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CommentsHey Deb, Rob, and Super Trooper. Good to hear the event is going well, and yes EVERYONE is plenty psyched about it. I've got 3 guys for the security and I will be seeing my entire unit in the next 2 weeks so ill be getting about 3 more hopefully. As for my mom, she is still bugging her boss. but he's a cheapskate. but hopefully perseverance will pay off. Well off to go do some errands, I'll see you at work this week probably. Adios guys! Murph
CommentsI feel so special I am the 1st entry on the new page!
CommentsJust wanted to let ya'll know Debs computer is on the fluke so she's having a hard time getting online. She said Payton is doing great...I saw Deb today. We are in need of items for the live auction.. that would be the higher money items such as new furniture, signed sports memorabilia, appliances, etc. Please please put your thinking caps on. Do you know of anyone who owns a painting company? A travel agency? A fishing boat? Anything that is normally a high priced item that most normal "blue collar folks" (like me) just don't have the extra cash for ie: a vacation, plane tickets, a deep sea fishing trip, someone to re-paint their home, etc. Think gang Think!! Have a great day all...XOX Shan
Commentshey little man.. Wow! You are so popular that you have filled up another one. At this rate you will have the most popular page. :) Just checking to see how you are doing and I hope that your computer gets fixed soon. I will see you on Thursday. Love always, Jen xxoxoxo
CommentsWELL Halelujah, or however you spell it..We are back ONLINE!! Thankyou to my husband for not losing his mind during the DSL Nightmare and getting it all taken care of!! I am going to the PRINTER tomorrow to get things started on the auction booklet..IF you would still like to put a personal message to Payton or our family in the auction booklet/or an advertisement for a business in the auction booklet, please email me right away and I will make sure it gets in the book...If you just get me the message, I can get in the book!! You too, grandpa!! Sorry it took so long to get you your invitation..It has recently come to my attention that some of the people that are listed under "A" and "B" in my address book(I go by FIRST name) have "missing" or "missing in action" invites...They were sent, but never made it to where they were going and never came back to me..Ahhh, the good ol' US Mail..As my dad says..."We're a little riskier, but a LOT cheaper..." Well, if for some unknown reason you have not received an invite and should have, please let me know right away and I will get it out to you!!! I want to send out a HUGE thankyou to EVERYONE that is helping out with the benefit this year...YOUR EFFORTS ARE AMAZING...Everyone has been so great this year, I don't really know where or with whom to begin, but you ALL know who you are, and I CANNOT THANK YOU ENOUGH...I really cannot...This thing could have happened to anyone, and I feel lucky that I have such a HUGE support system of people that are rooting us on and selling pins and talking to EVERYONE about sma and Payton and really truly believe that we can make the difference for Payton and the TWENTY FIVE THOUSAND OTHER CHILDREN LIVING JUST IN THE USA WITH SMA THAT ARE EXPECTED TO BE DEAD WITHIN TWO YEARS...Yeah, I know, I am a little dramatic sometimes, but it is the truth, so be sure to let people know what is going on, that we need help and that we are counting on them for support, because it is ALL ABOUT MONEY---EVERYTHING COSTS MONEY--INCLUDING THE CURE FOR SMA....AND it all adds up fast...EVERY DOLLAR COUNTS!! Shannon has been selling candy and muffins in our store for a couple of weeks and has already raised almost a HUNDRED DOLLARS for sma...Think about what you can do to help or who you know that can donate or come to the benefit, etc etc..etc..and let me know who to talk to and LET'S MAKE THIS THING HAPPEN ALREADY!!! Payton is doing great, but he cannot survive like this forever...docs are already amazed that he has done THIS WELL for THIS LONG...Think about that.. and if that was YOUR BABY or YOUR NEICE or YOUR NEPHEW or YOUR GRANDSON, because it could be...ONE IN FORTY PEOPLE CARRY THE RECESSIVE GENE FOR THIS DISEASE....OK...Enough for one night..You should see me when I REALLY get on a roll...:0) Good night.
CommentsHey Deb, Rob and Payton! Everyday I go take a look at your journal and I am always amazed by the number of people that help for the benefit! Actually, I am doing my best here, in France, and I found out that we also have an association for SMA...so some people told me that if they wanted to donate, they would do it for French people...I can understand that so I didn't say anything but the thing is that it will reduce MY donations for YOU. Nevertheless, I will go on doing my best for you. Deb, I am so sorry I didn't wish you a happy mothers'day because we don't have the same date for it (here, it will be the 26th of May), but you know, as you REALLY deserve it, I will tell you this: Deb, as you are the most amazing mom I know, I wish you the merriest life you could ever think of, because you deserve more than just a day. I will see you in a month. I hope you will get a lot of money donated the 8th of june, so I wish you good luck and have a great time everyone! Give a kiss to Payton for me. LOVE! Sophie
CommentsFirst, I want to say that I LOVE the new format on the journal!! Thankyou LAURA!! We have really been overwhelmed with all that we are doing lately...WORK... THE BENEFIT...PAYTON...PAYTONS THERAPIES...NURSING...MEIDCAID...THE BENEFIT....OH, AND THE BENEFIT....It has been NUTS to say the least!! Everyone is REALLY helping us SO MUCH though, so THANKYOU GUYS!!! WE love you!!! I must get Payton to bed...He did not sleep barely at all last night, and he is looking a little rough right now, so I must take care of him, but just wanted to let you know that all is well, and we are really looking forward to this benefit, and oh yeah, THE CURE FOR SPINAL MUSCULAR ATROPHY...Have a GREAT NIGHT...P.S. Another sma mom contacted me recently wanting information..Her son is 3 months old, and was diagnosed last Monday with sma type 1.. She lives in Boynton Beach.. This is very difficult for me to hear, and it is very difficult to talk to a "new" person, I feel so sorry for her and she doesn't even know what is coming or how crazy this thing is...BUT, I will do EVERYTHING I can to help her because I know what it feels like to be there.. with no advice from docs, and no one but another sma mom to turn to for info... And hopefully Joshua will live to see the cure.... A few months ago, I talked to an sma mom that lives in Davie, and she did not want to use the bipap or inexsufflator...She told me that she had called hospice and they would be coming in a couple of days...A few days later I got a call from FSMA telling me that Caitlyn had passed away the night before at about 10 months and the family wanted other sma parents to know...This disease is not talked about like it should be, but nonetheless, these babies are DYING.. Make sure you are spreading the word.. it is the only way to stop the RIDICULOUS IGNORANCE OF SMA...ONE IN FORTY PEOPLE ARE CARRIERS.
CommentsDear Rob and Debbie, I had the pleasure of meeting Payton when my boyfriend Jerry and I picked Roz up from your house when she came down soon after he was born. He was, and still is, a beautiful little boy, and the two of you are AMAZING parents. I hadn't heard from Roz, with whom I've been friends since Ryan was about 4 years old, in a few months, until I got an email from her this morning. I immediately checked out your web-site. I can't tell you how touched I am by Payton's story, one, because he's an innocent child, and two, because it so closely parallels something my own family has been going through since November of 2000, when my nephew's daughter was born. Payton is so very lucky to have the network of caregivers that he has, starting with devoted and loving parents, and he is truly a courageous little boy. I will check his progress through your lovely website, and I will pray for you all daily. Sue Spruce
CommentsHey Guys!! Payton... you were cuter than ever yesterday :) and i had a great time watching The Emperors New Groove. Well i just wanted to say hello.. i must go get ready for work :( Tell mommy and daddy to have fun tonight :) Love always, Jen xoxoxo
CommentsHello Debbie..I have not fallen off the face of the earth but we are FINALLY starting to get settled back in after the surgery. I am thrilled things with the fundraiser are going so well and I am sure things are hectic for you right now but we are rooting you on here in Kentucky!! We DO NEED THAT CURE!!! To many children ARE dying from this horrible disease! Debbie I am SO PROUD OF YOU ALL FOR TAKING THIS ON with all you have going on besides. Payton has such wonderful parents! Keep up the good work!!!! Hugs to you all.
CommentsI have NOT been ignoring my journal~~ Just TOO BUSY to get to writing in it!!! Really, things have been crazier than ever--with the benefit in just two weeks, and LOTS OF LAST MINUTE details! Not to mention, we are in the middle of all the last minute social security stuff (keep your fingers crossed on that one) etc etc... I have some GREAT NEW!! Thanks to our very persistent friend Dionne, we are going to be interviewed by Channel 10 on Tuesday and they will be doing a story on SMA and Payton!! It should air the week of June 3rd, so I will let you know when to watch!! We are SO EXCITED about this for obvious reasons, but we cannot really explain just how GREAT it will be to spread sma awareness on the NEWS!!! This is what we have needed for sma for SO LONG!! ANd hopefully, it is just the beginning of the awareness that we will spread as time goes on!! We also taped most of our video with Mike Froitzheim.. He is doing the short movie about sma and Payton for his school project with the Art Institute, and we met for that yesterday, and he also got to tape Paytons' physical therapist over at the hospital (Susan) and will be getting ROb over at his shop next week!! We are very excited about this, it will most likely be our video for the benefit, (if it gets done in time) and if not, we will use it next year!! THANKYOU MIKE!! AND CHANNEL 10!!! Payton is doing great! Thanks for writing Sue, and Jen, and Amy and LILY!!! We hope that you are all doing well!! We are looking forward to meeting Dr. Bach for the first time too! He will be speaking about sma at the benefit! VERY EXCITING stuff going on here!! If anyone needs ANY info about the benefit, email me right away!! It is 14 days and we are counting down!! Work was dead tonight, I guess lots of people are away for the weekend... Paytons nursing has been cut by insurance to our all time low.. 28 hours of nursing per WEEK.. So we are really praying that social security comes through.. If it doesn't.. We are in big trouble.. Love to you all and THANKYOU EVERYONE THAT IS COMING TO PAYTONS' BENEFIT!!!! IT MEANS THE WORLD TO US AND OUR FAMILY AND OF COURSE, MOST IMPORTANTLY, TO OUR ANGEL, PAYTON!! :0) Goodnight.
CommentsJust wanted to say hello & send my love to Payton & the entire Freeman clan! I leave for Chicago tomorrow morning at the "crack" with my Dad. Please wish us luck. I will be back Wednesday, very late. I will see you on Saturday at the benefit-can't wait to see everyone. XOXOXO Marn
CommentsHELLO FRIENDS AND FAMILY!! We would like to announce that RYAN AND JAMIE are having a BABY!!! CONGRATULATIONS GUYS!!! We are so happy for you and we know you will be great parents!! It is a lot of work, but there is no greater joy than being someones' mommy or daddy.. Definitely not!! We are SO HAPPY that you were tested for the sma gene early and that you were both SO RESPONSIBLE in making sure that Jamie did not carry the gene before she got pregnant! I only hope that the rest of our child bearing family does the same!! Now, Ryan and Jamie cannot have a baby affected with sma, but they can have a baby that is a carrier of the sma gene, just like me and Rob and Ryan.. Their baby can be tested when he/she is ready to have children (or whenever Ryan and Jamie want to have them tested--if they so choose) and see if they are a carrier and if their spouse is a carrier.. See how it works?? Rob and I are actually talking about future fundraisers where we raise money to do dna testing on women of childbearing age, to let them know if they are carriers (since one in 40 people carry the gene, we figure we will help quite a few people) and since you cannot get the very expensive test unless sma is ALREADY in your family, it would be a great help to so many women/families because once it is detected in their family, insurance pays for all testing in that family from there on out...The test is almost a thousand dollars! ANYWAY, we are thrilled for Ryan and Jamie and you have to call me soon Jamie and tell me everything! I have got lots of maternity stuff for you and anything else you might need, just let me know! We are very excited for Tuesday, as I am sure you all imagine.. Payton is getting his haircut for the big interview and he should be looking pretty darn cute, as usual!! :0) Wish us luck!! Marni, We miss you very much!! And we are praying that all goes well for your dad in Chicago.. Please call me as soon as you get a chance, and let me know how things are going.. AND HAVE A SAFE FLIGHT!!! Payton had physical therapy yesterday and today (his least favorite thing to do) and he will hopefully start Occupational therapy with his new therapist this week.. We are trying to coordinate speech with Eileen til we find a new therapist organization to do speech with, because the one that we work with now, cannot find anyone that will do afternoon appointments.. I think that is it... If anyone needs any info about the benefit, please email me or call... Love to everyone, Goodnight.
CommentsWell, tomorrow is the big day! Be sure to keep your fingers crossed for us!! We are definitely nervous! Well, I am anyway.. I am not sure about Rob, and Payton seems fine with the whole thing!!! He is wearing his very cute new outfit from Childrens Place and he is looking so HANDSOME!! I have been cleaning and straightening all day! Thanks for all your help MOM!! I figure we're going to be on TV.. We better tidy up!! I got to talk to Jamie today and they are SO EXCITED!! We look forward to having a little neice or nephew to have over and SPOIL!! I am calling social security tomorrow, and just mentioning that we will be on the NEWS, in case they want to let us know if we are eligible or not, since it has been THREE MONTHS!!!!!!!!!!!!!!!!We are VERY EXCITED about the benefit!! And looking forward to seeing everyone!! Let me know if you need ANYTHING!! Talk soon. Love, US.
CommentsHey guys...I just want to say Thank You for Congratulating me...We are soo excited...I know you've been here cuz we were thrilled when you were pregnant deb. I can't wait!!! Payton will have a cousin close to home..I know his misses his cousin Ashley! We all do! Well we will see you soon! We love you guys sooo much!! The Withey's
CommentsHi Freemans!! So very glad to hear that all the bugging & persistance has FINALLY paid off!! Good luck today Deb w/Channel 10 (you're a ham anyway!!) so you'll be fine!! Spread that awareness!! It'd be good to mention something about the nursing problem you've been having...maybe that'll help get it straightened out once & for all. I'll keep my fingers & toes crossed for you. Please give Lil'P a kiss & a hug for me. Luv ya, Shan xoxox
CommentsHey Guys, just writing to let you know that I am really looking forward to the benefit and can't wait to see the little guy all dressed up again. I hope all is well at the house and Rob if you run out of space for the Star Wars stuff I will be glad to "HOLD" it for you. Anyways, give Payton a big kiss on the head for me and tell him that I can't wait to smell those lovely feet again. "HERE RYAN THEY SMELL LIKE PEPERMINT TAK A WHIFF" Thanks big brother I appreciate it. Payton will have a little cousin to hang out and watch movies with soon. Love you guys and talk to ya soon RYAN WITHEY
CommentsToday was our interview with Channel 10! We think it went well! I only got choked up once and I think I gave a TON of info about sma.. I mentioned insurance and nursing issues with social security.. I talked about the disease what it means and just HOW MANY kids are living with sma, and how lots of sma deaths are written off as SIDS and miscarriages, etc.. Payton was SO CUTE, and did VERY well. He only desated once and that was for mucus, so he got suctioned, a little bipap blast and he was fine.. They had footage of Rob kissing Payton and me on the computer:0) and of Rob and I looking at pics of Disney.. We are hoping that this really generates some awareness about sma and of course, helps with the benefit!! Keep your fingers crossed that it comes out GREAT!! I got into an argument with the social security lady today. I really kiss a lot of butt when it comes to those people, but I just couldn't take it anymore today, when she asked me for yet MORE INFORMATION.. I was like "How long is this going to take once you have gotten what you need?" She says, "well, I don't know" I say "well, this is ridiculous because I have all but lost all nursing through insurance" And she says TO ME " Well, Debbie, we have given you FOREVER on this and..." I said "EXCUSE ME? YOU HAVE GIVEN MEEEEEEEEEE FOREVER???" "NO! I HAVE GIVE YOUUUUUUUU FOREVER AND YOU STILL HAVEN'T FIGURED IT OUT YET--YOU SHOULD HAVE TOLD ME BACK IN FEBRUARY EXACTLY WHAT YOU NEED FROM ME AND MAYBE I WOULD HAVE NURSING BY NOWWWWWWWWWWWWWWWW!" I don't know if you have ever been through any kind of bureaucratic BS, but if you have, I am sure you feel my pain.. I told her that I did not want to get in an argument with her, but that she needed to call Rob, get EXACTLY what she needs, and get this thing expedited, because this is RIDICULOUS. We are talking about the welfare of a child!!! She wasn't happy with me, but apparently her and Rob were fine and she is going to call him tomorrow and try to get this worked out. She TOTALLY acts like we are full of crap and that we don't deserve one penny of her/the states money.. This system is total BS. If someone is sick, they DO NOT automatically qualify for help.. THEY MUST BE DESTITUTE. I don't mean barely making ends meet.. I mean DESTITUTE. And you MUST get into this program to get help with nursing!!! Nursing costs over 100,000 a year... Why would someone that makes less than that or a family that makes less than that, and has met all the medical requirements for "need" be denied??? I don't get it. I think I am going to write to my state legislator and try that avenue, because this is why people die, and why people suffer, and why people do NOT GET HELP. The people that are the MOST NEEDY in this country.. The SICKEST ones, are the ones that we do not help. THey are the ones that are at some friend or family members mercy and slowly suffer from not enough care, etc.. and do not get the care or medication, etc.. they need. No one deserves this crap, esp. some innocent little baby or child. DON'T YOU AGREE?? We are trying to make a difference and even though these things take a long time, we are in this for the long haul, and we plan to do what it takes to get these children what they need, and change some things along the way. WISH US LUCK!! And be sure to write a letter to YOUR state representative, if you have the time, and ask them WHY LITTLE PAYTON DOES NOT HAVE NURSING CARE YET????? Thanks.. ANYWAY, I could go on and on and on but I will stop for now! Just want you to know that Payton is well. Last night he had a pretty thick mucus plug and WHILE ON THE BIPAP started to desat (he has not done that before for mucus) and so I suctioned him and calmed him down, and he was ok, but it was really wierd to hear the machine go off and start beeping WHILE HE WAS ON THE BIPAP. VERY weird. I was a little nervous honestly, but he was fine all day and his mucus seems to be ok, so I am not panicked. He was so cute today and his numbers are good. He is sleeping now, and I guess we don't have a nurse.. I am not sure.. We only have about 6 minutes of nursing per week now, so who knows.. Hopefully Rob will get that whole thing straightened out because I feel that this person has really just tried to hinder our efforts and maybe even hold back info on purpose. I know that sounds crazy, but look how long this has been going on! Since FEBRUARY!! On a happier note, we are so THANKFUL for everyone one of our friends and family and everyone that is helping with the benefit.. You ALL have been AMAZING this year, and it has not gone unnoticed.. I told Channel 10 that our friends and family are the ONLY ONES that have come through for us, and that they are the ONLY ones that we can depend on!! Even though we spend $600 a month on insurance for Payton and tons of money in taxes.. The real help comes from you all! We LOVE YOU & Goodnight!:0)
CommentsMiss Deb,Rob, and Super Trooper(or Mr.TV celebrity should i say?)Glad to hear everything went well with the 10 people,cant wait to see it on the idiot box.Anywasy we missed you at the picnic today Deb,we had a BLAST.But you had bigger fish to fry, just like i hope we fry those social security rat bastards. We should really bring back tar and feathering and public punishment for people like that.(ok snapping into Marine mode,breathe, breathe.) ok good now.Sorry i missed your call yesterday but i called back and "met" your mom in modern day fashion over the phone, sweet lady. So if you need anything feel free to call me tomorrow i will be at base in the AM, and at outback in the PM but ill have my cell on me. so gimme a holler. I guess the theme for the day is long entries so ill stop now, lol. Talk to ya alter fellas. Lots of prayers,Michael Murphy.
CommentsHey Deb, Rob and Payton, even if I love the States, I have to say that the social security system is goofed up...I don't understand why they do not want to help. The USA is a very wealthy country though, the first power in the world, so I DON'T get it...Why do they NOT care at all for their people health???? In France, you wouldn't pay anything at all so I'm not used to that...Anyway...that's the way it is but I hope things will change because as you said, it is VERY ridiculous. In any case, here, people DO really care about your little Payton and I receive money for him that I didn't even ask for! That's great and I am very optimistic. Tonight, I will meet my cousin (who by the way was Bush's bodyguard 2 days ago at Omaha Beach) and will tell him about Payton. I will also tell him, that next time he will meet Bush, to tell him that his people need financial help! lol...but when you meet so influencial people, it would be interesting to take some profit from the situation, am I wrong??? People do not meet the President of the USA everyday...:o) Anyways...I hope that you will invite us to watch the tape of channel 10!!! and also the Benefit's tape! AND TELL YOUR PARENTS THAT WE THANK THEM SOOOOOO MUCH FOR LETTING US STAY AT THEIR PLACE!!!!! I hope that we will come to the USA with a VERY thick envelop for you and FSMA. LOVE to you all and take care! Sophie
CommentsHi there, This is my first visit to Payton's website - how beautiful you are little Payton. I hope to meet you soon. You may be 22 months, and I may be 32 years, but we have a big thing in common - we both use a bipap and it's probably saved both our lives. Keep fighting! To your parents - after reading your story I was both horrified by the ineptitude and attitude of some of the medical staff you experienced. Noone should EVER be treated like that. You two seem like really special people - best of luck with your fundraiser, I'm sorry I will be up north, I would have loved to be there. Take care, Daniella
CommentsOK, the big day is coming!! 9 days left!! I am SO EXCITED right now!! We just found out that Paytons' interview will be airing TUESDAY JUNE 4TH at 5:30!!!! Be sure to watch!! We are also working on lots of things with the benefit and a new doc in Miami that is doing research on sma!! I will keep you all updated as it goes on!! SO MANY LAST MINUTE DETAILS!! Still more stuff coming in for the auctions!! And again, if you need ANY info about the benefit--directions, etc.. just email me or email me your number so I can call you!!!! P.S. PLEASE no cursing on the board!! I love you guys and believe me I get caught up in the heat of the moment more than ANYONE!!! But, this board is alot more public now, and I want it to be "G" rated!! Thankyou for respecting this!! And if you REALLY want to curse, CALL ME AND VENT!! :0) I would like to wish Shannon a SPEEDY recovery--she just underwent surgery the other day and is at home resting comfortably until she is back in action!! All is ok, and if you would like to wish her well, her email is SBeatty195@aol.com Also, for those of you that will be volunteering.. We need you to be at NOVA by 5:00 pm!! If you need help with directions call me and let me know!!! THANKYOU SO MUCH and be sure to be watching Tuesday!! OH, P.S. We also have ads in todays City Link and New TImes!! Be sure to pick one up!! Oh, and in the Herald Happening in THe Miami Herald!! There may be more, but I will let you know and you should here something on a few of our local radio stations! They will be running PSA'S about the event!!! Take care everyone!!
CommentsHI GANG!! THANX FOR THE GOOD WISHES!! THANX TO YOU & LORI M ALL IS WELL....SOMEONE'S GOTTA LOOK OUT FOR ME!! DAVE'S HEADING TO HURRICANE RACING SAT. TO GET THEIR AUCTION DONATION(KEEP YOUR FINGERS CROSSED FOR SOMETHING AWESOME!!). ALSO GETTING W/DEBBIE FROM PURPLE POODLE TO GET HER DONATIONS. SO TOTALLY STOKED ABOUT THE TV INTERVIEW & ALL THE NEWSPAPER ARTICLES...AWARENESS HERE WE COME!!! HOPE TO SPEAK W/YOU TOMORROW...GIVE LIL'P A SMOOCH. LUV YA, SHAN XOXOX
CommentsHello friends and family!! Payton had his first visit with his "teacher" today!! She is a homebound teacher that works with kids up to 3years old(then they become part of the public school system), and she was WONDERFUL!! I absolutely loved her and she will be great with Payton!! He has SO many girlfriends lately!! In case you haven't heard, be sure to watch CHANNEL 10 on Tuesday June 8th at 5:30!!!!!!!!!!!!!!!! Payton will be on the news!! And mommy and daddy too, but he will be the STAR!! I am really excited to spread awareness, and this looks like it may be the beginning of getting south florida AWARE!!!! Wish us luck!! Maria Bailey, from Momtalkradio.com will be doing a live interview with us next Tuesday at 9:45 am so if can, tune in to am radio at oh goodness, I forget, I think it is 1407 or 1470.. I will find out and get back to you!! I would like to say one BIG OFFICIAL THANKYOU TO DIONNE FOR BEING SO PERSISTENT WITH THE TELEVISION STATIONS AND FOR WRITING SUCH A GREAT LETTER!!! Thank goodness Channel 10 took an interest and Amber Statler is absolutely fabulous!! She was our Channel 10 interviewer and she was lovely! And then she went out of her way to hook us up with Maria Bailey and also found us a doctor at University of Miami that JUST GOT A GRANT TO WORK ON SMA RESEARCH!! This doc should also be in the interview next week!! All of this is so exciting and SO BIG FOR PAYTON!! AND ALL SMA AFFECTED CHILDREN!! WE ARE MAKING A DIFFERENCE!!:0) So, make sure you watch CHANNEL 10!! I want everyone to know that Shannon is recovering well from surgery!! We all wish her a speedy and healthy recovery!! Well, super busy lately but can't wait to see you all next week! Be good, and goodnight!!
CommentsSorry, just a little excited I guess!! The radio station is WFTL 1400 and it will be Tuesday at 9:45 am on the 4th!! The interview with the news is the SAME DAY at 5:30!!:0)
CommentsSorry, just a little excited I guess!! The radio station is WFTL 1400 and it will be Tuesday at 9:45 am on the 4th!! The interview with the news is the SAME DAY at 5:30!!:0)
CommentsHey out there! Be sure to check out your Showtime in the Sun Sentinel today.. We are on page 39!!! Wow, huh?? Dionne has been working feverishly with print ads and we may (if we are VERY LUCKY) eventually get Sun Sentinel to do a story on Payton/sma!!!!Keep your fingers crossed on that one!!Talk soon.
CommentsHey Guys! If all of this keeps up Payton and SMA will be a well-known thing. And that is what we all are hoping for. Only 1 week until the benefit, I am so excited. I will see you guys soon. Love always, Jen xoxo
CommentsHI everyone! We are swamped!! Totally nuts, but very excited for this weekend! And for tomorrow!! We will keep in touch, so have a great week!!!!!!!!!!Love, Deb:0)
CommentsHello Hello Hello!! We are SO HAPPY with the Channel 10 interview!! Unfortunately they told us 5:30pm and so we told the world to watch and tape at 5:30pm, but the segment aired at about 5:20pm.. We fortunately caught it because we were watching ahead of time, but I am sure most of our friends and family missed it.. SO, we have a tape of the broadcast and will pass it (we actually are making a few and my sister is putting it on the internet..) around so if you want it, just let me know! It really was great!!! Thankyou CHANNEL 10!!!!!!!!!!!!!!!!!!!! And Amber Statler!!!!!!!!!!!!!!!!!!!!! The radio show was short and I was very nervous but we got the word out about the interview, the benefit and SMA... We are EXHAUSTED but SO EXCITED to raise money for a cure!!!!!!!!!! WE NEED TO FIND A CURE FOR THIS DISEASE!! Jump on the bandwagon (if you haven't already!) and help out!! This is a good cause!!!! Love to you all! The Freeman Family:0)
CommentsHi Gang!! I turned on the news last night around 5:25ish & watched & watched,but unfortunately I missed the interview :( If there are any others out there who missed it (I thought it was on at 5:30) you can go to the channel 10 website & read it. www.click10.com/health/kristisgoodhealth/index. the title of the article is: "Little Boy's Genetic Disorder Leads to Fundraising Effort".Pretty informative & there is a link to the FSMA website as well as to Payton's site!!Deb I hope you taped it!!How's it feel to be a TV star?? I hope this brings alot of attention to SMA as well as the benefit...I'm keeping my fingers crossed!!Looking so forward to Sat.night w/high expectations for research money...they said we're close to finding a cure & just because the benefit is over on Sat. doesn't mean our efforts to help find a cure are over.More carwashes,garage sales,bake sales, etc. to come!!Not just for research money but also for the families & children who suffer from SMA. Christmas will be here before you know it & honestly we all know that Deb,Rob & Payton aren't the only family who are having a horrific time getting what they need for their child...I think we should earmark some of the funds we raise to go to these families who are in need.Whether it be food for a month or a piece of equipment or the all time favorite in the Freeman house a new DVD or tape. Sort of on the same idea as "Toys for Tots" but we help a specific SMA child. I'm sure I'm going overboard(remember I'm Deb's friend & we luv to ramble on & on!!)...but anyway....Congrats & way to go Ms. Debbie!! My hat goes off to you again & again you are a total inspiration to me & have made me be a better mother to my own children.Totally think you're the BOMB!! Luv ya, xoxox Shan (Smooch to Payton please!!!!!)
CommentsHi Debbie, Rob and Payton, Looking very much forward to The Benefit Saturday! I'm sorry I missed the Channel 10 interview, but a great write-up on their website! I am forwarding to everyone in my office! Just a quick note to say hello and look forward to a successful fundraiser. See you soon. Love, Pamela
CommentsWOW... What a wonderful segment on sma.. I can't get over how well put together it was, and if you haven't seen it.. Please click on "on the news" right here on this website thanks to my sister AMY, her boyfriend BRIAN and of course LAURA STANTS!! ALL computer GURUS!! We have been so very lucky to have such great family and friends and we know that you are all in it for the long haul with us and that we have your full support and it means the world to us.. IT REALLY DOES.. We COULD NOT DO THIS WITHOUT YOU!!!!!!!!!! I am so excited for this weekend and I am really excited to see everyone!! I have to go and take care of Payton--NO NURSE AGAIN!!!!!!!!!!!! But, take care everyone and THANKYOU!!!!!!!!!!!!!!!!!!!!!!!!!Love Deb Rob & little P..........P.S. Shannon, rambling is the best thing in the world isn't it??? I don't know what would happen to me if I couldn't ramble on and on and on!!!!!!!!!!!!!!!!!!!!!!I am so looking forward to doing EVERYTHING you talked about and PAYTONS PALS is just around the corner and then we really rock the boat!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
CommentsHey Deb, Payton and Rob. I just wanted to drop a line and say that I saw Payton on the news thanks to Amy and Brian, thanks both of you! Debbie, you looked great and Payton too. We barely saw Rob...but it was very moving and I hope that a lot of people watched it. I sent a copy to my friends so that they will know more about SMA and its damages on little babies. Matt and I can't wait to see you guys and I hope we will know each other a little bit more. Once we get to Mia, we want you Deb to ask anything you want from us...ie if you need help or anything else, don't hesitate, ask us, and we will be delighted to be members of your team! :o). We are unconditionnaly devoted to your little son. We want to fight at your side. LOVE TO YOU ALL!!!!! Sophie
CommentsHey everyone!!Just wanted to let you know that the awesome folks at the Puppy Connection here in Coral Springs have not only donated a yellow lab pup for the benefit but also an all white poodle. He's 7 or 8 months, still just a pup!! Wanted you to know there are 2 precious lovable pups availabe to take home, complete w/his or her own doggie package. How wonderful is that!!!! So many totally cool items up for grabs....I'm soooo looking forward to a wonderful evening of good times, but mostly I can't wait to see the money we bring in for research. Although I don't get to see Payton every day I do speak w/Debbie almost everyday & they have become part of my family so I look at this benefit & all the effort & hard work put into it by everyone as helping out a memeber of my OWN family. How can you not just love the Freemans & want to do anything & everything in your power to make Payton better & to help spread awareness & to save 1000s of childrens lives. Sometimes it amazes me that all of this existed right in front of my own eyes but I never knew it was out there until someone spoke to me and made me aware that crap like this really DOES happen to real life people not just in the movies.I know from all the effort that's been put into this benefit that most people feel the same exact way and I think it's truly amazing that such a rotten disease could unite so many hearts together for the same reason.Thanx to everyone who has clicked onto this site,had the nerve to ask a question,asked for a donation,sold a SMA pin,given their time, effort and energy into making this benefit kick butt!!! Can't wait to see you all Saturday night!! Luv ya, Shan xoxox
CommentsHey Guys!! Shan i could not have said it better myself. :) We WILL find a treatment for this thing and saturday night will bring us another step closer!!! I love you all! xoxo Jen
CommentsShan, I couldn't have said it better myself either!!!!!!!!!!!!!!!!!!!!!!! See you all tomorrow!! CAN'T WAIT!!!!!!!!!!!!!!!!!!!!!!:0)
CommentsWe at Firstat are very excited about the wonderful event Saturday night. Some of Payton's nurses, his Coordinator and of course his favorite Casemanager will attend. Debbie....you are an inspiration to all..AL
CommentsHI!! Thanks to Maria I have finally got some decent directions to the benefit!!! Take 595 West to University Go south (left) on University Make a left on SW 30th Street Make a right on SW 75th Avenue The Athletic Center is down on the left! There will be signs in the ground (thankyou KELLY!) by noon so you will also have something to follow!! See you all there!!!!!!!!!!!!!!!!!!
CommentsHello Debbi, The time is near... the benefit is finally here!! Michael and Rob are still at the shop, so I just wanted to let you know I am here for any last minute requests you may have... just direct connect me if you need anything. I am just sitting here thinking what a super Mom you are, you are an angel too! Please keep up your super Mom strength, get a good nights sleep and kiss Payton for me and Michael. I know tomorrow night will be an awesome time and everyone will dig deep into their pockets to help find THE CURE! Good night and Sleep tight, see everyone tomorrow. Love, Pamela
CommentsWow payton sure is a handsome fella! i just downloaded the newsclip and it sure was worth every minute. it was very well done. congratulations and good luck with teh fundraiser this saturday!
CommentsHello Payton, Debbie & Robert, Well I'm in New Jersey and sad I can't be there with you tonight. My thoughts and heart are definitely there with you. I pray that tonight will go beyond anything we can hope for and will bring SMA that much closer to a cure. All my love to you Payton, I was hoping for new pictures I bet your a big handsome boy now. Maybe we will get to see some Birthday shots after next month (Mom, Dad Hint, Hint). Anyways things are going well up here and I'll be back soon to hear how everything went. God Bless, Robert give Michael a BIG hug and kiss for me!! Love, Lisa
CommentsWOW!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! What an amazing event!!!!!!!! I could go on and on about the details but I am exhausted, so I will write all the details tomorrow, but I can tell you that it went wonderfully and everyone had a good time and we raised more money this year than last (I do not have a total yet--hopefully will in the next couple of days!) We are putting the video together so that is a PR tool, and something we can use to show people just what we are doing down here!!! I can't wait for the next project but am thrilled to have a few days of R&R! THANKYOU EVERYBODY!!!!!!!!!!!!!!!!!!!!!!!!! WE COULD NOT HAVE DONE THIS WITHOUT EACH AND EVERY ONE OF YOU!!!!!!!!!!!! EVERY DOLLAR COUNTS, AND SO DOES EVERY MINUTE THAT YOU SPEND THINKING ABOUT PAYTON OR FIGHTING THIS FIGHT WITH US!!!!!!!!!!! YOU ARE ALL INCREDIBLE!!!!!!!!!!!!!!!!:0) :0) I would like to send a special thankyou out to all of you that worked tirelessly and volunteered your valuable FREE TIME to help me with so MANY details of this event!!! The reason we were more successful this year was because of the countless hours you all spent spreading the word, selling pins, getting DONATIONS!!! and constantly offering your help!! IT IS ALOT OF WORK TO ORGANIZE SOMETHING LIKE THIS, and I was really overwhelmed in the end, but came through because of all of YOU...................That is pretty darn cool.
CommentsHey Guys!! Last night was truly amazing!!! All of the hard work that everyone put in really paid off. So many people came i couldnt believe my eyes, and all to help kids like Payton. I will see you soon payton:) love always, jen xoxoxo p.s. Hi Robbie!! :)~ How are you heels??
CommentsI was really touched by your story, I have 3 kids of my own so I could imagine what you must be going through. Payton is a beatiful child I know god will help you, just have faith. There is always a higher power. God bless you.
CommentsDebbie - What an amazing night!! I can't wait to hear the grand total! And I just wanted to say what an amazing support team you have! Everyone that gave of themselves to pull this wonderful event off was so unbelievable. Working with everyone on the benefit was an amazing experience and I really want to thank you for the opportunity to help make a difference and to hopefully speed up the process of finding a cure! You and Rob are amazing and inspirational people and I welcome the chance and the challenge to work on more events and to raise as much money and get as much exposure as we possibly can!! Payton is lucky to have you guys and so many who are fighting for him!!! Kisses! Dionne
CommentsHELLO! HELLO!! I hate to make everyone wait, but we still do not have an exact total! I can tell you this though.. It looks to me that it is just about $50,000!!!!!!!!!!!!!!! Well, it was a wonderful night.. Payton was such a trouper and did SO WELL and we had such a good time and we had another SUCCESSFUL sma fundraiser!! We are feeling so good about all of this, and have ALL OF YOU to thank for this!! This is all about saving these children from sma and dying some horrible death, and I think that we are making a difference!! We are really going to rock the house with Paytons Pals and we hope that you are all in this with us for the long haul, because we will not stop until we find a CURE FOR SMA!!!!!!!!!!!! If you haven't already and are checking out this website for the first time, now is the TIME TO GET INVOLVED!! THIS IS THE CHARITY TO BE A PART OF!! We are 100% volunteer and 100% non-profit.. THAT IS RARE IN THE NON-PROFIT WORLD!!! You would be hard pressed to find very many non-profits that are all volunteer!! We are working harder than paid employees would ever work.. Because we want to SAVE PAYTON and all the sma children all over the world.. THIS is about SAVING CHILDREN AND BABIES!!!!!!!!!!! We are currently getting the details worked out to be officially tax-exempt and have 501-3-C status, but when it is all finished I will let you know and we will be on our way!!! Our next project will be a car wash and then another garage sale(so save your throwaways!!) and then on to planning the benefit again!! If you have ANY IDEAS about future fundraisers.. etc... or want to be involved, please let us know!! Email me or write on the board!! If we work together as a team we WILL MAKE THIS HAPPEN!!!!!!!!!!!!!!!!!!!!!XOXOXOXOX
CommentsDeb,Rob,And SUPER TROOPER, cant tell you guys enough the wonderful time i had on Saturday. i am so happy to hear the total is well over last years. YOU DESERVE IT! And so does Payton and all the other babies. Lets not give up until something is done! But mainly Deb, just reading this journal motivates me each and every time. You put a fire in all our hearts. keep up the hard work, you have no idea the amount of people that appreciate this. THANK YOU SO MUCH! In a world we live in today we can only PRAY for more selfless people like yourself and Rob. Thank you, you are an inspiration to me and everyone you know. Well i am getting sappy so ill quit it(im not even drunk!) but just wanted to say Thanks. Talk to y'all soon. Michael Murphy
CommentsDebbie --- great job on the fundraiser. You are so right about the stress and work preparing for it but the out come is always the best. I know Dr. Bach was a great assest to this year's event as the guest can see a real face in the battle with SMA. HE is a great man and has helped many kids and will continue to help the kids until the cure is found. I am sure Payton had a great time - I know MAdison has a great time at her event. She is a big ham --- we need them to be hams. Now take that need rest and also enjoy the summer.
CommentsHi Gang...Just wanted to let ya'll know what a wonderful success the benefit was.A pretty big turn out,lots of auction items,money money money & a good time had by all!!I myself am anxiously awaiting my 7 day cruise I won on the live auction!! Yeehaa!! Although it's only been 5 days since the benefit we've already begun to plan for the 2003 benefit....if you'd like to help drop a line & let us know or if you think of things that we can change or you have a connection for an auction item please please let us know!! Last year we hit 40 thousand this year 50 thousand who knows maybe 2003 we'll hit 100 thousand. With all the help and energy put into it how can we loose!!They say aim high & you won't be disappointed right?!! Way to go Deb,Rob & Lil'P...lets keep up the good work & get you more interviews w/the TV stations,newspapers & other media outlets...spread that SMA awareness!! Love ya, Shan xoxox
CommentsWell, lots going on...AS USUAL!! We are in the middle of sending out thankyous! (I have help this year--thank GOD!!) I sent out 300 handwritten thankyous with pictures last year and that was quite a project just in itself!! Thankyou Maria for helping me with this!! It is so important for everyone to know just how thankful we are and I don't just want it written on this board! We want each and every one of you to get a personal thankyou from all of us with a picture that you can keep of our little angel!! WE COULD NOT DO ANY OF THIS WITH OUT ALL OF YOU!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Be back soon-must get Payton to bed.. Will share lots about Paytons Pals soon!!!!:0)
CommentsHi everybody!!! Wanted to let you all know that we have TONS of really awesome SMA T-shirts for sale. Various styles & colors e-mail Deb for more info. Saw Payton yesterday & he had speech while I was there. I couldn't get over the noises he made & the intense look he had while trying to concentrate & communicate w/Eileen. It really was awesome to watch & made me even more determined to raise more money for research LETS FIND A CURE FOR THIS BADBOY & give Payton the quality of life he should've had from the start. If you know of a jeweler or anyone who might be willing to donate an item for the 2003 benefit please let us know.We're setting our sights higher each year & the benefits keep getting better & better but these kids are still being born w/SMA & still dying 'cuz we don't have a cure....YET. I know we can make a huge difference not just to Payton but to the 1000s of SMA kids & their families...there bodies have already failed them don't you be next. I LUV YA Freemans!! xoxox Shan
CommentsJust wanted to say, i do not know any couple who could be any stronger than Rob, Debbie and of course little Payton. I hope this years fund raiser was more succesful then last year.Wish we could have stayed longer. Go Payton !!! Love, Claudia & Frankie.
CommentsRob & Debbie I know your on the way to therapy... Just wanted to say keep dry, it's lousy weather out there........... Rob, I have now known you 23 years of my life, which is hard to believe......we are getting old : ) Keep up the great work!!! I love ya , Brother. Keep on pushin.........Good things wiil happen. Frankie. ; )
CommentsRob & Debbie Rob, I have known you now 23 years of my life. You have always been a strong person, especially now. Keep up the great work and keep pushin...... Good things will happen. I love you guy's. Keep dry...it's raining cat's & dog's out there. Love ya.... Frankie God Bless Payton.......the Angel
CommentsHello, well I heard and I see from the board that the event went very well and was very crowded. Again I'm sorry Joe and I didn't get there. I heard Payton is getting bigger and quite the handsome boy!! Joe and I are gonna move back up here. He should be here in August. Well I'm really glad everything went so well and I will be back to the site to see how you all are doing. Love, Lisa
CommentsHappy Fathers Day Rob!! AND Happy FATHERS DAY DAD!! AND Happy Fathers Day to all you fathers out there!!! Have a great one!!! Work was busy tonight and tomorrow should be nuts.. Payton is great.. We are looking forward to hashing out the details for Paytons Pals and future fundraisers!! Promise to give all the dirt when it is figured out! We are having a car wash very soon.. Probably either July 21 or July 28.. Payton will be TWO on July 14th and WE ARE SO EXCITED to be able to plan his party and celebrate the BIG ONE!! The textbooks (dated from the pre-archaic times) say that type 1 children "do not usually live to see their second birthday" and we all know that normally that would be considered old age for a type 1, but with the bipap, a cool diet and some coughing assistance, Payton has kicked some butt and proved to alot of people that you can be pretty darn handicapped and still laugh and enjoy life.. Payton doesn't know any different, so to him a day with nothing but videos and mom and dad and grandpa and grandma is the best day there is! Take care and we will have details for his party soon too! Love Us
CommentsDear Payton, Hey! It's your favorite speech therapist. Okay, you're only speech therapist, but we are definitely buds. You know that I'm going to miss you when you get another therapist. If you weren't up partying all night, you would be awake for therapy. Even when you get another therapist, I'm still going to come over to hang with you. Okay? Hope you're having a good day. Be nice to Daddy because it's Father's Day. Be nice to Mommy also. Tell mommy and daddy I said , "Hi". Hopefully I'll get to see you next week, you little sleepyhead. Love you......Ilene
CommentsHappy Father's Day Robbie!!!Hope you all enjoyed your day together (missed you today Deb it was nuts at Outback!!)Excited about the upcoming 2nd b-day for Lil'P...how cool is that.Hoping one day Payton will realize just how lucky he is to jave two such dedicated & loving parents...it'a because of you two & your unyielding determination to keep your son alive that this big event will be happening. YOU'RE BOTH SOOOO AWESOME!!!I wish all children had such wonderful folks,especially all the type1 kids, just think about how much better the world would be. Hope to speak w/you soon. Luv ya, Shan xoxox : )
CommentsHey Deb, I just wanted to say hi, and let you know that I haven't forgotten about the addresses you need I will have them all soon. I'm so excited about all the money that was raised at the benefit to help Payton, now we just have to work on making twice as much money next year. Please let me know what I can do to help. Payton looked so cute at the benefit. I can't believe he's going to be 2 next month, that's so great!! Please tell rob I said Happy belated Father's Day. You both are the most amazing parents I have ever met. Well give payton a big kiss for me, and hopefully I will see him soon. Love ya Kelly
CommentsHello all!!! Well The next car wash has been scheduled!! Yeah!! It will be held on July 21 at the Mobil station on the corner of coral springs and atlantic. I dont know the time yet but i am sure that deb will fill you guys in on the rest of the details. Hope your visit went well today Payton you are such a trooper!!! I will see you guys soon. Love always jen xoxo
CommentsJULY 21st!! Be there!! Our second car wash!!!!!!!!! It will be fun in case any one would like to volunteer!! We expect to have a sunny day so get your bathing suit and come on out and help us wash some cars!! We took a ton of pics last time and everyone had a great time!! Look forward to seeing some of you there!! The FSMA annual conference is this weekend.. Hundreds of sma families go and meet and talk and listen about SMA... I wish so badly that I could be there.. Esp. to meet some of the other parents, but there is just no way.. Maybe next year.. I am hoping someone takes notes for me and takes lots of pics too.. Maria is still taking in money from the event but we are definitely over $50,000 so JOB WELL DONE BY ALL!! I hope that our sma family is pleased and maybe we will see that CURE/TREATMENT sooner than we thought!!!!!!!!!!!!!!!!!!!!!!!!:0) Payton had his visit in West Palm Beach today.. he turns purple now as soon as he sees the girl that gives him the shot.. He is such a trooper though.. As soon as we walk out he is fine.. Just take me home mommy:0) Thankyou so much grandma for always being there for us and helping us get to the doctor!! We know you are so busy with work, yet you always take off to help with Payton no matter what he needs!! We love you mom/grandma!!!!!!!!!!!!!!!!!:0) Well, I think that is it.. Talk soon Debbie
Commentshey Deb,Rob,and Super Trooper, Just dropping in real quick, awesome to hear the total is well over last years, but well all know its still not enough. CANT WAIT FOR THE CAR WASH!!!!!!! i had such a blast at the last one i cant even fathom how much better this one will be.......EVEN IF I STILL HAVENT SEEN THE PICTURES DEBBIE! LOL. Well i am off to go hit the rack, hopefully ill see you before i leave for California on Friday Deb, if not keep up the good work, you motivate us all. G'night Freeman Clan. Michael Murphy
CommentsHey buddy!!! I enjoyed watching Toy Story 2 with you today :) Thank you for warning me before the scary parts....like when that mean toy wants to hurt buzz. we wouldnt want that now would we?? You are such a great buddy and i am glad that you did not make me sit through veggie tales again....i like barbara the manatee and all of them but they can never find their hair brush :) LOL!! I cant wait to raise some more money for my favorite munchkin!!! I will see you soon Love ya jen xoxox ps tell mommy and daddy i said hi :0)
CommentsHi Kelly, Michael, Shan, Jen and everyone else!! Payton is great.. We are looking forward to celebrating his SECOND birthday soon.. It is so weird because even though Payton is only turning two it feels like 10 years have passed since I was pregnant..Very strange..We haven't been able to book it yet, but it looks like we will try to rent out a single room at a theater to watch a movie with Payton and friends! If all goes the way we hope, we will have an open invitation to any of our friends and family that want to come!! KIDS ARE VERY WELCOME!! So,as soon as I have the details I will post them.. We are already working on our Paytons Pals website with Laura and should be up and running as soon as possible... I will let you know about that too.. The car wash is July 21st.. Don't forget.. wear your bathing suits!! Talk soon Deb
CommentsHEY THERE.. If any of you that read this board are sma parents.. could you PLEASE do us a big favor and send a pic of your child?? NOT an email please and no paper copies from your scanner.. I want actual photos or copies of photos!! We plan on blowing them up and using them for a wall at the next benefit that we have!! We want people to SEE our children so that they can see that this is not just happening to Payton but happens and has happened to many children all over the world!! I know it is a pain, but if everyone participates, this will make a huge difference in our fundraising efforts and will be SO APPRECIATED by all of us who are working so hard in south florida to raise awareness and funds for research,etc..!!!!! SO, Please help us out and send a pic!! The address is Payton Freeman P.O. Box 667498 Pompano Beach, Fl. 33066 We are already working on the date for next years benefit, so any head start we get will be SO HELPFUL!! Thankyou for this!! I will also post on the FSMA board, etc.. but want to start here... We were denied SSI which means we are ineligible for medicaid and therefore unable to recieve nursing care through medicaid.. This is a very BIG DEAL.. We were denied based on the fact that there "was a lack of information" or something like that.. THE LAST THING that Carol said to Rob was, "Well, I don't have everything I need, but I don't know for sure what it is that I need, so I will call you back" We got the denied letter a few days later.. So, now we are going to talk to an attorney provided to us by the state (I guess they help you if you were denied--but they must somehow work for SSI) and we are going to fight this.. It is a real shame though, that Payton who so obviously needs nursing (My nurses are all beside themselves that he can't get nursing, esp. when they constantly go to different cases that do not have the need that we do) cannot get it and has already waited over 4 months and counting to get anywhere with this.. This has had a huge impact on Rob and I and our relationship and of course affects Payton too, in probably more ways than I even realize.. I wish I could sue them for every second of Paytons days that he has had to suffer because of them.. And I wish a few other things too, but I will leave it at that and I will keep you updated as things progress.. Right now, we are just going to meet with the attorney next Tuesday and see what happens next.. Keep your fingers crossed!! We have alot of t-shirts and a couple jackets,etc.. leftover from the benefit that are now being sold by me and Jen B, so if you would like one get yours now!! They are being sold at a discount and are quite nice!! I also have some of last years model too, but there are limited sizes and styles from last year left.. Take care everyone and talk soon.
CommentsDeb,Rob,And Super Trooper, sorry to hear the screwing continues, we all really need to find out something to do. we are all concerned about finding a cure in general but we also need to find something to do for payton himself, and get this nursing he needs.Its hard to believe people can be so heartless just knowing that if it were their child in this situation theyd eat glass to get something done. Well i have to cut this short i am leaving for California for a couple weeks to go blow some stuff up in about 2 hours. But i will see you guys when i get back and cant wait for the carwash! talk to you guys in a couple! Michael Murphy
CommentsHey guys~ just read your journal entry re: the SSI situation/medicaid. What the crap I swear do these people not get it. We're not talking about being approved for elective surgery here this is a childs life.Explain to me how this crap can go on in the good ol' USA/united we stand & all that stuff. How freakin' hard is it to understand SERIOUSLY what is wrong with our health care system. There are people constantly robbing them blind...getting assistance when they don't need it because they're lazy & don't want to get off their butts,they falsify documents and use the system to benefit themselves while screwing those that NEED it to survive. What is this bullcrap all about. It's soo wrong and unfair and the worst part is they're hurting an innocent child and just don't seem to care. Not enough information??? Well Carol why don't you drop by one afternoon and meet Payton,see what his life is all about then tell us you don't have enough damn information.One look at this child is all the information she'll need.It's absurd just totally absurd and honestly makes me sick to my stomach.Let me know what happens Tues. w/the attorney Deb.. appeal appeal appeal until they get so sick and tired of hearing your name, until they know your # by heart. I'm sorry to go off but I've never been known to hold my tongue and this touches my heart. My fingers & toes will be crossed for you!! Have a wonderful weekend. xoxox Shan
CommentsThanks Michael and Shan!! I need you guys to pump me up like that cuz I get pretty tired of this crap and it gets harder and harder to fight these people.. SO THANKYOU I NEEDED THAT!!!!!!!!!!!!!!!!!!Talk soon! Deb
CommentsHey Deb & Rob~Wanted to wish you luck tomorrow with the attorney.You know that if there's ANYTHING I can do to help with this or anything else I am here 120% for you just say the word!!Hope this finds you all doing well...especially Lil'P. Luv ya, Shan xox
CommentsHey Guys. That goes for me too. I hope that everything goes well tomorrow. I hope you like your new toy buddy it took me a while but i finally found it :) I will see you all later. xoxo jen
CommentsHey, Payton! Hope you're doing great! Getting ready for Football? Summer practice seems just around the corner! Your Aunt Amy mentioned a wonderful dinner party in your honor and to help out FSMA which, alas, I have not been able to attend -- but be on the lookout for a little something in the mail that I hope will help out! See ya!
CommentsOK I KNOW.. I have been neglecting the board.. I think I was just sort of "vacationing" from everything for a few days to recoop and figure out exactly what I want to do as far as fundraising and next years benefit, etc.. We are starting our own NON-PROFIT organization called PAYTONS PALS.. We are 100% non-profit and ALL VOLUNTEER!! We are doing this because we see a void out there in the sma world that we want to fill!! There are a few organizations that raise the majority of their funds for research (FSMA, ANDREWS BUDDIES, MIRACLE FOR MADISON) and we SUPPORT THESE ORGANIZATIONS 100%!!!!!!!!!!!!!!! BUT!! When a family (like ours) needs a new bipap or a new in/exsufflator, or a wheelchair or a power wheelchair or a wheel chair accessible van or a wheel chair lift, THERE IS NO ONE THAT HELPS!!! THERE ARE CHILDREN OUT THERE THAT GO WITHOUT!!!! THEY NEED THESE THINGS!! THESE ARE NOT LUXURIES!! These children don't have luxuries, believe me.. They are currently given no hope whatsoever by the medical community and the type 1 children are not given hope by anyone but their family and friends... THIS WILL BE DIFFERENT WHEN WE SPREAD AWARENESS!! Alot of sma children do not get the exposure that Payton has.. Some of them, are in their homes, unable to leave the confine of their rooms, and that is life for them.. Machines, feedings through a tube, and laying on a bed, watching TV.. THEY DESERVE TO ENJOY WHAT LITTLE TIME THEY HAVE!! SO, We want to help them.. We are going to raise money for research, but we will also be raising money that goes DIRECTLY TO THE FAMILIES OF THESE CHILDREN!! NOBODY does this so far that we know of, so we feel very proud to start helping those that need the help! You could imagine what a mom goes through that acts as a nurse basically, constantly taking care of their childs medical needs, adjusting and lugging around equipment, fixing special formulas, going to countless therapy appointments, giving air when a baby desats and getting so used to it, that it is not "weird" to them anymore but just how they take care of their baby.. AND, doing this day in and day out they tend to get a little tired but these moms are relentless and tireless and NEVER GIVE UP! NOT ON THAT BABY!! AND, the dad works twice as much to make up for the loss of income for mom, so he comes home from work EXHAUSTED but still finds an ounce of energy left to read a book til he passes out and the mom sleeps about 4 hours and then goes and feeds (Sma children can't go more than 2-3 hours without nourishment) and turns (they can't move so you can imagine how sore they would get if you don't turn them--not to mention you don't want secretions to get too comfy in those lungs and get infected) and feeds and turns, and without ANY nursing at all this would be impossible and SSI is actually trying fight ALL of US on this issue--or medicaid or whatever they are--THE ORGANIZATION THAT WAS PUT INTO PLACE TO HELP PEOPLE LIKE US, BUT DO EVERYTHING THEY CAN NOT TO--- ANYWAY, I know I am rambling, but can you just imagine what life must be like for the family I just described.. Well, I know about 50 families like that and not all of them can afford the stuff they need and not all of them have Outback or Striptees or my MOM or Channel 10 or Susan or nurses that care and OUTBACKERS THAT ARE THE BOMB and g-ma Roz and FAMILY THAT ALWAYS HELPS WHEN THEY CAN and SO MANY OTHERS that have given of their time and money ALL JUST TO HELP SAVE A DYING LITTLE BOY.......................... SO we want to step in and make a difference! I am loving ANY ideas you all have! I WANT YOUR IDEAS!! We are going to do some great things TOGETHER and this is a joint project!! WE WILL MAKE A DIFFERENCE!! Next years benefit will be for research, but all of our other projects will go to helping families!! Please email me if you want to help or have anything you want to talk about! We are in the process of getting our organization up and running! We are working with an sma dad! Jacobs father, Adi, who has been just wonderful is helping us PRO BONO and we are SO EXCITED to get this thing rolling! WISH US LUCK!! AND LETS FIND A CURE FOR THIS DISEASE!!! One more thing, Rob and I working on a short video of Payton and the interview with Channel 10 and a couple clips from the event, etc.. THis thing is professional and going to be quite awesome.. IF anyone wants a copy to show to someone you think might want to be involved or just want one period, let me know!!! The video should be done in the next couple of days!! Thanks for everything guys and talk soon! OH, P.S. THANKYOU JEN FOR PAYTONS JULY BEANIE BABY!! You know we have been looking for that bear.. You are the best! OH, GEEZ, one more thing!! We are planning Paytons b-day party at Muvico on Saturday the 13th of July and want to invite you, our friends and your children of course!! As many as want to come are invited.. We are NOT sending invitations! TOO last minute, so please do not be shy and come! THIS IS THE BIG BIRTHDAY!! ALL textbooks say that type 1 sma children "do not live to see their second birthday" We are quite excited to prove this archaic statement WRONG!! Join us! I will have more details later! LOVE LOVE LOVE :)
CommentsOh my Deb i think that this is you longest novel in awhile!! :) Well speaking of fundraisers i hope to see all of you at our Second Car Wash that will be on July 21. We are putting up flyers and everything. If you want to volunteer just let Deb know. The more hands the more cars we can wash and the more money we will raise. I cant wait until this whole thing is up and running!!! Well i will see you guys later. off to my oh so fun hostess meeting :( xoxo jen
CommentsHello Hello!!! We are thrilled to announce that Paytons SECOND birthday party will be held at the Muvico in Pompano!! We rented an auditorium and are welcoming all of our friends that would like to join us!! The dates have been changed, so for details please email me at pjf714@netscape.net!! We have kept in contact with Amber over at Channel 10 and she has decided to do a follow up story on Payton at his party!! WOW, HUH?? We are THRILLED!!! People may actually start to recognize Payton soon and realize that this baby needs HELP!! We are picking up the video tonight that we will use to encourage celebrities/press/new people to help, etc.. !!! This tape should be awesome with clips of the interview on Channel 10, the interview with Dr. Baumbach, the event and some important info about sma, with music by Creed and lots of pics of Payton, so if you want a copy or know someone that you think should see it, please let me know!! I am ordering a bunch of these to send out!!!! Don't forget about the car wash and SAVE YOUR GARBAGE!! Garage sale soon!! ALSO, A BIG THANKYOU goes out to Jim and Maryann and Paula and Tom and the "James Jr. Fund" for taking an interest in Payton and for paying for Paytons' entire birthday party and then some!! We are so happy to be able to afford to make this birthday (the big one) as special as we are because of YOU!! THANKS SO MUCH!! We really appreciate it!!!!!!!!!!!!!!!!!!! I promise to put up pics soon! I know some of you are thinking, yeah right! But I promise as soon as this party is over I will start getting them up.. I have LOTS!! All the way back to DISNEY!! Sorry! Love Love Love Deb
CommentsOK, So this is whats up.. I went to the "legal aid" office in Fort Lauderdale yesterday.. These organizations are not set up for you to call.. When you do, you get a VERY LONG VERY ANNOYING voice mail, and I guess basically they figure if you want help bad enough, you will come get it.. SO--my mom is off (thank God)from work for a couple weeks (perk of working for the public school system and MAJOR help to me!)and she stayed here with Payton so they I could go figure out what to do next about SSI.. BECAUSE, in all reality they LIED on our denial form by telling us that we were denied because we "did not provide them with the information that they requested" In fact, we supplied them with EVERY BIT OF INFO THEY REQUESTED and THEY did not know what to ask for next, said they needed more, but did not know what and that they would let us know.. Well that was the last contact we had with them.. SOOOOOOOOOOO when I went to the legal aid office.. They were like what do YOU want?? ... I said I need "legal aid" They said for what? I said I was denied SSI for my very disabled son and have been cut from nursing and am basically desperate for help (this was all through this like bullet proof glass).. Anyway, she says, well have you been denied twice?? I said no this is the first time.. well she says, you have to be denied twice for us to take you on, (or homeless or HIV positive) but go ahead and appeal and let us know if you don't get it.. SOOOOOOOOOOOOOOOO I said well, ok I understand I am going to have to appeal but I just want to make sure I don't NEED you guys because they sort of screwed around with us.. What do you mean she says?? I explain what happened and she calls one of the legal interns and asks her is she has "2 seconds" to talk to this lady out front.. So, FELICIA comes to get me.. I love FELICIA.. Felicia is this young.. take no crap intern that KNOWS THE SYSTEM.. I tell her my short version (yes it was short) of what has gone on and how I just want nursing.. She says well, why haven't you gone to the DEPARTMENT OF CHILDREN AND FAMILIES? (this is welfare for those of you that don't know) and I said well, Payton is "disabled" and no one has ever told me that I can go directly to DCF and EVERYONE has told me that we MUST GET APPROVED FOR SSI BEFORE we can get medicaid and "into the system" She said well, Payton IS disabled so you should get SSI benefits, but if you cannot pay for your medical needs (including nursing) you can get help from medicaid through DCF and it is a separate entity.. And medicaid (once you get approved) will pick up where insurance leaves off.. SO if insurance only wants to pay for 28 hours of nursing per week.. Medicaid would pick up the rest!! WELL, I almost started hysterically crying in her office but I held my composure and asked what to do next.. She said well, you need to go down to DCF and apply but first lets find out what happened at SSI.. They do this crap all the time, etc etc.. SOOOOOOOOOOOOOO she calls and it was GREAT because they messed with her, kept her on hold, switched her all around, made her wait and wait, and when she demanded to talk to the manager.. KEVIN MCCORMACK, they switched to CAROL POWERS voicemail!!!!!!!!!!!!!!!!!!!!!!!!!!!! Well, as you all know Carol is the case worker that lied and messed everything up to begin with, so FELICIA was pissed.. Then she called back and could not even get the girl that would switch her to the proper person.. So, just like any normal person that calls SSI, she got DUMPED and she was NOT HAPPY.. I heard her telling her supervisor what bull#$%^ this is and he said that we are not their "client" yet, but to call Kevin back and ask him nicely to take care of this the right way, so that they DO NOT HAVE to get involved!! Well, this would just get them to figure out what it is that they need, and let us give them the info without having to "appeal" or "reapply" (All of which is lots of red tape and hassle) SO WISH US LUCK.. I am to call Felicia next week and find out if she got anywhere with them.. IF NOT, I have to APPEAL and go through all the crap, but they will probably take this case more seriously since we have ALREADY talked to an attorney about their negligence........................SOOOOOOOOOOOOOOOO then I went straight to the DCF and got an application.. I filled it out and brought it back today.. I waited in line.. Waited waited waited in the lobby and finally an appointment setter upper type person came and got me.. She told me what I would need to bring, what time and day I needed to come back, etc.... She was very nice but basically just gave me an appointment.. ANOTHER thing you can't do over the phone..... SOOOOOOOOOOOO I will go back next week and PLEASE KEEP YOUR FINGERS CROSSED ON THIS ONE.. This is our ONLY chance of getting nursing any time soon.. I cannot tell you how much I am hoping this works out.. I don't know how much longer we as a family can take the whole no nursing thing....ALL I can say is THANK GOD FOR MY MOM:0) Well, We are SO Looking forward to the party and again, if you want details, email me!! Laura Stants is currently working on our Paytons Pals website.. It will be at www.paytonspals.com There isn't much there yet, but be sure to check it out in the coming weeks!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Also, if anyone knows info about this whole DCF--SSI thing that I do not or can help me with any of this process please let me know.. I feel like an alien when I go into these offices and like everyone is looking at me like why are YOU HERE??????????????? Meanwhile, I have more right to be there than alot of these people but whatever.................. Just let me know if you have any experience with this!! The garage sale date will be announced SOON!! Don't forget to save your throwaways!! OH and don't forget summer fun and car washing on July 21st!!!!! Love to you all--Deb
CommentsBar cleanup today--work tonight--and now I am so thrilled to be home and getting ready to watch a movie with My Baby Payton and Rob and g-ma.. I will make this very short as I have been long-winded the past couple of days!! We are going to watch a "beautiful mind" Talk soon... Love to all.. Deb P.S. Got the Hepatitis A shot today at work--seems there have been over 300 reported cases of it in Broward county in just the past week and it was MANDATORY for all Outback employees to get the shot or we would not be able to return to work!! We thought this was a little crazy, but did not mind getting the shot if it would prevent us from getting it.. Just wanted to make sure it would not affect Payton and everyone (including the nurse) said it would not.. Talk to you all later.. :0) Deb
CommentsHey Buddy!! I leave for a few days and so much happens. How am i ever going to keep up?? Just checking in to see how everything is. Your birthday is coming up soon! I will try to come by and watch a movie with you this week.... but i have just one request....try to pick something besides veggie tales ok?! :) Talk to you all later. xoxo Jen p.s Rob i am still waiting and waiting and waiting. The board misses your wisdom :)~
CommentsHi'ya Gang!!Wanted to drop a note to say hello & make sure all ws going well.So glad to hear about the same crap happening to the attorneys w/this Carol(blech)lady that happened to you.Maybe now they will totally understand & do SOMETHING about it.See just how much of a differance you're making Deb!!Keep up the good work & hopefully this will not only benefit Payton but other families that have to deal w/the same crap that you do.Who says 1 person can't make a differance?? Way to go!!!Excited about the big 2nd b-day...that is soo TOTALLY awesome.Think maybe you should start a website about all you do for Payton on a daily basis & the different ways that you do things for him & yourself in the hopes that other type 1 Moms & Dads will read it & get some sort of knowledge & understanding of how to live day to day w/a type 1 child.That making the choice to keep your child alive, using the bi-pap & making them cough & the 1000s of other things you do, actually works & that you CAN watch your child grow & they CAN celebrate their 2nd b-day & 3rd & 4th.Title it "DEBBIE DOES IT...SO CAN YOU!!"(Daily life of a SMA Type 1 Family). Hey maybe it's corny but it might help!! Anyway I love you Deb,Rob & Payton!! Love, Shan xoxox
CommentsHey There lil boy!!! How are ya doing?? Your website is very very cute!! Thanx for lettin me look at it!! Tara
CommentsI WISH YOUS THE BEST OF LUCK.EVEN THOUGH I DONT KNOW PAYTON I LOVE HIM ANYWAYS. AND I THANK YOU FOR NEVER GIVING UP....YOUS ARE TRULLY LOVING PARENTS. MAY GOD BLESS YOU...I KNOW HE WILL!!!!
CommentsHappy Fourth of July Buddy!!!!! I hope that you have a great time watching all of the fireworks! You deserve it. :)~ I will talk to you all later and have a great fourth of july. xoxo jen :)
CommentsHi everyone! HAPPY FOURTH OF JULY!!!!!!!!!!!!!!!! We are celebrating with Payton at the beach so I cannot write for long but I HAVE A LOT TO TELL, so I promise as soon as we get back I will fill you all in!! Love to everyone! And have a safe and fun holiday!!
CommentsDear Payton, Hello! My name is Eric, and I am now 12 years old. I live in Tennessee. When I was a baby, I was very sick with a heart problem. I was hooked on monitors and was in and out of the hospital. The doctors didn't think I would live, but I proved them wrong! So hang in there, Payton. You are a big boy and Jesus loves you and has a special purpose for your life and for my life too. Thats what my mom always told me. My little brother Justin likes to watch Toy Story too. He likes Buzz Lightyear. Justin and me are both homeschooled. Justin is 9 years old. Take care and be happy Payton. We all will pray for you and we all love you! Eric and Justin
CommentsHi Freemans, Hope you had a wonderful night watching the fireworks,what an awesome idea!Will give you a holler when I get back from R.I.(keep your fingers crossed all goes well)Love ya,Shan xoxo
CommentsHey Payton!! Thanks for letting me watch Shrek and fireworks with you. I had a great time :)~ Tell mommy and daddy that i say hello and tell them thank you for me. I cant wait for your party it is going to be sooo much fun =) I will come and visit you sometime this week and we can watch another movie together. xoxo Jen
CommentsHi everyone! Hope your holiday was great!! Ours was very nice--we stayed on the beach with Payton just for one night so that he could watch the fireworks--they are always a double edged sword for him, because he loves the lights, but HATES the noise.. We had a nice room and a decent view, but Payton seemed hot and a little disturbed by most of the noise.. He did seem very happy to see the lights though so it was all worth it.. As long as Payton gets to see different scenery he is happy!! OK... Paytons Pals!! We are having our first board meeting in July and we are ALL VERY EXCITED about this!! I think we will all feel very good knowing we are really making a difference for some REALLY needy children.. These kids deserve to have the absolute best quality of life we can give them, being they have so little time and are so limited at what they can do.. So, we have a lot of work to do, but we are all looking forward to it!! Our first project as Paytons Pals will be the car wash at the end of this month and then the garage sale in August!! We are planning another car wash before next years event, and of course do candy sales at work (great idea SHAN!!--we have already raised a couple hundred dollars just in selling candy for a dollar!!!!) We are looking for a couple ideas for projects so if you have anything that you think sounds interesting LET US KNOW!! ............MEDICAID............... Ok, on Tuesday I went to DCF.. This is the Department of Children and Families.. This is where you go for food stamps, etc.. etc.. etc.. Now, I wasn't sure if they were even going to be able to help me, but I got as much of the things off their "list" as I could (birth certificates, current utility bills, bank statements, pay stubs, life insurance policies etc. etc.. etc..-most of which I still haven't gotten back from SSI) I went early to my appointment and I only had to wait about 10 minutes to be seen.. Rueben was a very nice guy.. probably late thirties early 40's.. he was definitely not NEW.. He typed faster than I do, and knew who to call and had contacts at the places he called.. He did not, however, know anything about HOME HEALTH CARE.. And I made it very obvious that that was the reason I was there!! I got a little aggravated at one point and started ranting about how they promote the breakdown of the family and how Long do they think my husband and I going to last when they practically force us into splitting just to get the care we need for Payton.. Well, I don't know if that was good enough for him or what, but based on the info I gave him (I didn't have any pay stubs or life ins. policy--they were at SSI) he signed me up for KID KARE.. To be honest with you, I STILL don't know what that means as far as medicaid.. if we are in the system or not, but I think that we are NOT. I think it is just supplemental insurance in case Paytons insurance drops him or doesn't pay for medical care.. Which is nice and we appreciate it, but I left the office with a "medicaid #" that I was unsure of what I could do with.. And NO NURSING. SO, I went straight to SSI.. I asked for GUS.. This was the guy that Rueben had talked to and the same guy that told Rueben that we had NOT been denied, just that they were waiting for more information.. Well, I waited for about 15 minutes, and out comes my favorite lady.. CAROL POWERS.. She says DEBBIE FREEMAN.. I am like oh, great.. here we go.. I walk in and go straight to her desk.. She is looking me up and down, like "why are YOU here, again????" She says, why are you asking for GUS?? Because he is the one that just told the guy at DCF that we were not denied.. She is like oh , ok we couldn't figure it out because I handle this case.. (Obviously if you want to go over this lady's head--good luck) Anyway, I am like, Look... If you just need more info, you NEED TO TELL ME WHAT IT IS, BECAUSE YOU NEVER DID!! SHe says oh yes I did, and I say OH NO, YOU DIDN'T!! SHe did not really want to get into it with me, because I was yelling out all the facts, and she couldn't even remember who she talked to last or what was said.. She kept saying she just got back from vacation.. ANYWAY, make a long story short.. Once I told her about legal aid, etc.. I think she realized that we weren't fooling around, and that we were not going to just blow this off. SHE ACTUALLY WENT SO FAR AS TO SAY THAT ROB TOLD HER THAT HE DIDN'T THINK WE'D BE ELIGIBLE SO HE TOLD HER TO FORGET IT.. I was like, ABSOLUTELY NOT.. HE would NEVER SAY SUCH A THING.. Anyway, I think she started to remember and next thing I know she says, and I quote, ya know, just maybe, and I can't guarantee anything, but just maybe you guys will qualify! OH MY GOODNESS.. GET ME OUT OF THIS OFFICE.......................... I have to drop off MORE information to this office on Monday, but I am hoping that we will finally clear this thing up soon!! WE NEED NURSING!! It will never cease to amaze me, that a child who is determined disabled and obviously needy of home health and medical care should have to wait ANY LENGTH OF TIME, to get the medical care that he needs??? Why has Payton waited 5 months to get nursing care and it is still PENDING!! We DO NOT HAVE IT YET!!! AND WE DO NOT KNOW IF WE WILL!! THIS IS RIDICULOUS!!It scares me to think of all the sick people in this country that just do not have the strength, energy or time to go and fight for themselves, that just go without, or just end up homeless.. I fear that it must happen more than any of us realize... Well, wish us luck and take care of yourselves!!! Love Us
CommentsHello family, Hope all is well.....good luck w/ your medical assistance.....sometimes i wonder about this countries rules & regulations when it comes to that stuff. It's crazy !! Hope you had a happy 4th..sounds like it. I'm working today :( Not used to working on Saturdays, but we must do what we have to. Hopefully i'll see and talk to you guy's soon. Love, Frankie. Oh yea..... Claudia and I are getting hitched Aug,23rd. very small ceremony........It will be family only.....Then off to the Boca Hotel........See you guy's soon. Kiss for you Payton. Me. : )
CommentsGOOD LUCK TODAY DEB WITH THE MUTANTS AT SSI!!!!!!!!!
CommentsHi out there! I want to apologize for my neglect of this journal! I have been SO busy and keeping up with many sma issues has kept me preoccupied and off my journal!! I promise to try and keep up!! Well, we are really looking forward to the party next week!! I hope that he will be feeling GREAT that day and I hope he likes "Lilo and Stitch!" We are planning a meeting with the University of Miami to see what they are working on and hopefully we will be able to help them with research in the future!! The car wash is set for July 21st and the second annual "Paytons Pals" rummage sale is set for August 24th!! (Garage sale!) IF you have ANYTHING you want to get rid of, please send it our way.. Even if you think it is worth 5 cents, it is good!! We'll take it!! We will have baked goods, thanks to Jen Berman and sodas and water too! So, if you are out and about early in the a.m. that day, come on by!!! Well, take care everyone!!! You guys are all the BEST!!!!!!!!!!! Wish me luck at SSI, should be dealing with them today or tomorrow in the a.m. Could not get info from the accountant yesterday.... It is always such fun to go there and hang with Carol. :0) Talk soon Love Deb
CommentsJust wanted to say God Bless Payton, and all of you who surround him and support him with so much love. Just know that God is watching over him, and you are changing the lives of many babies with your hard work. You and the cause will be in my prayers, and my three year old's prayers, as well.
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CommentsHELLO FREEMAN GANG, JUST CATCHING UPON THE JOURNAL, WOW WHAT ENERGY YOU ALL HAVE. SPOKE TO ROB YESTERDAY AND HE SOUNDED TIRED, YET AS STRONG AS EVER, VERY INSPIRING TO SAY THE LEAST. CAR WASH SOUNDS FUN, I WILL GET MORE DETAILS AT THE B-DAY PARTY CAN'T WAIT, I GET TO PLAY HOOKIE FROM WORK WITH THE FREEMAN'S (I NEW YOU GUYS WHERE A BAD INFLUENCE!!!!! HA HA ) ANYWAY KYLE AND I LOOK FORWARD TO SEEING YOU GUYS, SPECIALLY PAYTON LOVE GARY
CommentsHey Guys, Can't wait for the b'day party! We never made it to see 'Lilo & Stitch', so I'm glad we'll get to see it with Payton. My husband will also be playing 'hookey' for a couple of hours from work to be there. Isn't that nice? See Payton, you are one special little dude. We all want to hang out with ya. Hope all is well. Take care and see you soon... Anissa
CommentsOh, I went on 'Payton's Pals'. It's gonna look great!! Can't wait until it's fully up and running. By the way, the 'thank you' that you sent out was nice. You all looked very good. See ya...
CommentsHAPPY BIRTHDAY TO YOU... HAPPY BIRTHDAY TO YOU.. HAPPY BIRTHDAY TO BABY PAYTON HAPPY BIRTHDAY TO YOU!! Hey buddy your two!!!!! I am so happy :) I hope you have a great birthday and i cant wait for your party!! I love you!! xoxo Jen
CommentsHAPPY BIRTHDAY SUPER TROOPER!!!!! HOW FAR YOU'VE COME! AND A WHOLE LOT MORE LEFT! HOPE YOU GET ALL THE PRESENTS YOU WANT AND THEN SOME. YOU DESERVE IT PAL.HAVE A GREAT DAY THIS IS YOUR DAY!OH AND I CANT WAIT TO SEE LILO & STITCH, THANKS FOR HAVING ME, I PROMISE ILL BE ON MY BEST BEHAVIOR.ONCE AGAIN HAPPY BIRTHDAY PAL. MICHAEL MURPHY.
CommentsHAPPY BIRTHDAY! TO THE MOST COURAGEOUS SUPERHERO OF THEM ALL!! ...PAYTON FREEMAN (AGE 2). I LOVE YOU ....GRANDPA
CommentsHAPPY BIRTHDAY PAYTON!!!!!!!!!!!!!!! YOU MADE IT!! YOU ARE TWO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! All the docs said no way, and look at you.. Talking away watching Toy Story like the world is yours!! Well, dude, we are doing everything we can (with a whole lotta help) to make that really come true, so HOLD ON!!!!!!!!!!!!!!! We are working hard on it! THANKYOU EVERYONE for making this a very special birthday and we can't wait to see everyone tomorrow!! If you are able to come and don't know details or directions, please email me right away!! Love to you all!! Debbie:0)
Commentshappy 2nd birthday little man! you have come a long way...how can you lose with parents like yours and your other g-ma who is there always.... i am with you too every day in all of my thoughts and prayers that you will be with us today, tommorrow and forever.....FOREVER is now!!!!!!! I love you................g-ma ROZ enjoy your party......
CommentsWow Payton, you are TWO...hip hip hooray for you!! I hope you have a GREAT day today and always, being two is too much fun! Love, Kalair (and her mommy too!)
CommentsHappy Birthday Payton! I love you very much. Hope you have a great day mister 2 years old. Enjoy the movie tomorrow. Love, Grandma
CommentsHappy Birthday Payton. Have a wonderful day!
CommentsWe just wanted to wish Payton a very Happy Birthday. We knew you would prove those doctor's wrong...Next thing you know you'll be on your first date...Can't wait to see you tomorrow...We love you very much. Love, Aunt Jamie and Uncle Ryan and Cousin Trinity and Cousin Zoe. XOXOXOXOXO
CommentsHAPPY BIRTHDAY PAYTON ! ! ! ! Defying the odds as only a super trooper can. Looking forward to your next birthday. Your Favorite Case Manager, AL
CommentsDEAR PAYTON, JUST WANTED TO SAY HAPPY 2ND BIRTHDAY!! HAYDEN ABSOLUTELY LOVED LILO & STITCH!!! WE ARE SO GLAD THAT WE COULD BE A PART OF YOUR SPECIAL DAY! LOOKING FORWARD TO THE CAR WASH AND YARD SALE. I HAVE LOTS OF STUFF! DEB, PLEASE LET ME KNOW IF I CAN BE OF ASSISTANCE AT ALL WITH PAYTON'S PALS, I'D LOVE TO HELP!! LOVE, JIMMY, LORI AND HAYDEN JAMES
CommentsWELL FIRST I WANT TO SAY THANK YOU TO ALL OUR FRIENDS AND FAMILY WHO MADE PAYTONS 2ND B-DAY THE GREATEST DAY OF MY LIFE SO FAR,WE LOVE EACH AND EVERYONE OF YOU THANK YOU,THANK YOU,THANK YOU,ALSO I WANT DADDIES BIG BOY TO KNOW HOW VERY PROWD I AM OF HIM,THE STRONGEST KID ON EARTH,YOUR THE ONLY PERSON ON EARTH WHO CAN TURN DADDY TO MUSH WITH JUST A LOOK.I LOVE YOU MORE EVERYDAY HAPPY BIRTHDAY BUDDY,LOVE DADDY
CommentsHey Guys, Today was a great success! It was sooo cool. We had a great time. Thank you for making us a part of it all. The t-shirts are great and I can't believe all the cool stuff you put in those bags. I hope Payton liked the movie, too. After all, it was his BIG day! I'm also very glad to have gotten to see you guys. It's not that often that we've seen each other in the last 2 years. But, I'm looking forward to the upcoming and future events you have planned. Take care. Talk to you soon.... Anissa, John, Johnny, and Joey
CommentsP.S.- The only thing I wish about today was that we had more time to really hang out. And, by the way, what the heck did you guys do with all of that cake???!!! Just kidding.....
Commentshey buddy!!!! what a great party!! i had a great time!!! you got soo many great presents!!! thanks for inviting me. i will see you friday!! and tell daddy that his entry was great!! lol talk to you guys later xoxo jen :)~
CommentsHi Guys,Wanted to drop a note of thanx for the awesome b-day party yesterday.What a super idea!! That was such a cute movie(I actually had a tear or two!!).The t-shirts were terrific & the fact that Payton did soo well,didn't hear 1 beep out of the machine,was amazing!Know he's not into crowds or loud noises so I wasn't sure how he'd react-Way to go Big 2 year old!!How will Mommy & Daddy outdo this one?? Love ya gang,Shan xoxo
CommentsDeb,Rob,AND MR. BIG BAD 2 YEAR OLD!!!!! Just wanted to give a shout and a thank you for the awesome party yesterday i had a blast. And i love the t shirt. Great Idea. Hope the BeanBag Chair is ok, if not ill just blame Becky lol.Oh and Shann had a tear or two in the movie? Wow the warrior princess sheds one for Lilo & Stitch who'da thunk it??! lol. Oh well time to get ready for work(first day back in a month pray for me) well ill talk to ya later. Michael Murphy.
CommentsHI EVERYBODY!! Well, the big TWO YEAR BIRTHDAY PARTY was a great success! The movie was great.. All the kids had fun and got to roam around as needed.. Lots of little ones at the party.:0) And, best of all, Payton stayed awake and did not de-sat not ONE time for the entire movie!!! I was so impressed with my big boy and daddy explained to him ALL ABOUT being a big boy!! Paytons is already good at it! Anissa, the cake thing is funny, because it was a HUGE cake and they did not give us any time to eat it, so we took it home and each had a slice (it was pretty good by the way:0)) and then we had all this cake leftover so we had Jen B. take it over to Outback so someone would be able to enjoy it.. SORRY ABOUT THE CAKE GUYS!!! We have heard already some jokes about it...:0) Next year we will sing and do cake in the BEGINNING, so that afterward there is no rush!! Payton really did have a great day and I want to THANK EVERYBODY for being there for us and for him and for ALWAYS being so AWESOME to Payton!! He loved all his gifts and already watched Jimmy Nuetron last night!! Daddy explained to him ahead of time that this is a "Big Boy" movie and Payton watched it! Didn't even make a face (his MO with new movies sometimes) and watched the whole thing!! That is how we know he likes it.. We are already looking forward to next years flick!.................. CAR WASH next Sunday! We are all planning on going out for dinner and drinks that night, so come on out and join the fun! We wash cars from about 9am--12 or 1pm and we have music and sodas, water, and GOOD, FUN people! We will all shower and change and meet back out for dinner, so email me if you need more details! THE GARAGE SALE IS AUGUST 24TH.. I think I may have listed the wrong day last time, but it is on Saturday, August 24th, so if you have ANY goodwill type stuff or even stuff you think is "Throwaway," we will take it! All proceeds will go to help start up Paytons Pals and we should have all our "tax" stuff done by the end of the year (we are hoping much sooner, but no LATER than that!!!!) Our first board meeting will be at the end of this month and everyone is VERY excited to get REALLY involved in helping some sma children and get us closer to a CURE TOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Love to you all!!:0)
CommentsHello world! Well, I just got home from work a bit ago and am very tired! I am VERY happy to tell you ALL that we were approved FINALLY for SSI.. THIS IS BIG. We are finally IN THE SYSTEM. This means that Payton will actually get an emergency meeting and they will determine how many nursing hours he needs and from there we will receive nursing care. THIS is a big thing for me and my family as we will be able to focus more on being parents/grandparents and not AS MUCH on being a nurse/doctor all the time.. PLUS, I will get some much needed sleep and be able to take some heat off Rob too.. ALL GOOD THINGS COME FROM BEING ON MEDICAID.......... This is what they tell us anyway, I will believe it when I see it and I will let you know and keep you updated!!!! Gotta go! Love to you all!! THANKS FOR ALL THE BIRTHDAY WISHES!!!
CommentsP.S. Love you Shan!!:0)
CommentsRight back atcha Deb!! xox
CommentsMiss Deb,Rob,And Super Trooper, THAT IS SO AWESOME!!!!!! CONGRATULATIONS!!!! Its about time one of those rat bast@&#s realized you need some help. But like you said seeing is believing these people have been screwing you around for long enough. Pretty soon were not going to be organizing a car wash but a mass but kicking. (sorry i guess i am in one of my violent moods today hehe) But none the less i wanna say congrats. And cant wait for the big car wash Sunday.Oh well time to go torture myself at the gym. Talk to you guys later. Michael Murphy P.S. i am wearing my Lilo&Stitch shirt to the gym, i figure its a great way to pick up chicks.
CommentsHello everyone,i was so busy with my birthday and my 2nd t.v. shoot that i forgot to call my aunt amy and uncle brian to say hi but most important to say HAPPY BIRTHDAY TO AUNT AMY! i hope everyone will help me out and say happy birthday to her when you say hi to me.thanks everyone, love payton
CommentsHey Buddy!! How does it feel to be two?? I heard that you like your new movies... finally something new to watch with you :) I cant wait until sunday!! Our second carwash!!!! Hopefully this one will be better than the first!! I hope to see you soon buddy!! I love you xoxo Jen p.s Happy Birthday Amy!! You are the best aunt that payton could ever have. I think that he likes watching you laugh at the emperor's new groove more that just watching the movie. :) I hope that you had a great birthday.
CommentsYou KNOW I have TOO much going on when I FORGET to put on the board that we are going to be on the NEWS!!!!!!!!!!!!!!!!!!!!!!!!!!! We were on the 5:00 news on Channel 10 with Kristi Krueger again (just as good if not Better than the last interview!!) today!! IT was FABULOUS!!!!!!!!!!! Thankyou SO MUCH to Amber Statler over at channel 10 for producing such great segments on Payton and sma and for caring about Payton so much!! She really wants to see an end to this disease and a cure for Payton just as much as we all do, and has helped get us on the news TWICE in less than 2 MONTHS!!!!!!!!!!!!!!!!!! GO CHANNEL 10!! We are DONE with all the other stations!:0) If you did not get to see it, I have requested a tape from Amber (my tape is all STATIC!) and I will make a copy for the website again! It really did come out wonderful though and just about everybody at the party was on TV!!:0) How cool, huh?? Payton looked so CUTE and esp. happy when he cracked just the slightest smile right at the end of the segment!!!!WELL, PAYTONS PALS is proudly hosted their second car wash on Sunday, so come on out and join us!! We will have lots of fun! Good night--Deb:0)
CommentsHey there world! Mommy and daddy got to go to the mall tonight and to dinner too! THANKS MOM!!! EXCELLENT day today--we went to west palm to get Paytons RSV shot.. HE WAS SUCH A BIG BOY!!! Only made a face and that was it!! NO DESAT and no crying.. just sort of got choked up a bit and that was IT!! We were so PROUD!! Then, it was off to meet JACOB!! This is Adi and Shaina's son who also suffers from sma type 1. He is SOOOOOOO ADORABLE and SO IS JORDAN!! (Their almost 3 year old!) You make VERY CUTE kids, Adi and Shaina! It was a wonderful visit and we hope to make it there again whenever we are in palm beach! I am SO looking forward to getting together with everyone for our first Paytons Pals meeting!! It won't be long now!! The car wash is set and we are hoping for a mad rush of cars.. THe garage sale will be very exciting as we are already collecting everyones "garbage!" SO, it is OFF WE GO!!! I got a VERY encouraging phone call from our favorite case manager over at FIRSTAT, our favorite nursing company.. AND he says that next week we should be sitting pretty with skilled nursing with plenty of hours!! I still have to call and talk to him and find out the details but just that message alone made my whole weekend!!!!!!!!!!!!!!!!!!! We are really psyched about living a "semi-normal" life again!!!! Take care everyone! Love US..............
CommentsHappy Birthday Amy!!Lots of wonderful people were born in July I see. Glad to hear that this nursing nightmare might end for you soon. Did Channel 10 happen to mention anything about the problems you've been having trying to get Lil'P approved for nursing?? How lucky you are to have such a supportive & understanding Mom.I can't begin to think how this nursing issue would've been fixed if she wasn't here to let you leave the house.How do these other Moms do it??Christ,there's grandparents out there that have perfectly healthy grandchildren who can't be bothered with them yet "Grama-Deb" goes the extra mile each & everyday. A truly amazing woman...obviously the apple doesn't fall far from the tree!! Will speak w/you soon I hope... oh & Rob...no more "alone time" with Debbie unless you get it approved 1st!!! Love you guys..you always make me smile!! xoxox Shan
CommentsHey Guys!! The Car wash is tomorrow!! Yeah!! I hope to see everyone there. It is the Mobil Station on Coral Springs and Atlantic and we will be there from 9 til 1230/1. Come and visit. See ya tomorrow!! xoxo Jen
Commentsi had the pleasure of stopping at your car wash this morning. i hope my donation can help with you and other young friends.
CommentsHey Gang~ Great car wash today!! Wanted to say it was a blast & looking forward to the next one.Sorry we didn't make it to dinner...w/3 kids sometimes things don't always go as planned.Will talk w/you soon! xoxox,Shan P.S. Kendal's fine!!
CommentsHey Guys!! WOW.... what can i say except that this was the best car wash that i have ever done. I would have never guessesd that a carwash could raise so much money. :) I cant wait until the garage sale!! Paytons Pals is going to start off with a bang! I will see you guys later. xoxo Jen
CommentsOkOKOK SOrry I have been BUSY!!! WE RAISED $ONE THOUSAND AND FIVE DOLLARS!!!!!!!!!!!!!!!!! YES, that was $1005 at the car wash!! IS that AMAZING or what??? When people |
