss you my sis! You need to get your butt down here to visit! I am sure that you are freezing it off anyway, so south Fla. must be an easy sell right now! We love you and say hi to Brian!
Hi MoM-MoM!!It is so nice to have you sign Paytons' journal! He is and always will be your #1 great-grandson! And of course, the best looking! I sent you an X-mas pic!
I actually sent an x-mas pic to everyone, so if you didn't get one please let me know, it was just an accident, cuz I really did want to send one to everyone.
Payton had a great day...Some days, like today, his skin looks great, and he doesn't have any bi-pap sores/cuts on his face/bridge of his nose, he isn't constipated, his sats are good, his heartrate is good, and we all look at him and say how great he looks ALL day....When HE feels good, WE feel good.:-)Goodnight.
I'm Rick Dillman's proud Dad.
Hey Payton, Deb and Rob - I'm so glad to hear that Payton has had a good couple of days!I think of you all often and hope that there are tons of good days ahead for you! I wanted to wish your family a Merry Christmas(a little early)and a very happy, healthy 2002! I miss you Deb, hope to see you at work soon! xoxo Brooke
Claudia is a mom and i feel close to Payton, It (the story) left us pretty much speechless. Especially for her. A lot of the the story I knew. But, reading it hit's home a little more. I often think of you guy's and how you stay so strong. God Bless Both of you and of course Payton.Love, Frank and Claudia
Hello holiday friends!!We are very excited to celebrate Christmas! My parents will be here to celebrate with us and I/WE will be cooking a turkey:-) We will miss the other Freemans/Witheys in Atlanta, but we know that there are only so many visits per year that we can squeeze out of you and after the 2 back to back weddings, we know we just have to wait!! But we will still be thinking of you guys and will talk to you at Holli's!We are celebrating Christmas Eve with Ryan and Jamie and we are very excited for Payton because he has lots of visitors coming by to see him tomorrow!!!! He loves to have visitors:-)
He had physical therapy today. As much as he HATES getting his legs and feet and hips stretched, he is actually getting used to it, so he is doing a little better with it. Thank goodness...It is hard to watch him go through ANY discomfort.
Jen B,if you don't work this Wed. try to give me a call or come visit. I want to ask you something and chat:-)
Jenn H., thankyou so much for volunteering to help at the "Great Eskate!" I think that is very low-key, maybe help with the raffle or something. THe roller bladers are there to skate and are very busy with the skate schedule, but I know that they need some help with the raffle and maybe selling shirts or something? I'll let you know more details when I know, and if you want you can go down there with Rob and I. I don't remember if I already said this, but Payton will not be able to go to the benefit in Miami, but as long as all goes well, he WILL be at the Outback benefit! Yea! Have a great night and a fabulous Christmas Eve everyone!!!!!!!!!!!
HEY DEBBIE....AT LEAST WE GOT TO SEE YOU FOR A MINUTE TODAY. MY GIRLS & I ARE VERY EXCITED TO COME BY TOMORROW & MEET PAYTON. THE GIRLS ARE TRYING TO DESIGN A "CAR SEAT" FOR HIM SO IT WILL BE SAFER FOR YOU TO TAKE HIM OUT ON A CAR RIDE. THEY'RE AMAZING & I WOULDN'T BE SURPRISED IF WE HAD A PATENT BEFORE LONG!!! GLAD TO HEAR PAYTON HAD A GOOD DAY....I'LL GIVE YOU A HOLLER IN THE A.M. HOPE YOUR NIGHT WAS PEACEFUL. XOX LUV, SHAN
Deb, I would love to go to the event with you and Rob. I also will help out with the outback event for Payton. I can't wait to see him later today! XOXO, love ya lots, Jennifer
Happy holidays to everyone! It's so nice to hear from you all. Your thoughts are so kind and supportive, it makes everything just a little easier to know you are all there. Deb and Rob appreciate it very much and so do I. Merry Christmas Payton, (and Deb, and Rob). I love you all very much and I'll see you soon. Love, Grandma
!!!!!!!!!!!!!!!MERRY CHRISTMAS!!!!!!!!!!!!!!!!!!!!!! I HOPE YUU GUYS HAVE AN EXCELLENT EVE.I WILL SEE YOU GUYS TOMORROW WHEN WE STOP BY AND TAYLOR WILL BE WEARING THIS AMAZING OUTFIT THAT SOME FABULOUS LIL' HOTTIE BOUGHT HER. TAYLOR IS VERY EXCITED TO COME MEET PAYTON AND PEDER TOO!I HAVE TO GO GET READY FOR WORK NOW,BUT I WANTED TO SAY HELLO SINCE ITS BEEN A FEW DAYS.TALK TO YA LATER LOVE---MARY
Debbie & Payton- Just wanted to send a note of thanx for letting us drop by & meet Payton. He's freakin' adorable....not the frail lil' guy that I had pictured. I appreciate your frankness & honest answers to our numerous questions & the girls are already asking when they can some back to visit - Kendal wants to know if it's okay to read him a book or twenty!!!! I personally am looking forward to getting to know both you & Payton a lot better....think we could be great friends. Hope you have a wonderful Christams Eve & a jolly Christmas Day....by the gifts under your tree I know Santa had to make a few stops at your place!!! HO!HO!HO! Luv, Shan,Dave,Deven & Kendal xoxo
Merry Christmas to all of you1
I hope you all have a merry x-mas! Debbie- i will come by and talk to you as usual. See ya wednesday! I heard santa got some good presents for you payton :)
Love jen
Hello out there my very generous Outback family!!!!!!!!I haven't stopped thinking about it ALL day, but I really just can't get over how generous and caring and giving my friends and family are....Ya know, since the beginning of Payton being sick, I went from bringing "decent" money into our 2 income household, to bringing in about $140 every 2 weeks. Our expenses with Payton are more than the average child and Rob takes it all on by working about 16 hours a day and he NEVER takes a day off. NEVER. He works every weekend and has since shortly after Payton was born....We have never asked for/taken a dime for help except from our parents(who have helped us VERY MUCH!)and we don't complain, this is just the way things are, and you get by and do the best you can. We pay our bills and I know that there are people out there that can't even do that, so we really don't complain. We DO however, ask the insurance company to PAY for things. That is the whole reason we HAVE insurance, and of course, it has always been a problem. They still won't pay for Paytons' formula--this time they say it's because sma ISN'T inherited! Well, we all know that is a joke, so when I proved that is IS inherited they told me, too late, you must now go through the appeals process. They purposely make it so difficult, with soooo much red tape, that you either give up or get the funds somewhere else. This INFURIATES me, as well as many other handicapped childrens parents, but it is something we have to deal with and it never ends---there is ALWAYS SOMETHING that we are FIGHTING for.....Now, I'm actually getting used to this, believe it or not, so when people offer to help, I always say no, let the insurance co. pay--even if this means Payton waits...LOTS of kids wait....Ryan Nolan JUST got his power chair approved and he has been asking since he was 2! He is now 4 1/2!!!!!!!This means that this kid, who could have gotten around ON HIS OWN in his power chair, has not been able to for 2 1/2 years because insurance would not pay.........So, when my friend Shannon,from Outback, came to my house today to visit Payton, she had a present for Payton....Payton and I opened it together and as we read the card I started to figure out that it was ALOT of MONEY... I didn't understand at first, but she explained to me that in about one afternoon, she and our Outback family and their family, raised ALL the money for the hi-low chair that we were denied for Payton ( it was considered a "luxury") and thensome(for us to buy Paytons formula, etc...whatever he needs!...) I was so blown away by this, that I didn't know WHAT to say....I do not normally cry, but I could not help it when I pictured all those people giving to help Payton...I am really OVERWHELMED by this act of generosity and care. I really CANNOT thank you enough Shannon, not just for raising all of that money, and making our Christmas awesome, but for being the kind of person and friend that EVERYONE wishes they had in their life. Your girls are so wonderful, they are welcome to come and see Payton ANY day, and of course, we love Dave too!!! Please tell everyone Merry Christmas and thankyou so much!!!I have definitely learned alot about people over the years, and just when you think you got them all figured out, they throw you for a loop... There is definitely more GOOD than BAD in this world, thank GOD! We love you and thank you ALL..Merry Christmas Love, Rob Deb and Payton:-)
I know I am long winded, but I forgot...thankyou to everyone that came to visit Payton today!!!Sandra and Dwayne, we love you guys and Baby is the cutest thing ever!!
Deven and Kendal,Payton loved meeting you and told me to tell you that you can come over ANYTIME, and read to him or play with him or whatever you want!! Just let me know! Ryan and Jamie, thankyou so much for coming and for all of the wonderful gifts!
Jenn H., thankyou for going through my photo session-haha and for Paytons gifts!! Maybe we could all go to the mall together after Christmas and get him the other book!
And Mary, Payton is really looking forward to seeing you tomorrow!!
I do not know who all gave to the fund for Paytons' chair, but I DO know how HARD you all work for your money and what you go through to earn it, so please know that I appreciate EVERY DOLLAR that you donated!!Love, Debbie:-)
hey freemans it's jax just wanted to say and wish everyone a very merry christmas i hope you enjoyed your day and also your SPECIAL surprise!!!!! hey payton, i got a note from santa he said he would leave you something here for christmas, i ll give to mary to pass on to you as soon as i get it ok. ok well i'm off to bed, i hope you have a wonderful day tomorrow i better see you before i go away on the 2nd. i'll miss you oh so much!!!!
all my love jackie
Payton, Gabe and I really enjoyed our visit with you today! I wish we could have stayed longer! I can't wait to see all the great presents that Santa has brought you! Merry Christmas! I hope everyone have a safe and happy holiday season and a great new year! Deb, I'll call you soon! Love you all! XOXO, Jennifer
Payton----Merry Christmas and Happy New Year!!! I know from the love you have in your family what am AWESOME dude you are--ain't never met you but I think we will ask Mom--we definitely have a date!!!! How about Dec.26? Love, Donna
Rob,Deb,& Payton, I have not been able to veiw this amazing web site before now because I don't own a computer(bo-ho) however, my mom does so I plan on logging on every time I down here. I just wanted to say that the three of you are the most amazing people I have ever met and that I admire you for your courage and strenght through these times. I love all the beautiful pictures of Payton and I can't wait to come visit him. Please let me know what I can do to help with the next benefit, whatever it is I'm yours... just let me know. Austin and I wish you a wonderful holiday and we love you alot. take care I hope to see you soon. Love always, Kelly and Austin
Merry Christmas, Payton!!!! Okay...you too, Deb & Rob. (ha ha) I am in NY & just wanted to let you know I am thinking about you-as usual! I hope Santa brought you GREAT presents, Payton! I love you ALL..... LYB, Marni
Merry Christmas everyone!!!! We had such a wonderful day!!Payton had lots of visitors and phone calls wishing him a Merry Christmas and he opened TONS of presents! I help him open them by holding his arm and we tear the presents together. I opened one without him and he freaked so I think he likes opening presents!! (Just like DADDY!!!) He received so many wonderful gifts,thankyou all soooooo much!!! He really did have fun and that is what it's all about. Watching kids on Christmas is soooo nice-they just get sooooo excited!!!!
We are very excited about the hi-low chair--it is sinking in that we are really getting it and Payton has physical therapy tomorrow (that is who we get alot of our equipment from) and we are so excited to tell her to just go ahead and order the chair! Payton lays flat ALWAYS (because he has to, to maintain a clear airway-otherwise mucus builds up very quickly and he will desat(stop breathing) and so he is kept flat) unless we are moving him up/downstairs or to the car...He has no mobility on his own and the hi-low will let him be mobile around the house and the yard, etc... he will be able to see the computer and get close to it, go outside with mommy and out by the dock to see the ducks, he will be able to watch me cook dinner (that is fun!!HEE HEE) and just be more interactive with us during the day. If you have ever been here, you know that Payton spends most of his day laying on the couch....I know it is terrible, but he will soon have some mobility thanks to our friends that love Payton soooo much! Good night everyone! Oh, and yes, Donna, you can visit anytime! Taylor and Mary and Peder were here today, but Payton was sleeping, so maybe you can ALL come tomorrow! Anyway, just let me know!!! And be prepared to pose!!!
Merry Christmas Payton, Deb, Rob... I'm so happy to hear that Payton is getting exactly what he needs for Christmas: the ability to move around and spend more time watching mommy burn water! ;-) I miss you guys! Lots of love to all and all and all! ----Amy
Hi Payton, it was very nice to meet you. You have such a little fighter here. Unfortunatley we lost our fight with SMA in March of 2000. My son is just above Payton, Jordon Pyke. I will pray for you. Be strong. Jennifer Pyke
Hello out there!!! What a crazy night at the Outback!!You would think people haven't been out to dinner in a week! We were on an hour wait most of the night!!
Anyway, I am VERY excited to let you all know that Paytons' hi-low chair has been ORDERED! And it will be here in 10 DAYS!!! How exciting is THAT????? I will be sure to put up pictures of him in it! Oh, and we had enough left over to purchase Paytons' formula for 4 MONTHS!! Believe it or not, people can be quite awesome and we are very thankful to those that care soooooooooo much about our little Payton!!
I hope everyone had as wonderful a holiday as we did!Goodnight:-)
I am sure that alot of you have read some of the other stories here on the oursmaangels.com board. When I first found out that something was wrong, I found this site, among others, and was so drawn to the stories, that I found myself reading for hours, and crying over the keyboard....As time goes on, I DO get used to taking care of Payton, I DO get used to doctors and insurance companies, I DO get used to everyday nursing and I DO get used to the fact that my son can't do ALOT of things, but I DO NOT get used to INNOCENT BABIES DYING. Please, read the stories, understand how serious this is, and help us find the CURE!!!!!!!!We Can Do It!!
Payton, i am so glad you had a very nice x-mas... most of all deb it is so great that he will get the chair..........that is sooooooo awesome..........thank you for writing all the nice stuff.... i love you deb, you are the best daughterinlaw anyone could have.... the peacemaker....the best mom and i hope my son appreciates you for being the BEST.........i love him too even if he is spoiled and a big baby... how is it to have 2 of them...talk to you soon.....
Hi Guys! Im glad you had a great X-mas, we enjoyed spending the time with you all! I am sooo glad your getting the High-Low Chair..I can't wait to see Payton in it!! You guys are the best parents anyone could ever ask for and Payton is so lucky to have such a loving family. Your mom is the best Grandmother to Payton..She's always there for you and that's a true family. Ryan and I love you guys sooo much! We can't wait to see Payton sporting his new chair!
hi payton, debbie and rob it was so great ot meet all of you finally, especially you payton. maybe next time you won't be sleeping and you can show me some of your favorite dvd's. i hope next time that i can spend more time with you also. how was your christmas ???? was santa good to you payton??? thank you so much for the thoughtful gift certificate. you really didn't have to... i will be talking to you all soon and i can't wait till i can come to visit with you again payton. much love, cindi
Hey there Payton! I am a friend of your Aunt Holli (and your cousin Ashley!) and she told me all about you! I just wanted to say hey and I hope you had a great Christmas! Take care bud! Your friend- Claire
hello everyone,we hope everyone had a great christmas just like we did.first i want to thank everyone who had a part in getting all the money together so our little boy can get his hi-lo chair,you guys are great thankyou,i would also like to thank bob & deb(my other mom and dad) they make every day a happy one i love you guys,thanks to all my friends old and new(thanks to this site) for always being there, i would like to thank ryan and jamie for spending christmas eve with us we love you too,and to payton as always i am so thankful for every look,every kiss,every day i have with you you are my #1 forever,daddy loves you,and i would like to thank my wife debbie,without you i am nothing i love you now and forever love rob
sorry,thanks also to amy(my other lil sis) you kick ass
Deb, Rob & Payton, I just wanted to tell you how happy I am about the hi-low chair! Those Outbacker's sure are amazing! Will speak to you soon-I Love you! LYB, Marn
Hi Deb, Rob, and Payton, I just wanted to say hello. Being a virgin to your site, I am very impressed and moved by my first visit. The pictures are great and "your story" is just emotional. After receiving your Christmas card with your picture and the website address,I just couldn't resist getting online right away. I will continue to check in here and I really hope to see you all soon! It has definitely been too long!!! I love you! LYB, Heather
Hello out there!!Well, it is after midnight and Payton is still fighting sleep! I can hear him yelling at Solange, I think he is angry because his portable dvd is broken and we are waiting to exchange it because the christmas rush wiped them out completely!! He got very used to watching it in bed until he falls asleep and he is not hiding the fact that he is not pleased about not having it! Hopefully, they will have them in tomorrow!!!Poor baby!
I must go, he'd rather have me right now, but I just want to thank EVERYONE for reading and signing on, we love to read everyones entries and thoughts! But most of all, thankyou for caring! Love, Deb
Oh, and Heather, you should get with Marni and Renay and come see us SOON!!LYB Deb
HEY DEBBIE! THIS IS SHERRY. YOU MET ME AT THE CORAL SPRINGS MALL A COUPLE OF TIMES WITH MY SON ZACHERIAH IN THE WHEELCHAIR
PLEASE CALL ME.
I THINK WE COULD BOTH BENEFIT EACH OTHER.
E-MAIL ME FOR MY NUMBER!
WE COULD TRADE OF ON HELPING EACH OTHER WITH THE BABIES.
WE DON'T KNOW MANY PEOPLE OUT HERE.
WE HAVE BEEN HERE A YEAR.
MARK IS TURNING 32 JANUARY 17
I AM 29
I DON'T KNOW IF YOU WORK
BUT CALL AND WE CAN FIGURE OUT WHAT TO DO.
SHERRY
Hello out there! I am going to try to get this family to bed early for once so I am writing very early for me! Payton had Physical Therapy today and did a great job! He doesn't love being there but he is such a trooper and always does his absolute best!! Thankyou Jen, Robin and Jeff for visiting Payton today! I heard Payton was a little scared of you Jeff, but don't worry it is not you, he is just scared of men for some reason. I think he thinks they are all doctors and he DOES NOT like doctors!! I am soon putting up new pics!! I have a ton, I just have to get them sent. Hi Sherry! Thankyou for writing! I sent you an e-mail and I will call you on Sunday! Your son, Zachariah, is the CUTEST thing ever! He seemed SO thrilled in the mall, happy and smiling BIG!
This morning, Solange (the nurse)called me into Paytons room, saying that he was "dropping again" This means that his sats are dropping. They generally go from about 95-100, when all is good and if they go below 92 we know there is a problem. His sats were 30 when I went into the room. Now the last time this happened his sats were even lower, it was the same nurse, and with the beeping and panic, I rushed him downstairs to clear his airway and give cpr if I had to. He never needed cpr because after I made him cough, he went right back up--and we just figured he had a BAD mucus plug. THis time I was less panicked because it had happened before and I knew I could probably take care of it....So when I went into Paytons' room I immediately noticed that the bi-pap was OFF!!!! I plugged it back in and he was fine. Imagine trying to breathe through a straw and being so weak, that is basically what he was doing. Our nurse, stepped on the plug through the night and the plug fell out. She figured that was what happened last time too and so did I. I am not mad, I am just fixing the problem and moving the wires out of the way.But for you sma parents, out there, our kids DO NOT just start desating on the bi-pap, either the plug is out or the hose popped off or something like that and be sure to check those things first! Payton is fine, but this same thing happened to my friend Regina while she was grocery shopping for about a 1/2 hour and the nurse called her on her cell phone and said "the baby is dropping and I don't know why!" Regina flew home doing about 100 miles an hour and got home about 5-8 minutes later. She walked in and the baby was turning blue, not breathing, and the hose for the bi-pap had popped out! He had the bi-pap strapped to his face the whole time almost, so it was like breathing through a straw for probably almost 10 MINUTES!!! Regina was so distraught(and so would I be) that even when she thinks about it today, she gets upset! Luckily for me, and for Payton, he was just in the next room.....This is an example of why handicapped kids parents have hard time leaving their children alone with anyone.Take care everyone and Goodnight!!!!!!!
Hi Guys!
I enjoyed visiting with payton today, he is sooo cute. Thanks so much for the picture i am keeping right by my computer so i will always see it. I am glad your chair is coming so soon and i am glad that my family and i helped make that possible for you payton. You really deserve it! Have a good night Love always, Jen xoxox
Payton,
This website has been hit 804 times!!! You are such a popular little guy! I hope Santa brought you everything that you wanted. I'm so glad that you are finally getting your hi-low chair. I know that mommy fights so hard to get you what you deserve- those damn insurance companies, they put up such a fight, and want you to give up- but thank God for those angels on Earth who care so, so much- you are finally going to get it! Debbie & Rob,I know that everyone tells you how great you guys are as parents, but I hope you really realize how special you are. You guys do so much for Payton every single day and you are so strong. You have made a huge impact on this disease. You have increased awareness to so many people, and have helped raise so much money to find a cure that is right around the corner. I am looking forward to our 2nd annual "So Many Angels" benefit in honor of Payton. With everybodies help, it is going to be another huge success! With all of us together, we really can make a difference in the world of SMA. Payton has touched so many lives, and is so lucky to have you as parents! I love you guys, and I hope you know that you can count on me if you need anything at all. XOXO Kelly
Hi there....I just have to say that I have "chills" after reading what Kelly just wrote in the journal. You could not have said it better, Kelly! I, too, am looking forward to the benefit-we will make it completely AMAZING! (Even better than last year-if that's even possible!) Payton, I miss you, sweet baby...I must come visit you VERY soon- my love to all! LYB, Me
Hello Hello...Well, today was another crazy sma day I guess. We took Payton to PT (me and my mom-Rob was at work) just like we always do on the weekend, and after PT we put Payton in the car and he looked like he needed a little help with air, so I plugged in the bi-pap and IT WOULD NOT TURN ON. I started to get nervous because his sats were dropping fairly quickly, he was at about 44 or so, and I realized I was not going to get the bi-pap to work. I brought him back in to Pt thinking it must be the plug, and when I plugged it in at PT it didn't work. Now it was just working 10 minutes prior cuz he had needed it while we were doing physical therapy, so I could not understand what the problem was, and he needed air! I was starting to freak a little and pretty much ready to throw the bi-pap into the wall and crush it into a million pieces but that wouldn't have done any good, so I started giving him some breaths. He was breathing but I needed to clear his airway of mucus and I didn't have an ambu bag, and no bipap. Susan, our PT asked if she should call 911, I said yes, there was no other option because I needed an ambu and they could bring it faster than I could go and get one. When they got there, Payton was not great but he was better, he had brought himself back up to around 90 just by forcing breaths, and by us positioning his head better. But the paramedics wanted to take him to the hospital. Now, if Payton does not have a dangerous temp or lung collapse or pneumonia, then we are NOT taking him to the hospital.We have been there before, and they TAKE OVER and he would most likely not be able to handle everything that would happen in the hospital. They would hook him up to EVERYTHING and he would get scared and desat and then they would want to trach him or something crazy and believe it or not, they DO NOT have a bi-pap at the hospital, nor do they have an in/exsufflator, etc...so they really can't do anything for me that I can't do at home. Actually I can do more at home, but I needed a bi-pap. In the middle of this chaos, and me trying to calm down Payton, this rookie paramedic( I would like to say that I have dealt with paramedics on many occasions and they have always been awesome, professional, kind, caring, efficient and quick.) was in my face the WHOLE time telling me why I should go to the hospital. At first, I was nice and said no, you don't really understand this disease and since he is breathing fine now, I don't really need you guys,but he obviously was NEW and felt challenged because I was telling him no, that he wouldn't let up. This upset me and upset Payton and he started crying and this put me over the edge. Fortunately, I knew the "head" guy from high school and told him to please tell this guy to shut up before I freak out and he did. And then, I told this punk, that I AM CALLING THE SHOTS and he is NOT GOING TO THE HOSPITAL. THis was soooooooo unneccessary for me to have to get upset, Payton wasn't even coding when they got there and never did, so he really just aggravated the situation, which I really hope someone explained to him was not the best idea for that scene. Anyway, they finally helped me into the car and gave me an ambu bag, just in case and Payton was fine, watching his DVD within an hour. What craziness. It turns out that the bi-pap motor or blower burned out and it was just really bad timing for it to burn out. If we had been at home, we would have been fine. But I have a new bi-pap for Payton( they brought it around 8pm)and he is sleeping comfortably on it now.(He HAS to have it sleep-he would never be able to breathe through the entire night without it) So.......I have since found out through other parents, that ins. companies usually approve a "backup" bi-pap. How nice that this is how we have to find out about that, ya know???
Well, that is all for today. We are all fine and Payton really wasn't any different today than any other day. The day was just different......Goodnight:-)
P.S. Mommy and Daddy love you so much Payton and don't worry, we got your back.;-)
I just wanted to thank you guys for the opportunity to meet payton the other day. I also love my picture. I keep it by my computer so i can see him every day. :) I hope to come and visit you again. you are so sweet that i just cnnot stop thinking about you! I pray for you all the time and hopefully with all of the new technology with stem cells they will be able to help you just like stem cells helped me. Hope all is going well and happy new year to all of the freemans! Love always jen xoxoxoxo p.s. if you ever need my help for ANYTHING do not hesitate to ask!
Hello everyone! Payton is doing great. We have our loaner bi-pap and a used one until the new one arrives, so we actually have a "back-up" for now. I am going to get a script for a back-up from his pulmonolgist and hopefully get a legit back-up bi-pap as soon as possible! From now on, to make sure that we are never in that situation again, I will keep the ambu bag with us (this is that mask and bag that gives quick breaths sort of like cpr-to clear the airway) and if we go far, a back-up bi-pap in the car.(It is very much like a vent to a kid with a trach--he must have it!!)
I have bad news that I must pass on--our speech therapists' husband, passed away the day after Christmas. He had lung cancer and even though he had been in remission, it came back and after aggressive chemo,etc..he came down with pneumonia and spent his last days at Hospice by the Sea in Boca Raton. I am VERY upset about this, as we have become very close to Eileen. She is such a wonderful person, and so wonderful with Payton (having people help your baby that actually care about him is priceless), and we had many conversations about her husband, Richard, about their lives together and his cancer and all that they were going through and I know that she loves him so much. Rob and I went to the funeral services--it was very nice. We felt like we knew him afterward and neither one of us has even seen a picture of him. But seeing Eileen, and knowing that she just lost her partner and best friend and everything to her of the past 16 years, was painful for me to try to imagine. I really couldn't even speak, I just gave her a hug. I know most of you don't know Eileen, but she is a good person and I want her and family to know that we love her and we are so truly sorry for her loss, we really are. And also, Payton really misses you too....
Goodnight everyone, let us all look forward to a new year.
first my sympathy goes out to eileen for the loss of her husband..be strong.. payton i wish you the best new year and hope for a cure....hang in there bill and i love you so very much and miss seeing you as much as we would like too.... deb i wish you all the best that life can offer you are one terrific mother and daughter in law... i love you... rob you know i love you with all my heart and i wish you all the best also after all you are my #1 son...........HAPPY NEW YEAR! happy new year to you deb and bob.....
Hi Payton, Deb, and Rob: I just want to extend my condolences to Eileen, who I do not know, but anyone who is precious to my nephew is precious to me, and anyone precious to her--I grieve to hear of his loss. To all of you: best wishes for 2002... 2001 has been, for many of us, the hardest full year of our lives, for so many reasons, but we are strong, and we make our own futures, with help, of course, from our family and friends. My wish for 2002 is that we all keep each other close in our hearts, even when we are far away, even when times are hard. My love to you, Debbie, Rob, Payton. ANNUM VINCITE: Conquer the year.
Hello Payton, Rob and Debbie- The website is great,and the photos are wonderful! It must be nice to know so many people care, and are supportive. You are so special and very lucky to have such a great Mommy and Daddy who love you so much. Lets all hope and pray for a Happy and Healthy New Year to all the angels and their families!
Damn Debbie & Rob....Everyday you folks amaze me more & more. Read the new journal entries & freked out a bit...goose bumps all over my body...glad to hear that Payton is doing better. It's amazing how well you know your child....Dr. Debbie to the rescue!!! Thank goodness!!! Deb have been checking onto some sites regarding used equipment & have found some available for sale such as a bi-pap machine & a suction thing a ma jig ....does your insurance co. cover any equipment or do you have to fight for all that too??Are you in need of any other back-ups?? Please let me know & I'll see what I can find out about them.Saw Bill Leahey the other night at work I have another $50 + for you!!!He said he still has your wedding present sitting on his kitchen counter!!! Such an awesome guy he is...I was told to give your family his best. Spoke w/my sister-in-law in Michigan ..the one Dave & I spoke to you about & she asked me to have you give her a call...thinks she might be able to help you have the state cover the cost of Paytons formula & other misc. things. She has been through all of this w/Kaitlyn(her daughter) & knows all the ins & outs of how to get her daughter exactly what she needs. So give her a call ...I left you her # Christmas Eve but if you need it again let me know. Please let Eileen know she's in our thoughts. I think of ya'll everyday although sometimes I'm unable to sign on & see how Paytons doing...you're never far from my immediate thoughts. Let me know if you need ANYTHING...I'm serious ANYTHING. Talk w/you soon. xoxox Luv, Shan
Please let me offer my sincere condolences to Eileen and her family. My thoughts are with you all... I hope this new year brings ONLY good things to all of us! Deb, Rob and Payton...Have a HAPPY and (most importantly) HEALTHY 2002. I love you all VERY much. LYB, Me
Happy New Year!!!!! We still have about an hour and a half before the ball drops, but I wanted to wish everyone a happy new year! Rob and Payton and I will be bringing in the new year together and we will watch the ball drop on t.v.
Amy, how come you are not here yet???:-) Hope you have fun and be safe! Actually I hope all of you were/are safe, you know how these drinking holidays are. Not the safest to be out driving around...
Shannon, I got a loaner backup bipap until I can get a doctors prescription for one, and then they will get me a permanent backup, but I do have a backup for now! Thanks! If you happen to find a bipap or suction machine that is cheap, let me know, I am sure we can never have enough backups, ya know. THe bipap goes for about $6000 so I doubt you'll find one much cheaper but ya never know! I will definitely give your sister in law a call, I need the number again. Thanks! About Bill, I could really go on and on about Bill Leahy, he is exactly what every companys' leaders aspire to be. What he has done for Payton and for sma research and sma awareness, is a true testament to the fact that "Outbackers" are a family and they take care of each other no matter what. I have always been passionate about my job and given it my all and low and behold, when the chips were down for me, they (BIll)stepped up and told me that WHATEVER I needed, just ask. Well, I asked for help to run a little fundraiser to help with sma research, and he turned it into a benefit that raised $40,000!!!I am so very proud to work for him and OUtback, they never cease to amaze me...
As we go into the new year, I would like to say a special thankyou to all of you that have been there for us, reached out to help us, and cared so very much for Payton...We could not be the parents that we are to Payton without ALL of your support. It is very powerful knowing how many we are as a group and how much we can accomplish together, and I KNOW that we will see a day when a child with sma is no longer issued his or her death sentence, but rather a pill or a shot!
This year has been hard for us, and harder for Payton, but it could have been much worse and I want to thank my wonderful husband and Paytons wonderful father for being so great to me and so great to our baby!Who knew you were so cut out to be a husband and father!!!:-) I love you Rob! And of course, my life would never be as rich as it is without you, my beautiful baby Payton, I love you more than I ever thought I could possibly love someone.....Happy new year to my 2 boys!!!!!
May you all have health and happiness and each other for a whole new wonderful year! Welcome, 2002!!!!!
Happy New Year Payton!!!! And to Mommy and Daddy--remind Mommy we still have date! I guess since I'm a tall blonde Mom's afraid of us getting together!!!!! Happy New Year Deb!!! Love, Madonna
Dear Payton, Roses are red Violets are blue Happy New Year Grandpa loves you!
Happy New Year everyone!!! It is finally here and we are very happy!Donna, you most definitely have a date with Payton, although you may have to share him with Taylor!! He was expecting her also!! Come over anytime, just give me a buzz...
Payton has come down with a bit of bug, his heart rate is a little high, his nose is running slightly and he has a slight temperature. We are trying to be aggressive and we are making him cough, keeping him cool, putting him on the bi-pap early,and giving him Tylenol. If he remains in this condition tomorrow, we will call his pulmonologist and see if they can prescribe an antibiotic over the phone. They don't usually like to do that, but we can't get up to see him til next Tuesday, so hopefully they will just give it to us. This just started tonight, he woke up with a happy face and great numbers, feeling good about the new year, I'm sure:-) He is just so incapable of fighting off anything that comes his way, it could have been anyone, or anything.We have had a lot of visitors and we have been out a lot lately...So, keep your fingers crossed...Love, us
One more thing...If any of you are interested in being a member of FSMA, it is $25 a year and they send you updates on research, pictures, stories of other children(Payton was pictured TWICE in the newest issue!) Their address is:
FSMA
P.O. Box 196
Libertyville, IL 60048
Their phone # is 1-800-886-1762
Audrey is their founder and she is usually in the office until 3:00pm
They now have over 4,000 families as members!!!!!
Thanks and have a great night!!
Hi! I am writing early for those of you that may be worried about Payton! We figured out that he may not be feeling good because of teething. His secretions have been flowing and he seemed uncomfortable, so we vented him(let gas out of his stomach) and he seemed fine. He didn't have a temp before we put him to bed, but he still did not seem right, so we thought it was his teeth. Then, in the middle of the night, he has SEVERAL explosive diarhea poops, so I guess maybe his problem was gastrointestinal. He seems to get gas or stomach cramps and they just tear him up. Either way, he is watching his Toy Story dvd, he has his happy face on, no runny nose, no crying ,no temp, and VERY good numbers. So, he is fine, thank goodness. I think he may have gotten too much prune juice yesterday. He gets it in every one of his meals to prevent constipation(which is a NIGHTMARE for him) so hopefully that was it! Love, Deb
Happy New Years to the Freemans! I hope you have a wonderful New Year and I hope this year is the year we find a cure for this disease! I have to agree that due to Deb, Rob and Payton..You guys have taught sooo many people about SMA and We are thankful for that. We are getting closer to a cure because of you guys. Thanks for being so strong! We love you guys and we'll see you soon..Payton Im sorry you have to drink all that prune juice...:( Yuck! Trinity says hello to you guys!
Hello Payton, my name is Debbie Corley. My niece Lily Barnett and her mommy Amy (my sister-in-law) told me all about you. You sure are a cutie pie. We'll keep praying for a cure. Until then you keep smiling and stay away from those girls in your tux. You're a heartbreaker. Hugs and kisses sent to you from the Corley family.
Happy New Year! I am glad that Payton is feeling better; Debbie, you are an amazing Mom! I am excited about the upcoming benefits to raise money for SMA research! Debbie, just let me know the details and I'll be there! Also to Eileen, I'm very sorry to hear of your loss. I hope everyone had a safe and happy new year. Deb, I will call you soon! Payton, I miss you! Rob and Debbie's Mom, I'm so glad that Debbie has you both to help take care of Payton! And to all who care about Payton and other children and their families, I know we can all make it possible to increase awareness for SMA and raise money in the upcoming benefits. Love to you all, Jennifer
Hello out there!!! Another busy night at the Outback! We did $30,000 more in sales in our store this year than we did last year! Amazing, huh?
Payton is sleeping soundly already and seems to be doing much better, no gas or anything! He was talking quite a bit today, I am looking forward to understanding some of what he has to say, and believe me he has A LOT to say!!! Just like his MOMMY!!
Thankyou everyone for helping to raise awareness about sma!! I am sure that you may ask yourself, why has no one ever heard of this disease? Why have soooo many children died and so many live with it and are dying and no one has ever heard of this disease????
I'll tell you why...THere are a couple of reasons.
#1 Handicapped childrens parents have their work cut out for them...I have a lot of help and still don't have time to do things. Spreading the word is difficult if you can't get out much.Most handicapped childrens mothers can no longer work...Their exposure to the real world, is mainly with docs, nurses, paramedics, therapists, etc...
#2 A lot of handicapped childrens parents do not take their children out. Some not at all, some very little. THis is partly because they cannot handle dealing with the general public and the staring, etc (I believe that it is mainly because it is so much work, but the public doesn't make it any easier)... Imagine people staring at your child who is intelligent and sees people looking at him like he is an alien and then moving away like he has the plague... You don't want to be bothered, but you want people to know the deal, so you find yourself wanting to educate people instead of enjoying your trip to the mall and then people don't listen anyway or feel like they don't know what to say so it just gets more and more difficult and more work than it seems to be worth....And really, who could blame them/us? As parents, our biggest role is to protect our children, and if they seem happy being around the people they love and that love them, why expose them to the nasty, mean spirited people in the world???
#3 A lot of sma babies, are miscarried. I don't know the statistics, but the MOST severe type 1 children, start the disease process and weakness,etc.. in the womb, and they cannot exist even in the womb and are miscarried.(WHich means they are not diagnosed)
#4 A lot of sma babies are not diagnosed,because they die before they can be diagnosed. If Payton had passed away the first time we called 911, and we were not able to resuscitate him, they would have written off his death as a SIDS case. This happens often. I read in a medical journal recently that doctors are now saying that there is no such thing as "sudden infant death" They are saying that babies don't just STOP breathing. Something either happens to block the airway, or there is SOME UNDERLYING CAUSE THAT CAUSES THEM TO STOP BREATHING. As would be the case in many sma cases. They now believe that MANY sids cases could actually be sma.
#5 When a parent loses a child, this is obviously VERY traumatic, so when dealing with the grief, and moving on with their lives, many of them are not talking about sma or bringing up this very emotional subject.
So, for these reasons, and MANY more, you just haven't heard about it...But it is out there. More than you can really even imagine....And WE need to let people know. I make it a point, even when I am not in the mood, to let people know the facts, and give them Paytons' website, because eventually, everyone will know sma like they know muscular dystrophy, cystic fibrosis, or leukemia. It seems to make sense since sma kills more kids each year than any of these 3 diseases.And please, spread the word too! Give out Paytons website to EVERYONE you know! Even if they don't get actively involved, it is one more person that has heard of sma!!
I am actually trying to be creative with ways to spread the word, so if anyone has ANY ideas, let me know here on the journal or e-mail me!
Thankyou our beloved friends and family! Goodnight!
Thanks for sharing. Payton sounds like a super lovely boy... I cry every time I read other parents' descriptions of their SMA child, because it is so similar to our story. we have magnus, who was diagnosed at 10 months. he could have been diagnosed much earlier since he's never moved much. All the best to you!
Hello sweet Payton..we just wanted to stop by your website and "see what is happenin'". I saw your mommy's last entry and let me say you are one blessed little boy to have a mommy like that! Debbie..I agree with you 100% about getting the word out..and one more thing. I don't know if you get the FSMA directions or not but did you see the type 1 article in there? It is from the conference and I am totally outraged!! Not only does SMA not get the exposure it should get (in order to find a cure) but type 1's are just always thought of to DIE!! Why not be more balanced with things and maybe let someone like Liz or Stephanie Price..or YOU write an article about being here and living with SMA. It is a horrible disease but are we as parents just going to sit and let this disease take our children without giving a fight? Not me!! I lost one to this disease because I was told there was nothing to do..I will not lose another!!! Sorry to rant and rave but I feel like the word needs to get out that type 1's are living well past their diagnosis now thanks to people like Dr. Bach who are giving our children a fighting chance!! Lily says hello to Payton and that she too gets tired of watching her videos too!!! Hugs to you all and as always you are in my thoughts and prayers.
Hello everyone!! Another busy day! Payton had speech therapy today with Denise. He absolutely loves speech and cries when they leave!! I think Eileen will be back in 2 weeks and we are very lucky to have Denise subbing for her because she is soooo great also!
We watched the Rose Bowl together with grandma and grandpa. I believe everyone was happy when they left, but the game is still on so we will see..:-) If they (Miami) win, this means lots of work for Rob, so keep your fingers crossed!
Amy, thanks for visiting us, I have not read that article yet, but I intend to this weekend. I hope it doesn't upset me, it doesn't take much to set me off-Hee Hee.
I know this may seem short for me, but I must go to sleep. Love to you all The Freemans:-)
Hello Hello Hello. Payton had a good day today. He seems to be having trouble with digestion or maybe just gas, definitely stomach issues...PT this weekend and Aunt Amy is here to visit us with Brian! Yeah! Have a great weekend everyone and Take Care!
Hi Payton! Your favorite aunt here! Well, I finally got to go out with your mother last night... boy, does she love you! The woman almost never leaves your side, and when she does, you're all we talk about! :-) Of course you're always on ALL of our minds, so that's not surprising. We love you and missed you last night! I hope you had a fun night with Grandma! LOVE---Amy
Long time no write!! Sorry...I have been a little busy with the new job. I am all "up-to-date" now, though! Have I mentioned HOW MUCH I LOVE THIS WEB SITE??!! :-) Debbie Deb, I miss you. Hopefully I will see you & Payton this coming weekend? You too, Rob! Kisses to you all. LYB, Me
Hello out there! Payton is doing very well--seems to be having less gas, but still a little discomfort during a meal. We may try to feed him less during a bolus and just feed him more often. We are going to discuss these issues with Dr. Adams (the GI) when we go to Palm Beach this week.
We want to send a HUGE thankyou to Shannon for cooking us her delicious meat sauce and bringing us an entire dinner on Friday night!What a treat! And it really was very good!! Payton enjoyed your visit and loves seeing the girls. They are sooo good and my refrigerator never looked so good--thanks Deven!
Rob and I were able to go out for dinner last night with Amy and Brian. We went to the OUtback, of course:-) and had a really good time!! We don't get to do it often, but thanks to my mom, once in a while, we will go to a movie or out to dinner and boy, what a nice break it is. We always miss Payton, and can't wait to see him when we get home, but all parents need mommy and daddy time, and lucky for us, we get some!!
Amy and Brian, Thankyou so much for visiting with us! Payton loves visitors and seeing you was wonderful for me and Rob too!! I appreciate my family more now, than I ever did, and that is definitely one of the FEW good things to come of this sma tragedy....We miss everyone so much, it is hard to see everyone when everyone has their own lives even when they live close, but when they are thousands of miles away, it just plain stinks...
I will be contacting Nova this week to try and confirm a date for our fundraiser, so keep your fingers crossed and hopefully it will be a smooth and easy meeting...I will post any details as I get them!
Payton had physical therapy this afternoon and did a great job!
Hi Marni! We have missed you! Hope the new job is going well, and if any of you out there are interested in being a "traveling nurse" please contact MARNI right away!!:-)
Well, have a great night and we'll talk again soon! Love, Deb
Hello to the Freeman's. Payton, your website is really cool. You are a handsome boy! Thank you to your Mommy and Daddy because now I can look at your pictures, write you letters, and hear about how you're doing. We would love to come over and see you. So, just ask Mom and Dad when would be a good time. Okay?
Rob and Deb, we just wanted to let you know from our family to yours that you are always in our thoughts even though we don't talk often. We just never want to be a bother or intrude because we know how busy your lives are. My point exactly why this website is so wonderful. Reading your story really touched our hearts and made us understand a lot more of what you are going through and what you've been through. Although, I don't think that your words alone could convey the reality of it all.
As many have said, Payton is very lucky to have you for his parents. Your love and strength for him are just incredible. There's nothing like the love for a child, I always say. You guys are ONE strong unit together. You have made me realize just how blessed I am. I have to cherish every moment with my kids. I think we definitely tend to lose sight of what really matters in life and we take for granted the little things.
Anyway, sorry to be so long-winded. I can't begin to tell you how I feel. Just wanted you to know that we care. Thank you for really opening my eyes and educating me on sma and how terrible it really is. I don't think people really know much about it. We are here to help with anything we can do.
Now let's really keep in touch. Keep us updated. Take care. Later, Payton.
Love, the Troia's
P.S.- Call me weird, but I noticed something strange: Rob's middle name is Joseph and Payton's middle name is James and my younger son's name just happens to be "Joseph James".....cool, huh?
Hello out there!! Today was a busy day, but Payton is doing well. He is still not thrilled with his stomach issues, but we are seeing Dr. Adams tomorrow, so hopefully he will get this stomach thing under control. We will also see Dr. Sallent for Paytons' RSV shot and visit with the doctor. He checks out Payton to see how he is doing, but Payton usually FREAKS when Dr. Sallent even comes near him, so it is usually a quick visit, because his sats will drop and he will turn red and basically hold his breath. Not good. But, the visits are good, not just to get his shot, but so that a doctor keeps up with Payton and how he is doing...
To the Troia's, thanks for visiting, it has been soooooo long since we talked, I hope the boys are doing good!! Thanks for the nice comments, it means alot to us, for people to know what's going on with Payton and keep up with the journal, so thanks!!
Hopefully by the end of the week I will have some info about the benefit, etc.. so be sure to check in this week!
The Great Eskate is coming soon also!! Feb 8-10! If you are interested email me and I will give the South Beach Rollerskaters phone #. Rob and I will be down there Sat. afternoon, and Regina and her family should be down for the weekend, I am pretty sure. For those of you that live near Statesboro, GA, there is an SMA fundraiser (benefit dinner w/silent auction, etc..) in just a couple of weeks!! I will post the info as soon as I get it!
Take Care everyone! ANd Amy and Brian, we hope you are arriving home safely!! Stay warm! Love, US
Hey there, Payton. I hope that your tummy feels better after you visit the doctor. Hang in there, bud. I'll be checking all the time to see how you're doing. (I put your site on my FAVORITES!)
Hey Deb, I told big Johnny's cousin, Josie, and her husband, Anthony, to check out the website and they're sharing it with other people to see if they all can help out in any way. We'll all keep checking in for your comments about your next fundraiser.
Hey, have you noticed that I like to type a lot??? Take care and we'll talk soon. The boys are just fine, thanks....Later Anissa
Hey Debbie, Rob & Payton~ Glad to hear you enjoyed the dinner!!Thanx for letting us come over & visit..the girls look forward to seeing Payton.We check in on his site everyday & they follow his ups & downs & love to hear about how he's doing.DEb what do you think about having a yard sale to benefit sma?? Folks are constantly dropping things off to Goodwill or throwing them away & I thought if I put up some flyers & let people know they could drop their stuff off at my place or I could pick it up & let the folks at work know about it... maybe we could raise some cash to add to the fund to find a cure.I for one know I have some stuff I no longer use,clothes my girls have grown out of,toys they no longer play with,etc.What do you think???Couldn't hurt,eh!!!The other thing I thought about was getting in touch w/some of the larger corporations that need to have a tax deduction...it's a brand new year & what better a cause to give their "tax free" money to??Motorolla, IBM, Hendrics Toyota,Bell South,etc.Let me know what you think.I'll give you a holler this week!!! Can't wait to see you at work...it's insane when you're not there!!! :( Luv, Shan xoxo : )
HEY DEBBIE ROB AND PAYJAY, IT'S JACKIE. SORRY I HAVEN'T BEEN UPDATING MYSELF ON THE WEBSITE BUT THINGS HAVE BEEN SOOOO CRAZY WITH MY MOVE AND ALL. I'M VERY SAD I DIDN'T GET TO COME SEE YOU GUYS BEFORE I LEFT BUT THE PHONE TAG GAME WAS GOING ON WITH ALL MY ERRANDS I WAS RUNING. THINGS ARE GOING PRETTY WELL UP HERE BUT I MISS YOU TREMENDOUSLY. HOPE THINGS ARE GOING WELL I LOVE YOU
XOXOX JAX
Hello out there loving family and friends!!
I am very happy to announce that Payton had his absolute BEST visit to Palm Beach ever!! For the first time he held his own like a trooper and did not desat at ALL except for when he got the RSV shot, but believe me, it is a painful shot, and he was even a trooper for that!! Grandma and I were soooooo proud my little munchkin!! Also, we have finally managed to put a whole POUND on Payton which is BIG for him. He actually started to lose weight for a couple of months and we upped his calorie intake quite a bit and he has been doing so well. We are thrilled! Daddy was particularly happy to hear that his little man acted like such a big BOY!! And after ALL that, we went across the hall where he got his mic-key (the button in his stomach that we hook a tube to and feed him through) changed out(also an unpleasant procedure) and he didn't desat at ALL!! And this is after he just got a shot!! Anyway, he did great and we are so happy....
Payton also does really well in this weather!:-) We are taking him to Disney in just a few weeks and we are really hoping that it is cool when we go. It will make the biggest difference in how long he lasts during the day and how long he will handle being in the park each day. So, keep your fingers crossed!
As most of you know, Roberts' brother Ryan was tested positive to be a carrier for the sma gene. Jamie, his fiance, and soon to be wife!, was tested the same day we got Ryans (and my moms) results. They rushed them for us, since Ryan and Jamie will be married very soon, and want to start a family. We are very happy to announce that Jamies' results came back yesterday and she is negative for the sma gene!!! This means that they could not have a child with sma, like Payton. They will however,when they have children, have them tested to see if they are carriers, so that they will be able to prevent having grandchildren with sma. We are thrilled to get this news. As you may remember, my brother was also positive, and his wife was not. They had a healthy baby girl, Briannah, on July 26,2001! The point of all this testing is to prevent any other child in our family from having to go through what Payton has to go through and to prevent other parents in our family from having to also go through this.... It is not easy, to say the least, to take care of Payton, to watch him lay there unable to move, to not be able to speak about the future with any certainty (i.e. "I can't wait for his 2nd birthday" or "Next Christmas we'll take him to VIrginia" etc..)to not be able to work like I used to and make money and contribute to household,to not be able to hold my son for more than a few seconds without him starting to choke, to not have my son hug me back, not because he doesn't want to, but because he can't, to not see Payton smile, not because he isn't smiling, but because he doesn't have the muscle control to lift his cheeks, to feed him through a tube in his stomach because he can't swallow, to have to depend on soooooooooo many people to help me and pray that they never get sick of us, to want so badly to change this and not be able to......I really could go on and on and on..... I want our family to know that this is not me falling apart or trying to make anyone feel bad, it is just the truth, so IF you are part of our family and possibly having any more children, or have children that may one day have children, GET TESTED!!!!!!!!! I know that many of you are and if we can help at ALL let me know, we have a very good geneticist that will hook you up with the right people! Thankyou very much, that is all I have to say about that...
Anissa, as you can tell, I like to type as well, you should hear me on the telephone!!!
Jackie, we MISS YOU TOO!!! We hope your move went well and that you are warm safe and happy!! At first you will surely be a little homesick, but remember we will be here when you get back!!! Payton had a little pic in a frame that he wanted you to have in Tallahassee, so please email me your address and I will send it to you!!
Hey Shan! Yes, what a wonderful idea! I, myself, have soooo much stuff to get rid of! Iwill see you Wed. night and we will figure out what to do!! Thanks for ALWAYS thinking about us,and esp. Payton!!
If any of you are interested in hearing other stories and don't know about main site, please go to : oursmaangels.com Then click on "our kids" there is a list of about 100 kids there and Payton is the last kid on the list. I know many of you have seen it, but many only know about Paytons' sight. And please remember, that these kids are only a very slight fraction of all the kids living with sma, and of all the kids that have died from it...
Take Care everyone and we'll talk again soon.-)
Hey guys!!
I am soooo glad everything went good with paytons doctor visit!!! Deb i hope you will be hungry at work tomorrow b/c i am making dinner for my family before i come to work so i am going to bring you some. I love it and i hope you will too so be hungry:) see ya tomorrow
love always jen xoxoxoxoxxo:)
Payton, we are so glad you had a good Dr. Visit!!! WE are just checking in and seeing how you are. We are always thinking about you all!!! Hugs to you and your mommy and daddy.
Love, Amy and Lily (Brian too...)
Dear Payton, Debbie, Rob...
It doesn't happen often, but this time I am searching for words... We are working hard to put together a great fund raiser skate event for SMA, and after visiting your web site Payton, I have no doubt we will work even harder!! The web site, you, and your mommy and daddy are great inspirations.
Your mommy and daddy are doing the printing for the t-shirst for our Great EsSkate--but I am sure you already knew that, being smart like you are and all. The shirts are really great, and we hope to sell lots and lots of them, so we can raise even more money.
I know that everyone will wear those shirts with pride. I will send your web site URL (that's the internet address for your web site) to our event director, so he can send it to everyone who has anything to do with the great EsSkate. That way even more people will learn and read about SMA. The more the better.
Bye for now. I look forward to meeting your mommy and daddy in person at the Great EsSkate.
Marianne
HEy out there!! This is the 3RD time that I am trying to write in the journal, so I will make it short so as not to hurt my computer!! Thankyou to all who read this journal, it means soooooo much to us! Thankyou JenB. for my awesome dinner!! And anyone interested in helping at the rollerblading event in south beach, please email me! And Payton is doing great everyone! NO MORE stomach issues! THank goodness!! He is sleeping comfortably for 2 whole days now! Take care and we'll talk soon the freemans
Hi guys, just checking to see what Payton has been up to! Glad to hear everythings alright.I love the idea about the yard sale! We could even have it one weekend at Outback. Deb, have you called Nova yet? Let me know when we could get the ball rolling. Kelly
Hi Everyone~ Just wanted you all to know that everything is fine with Debbie,Rob & Payton. They are having a problem with their computer & Debbie is unable to get her journal entries to show on the page. I spoke with her today and Payton has been sleeping great since his doctors visit and feeling much better. As soon as the problem gets figured out with the computer she'll be back on . Have a safe weekend everyone. Luv, Shan xoxo : )
Hello out there world!! Well, for the past two nights I have written my usual speech and then for some reason my entries did not make it into the journal! I am sorry for those of you that worried about Payton! He is actually doing great! Better than he has been in a month!! The stomach issues mysteriously disappeared when he got his new mic-key in, and started the zantac. The GI thought that when he tried to change the button last month( and the new one was broken-so he had to put the OLD one back in-and then it started bleeding) that he may have irritated the site! Probably, because it was the only time that we ever saw it bleed, but anyway, he is doing great now and I am thrilled to be able to feed him without him getting VERY angry with me...
I am so happy to let you all know that we will be doing the event at Nova University again this year!!! Thanks to Arlene over at Nova! She was wonderful last year in helping us with the benefit and joined us at the fundraiser too! We are looking into dates right now--looks like either June 8 or June 22, but I am not sure. I will let you all know as soon as I do! As soon as we have the date, I will need lots of help getting the word out! We want to do it EXACTLY like last year, except that we want to have press coverage and newspaper coverage too! So anyone with connections or that just wants to help, let me know!!!!!!!
The hi-low chair people ( National Seating and Mobility) have told Rob that it will be 10 days as of Wednesday...We know this is not what they originally promised us, but we hate to make any waves, so we just said, great! Thanks! So, he will have to wait a little longer, but at least he is getting it! We feel very lucky to have such wonderful friends and family! Our friends have become sooo much more than friends....you all feel like family to us, because it always seemed that family was who came to your rescue or aid when in trouble, but we have learned that is not always the case....your friends can be just as good to you...so please know that we love and appreciate you all!!You are welcome in our home, our hearts and in our lives and we hope that one day Payton will be able to tell you what a rough road it WAS, but thanks to people like you it is all behind him!!! Wouldn't that be so great? Well, for those of you that haven't seen Payton in a while, come visit!!
Bobby, I want you to know that Payton loves that lava lamp!!? It is weird but he seems to be in some sort of trance sometimes when he is staring at it!!
I talked to Eileen(Paytons speech therapist) today. She is coming back to work next Wednesday. Payton will be excited to see her and will of course miss Denise, but Denise will fill in whenever needed for Eileen! Eileen is doing well, considering, she is holding up she says, and she says that she needs to keep busy so that is why she is coming back to work already.... We love you Eileen...
The yard sale sounds like a great idea to me. We never really got to talk about it the other night, Shannon, but maybe we could all get together, on Sunday or Wednesday and make a plan...
My grandmother, Paytons great-grandmother is visiting for a couple of months from Ohio, we will all have dinner together tomorrow night so we are looking forward to that!
Disney soon!!!!!!!!!
This has been a great week, so I hope you all have a GREAT weekend! Love,US
P.S. I forgot! Thank you Shannon for going out of your way to find out about the car seat! It turns out that FSMA has 3!! THey told me that they NEVER have them and all of a sudden they have 3!! They are mailing it to us on Monday and for the first time since Payton was about 4 or 5 months old, he will have a car seat!!
Also, hey there to the Barnetts and Marianne, thankyou for all that you are doing to help raise research money and raise awareness about sma.....
P.S.S. I don't think that I need to say this...but after reading my entry, I could see where some of our family may have taken it the wrong way. I did not mean to insinuate that our family has not been there for us, only that our friends have really stepped up to the plate and acted as though they are family too...So for those of you that may live far away, and maybe feel a little detached from us, don't worry, we love you and you have all done ALOT for us and we appreciate ALL of you!! We would not be as strong as we are without our huge support system!
Don't worry, Deb. We know you love us, and we know that you know that we do the best we can, and you know that we know that all your friends back home are lifesavers, and nothing to be jealous of... in fact, they're something to be very very very thankful for! And we know it and you know it and they know it. And Payton knows it. I miss you and him, and Rob, and everyone! And you know that too! :-) LOVE!!!! ---Amy
Wow...a lot has happened since I have last visited the site! First and foremost, I am soooo pleased to hear that Payton is doing well & that he was so brave at the Dr's appt! I am also VERY glad to hear that the benefit date is almost final! I will be helping out as much as possible. (Deb, I am sure Robert's mom will donate some artwork again & I will try to get the Miami heat to give us an autographed basketball again, as well) Anyway, I am sending Payton my love and a BIG smooch. Call me later, Deb, so we can chat & catch up. I love you guys with all of my heart, Marn
Helloooooo! I hope everyone is doing well! Payton had a REALLY rough night last night. We are not positive but all things pointed to him having a BAD stomach ache and maybe a little constipation? Either way, he was up most of the night and was yelling for me. Lucy wasn't who he wanted to look at, and when I sat with him and held his hand he was happy...He is soooooooo cute...I think sometimes he is just acting like any other baby, in that he wants his MOMMY or DADDY!! I wish so much that he could sleep with us, but that is virtually impossible and the few times we actually tried it, we ended up having to take him back, because our bed is not comfortable to him, plus not as easy with all of the equipment. I think he is happy with his bed, just wants us to be with him sometimes!!!Anyway, he is the cutest thing ever, whether he is sleeping or not!
I have sent a couple dates to Arlene, over at Nova, and hopefully I will hear back soon! Whenever I know the date, things will start to roll!.....
We had dinner with grandma Helen last night and we had a wonderful time! We like when she visits, we just need to get her over here more...
I trained to "open" bar this afternoon. I am officially starting to bartend again next week. Only one day a week and also a key shift, but hopefully I will make more money than I have been for the past year!It was wierd to imagine bartending again, it's been about 2 years! But I think it will be a nice change, and I know that I will appreciate the money, which I never did in the past....So come visit me if you can!!
We watched the dolphin game today and Payton wore his "lucky" dolphin shirt!? I don't know what happened, but even I was yelling at the T.V! Sorry to you dolphin fans!Maybe next year will be our year! If it makes you feel any better, Rob is a bills fan!! Think how HE must feel! HaHa Sorry, honey,love you.....
Take Care All!
Hey Payton,Debbie&Rob~ Glad to hear things are going well.Thank goodness you gave me 2 pix Deb~Deven snagged one up right away to put in her bedroom!!! Thinking about Saturday Feb.23 for the garage sale.Let me know what you think of that date. I will speak w/Lori tomorrow to see about using the Outback parking lot which means...ALL YOU LOCALS WITH EXTRA STUFF JUST CLUTTERING YOUR HOUSE this is your chance to clean out!!!Definately will need some help so please mark your calendars & e-mail me for more info. (SBeatty195@aol.com)All proceeds will go to the fund to find a cure for SMA.Also if you know of ANYONE who can donate a service for our benefit ie:a landscaper,pool service,cleaning service,a round of golf, a gift certificate from a restaurant,a hair salon....WHATEVER for the silent auction or a flourist,a baker,someone who does balloons to help with the set-up....let us know!!! This year will definately be a GREAT!!! And I know with all the folks who are rooting for a cure we can make this benefit unbelievable!!! Deb~ Luv ya & Payton and I'll talk w/you this week. xox Shan : )
Deb,Rob & Payton I'm glad things are going well! I am so excited for the benefit; it will be a huge success! I have some great ideas for getting donations for the benefit; Please let me know how I can help! I have to come over very soon, I miss Payton! Please give him a big smooch for me! He is definitely the cutest! Love you all! XOXO
Hello Debbie, Rob & Payton,
Wow! What a great site. This is my first visit, love the pictures and all. Payton, you are one cutie pie! Kisses to you!
Debbi, I'm a work, so I kinda just skimmed the messages... sorry to read Payton didn't have a good nite. Yes, you are probally right, he just wanted Mommy. But, I would be interested in helping out with the yard sale. Please let me know and if you need a site in West Palm... I know it is out of the way for most, but maybe I could organize something up in The Acreage. Please let me know. (I will definately attend any Broward location - I have lots of goodies to get rid of!)
Hi to Rob, Just looking at all the pictures and I have a request for a "shaved Rob", maybe let it grow 1/4 of an inch and do a comparision with Payton. Wouldn't that be cute!?! Sorry, you look great either way!
Take care and bye for now.
Love, Pamela
Hey Shan!and Jenn!and Pamela! and everyone else out there reading!!
Today was a great day for Payton. Last night wasn't as good as usual, sort of like a mild version of the night before but then he ended up sleeping late and he's been great all day! His numbers are wonderful and he seems comfortable with his stomach and his meals! I guess that's all we could ask for!
The yard sale sounds great to me, I am sure I have a ton of stuff to get rid of, and it sounds like alot of our friends will too! I don't know about doing it at the Outback though?? Do we know anyone that lives close to the Outback? I always think of a yard sale at someones house, but whatever works for everyone else is fine! I think the Proctors' live real close to the Outback....and the Spanns....maybe some others too.
We just got our bipap mask FINALLY!! Payton has been using one that we borrowed from the Nolans for about a YEAR! and it is really just too small for him now. The masks generally make their noses sore or red at the top, and sides, but this one has been rough on Payton because it is too small...We have been trying to order one through insurance for about 8 months or so...No I am not kidding...Sometimes they really drag these things out, esp. if it is not a life supporting piece of equipment....But we are thrilled to finally have the right size for Payton and he will be enjoying the use of it tonight!
We are REALLY looking forward to Disney and we have been talking to Payton about Mickey and Minnie and all the great characters and things we will see in the Magic Kingdom!I think he is excited too!
My beautiful mother is sending all the new pics to Laura tonight so be looking for new pics soon!!
If you have any ideas about the fundraiser, please go ahead and post them, or if you would rather email me, or talk on the phone, send me a note or give me a buzz! I want to make this thing huge!! I know if we all work together, it will be great!!
For those of you that wanted to come by this week, tomorrow or Thursday are good days! We are having family over for dinner on Friday night and I work Wed. night and the weekend will be crazy as usual!
Have a great Monday night everyone and take care! Love, Deb
Dear Payton: I havent had the chance to meet you yet, but im very good friends with your mom. One of these days I will come and visit you. Love Jeffrey
Since I was visiting your site, I thought I would let you know that I missed you on Sunday and I look forward to seeing you on Wednesday. I always look forward to seeing you and you give me a nice break from the "I've fallen and can't get up" side of my job. Don't burn too much midnight oil!
Love, Susan :> P.S. Tell Daddy to give you his "hair brush" because "you have hair."
Just checking in..I hope you guys have a great time and have great weather for the Magic Kingdom!! Glad Payton got his new mask!! Love to you all and Lily sends hugs and kisses to Payton.
HI DEB, ROB, AND PAYTON, GLAD TO HEAR THINGS ARE GOING OK. WE WILL DEFINITLEY BE AT THE FUND RAISERS, AND ALSO GLAD TO HEAR YOU WILL BE VISITING MICKEY, YOU NEVER KNOW WHO YOU MIGHT SEE THERE... KEEP UP THE GOOD WORK. T. BONE AND LADY DI
Hello world! Payton is doing very well this evening--earlier he seemed to be having some stomach issues and then after letting go of some serious gas, he seems to be fine now!! It is amazing what can come out of a body that small!! Anyway, we tried to put Payton on the bipap with his new mask last night. What chaos!! He immediately knew something was different and started holding his breath! It is amazing how they know what feels right and what feels wrong. He was yelling after he caught his breath and desating quickly, so I put the old mask back on and he immediately went back to normal....so.....we are gradually putting the new mask on during the day until he gets used to it, and then we will use the new one overnight. But there is NO WAY that he will tolerate it right away. He is pretty tough this kid!
Hi to Jeff and Susan and Amy and Tammy and Diane!! Thanks for visiting! I don't know if I mentioned this but Payton WILL be at this years fundraiser. We look forward to having everyone see him all dressed up at the benefit! Amy, I really enjoyed our conversation today. I can get very passionate and long-winded about all of the sma issues, but it is nice sometimes to talk to someone that lives the same life, and deals with the SAME issues....You should hear Regina and I on the telephone!!!!
Well, I must go and put Payton to bed but have a great night and take care everyone!!
Hi Payton, Deb & Rob! I'm glad to hear you are all doing well! Disney will be a great time for you all; I'm very happy you are able to go soon! Payton will love it! I love the new pictures; he is sooo cute ( I know I always say that but it is so true!). I know you wrote that tomorrow would be a good day to visit but I was wondering if Monday is a good day for you? I don't have class or work so I can come by if it's ok with you! Maybe I can pick up lunch or something! I would love to see Payton and you! I will call you to tell you my ideas for the benefit; I also am sure that I have stuff to donate for the yard sale! Early spring cleaning here I come! Gabe says hello! Deb, I have some pictures for you of your lil' sweetie! I'll call you or see you soon! Love you all, Jennifer
Dear Debbie Rob and of course Payton: yesterday I visited your site for the first time,it had actually taken some time for me to view the site, At first i was very leary and after a few minutes I decided to just jot down a quick note to you all letting you know I had somewhat looked at the sight.After i wrote a quick note I went back and looked at the entire site from head to toe. I sat here for awhile thinking to myself that what i wrote wasnt all that and I should have written something inspiring, so here i am again. Debbie, when you are at work it really makes my day, I love talking with ya and being around you, Rob I have only met ya twice but I look foward to getting to know you as well as Debbie, and Payton, I so look foward to meeting you and soon I will be arranging a time with mommy so I can stop by and say hello to you, and by the way the picture of you as Blue is the cutest. Well I guess thats all i have for now till I visit your site again. Debbie and Rob if you ever need anything let me know,. Love always Jeffrey
Hi Payton!!!
I can't wait to visit you in February...... I will see all of you soon...
Love Heather!!!!!!!
Hi Deb, was nice to see you at Outback tonight. I don't know your husband and never met Payton, but I know the type of person you are and that you will do everything and anything for that kid.. I have known you from going to Outback for quite a few years and you are one of the warmest and kindest people I have known. I am sure your husband is the same or you wouldn't be with him..lol...but what you two are doing I hope anyone would do for their child. You two deserve the best and to enjoy your child and the times you spend with him. Debbie, you know my situation and how I was gone and g--d gave me another chance and I do cherish every moment of my life. I sincerely wish the both of you the best of luck, and may Payton graduate college , get married and have his parents nagging the crap out of him...lol..take care and see you again one of these Wednesdays or Sundays. My prayers are with you. Steve
Howz it goin' out there?? Well, Payton is fast asleep but not without stomach pain! If any of you sma parents out there are reading this and maybe have experience with this....let me know what you do....He has gone from just fine, after we got the g-tube switched out to getting knots in his stomach and no matter how much mylicon I give him, the gas takes forever to "release" itself. He is not constipated, if anything his BM's are a little loose...it is just the gas that is causing him so much pain....Poor baby...But he had an ok day and feel asleep great, it is just that his numbers read a little low, because he is using too much energy to deal with the gas.
PT did not happen today, we packed up and got all the way there but his gas was acting up and we just didn't want to put him through PT while that was happening! Susan came out to the car and said hello and at least got to see Payton....The weird part was when we left and he started acting like he was fine! Hmmmmmmm... Rob says he knows we are going to PT and is outsmarting us!!
Eileen came today for speech! We were so happy to see her! She is doing well and was happy to be back at work! We were her first case back, and she was happy to be busy. Payton looked at her funny at first and then got right back into the swing of things and started telling her what he wanted and such (in baby talk of course) He does love to play!! Welcome back Eileen!
We rescheduled PT for Friday so keep your fingers crossed. As much as he hates it, those appointments are VERY good for him and important to be consistent with.
Yes, Jenn Monday is great! Give me a buzz and we will chat!
Jeffrey, Thankyou so much for your nice comments! You know you are one of my favorites! I love our conversations, and look forward to working with you! You can come by and visit Payton anytime-just give me a buzz and P.S.Those flowers are still in the office I am pretty sure! Maybe your mom would like them???:-)
Bob, I got your pic, what cuties!! Please send more when you can!!!!!!
Hello Cousin Heather and Russell and Dallas and Chace! I went to the website of your friend that Rob told me about. It was Britany Leigh Griffin right?? It is such a small world. So many people are starting to tell us they know of someone else that has or had a child with sma. We are on a mission to get the word out and stop this disease!! Thanks for all of your help, that goes for everyone! Every day I try to get more info out to people. It is the only way to turn this thing around and make it so that EVERYONE has heard of sma....and EVERYONE gets tested for sma...Not just those of us that have been affected.We are looking forward to seeing all of you guys at Ryan and Jamies' wedding. It will be alot of fun!
DISNEY SOON!!!
The yard sale is becoming really popular! Alot of people are asking me about it, so Shannon if the date you said, Feb. 25 right? is good, then let's do it! We have a dining room table and a bunch of stuff to get rid of... I also wanted to see if anyone that lives close to Outback(since it is so centrally located) would like to join us and let us do it at their house! Pamela, I think you are the guru of this stuff so please let me know what you think and if you would do something up in Palm Beach, I am sure that we could get some of the northern Outbacks involved! Let me know....
Well, I don't want to burn you all out, so I will retire!:-) Love to you all from Payton, Robert and Debbie
Oh, P.S. Steve, you are the best! You have always been one of my VERY favorite customers! You are so easy to talk to and really just a great person! I have always enjoyed having you as a "regular" :-) What happened to you was very scary and I am very happy that you are doing so well and walking 5 miles every other day and that you quit smoking and just taking your health so seriously! Not everyone is as lucky as you were after FLATLINING!!!!!!! Take it easy and I'll see you at the OUtback!!
Hi Payton! I'm looking forward to seeing you on Monday! Maybe we can watch a movie together! I have missed you sooo much! Deb & Rob, I love the new design and all the added pictures! I also like how it has the link to go to the SMA home page. I sent it to everyone in my address book again. I hope Payton's stomach feels better soon. Have a great weekend! I can't wait to see you! XOXO, Jennifer
Hi Payton, Deb and Rob! Your web site is truly amazing, I’m sitting at work looking at it and finding it hard to control myself. I can’t believe how big he’s gotten – guess it has been a while since I saw him!
You are truly an amazing and strong family, and your love for each other will continue to give you all the strength you need. You are in my prayers!
Hi Payton and family, I'm a client of your grandma's at her salon in Richmond. She told me about your website so that I could send you a message. I enjoyed all of your Toy Story pictures, my niece and nephew love that movie, too! I'm a teacher, so I really believe in educating people about what's going on in the world, be it medicine or whatever! Keep up the good work.
Fondly, Christy Mullins
Hi Payton, Debbie, Rob! Just a note to say hello, and let you know that I'm thinking about you, and I miss you, and I love you! :-) LOVE! Amy
Hello out there!! Well, Payton could definitely be doing better..I think he may have a stomach bug...I tried to call his GI and get something prescribed over the phone...Well, I am still waiting to hear on that. He is ok and his numbers are ok but he is just not himself, he acts like his stomach hurts for a couple days now, and he has a little diarhea and I think it is symptomatic of a GI bug. I am not sure if anyone has had a stomach bug around him, but even the slightest bug could wreak havoc on him...So keep Payton in your thoughts!
No new news about the benefit but I will keep you posted as I find out...
We are all exhausted..When Payton has rough days, we do too...But I will let you know how he is doing.
Take Care Everyone Deb
hi payton, i miss you and hope to see you soon....i love you little man very much xoxoxox to you....deb, i'll call you tuesday, i got the picture very cute...you are a terrific daughter in law and a good mother... payton is very lucky to have you.........love to all
Hello out there!! Well, Payton has been on his bipap for 2 1/2 days now. He was having trouble with his sats and definitely looked like he was sick and had brown mucus. His GI wouldn't do anything for me unless he saw Payton. I explained to him that was impossible because it was Fri. at like 2 and I can't drive with Payton alone, and my mom was at work, etc.. He told me sorry but even if it's a stomach bug, it will pass...I don't want to use foul language on the board, so suffice it to say that we are going to use a new GI. I told my mom, this is a difficult game we are playing and if you are not working WITH us than you cannot be on the team. Period. I called his pulmonolgist (who I should've called in the first place) and explained the situation and immediately he assessed the patient symptoms and had an antibiotic and steroid called into the pharmacy! That was how it was supposed to work. Thank God for good, caring doctors.... Anyway, Payton seems to be doing better and hopefully these meds will bring him back up to par!! It definitely turns this house upside down when he is not well. This has been the most stressed that I've been in a long time. That doc not helping really sent me over the edge. But, I feel much better now that we got it taken care of. I know that docs just don't do housecalls anymore, but when they know how hard it is for a child they should be a little sympathetic....Other than that, nothing else is really happening..we have been working 'round the clock with neb treatments and chest therapy and coughing etc.. to help Payton. I will keep you updated, have a great weekend! Love, Paytons Family
Hello sweet Payton!! Deb, I absolutely LOVE the new pics & the all new designs on the site! VERY VERY COOL :-) I miss you ALL tremendously! I hope Payton is doing better & I hope you are all holding up ok. Deb, You are the strongest person I know & for you to say you have been very stressed, makes me realize JUST HOW DIFFICULT everything can be. Well, I love you guys & miss you VERY much. Hey Deb, did you get to see "Our show" on Thursday??!! We MUST chat about it! Love you... SMOOCH!!! LYB
Payton we are praying for you Buddy!! Lily sends her best and most slobbery kisses to you and says to get well not just SOON BUT SOONER THAN THAT!!! Deb we are thinging about you too!! Hugs and kisses to you all.
Hello there Freemans!! Keeping my fingers crossed that the meds have kicked in & Payton is starting to feel better....they say it takes about 48 hours on an antibiotic before it starts to kick in but after that you should see a HUGE difference. Damn I hate some of these doctors....don't they freakin' get it by now?? It's 100 % about Payton - come on people it's not that hard to understand. Deb if you need ANYTHING holler. I'm 10 mins away & can be there in a flash....whatever the time. Hope you all got a lil' rest tonight...want you all nice & fresh for your big bar shift tomorrow!! Will see you in the afternoon. Give Payton a smooch for me & the girls...when he's feeling a bit better let me know & we'll swing by for a visit...last thing he needs is to be around kids right now so just let me know. Oh yea~Deven wanted me to ask you if you had any extra pix lying around so she could make you a collage (spelling?). If so bring them to work & she'll be psyched!! Luv ya, Shan xoxo : )
Hey Deb..just checking in and looking to see how Payton is feeling....we had a fun night too going to the emergency room (really didn't need to but you know how it is when things happen for the first time...LOL)..Lily is doing fine now...sleeping on BiPaP (gotta love that thing). Give Payton hugs and kisses from us and I will check for an update later......Amy
Well...I am very happy to report that Payton seems to be on the "upswing." VERY happy. We were very concerned. He has color back in his face and is talking again, he is not 100% yet, more like 60, but being that he was at about 10% 3 days ago, we are all very thrilled. He is on an antibiotic, a steroid, and lots of bipap time to keep those lungs open. I believe that what happened was, Payton got a stomach bug...his stomach was hurting very bad, and he is a "belly breather" so when he was having all these stomach problems, his breathing was surely compromised. It doesn't take much to compromise him and if it goes on for too long (which this did) he is more likely to get an infection(which he did). His mucus got brown and even started to look green at one point. He was as pale as a ghost, with dark circles around his eyes. He then had trouble holding up his sats(because he was having trouble breathing and expanding his lungs) that is when we started him on bipap 24/7. That was about 3 days ago. He now is running 99-100%, which is really good for him, his average was usually a little lower. And he is slowly being weaned off the bipap as he gets stronger. It was stressful, but things are looking good!
Shannon, I really wanted to talk to you about the yard sale and stuff, give me a buzz whenever you get time, cuz it is soooo hard to talk at work! My bar shift tonight was great! My lower back was really hurting. Does that mean I am not used to it or I am just getting old????? Hmmmmmmmmm... Well, it was good and I think we made pretty good money and I was home before 10pm!
Hi Amy and LIly! I read your journal earlier! It seems that you had an adventure of your own this week! Well, thank GOd she is ok. When Payton first started getting plugs like that, we started using the in/ex more religiously and it seemed to make it happen less. They were scary though, esp. those nose plugs, they really breathe more through their nose than their mouth so you REALLY have to keep the nose clear. ANyway, I am glad you guys are home! Take care!
Hi my love Marni! Yes, we must chat! Please call me soon!
Well, I wish I had news about the chair or the benefit or something...but not yet, so keep checking and if you haven't seen the new pics check them out!
Oh, and Deven and Kendall, thankyou so much for Paytons new fish toy! It is already set up and he has been staring at it since I got home! P.S. I would love for you to make a colage for me Deven! I'll get some pics together this week.
Well, thats it for today! Love, Us
Hello everyone! Today was a great day! Payton looks almost 100% and he has all the color back in his little cheeks and he is talking a little and acting like he feels much better! Last night he became a little constipated so he had a couple of hours last night that were a little rough and he let us know it!!! But that problem was solved early this morning and he slept like a rock afterward. We are very happy that he is doing so much better.
I have to go and take care of him but I wanted to post and let everyone know how he is doing! Talk to ya soon! Deb
Hi Payton, I am so happy that you are feeling better and that you look like your old self again. Nothing else really matters you know, until you're okay. I love ya hunny bunny and I'll see ya later. Love, Grandma
Hey Rob, Deb & Payton, I'm so glad to hear Payton feels and looks better! Now that you are feeling better I will stop by for a visit! I have missed you! Deb, I'll call to see when it's a good time to come over. I don't work but I may stop in for a bit tomorrow. I'll see you soon! XOXO, Jennifer
Hi Guys, I'm so glad Payton is feeling better, we were thinking about the little guy. Deb I love the new pics..they are so cute! Give Payton a kiss from us! We can't wait to see you guys at the Wedding! We are very excited!!
p.s. Trinity can't wait until Grunt and Gage have their sleepover!
Well, after a crazy week, Payton seems to be back to his normal, beautiful, talkative and happy self! It has been quite nerve wracking watching him get SO sick, but he is doing great and we are thrilled! I feel very drained, but I guess that is normal...
Hey Jenn, come by soon, Payton is ready for visitors again! Also, I need to talk to you about the benefit on February 9th.
Hi Ryan and Jamie! We are excited too about the wedding! I hear lots of family will be coming down to share your day! We look forward to seeing everyone!
Roz, it was good to talk to you today, thanks for always being so supportive of me and my efforts as a mom. It is nice for me to hear such positive things! You are a great mother in law!
We would like to say a huge thankyou to Michaels' granny and "auntie" for the beautiful handmade hat and the new Clifford clothes! They are great and he will definitely wear the overalls in Disney!
We are hoping to have the yard sale at the end of February, so if anyone wants to help out or get rid of anything, let me know!
We STILL haven't heard anything about the hi-low chair but we will get in contact with them tomorrow, while we are at Physical Therapy and try to find out whats going on!
Well, I am very tired and have a lot of work to do, so I will retire for now, but have a great and healthy night everyone!
Deb~ Always great to see you at work although we don't get ANY time to talk...almost makes me want to work Fri. knowing you'll be there!!! Hey I said ALMOST!!!! Yard sale info...Saturday Feb. 23rd...we can do it at Outback although I know you're not thrilled w/the idea so we can do it at my house instead if that's cool w/you. I live just North of Sample in a heavy residencial area so it should work out fine. Just let me know if that's good 4 u. Otherwise we'll plan a different date....whatever works best 4 u is fine w/me. Pissed about the car seat...what a joke. What were they thinking in sending you that chair?? Christ even I know he can't be at a 45 degree angle. Sometimes people just don't freakin' think...I think we can design a seat for Payton that will allow him the sight of the windows w/the proper restraint and that will allow for you to be comfortable driving. How hard can it be really...it's simple enough. A hard mattress like substance w/3 seatbelts (sort of like a stretcher) that would hold him securely in place the depth of the car cushion. Yea... it could have belts that wrap around the bottom cushion and fasten so the mattress is in place & have the other seat belts hold him in place...you wouldn't even need the regular car seat belts. Damn I think I've got it Watson!!!! Time to put this idea into the works!!!Something that defiantely can be affordable for families w/SMA & easy to use also. Not an impossible project I don't think. Anyway my dear Debbie...so glad to hear Mr. Payton is feeling better thus you & Rob are too!! Give me a call tomorrow during the day & we'll chat about all this stuff...Luv ya, Shan xox : )
Hi Payton! I'm so glad to hear you're feeling better! Big Big BIG kisses from your aunt Amy!!!
Hello everyone! Hi Amy and Shannon! Yes, work tonight was great! I do enjoy being there. It is funny to me how differently I think of work now that I am a mom. I feel that I have absolutely no time to just be ME, except when I am at work or when I am running. So now, I look forward to going to work. I definitely appreciate the break and realize how "lucky" I am to be able to go to work. Thanks mom! I feel so refreshed after, and am so excited to see Payton. ALL moms need a break, no matter if they have healthy children or not...I can see how easy it would be to lose yourself in being a mom and not really have a "self" anymore. My mom told me once that someone asked who she was many years ago, and she responded, "oh, I am Amy's mom" The lady said, yeah, ok, but what is YOUR name? and then laughed. My mom still remembers it, because it made more sense to her than saying her name at the time. THis is not a good thing. ANyway, I'm rambling. My point is, make sure you get time to yourself...all you moms out there. Not only do you need it to keep some sense of "self," but I think you are better able to deal with the things that we have to deal with if you get that break!!! Tell me if you think I am wrong!!
ANYWAY, as you can tell, it is late, and I am getting ready for bed. Payton is doing so GREAT! I am so HAPPY about that! It definitely affects my mood (how he is doing).
OH! The hi-low chair is coming at 10am Friday! How exciting is that??? I can't wait. I believe that this piece of equipment will affect Paytons' life and quality of, more than anything else has that we have gotten! Thankyou everyone! ANd believe me, Payton thanks you too! IMagine how thrilled he will be to be more MOBILE!
The 23rd of February looks like the day for the yard sale, so those of you that want to be involved, let me know, or let Shannon know! Yes, I would love to do it at your house!I really didn't want to do it at Outback. I just don't want to ask for anything more than I already do--they do soooo much, ya know? I am sure that you understand. I start to feel like I am leaning too much. I know you are like--she is CRAZY. But you would feel the same. They REALLY do ALOT for me. ANd the benefit is coming, etc. etc. etc....:-) I love all you guys....Thankyou for everything! Deb
Hey, Payton, Debbie, and Rob!!! Glad to haer things are going well... this website is great... i'm so impressed with everything you guys are doing... Deb, we just got a video camera so I'll record Briannah and send you a tape so you can see her (finally) before we actually go visit there this summer... judging by the messages on this website, Deb, you have become quite an inspiration to many you've never met, and never would have without this webpage... keep in touch... love you all from the Letters out here...
HI DEBBIE, ROB, AND PAYTON,
SO GLAD TO HEAR THAT PAYTON WILL BE GETTING THE CHAIR IN TIME FOR DISNEY.. GLAD TO HEAR HE IS DOING BETTER. HOPE TO SEE YOU AT DISNEY, WE WILL BE THERE ON SAT, AND SUN. WITH RYANS COUSIN BRITTANY.. TAKE CARE TAMMY SAYS HELLO
Hi Low tomorrow! Have a great night and we'll talk tomorrow! Love Deb
Hi Payton, Deb, Rob, and Everyone Else! I'd just like to take this very public opportunity to apologize for my contribution to the (very temporary, I must say!) loss of my mother's sense of self. I dinna meana! Waaaaaaa. Oh well. You know, I don't think I'll ever quite grow up. But that's probably because I'm STILL referred to as "the baby." Thing like that affects yer mind-werks, you know. I love you all and miss you all! I can't wait to see you when Brian and Brittany and I come down for Spring Break. LOVE-LOVE! Amy!
Hey guys! I love the re-vamp on the site. Lookin' really good. I like the new pictures, too. I was upset that Payton got so sick and am happy to hear that he feels much better. Just wanted to check in and say hello. Talk soon.... Anissa
Howdy folks!:-) Yesterday was a GOOD DAY. First, Payton is in great health (knock on wood) and we hope to keep it that way! Second, the hi-low chair came early in the am and it is so perfect for Payton. He can go ALL OVER the house and is no longer stuck like a piece of furniture on the couch. It was wierd, because we are so used to him having to lay on the couch all the time, that we felt like he was more of "person" and not like an object. It was wierd but soooo great and we could tell he really liked it. He was just looking at EVERYTHING and taking in all the different views that he is not used to! We are so thankful to ALL of you that made this possible and we are already in the process of getting pics made and copied to send out! Third, the company that brought the hi-low has a wonderful tech that gave me tips on things and his catalog and just pretty much a good connection to get the things that Payton needs and the "way" to get some of these things. He ALSO, took back the "bath chair" that they gave us (per insurance about 6 months ago) that we have NEVER been able to use, because Payton has to lay his head to the side and the headrest would not allow for this, and could not be made to allow for this! So, we have still been giving him sponge baths for all of his life basically. He ordered a chair more suitable for Payton and is also working on helping us with the deductible for this chair! What a great day!!
As much as you think it could not get any better, I came home from work (I picked up a key shift as a favor to my manager) to find a fax from Nova saying that we were APPROVED for June 8,2002 to hold our event!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Well, I am sure you could all imagine what a great day yesterday was! I am sooooooo looking forward to this years' event! I will be contacting alot of you that have offered to help! Please make sure I have your address if you're not sure if I do, etc...We are getting closer and closer and closer....to a CURE!!!!
Take care everyone and have a fabulous weekend!!!! Love The Freemans!
Debbie, I am so very glad you all had a wonderful day!! It makes the bad days worth it doesn't it? I have been checking out the journal everyday to keep up with you all and I am so glad the hi lo chair is so wonderful...we will be checking it out for Lily..but what is it exactly? I will be looking forward to the pictures of Payton in it. I am working on getting the Tiger 2000 stroller for Lily and WILL get it no matter what...It looks perfect and as we moms of SMA babies know it needs to fit our special children...and I plan on getting Lily out and about this spring and summer as much as I can and I need that stroller in order to do it. Lily is doing great..haven't updated her journal in a few days so I will do it tonight once she is tucked into bed. Glad things are going great for you all...look forward to talking to you once again SOON!!!!! Hugs and kisses to Payton from me and expecially Lily (who loves to look at his pictures when she gets with me by the computer...I need to copy on for my board once I get photo paper..then he will be on our SMA wall!!) Hugs and kisses again!! Amy and Lily