Hi out there!!! Hope everyone is doing well!!! If you want to read old journal entries, just click the link above or go to "sign my journal" and then look up the archived ones!
Payton is doing great today and tonight, he is talking as I write this! Last night, he was VERY upset though,and we ALL didn't get to sleep until VERY VERY late!! Nothing was wrong with him, he just wanted me or daddy or grandma and that was it!! When I came home from work tonight, he was chillin' in his new hi-low chair. What a wonderful sight!! I can't wait for all of you to see him around the house like a regular kid! (almost anyway!!!) New pics will be up soon!
Shannon has a Suburban FULL of stuff for the yard sale, but we will take ANYTHING you want to donate!! So, please let me know if you have anything you want to give before Feb. 20th or so, and we will pick it up or get together with you...
For those of you that did not see yet, the benefit is going to be on June 8, 2002!!!!!!! I am very excited already and I have just begun!! I am going to get donation letters first, and hopefully we can get a ton of stuff donated for our live/silent auctions, like last year!!!! We already got a puppy donated, which we were unable to get last year! This is a GREAT auction item, and I am pretty sure that Shannon also got several other "things" donated that you would need with a brand new puppy!! Thankyou Shannon and a huge thankyou to the "puppy connection" for being so generous!!!!!!!!!
Well, have a great night everyone and as always, thankyou for your support and ALL that you do to help us find a cure for this disease for Payton and all of our sma angels!
Love Deb
WOW, PAYTON! All the people who love you filled up the journal so well we had to start a new one! You're amazing, kid! :-) LOTS OF LOVE, Auntie-Amy
Hi Payton,Debbie & Rob, I hope things are going well. Mary told me about your site, so I thought I would check it out. It really looks great. Please let me know about the upcoming FSMA event so we can make this years event even better then last. You all take care and I will speak to you soon.
Hey Payton, Deb, and Rob: I am so happy to hear that you got your chair. An amazing kid like you needs to have mobility! I am also glad you are feeling better. Whatever help you guys need with the benefit i will be here. I will talk to you guys later
love always! Jen xoxoxoxo
Hello out there!! Hi Amy and Bill and Jen!! We are really looking forward to this years' benefit!! I have lots of people offering to help from work and lots of family and friends that have offered their time and energy! Thank you ALL SO MUCH!! It means the world to us! Bill, I will be calling you soon! I am hoping this year is even bigger than last year!! We will have the same auctioneer! He was AWESOME with the silent auction! We will have OUTBACK food just like last year!! DELISH! :-) We will have a band again and this year we will have someone taking video and pics, which we did not have last year. Also, we are going to try VERY hard to get one of the news stations to do a story on Payton. It would be great if they could come here, to our house, or with us to PT or something. If anyone has any connections, let me know, otherwise I will just keep calling! If you have anything you would like to donate to the benefit, please let Rob or I know and you can either bring it here or to Robs' work, or I will meet you. Whatever is easiest!! We would also like to get some info about the event on the radio! There is a ton of stuff to do, and I will keep you all updated! We are going to start with donated items though, so be on the lookout!
Payton is doing GREAT the past few days! He had a great night last night and a great day today! I had to work again tonight, so I am sure that he is looking forward to some mommy and Payton time!! He definitely deserves it! We will be in Disney soon and I really cannot explain how truly excited I am/we are about this trip. I really cannot. But, anyway, it is a wonderful, exciting thing and we can't wait! I will be sure to take tons of pictures!!!!!!! Well, I must go and be with my baby, see you all soon.....and take care!!!!! Deb
Hello Deb and Payton!! We were just checking in and glad that Payton if feeling better and we are glad you got your Hi/Lo chair!! Our PT is getting everything together for the Tiger 2000 and we are so excited!!!! We are looking forward to spring and being able to get outside and enjoy the beautiful weather!! Lily sends Payton hugs and kisses!! Talk to you soon.
Hello sweet Payton!! How is your new chair? I am sure you love it & I am so happy for you that you FINALLY have it! Are you as excited for Disney as your Mommy is? :-) You will have such a great time-ESPECIALLY with your new chair! :-) Deb, I spoke to Robert....his mom will donate artwork again (yay)...Craig is trying to get a cell phone donated, I will ask Lauw about a G.C. from his store and I am having Robert ask his connection at the "Heat" to get another basketball. I will keep thinking of other stuff, too. I LOVE YOU, Me
Hey out there!! Hi AMy and Lily! HOpe you two are doing great! We are always thinking of you!! Marn, you are the best!!!! Thanks for all you are doing! That "Heat" ball was a big hit! The artwork is so awesome, this time ALL the art will be on the live auction. You can get some really good deals on art through these auctions!! I think I may try to get Rob to buy one this year for the house! Call me soon and we'll chat about benefit stuff!!!
Payton is doing great. KNOCK ON WOOD! Disney is coming and I am really hoping for good health when we go away! Have I MENTIONED how EXCITED we are??? Wasn't sure!!!! ANyway, I am getting pics developed with Payton is his new hi-low, so they will be up soon!
The YARD SALE is looking very promising!! Remember, if you want to get rid of anything, let me know, or let Shannon know!! Thanks guys! (Feb. 23rd!)
Take Care and love to all of you!!!!!!
Hi Deb,Rob & Lil' P~ Glad to hear you're soo much better Payton...hate it when you're not feeling well. How do you like watching the big screen now?? Maybe Mommy can teach you how to make cookies now that you're mobile & can get in the kitchen!!! Have received tons of stuff for our garage sale...But anything & everything that you think will sell would be GREATLY appreciated. Just let me or Deb know & if you'd like we can even stop by & pick up your stuff so it's easy for ya!! You can e-mail me at SBeatty195@aol.com & let me know.Was also thinking that a small table with baked goodies might go over well....hot coffee & muffins or doughnuts-every dollar counts so I guess it couldn't hurt to try ....also putting out the SMA ribbon pins for anyone to purchase one who would like to support the fund to find a cure. Let me know if you have any other ideas....well my dear Freemans I'm off to grab a bit of shut eye. Have a wonderful day. xoxo Shan : )
Hi Payton! My Mommy saw that your Mommy posted on my site, so we came to see yours also. You are such a handsome boy, and I hope we could meet some day. That would be great.. We loved to look at your pictures agin and let us know if new ones get up. Big hugs and kisses! Love Skylar and Tracy
Hey there world!! We had a nice evening with our friends Gary and Marlee! THey got to see Payton in his new hi-low chair and we dined on our favorite--Outback, of course! We also got to see our wedding video, which we hadn't seen since right after the wedding. It is wierd to look back and think about all that was going on that day, and all that we were doing and thinking and taking care of...but it is a really good feeling and memory. I feel so much in love with my husband and my son...and it feels really good. And no matter what life throws our way, I know we will have each other and that is all that matters. Each time I hear that line in our video song by Creed, "my sacrifice" that goes, "how life can change...in an instant" and I look around me and see just how MUCH life can change in an instant, and then realize how much Payton has changed us for the BETTER, I get choked up. Rob and I were not bad people or undeserving of a healthy child, but we were definitely not the people that we have become, while taking care of Payton and learning so much from him. I try not to get too dramatic about anything, but some things just really touch me deep...Maybe that is just cuz I am a mom now!!!:-)
Well, Thank you sooooooo much to all of you that are donating things to the yard sale! It is all very much appreciated! To those of you that plan on going down to Miami with me, let me know what time you think you can go, and what day...Fri, Sat, or Sun! Thanks!
Alot of people are asking about the hi-low chair. It is the same seat as the TIger 2000, with a different base! This was not approved by insurance, our friends at the Outback made sure that Payton had it though!!!!!!!! It is AWESOME, and if you have an sma child, you must get one!! THe Tiger is covered by ins. so you just need the base, and it is about $800 if you pay all at once!! THe company to get it from is National Seating and Mobility. They are based in Miami and Tennessee. Ask for ALex or Louis or Nelson.
Have a great night everyone! Love, Us
Hello Deb,Rob, and Payton,
I am glad to see that Payton enjoys his new chair. I love your site and am sorry it took me so long to check it out. Have a great time at Disney, and I'll be caring for you know who's cats. My friends the Ascher's and the Haber's are both looking forward to the next benefit auction as they really enjoyed last years. I'll see again if that tightwad Terry will donate a racing greyhound for the cause....be nice to him Rob and maybe we can convince him...haha. All my love...uncle john
hey guys.
i hope you have a wonderful time at disney. Patyon say hi to mickey for me ok?! I am glad you love your chair i promise to come see you in it soon.
love always jen xoxoxoxoxo
hi there payton.... i miss you and will be there to see you soon... have a fun time in disney and most of all enjoy the world in your new high low chair... have fun........hi to your mommy, my daughter in law... you are so lucky to have her...she loves you so much.... i love you baby boy....g-ma roz and bill
HI Payton, Wow, what a fighter and incredible boy you are! You are blessed to have great parents that fight with you because they love you. Take Care, Skarleth mom to Evan Breton type 1.
Hi Payton,
I hope you are enjoying yourself in Disney World! Give a kiss to Mickey for me. See you on Wednesday.
Love, Susan your therapist
Tammy and I were fortunate enough to meet Payton and family at Disney on Saturday.. Payton was sleeping at the time, but it was a beautiful day and I am sure when he woke up, he saw all the magic that Disney had to offer. We had a wonderful time ,with Ryan and Brittany. Take care and I hope you all had a super time.. You deserve it... Diane and the guy in the blue sunglasses
HEYLO! everyone!!! Well, we just got back from DISNEY!!!!!!!! What a GREAT TRIP! Payton did SO well it was amazing! He NEVER desated NOT ONCE!! I know for you sma parents, that is hard to believe! But, it is true, I guess maybe DISNEY is a cure-all or something!! Even while he was sleeping in the park, his sats were at 99-100, OFF the BIPAP!!! We went with my parents, and we ALL had a great time! Payton slept through alot of disney and some of the monorail rides, but he was happy and comfy, so we didn't bother him. When he was awake, he was just so content to check EVERYTHING out, and he was even good with the VERY loud fireworks!! We took him out to dinner (which we have not done) and that was great too! I have tons of pics which I will develop and post. Everyone was very nice and helpful, our hotel was great, and our adjoining rooms were handicap accessible and were right next to the monorail for easy access. We were sooooo happy with the hotel and the people that work there and in the park. There were TONS of people and kids, even with this being the "slow" time of year. Nobody bothered Payton though...and we got through the park with out any problems! I have a ton to talk about, but I will post again tomorrow, because I am exhausted, and I need to put Payton to sleep and get organized! I just wanted to say hi! and tell you all what a great trip we had and how good Payton was and how much he enjoyed it! Talk soon...Me
I am glad you all had such a great time. Disney is truly the happiest place on earth. It has such a happy atmosphere and i am glad you loved it payton. You really deserved such a fun filled trip. see ya later
love jen xoxo
Hey everybody! It has been a busy week, and continues to be crazy! We have a wedding, an sma event, work, and relatives coming this weekend (relatives for the wedding and then relatives from the other side of the family!) Last night we did not have a nurse, so I didn't have time to go on the computer. Payton has been doing great! I don't want to jinx him/us, so let's just say there are NO complaints!! Last night, he slept fine. I have to go in and turn him several times, and change him, and make sure his feeding pump is on,and of course, all at different times, but I am used to it. He is sound asleep right now!!! He sleeps great, just like his mommy!! It was funny because yesterday he got up really early and started YELLING for me to take him off the bipap and start his day! He never wakes up that early and I would swear he thought we were going to DISNEY again!! He is such a CUTIE! Anyway, I could go on and on about our DISNEY trip. HE did GREAT, his numbers were better than we'd ever seen, he never had a problem. Everyone in the park was nice, the characters took extra time with Payton for pics and stuff...The park was packed even though this was considered the "slow" time. I can't imagine that place when it is "busy!" But it didn't phase Payton, he just was so content and looking at everything!! He couldn't go on any "rides" with the wheelchair, but he could go into the shows, and the "tiki birds" he liked alot! He liked the fireworks (that always is a big hit with him) and he seemed so comfy in the monorail that he'd fall asleep! We took him out to dinner in the hotels' steakhouse, and he was fine there too! It was definitely the best vacation that we have ever had, EVER! And Payton doing so well, definitely made it a stress-free, awesome time!! There will be PICS up soon, I promise! We have ALREADY got pics developed!! Well, must go and get ready for work and speech, and physical therapy! HAVE A MAGICAL DAY!!!!!!!!!!!!!!!
Hi Payton-baby! I'm glad to hear that you dug on Disney World. I've always been a bit partial to the place myself. There's nothing like a little modern-magic to spice up your day! I miss you but hopefully you mom will read this and give you a big hug and kiss for me. LOVE! Your favorite aunt!
Hello out there!! Well, another busy night at the Outback! My feet are beat up tonight! Payton went right to sleep when I got home. I think he was just waiting for me. :-) We got the Disney pics back, and I will post them ASAP, so be on the lookout for them! Tomorrow we will be at Ryan and Jamies' rehearsal and dinner for the wedding...We are looking forward to seeing everybody there! Someone asked me tonight if Payton was getting better (alot of well meaning people ask me this) and at first, I was like, well, not really, he sort of stays the same, and then, I remembered! All of a sudden Payton has started to move his legs!! I know that it is crazy, but he really has! Just a little, but enough to get excited about. He has NEVER moved his legs. Maybe his first 2 months, and just barely if he did. His feet started to drop a while ago, and we are looking into splints and stuff, but we just noticed that he started moving his knees back and forth, which apparently means he is using his hip muscles! I was so proud, and happy to be able to relay this to my concerned friend! And many docs told us that he would NOT regain any of the strength he has lost, so what about that???????? Anyway, take care everyone, have a great night, and remember, WE WILL FIND A CURE!!!!!!!!!!!!!!
PAYTON! THAT IS SOOOOO GOOD! I'm so proud of you! I hope you LOOOOVE moving your legs and that you try to do it ALL THE TIME! Next time I see you, I'm going to tickle your knees and you'll have to KICK ME to make me stop! :-) Hee hee hee!!!! I LOVE YOU! --Auntie-Amy!
Hey there Hi there Ho there Freemans!!! Glad to hear Disney was a blast~looks like some of the magic came home with ya'll!! Come on Payton move them knees!!! Ya know we're all rootin for ya lil' buddy. Deb give me a holler checking in to see how P's doing. Luv ya xoxox Shan : )
Heylo out there!! Well, it is always something isn't it....I was informed today that Paytons' nursing has been cut back to 40 hours per week instead of the 84 HOURS we have been getting for a YEAR now...I guess they never expected Payton to live this long. It is such an injustice what insurance companies in this country are ALLOWED to get away with. Unfortunately, the people that suffer the MOST, are usually too sick to fight back, and therefore they just lose their coverage, as they are unable to pay the outrageous rates they are soon charged, once they are diagnosed with a serious illness (esp. one in which they require long-term care) and then they must get medicaid. So, after paying outrageous money their WHOLE lives for insurance (in case, God forbid, that anything ever happens, or they DO get sick), they are soon dropped (which could happen if you are able to somehow keep up with all the raising of their rates) and put into the states hands...I could go ON AND ON AND ON about this issue, as I am sure you all could imagine. Don't worry though, we are going to FIGHT this! I am going to get all the info tomorrow, and figure where to go next. It is amazing to me how difficult they make it for you to care for your sick, terminally ill child, that can't barely move or swallow. If they met him, and still denied us it would be one thing, but they just do a review, realize how much money they are spending on this kid, and how much it will cost to continue like this, and just CUT THE BENEFITS. They don't care, they are allowed to do it, and they probably laugh at us trying to fight. There are no regulations with insurance??? You will probably spend more money during your life on insurance than on anything else, and if you need to collect,you are on your own. God forbid, you are really sick and can't deal with all the red tape and hassle of getting what you need. Fortunately, Payton has us. I guess this is what my purpose is in life...
#1 FIND A CURE FOR SMA
#2 CHANGE OUR DISGUSTING "HEALTHCARE"
The irony is that they call it "insurance" It is anything but...
I am sure that I am not the only one that feels this way. Let me know what you think...I want to know.
P.S. The rehearsal and dinner tonight was wonderful and we are looking forward to seeing Ryan and Jamie be wed! What a great family she has!! Ryan is very lucky!
HEY PAY JAY, DEBBIE, AND ROB!!!! I MISS YOU GUYS SOOO VERY MUCH. IT'S ABOUT 2AM AND I'M AT THE SCHOOL LIBRARY DOING SOME STUDYING SINCE I HAVE FOUR TESTS NEXT WEEK!!!AHHH!! SCHOOL IS GOING VERY WELL, BUT IT IS VERY COLD HERE.I NEED A PAYTON TO SNUGGLE WITH=)OUTBACK UP HERE IS BETTER EVENTHOUGH I GOT OFF TO A ROCKY START. I WORK THERE 2 NIGHTS A WEEK AND AT A NICE BAR 2 OTHER NIGHTS. I'M GLAD TO HEAR THAT EVERYTHING IS GOING WELL. I WILL TRY REALLY HARD TO STAY UPDATED IT'S HARD THOUGH B/C I DON'T HAVE MY OWN COMPUTER AT HOME. I'M SURE I'LL BE AT THIS LIBRARY ALOT THOUGH SINCE I'M A BIG STUDY NERD!! SO DEB HOW'S OUTBACK GOING? HEY TELL YOUR PARENTS I SAID HI. I MISS YOU TOO ROB. LOVE YOU SOOO MUCH XOXOXO JAX
Hey Deb!! I am with you on the insurance issue!! When Lily was first diagnosed with SMA we had to fight for EVERYTHING!! They wouldn't let us have a simple pulse ox machine, then denied us the bipap, inex, and so on and so on!! We fought them not only with a lawyer (who thank God gave us his services for free), but with our State Insurance Commissioner, and our Local State Representative. Lucky we have a wonderful Case Manager but she can only do so much..our last trip to the ER the doctor sent us with an order for Oxygen, and our Peditritian ordered it too..and THEY DENIED IT for us too..but our Case Manager fought that too. But of course our fights are still far from over..we are fighting for nursing now too!!! Insurance companies are there when you are well..but heaven forbid you be the one SICK with something like what our kids have...they think our kids lives are not worth anything!!! I am with you and agree and am horrified that they would cut your nursing benifits that you have had...it is horrible!!! On another note Lily's stats are back to normal..I think it was a gassy problem which causes her so much discomfort!! Lily sends hugs to Payton and I do too of course..and to you too. Also to your husband if he wants them (lol). Talk to you soon.
Well, hello to the Freeman's. Everything that I've read sounds really exciting. Lots of stuff goin' on at your house!! What with that new chair of yours and all your recent activities. I can't wait to see the new pictures, especially the ones from Disney.
I have some stuff to donate to the garage sale. It's not a whole lot, but I wanted to get rid of some stuff anyway(as I'm sure we all do...)and who better to give it to than to Payton's cause??! I was really glad to read that you were having this because I would much rather help in that way than to give it to "good will". At least I know the person that I'm helping. I will call you Deb, or e-mail your friend Shannon. It sounds like you're sooo busy.
I'm also excited about the benefit in June. I would love to come with my husband this year. Last year we had just had the baby (Joseph) so our timing was off. But, hey, we could also use it as a night out alone together. We don't get many of those. Debbie, you were so right that Mommies need their alone time. (and alone time with hubby)
Anyway, I'm rambling. Talk to you soon. Love, Anissa and the Crew
P.S.-This website looks really great. I have to tell you that I really enjoy visiting it. Payton, I showed MY mommy your site and she says that you are a BEAUTIFUL boy! But, I bet you already knew that! Take care....
It is funny how things work out sometimes...Last night after Ryan and Jamies' beautiful wedding (we all had a great time-she looked beautiful) I was feeling like I was getting sick, you know, that sore throat, swollen head, stuffed up feeling. Anyway, Robert gave me some vitamin c, sudafed, and echinacea (He REALLY didn't want me to get sick-I wonder why????Hee Hee) I crashed and slept in, but felt worse in the A.M. So I decided to take the day off from everything...a meeting at work, physical therapy, the "great eskate" ....and just rest, as I have to work tomorrow, and more importantly I have to be well to take care of Payton (my mom has been doing pretty much everything--to keep my sickness away from my oh so vulnerable baby) Well, low and behold, Rob was at work, I WOULD HAVE been in Miami, and my mom would have been alone... Payton had a bit of a mucus plug, teamed up with a very serious and rough bowel movement, and lost his breath, literally. He was desating while taking breaths off the bipap. AND FAST. I flew over and starting giving him the in/exsufflator. Not the ex, just the in. I could hear a plug, but more importantly, I was giving him the blast he needed to catch a real breath. (I had to do this about 8-10 times to get him going) He was gray,eyes open, but face as gray as a ghost. THis is definitely a scary sight, but unfortunately/fortunately I have seen it MANY times, so I do not get flustered.I have learned alot in the past 2 years, esp. to keep cool under pressure. If I lose it, things get very ugly.... ANyway, Payton is napping on the bipap with the excellent numbers that we have enjoyed for a couple weeks, and he is fine. But, I was just thinking how lucky I/he was to be home...Sometimes your body lets you know more than you think....This is not something that I would want my mom to have to deal with alone. She is very capable, and we are very confident that she would act as well as me or Rob, but it is better when someone is there to help, believe me I know....Every breath he loses during one of these episodes counts. After a certain amount of time (and it is NOT long) he would experience brain damage. Fortunately for Payton we have been successful at getting him breathing again quick. But it makes me worry about the next time. He is doing SO well, and for this to happen is quite a bummer, but just a reality check. He IS fragile, and he DOES need nursing, and he IS terminally ill. All this does is make me realize how much we really need the things that insurance keeps trying to take away from us, and from Payton. It is so ridiculous that we have to "fight" for the things that these kids are entitled to. My son is LUCKY to be alive, and we are all so happy to have him here with us still, and the ins. company is NOT happy about it. He is just a huge expense to them, and they had their way we would have been dropped the day after his diagnosis. Well, I hope to see you all at the benefit, and maybe we can make some changes....for Payton, and all of the other sma babies out there!Take Care
Hi guys, sorry to hear of your rough day, but glad to know that everything turned out alright. Everything (I believe) does happen for a reason, thank God you were home Deb, not that mom couldn't have handled it, but I'm sure that Payton was glad that you were there after everything was over. We are so excited about the 2nd annual "So Many Angels" benefit! We had so much fun last year, and we know that this year is going to be twice as big, and twice as fun!We are making a difference and there WILL be a cure! Once we raise enough money to find a cure that's long overdue (I've read articles stating we should have a cure w/in a year-that was dated over a 2 years ago) then we could go after "healthcare". We will be there to support you, and I'm sure others would too. I'm so glad to hear that soooo many people want to actively help with this years benefit. The more people involved- the more successful. As soon as Bill gives you a donation letter, let me know so I can send it out to all the companies who gave donations last year ( I have all the addresses, email me with addresses of companies who responded to you too- and I will take care of them all). Are you still interested in starting your own South FL SMA chapter? I would still be interested and dedicated if this is still an idea. I still want to give you this fundraising packet I ordered- it has a lot of great information. Call me. We can't wait to see the Disney pics! Post them soon! Lots of love and prayers, from our family to yours-XOXO, Matt,Kelly, & Max
Hi out there! I am sooooo tired! It was another crazy night at work, and I am still not feeling myself, so I got a little lightheaded tonight. But I am home and loading up on sudafed and things of the sort! My mom and grandma and aunt Lorrie and aunt Joni and cousins Betsey, Molly, Samantha and Katie ALL came to visit me tonight! What a treat! I am looking forward to dinner with you guys tomorrow! Thankyou so much to Jen P. and Michelle for donating stuff to Paytons' yard sale! We are really looking forward to it! Kelly, you are so good... I definitely want to get something started, but not until next year. I just couldn't do it no matter how hard I tried right now--not enough hours in the day!! But, the benefit will be GREAT! Thanks to so many people like you! I look forward to starting our own chapter in the future. The yard sale is February 23rd! Don't forget! ANissa, it was great to hear from you. Please email Shannon if you have alot of stuff. Otherwise, call Rob at work, and either he or Michael will pick it up! Thanks alot! I look forward to seeing you guys soon! Well, our nursing is all a wreck right now, but we are going to try and get things going tomorrow--so wish us luck. I will find out how the "great eskate" went tomorrow, so I will let you know. Rob did ALL the printing for this event (about 1,000 bags and shirts and did NOT charge them ANYTHING to print them--they paid for the cost of the shirt/bag and that is all) All proceeds went to FSMA, so it was our pleasure to donate, and Robs' pleasure to print!!! =) Anyway, we are so looking forward to this years "so many angels" benefit. Kelly, as soon as I get the letter together, I will get them to you. I have been working on this... Take care everyone & goodnight!
hey guys, i just got back from studying and finally had the chance to catch up on some payjay reading!!! i'm so happy to hear that you had a qonderful time in disney. payton, did you see buzz or woody? well i'm glad i got the chance to talk to you for a bit this afternoon deb. i needed to hear some familiar voices from home. i sent some pics with mike ross so you guys can see my house up here. oh by the way my address up here is:
1878 Honeysuckle Dr. Tallahassee, Fl 32304
ok well i miss you guys sooo very much. oh and tell rob that i had to buy a stupid step stool in order to reach my kicthen cabinets. i knew he would like that. I LOVE YOU XOXOXO JAX P.S. DEB, WRITE JIM AT JIMBO0413@AOL.COM
Hey guys, We just want to Thank you both for coming to the wedding. We really enjoyed having you there. You guys made it so special for us. It meant alot for Ryan to have you there also! We love you guys. I am sorry to hear about Payton. Thank goodness you were home Deb! I hope you and Payton feel better. Hugs and Kisses XOXOXOXOXOXOXOXO
The Withey's :)
Hi Freemans! It has been a while since I have checked out the site. First of all, I am so excited about the benefit but even more excited about Payton moving his legs - that is amazing! (Deb, why don't you call Lucy...tell her to put that in her pipe and smoke it!) Anyway, no doubt this is just the beginning...I know that Payton has lots more good stuff to accomplish. Just want you to know that I am in such awe of all of you - I think you are the strongest, bravest people I have ever known. My thoughts are always with you! Deb, just left you a message at home....gimme a ring and let me know what your plans are for the weekend. I do not drive too far west anymore...but I think if you will be around I could be persuaded! Okay, back to work for me!! XOXOXOX and love from Brandon and Steve as well. -Renay
Hello there Freemans!!!! Hope you're feeling better Debbie.Things don't run as smoothly when Mommy's sick...so hurry & get better. Lots of stuff for the garage sale at the house right now(not that I'm greedy or anything)BUT every little bit will help so COME ON FOLKS CLEAN OUT THOSE CLOSETS...you know you have clothes,shoes,toys,frames,dishes,blankets,etc. just taking up precious space in your homes...e-mail me at SBeatty195@aol.com & I'll swing by & pick up your stuff.Lots & lots of baby items so if your in need or know of someone swing by the yard sale. Feb 23rd at 10855 NW 40 Street in Coral Springs. between Wiles Rd. & Sample Rd. off 110th Street. Also if you're available to help out during the sale that'd be appreciated also. Just let Debbie or myself know. Glad to hear P's feeling better...as a Mom myself it's scary enough just when my kids have problems from having the flu or something...applause & koodoes out to you Deb...every day you amaze me even more...It's a bird It's a palne No It's SUPER MOM!!! have a great day & Let's get together soon. I miss you Shan xox
"WOW!!" That's pretty much the best word to describe how I am feeling after reading the past 2 weeks of journal entries. To say that A LOT has happened is an understatement. Deb, I had tears in my eyes when I was reading about Payton moving his legs. I am sooooo ecstatic, that words cannot express it! I HAVE to come by and see Payton & you very soon :-) Please call me so we can make a date. I may be able to get some stuff together for the yard sale, I will have to talk to you about it. :-) I have left you a few messages, but have been unable to get to you. I hope you are feeling better, Deb & I am glad you were (AS ALWAYS) there for Payton when he needed you. HUGS & KISSES, MARNI P.S. "BIG NIGHT" TOMORROW @ 9PM FOR THOSE WHO HAVE A MENTAL BLOCK AGAINST REMEMBERING!!!! :-) LOVE YOU
Hey Debbie, Rob, & Payton, What a website, I have to tell you I got online a little after 10:00 PM its now 1:50 AM and I'm still here!!! I have REALLY enjoyed the pics being that I haven't seen Payton in sooo long ( He's getting so Big, and of course as beautiful as ever!!!)Also, the journal my god Deb your doing a great job. I have learned SO much. I talked to Holli tonite and she gave me the website info. and I've been here ever since(and I work at 8, ugh!!) Be sure to let Joe and I know of the next Benifit dinner. As I've said in the past if I can help in way (volenteering, flyers, etc.) let me know. I can't wait to see the pics of Disney and of Payton in his new High/ Low chair!! I'll be back. Happy Valentine's Day Payton!! xoxoxo, Lisa
Hello, its me again!! I read the journal backwards (current then past) then I went to check it out again and I remembered Payton's knees moving GOOOOO Payton I keep praying for you sweetie!!! Keep up the good work !!! You too Robert & Debbie your strenth is unbelievable & unstoppable and Payton is a VERY lucky boy with the two of you!! Happy V-day I must go directly to bed now. Good night xoxoxo, Lisa
Happy Valentine's Day to you my sweet precious little punkin! see you later, love you lots, grandma.
Hello hello to all our visitors!!! Unfortunately I have been sick as a dog, and now Rob is sick too. This makes it very difficult to take care of Payton--thank goodness for grandma!!!! Payton has remained well so far--so, keep your fingers crossed! It is NOT GOOD when he gets even the slightest bug....Thank you soooo much for donating all the great stuff to our yard sale!! We are hoping for a huge turnout for this yard sale! Don't forget--February 23rd (Saturday!) I should have the donation letters for the benefit by this weekend, so I will get them out ASAP, if you know anyone that would like to donate, and you need tax ID info, or any help at all getting it organized, please just email or call me! Remember, Saturday, June 8th is the BIG day, so mark it on your calendars!! We are hoping to out-do last years amazing fundraising efforts!! So, let me know if you have ANY ideas or suggestions!! Lisa, you were such a big help last year with the letters, if you could do the same I'd be very grateful!! I will get a couple of pics together, and all the copies of sma info,etc..and get them to Michael asap if you can do it. Let me know....Hi Marni and Renay! I miss you guys! You MUST come and see Payton!! Hello Ryan and Jamie! ANd miss Jackie! We miss you so much! When is your next visit?? SHould I mail your invite up north? or home??? Shannon, I have been trying to get in touch with you, I will email you tonight!
I haven't written in a couple days mainly because I have been so sick. But it is also because I have not been able to focus, since our latest bomb.... Our insurance company has decided that they have found a loop-hole in our policy that says that we are entitled to only 28 hours a week of nursing...therefore, they gave us about 8 hours notice and dropped us from 84 hours a week, to 40 and on the last day in FEB. we will go to 28....They do not deny that the patient needs the nursing, they just don't want to pay, and do not have to. They also have not returned one of my phone calls, and this all went down last Thursday. I figured it would be pretty easy to start with medicaid, since Payton obviously qualifies. But, I should have known better. Nothing is easy, when it comes to getting ins. or the state to PAY. I wished I had taped my first phone conversation with CMS (Childrens Medical Services- a small division of medicaid, existing to help children that are sick and needy and keep from them falling through the cracks, when ins. doesn't do what they are expected to) The woman I talked to was so negative, and basically let me know, that even though we probably would not get approved, she'd get me the number of someone else I could talk to. She also went on to give me the list of things that I needed to do and get, to even start this process, all of which would have taken me weeks...I NEVER get upset with any of this in almost 2 years, and I was almost brought to tears realizing that the people that I thought were going to HELP us, were just as defensive and uncooperative as the ins. companies. I actually got into a slight arguement with one lady, and she told me that if I was to complain to anyone it should be the ins. companies with the deep pockets, since they should be paying and not CMS!! This is actually just a very small excerpt from a crazy week of phone call after phone call and very little help, but I am sure you get the idea. We STILL do not have enough nursing, so in the middle of all this BS, who suffers the most?? Payton--the sick child that is oh so in need, suffers. ANd his family suffers. THey expect me to jump through hoops, go to meetings, spend hours at SSI and other appts....all when I have no nurse to help me with the baby. It is a total joke....It is so much red tape, and hassle, it is amazing to me that this is supposed to be considered "help" All this does is stress me out. Not Payton--not the disease--not the fact that he is terminally ill--not all the work involved--none of it stresses me out except for dealing with the people that are supposed to make it easier.....and don't. As a matter of fact, one of the ladies told me in the middle of my explaining how difficult this is going to be, that alot of people can't deal with the red tape and just stop calling her. Unbelievable. SO, you are telling me that the MOST desperate people, who are incapable of even keeping up with you, stop calling and you don't keep up with the case and help them along??? That is NOT her job. Well, we have our work cut out for us, that is for sure. I hope that you all do not EVER have to deal with the insensitivity that I have seen from ins. and the gov. agencies that we have had to deal with...I am still hopeful that we will come across some nice soul that sees the deal and actually does care, and actually does the right thing, and MAYBE even does their JOB!!!!!!!! That would be fabulous!! Take care and have a HAPPY VALENTINES DAY!!!!!!!!!!!!!
P.S. Michael and Lisa, please tell auntie nana that is the most beautiful blanket we have ever seen and thankyou sooooooooooooo much! A lot of work went into that blanket! It is wonderful!
Hey, Payton-Baby! ... Will you be my valentine? You'll be the sweetest little valentine I've ever had! ...and don't forget! Grampa's birthday is the day after tomorrow! (Give him a big sloppy wet one for me!) LOVE! Auntie-Amy
hello my sweet little boy......happy valentines day! will you be my valentine?? I love you.. tell mommy and daddy i hope they feel better.....
Happy Valentines Day !!!!!!!!
xoxoxoxoxooxoxg-ma roz and bill
Happy Valentine's Day Payton!! I hope one day we get to meet (and that we will be cured and have alot to talk about and PLAY!). Mommy put me on her lap and let me look at your pictures tonight and I thought you are so cute and handsome!! Mommy sends her love to you, your mommy, and your daddy and says for them to get better fast and for you to stay healthy!! And I say way to go on moving your legs!! It is fun to move isn't it?!!! Love Lily (SMA type 1, 8 months old)
Hellooooooo.......Update on nursing...well, I finally got someone on the phone at United. He was actually NICE and asked if I could get a letter stating that Payton needs nursing (and how many hours) from his pulmonologist and send it to him. This is actually in the works, so I said yes. He called me later to say that I would need to fax the letter next Monday to a woman that is now working on our case and that she would bring the letter to the "medical directors" attention. (he apparently can make the decision to continue coverage temporarily) SO.....keep your fingers crossed...We have an appt. with SSI (the first step of getting help from CMS with nursing coverage) next Friday (the earliest we could get) and these are just a few of the things they want me to have:
Paytons birth certificate, documentation of disease/diagnosis and description of/implications of, etc...all doctors that Payton has ever seen, hospitals he has been to, visits, what those visits were for, dates, addresses,etc...All medications, equipment that he is using (must be documented), bank statements for Rob, me, and Payton, paystubs for me and Rob, tax info for last year from me and Rob, (must be actual documents), tax assessment notice, stock information, bond info, and any mutual fund, 401K or IRA info, and life insurance policy information with policy numbers,etc.. DOB and social on all of us, mortgage receipts, make, model and year of vehicles, verification of total income of house hold, burial contracts on all of us....do you want to hear more??? This is actually just the preliminary stuff....All just to get help with NURSING for a terminally ill, well "documented" baby. I know lots of people have to go through this to get help...BUT, when you need help because you have a "disabled" child that requires 24 hour nursing care, you should be treated as a priority, and not made to feel like a liar or a cheat or like you are trying to get something for free!.... They just say that this is the way the system works, and that is it...period.... Is it me, or is this completely unjust?? Well, let's just hope that the medical director takes "pity" on poor Payton and his family and helps us with nursing for a few weeks. Then let's also keep our fingers crossed that we will even qualify for any help from CMS. And then let's all get together, in one big power hug...and pray that mommy doesn't lose it and pull a JOHN Q on them!! :-)
For those of you that don't know me...I am kidding. But wouldn't it be great if I wasn't????????
Have a great day Love The Freemans
Ok, I'm back again. I must say, if you don't like hearing me complain, you probably shouldn't read the journal for a couple weeks! Just til this nursing-insurance-medicaid thing gets rolling! :-)
Anyway, on to happier things...I am feeling 100% better today! Thank goodness! I believe that Rob is a day behind me, so by tomorrow he should feel 100% too. Payton seems to be sleeping it off but not showing any danger signs, so keep your fingers crossed!! He had his RSV shot earlier this week and little man acted like a BIG BOY, and did not even crash for the shot. This was very impressive! That was on Wed. and they promised to fax a letter of necessity for nursing, but we don't have it yet...Payton seems to be hooked on a few movies lately--not just one or two. We are very thankful to be able to choose now. He likes Shrek, A Bugs Life, Veggie Tales, Toy Story, Emperors New Groove and Atlantis. Grandpa just got him Peter Pan, so we are trying to work it in slowly. We are VERY excited about the benefit, and if you know of anyone that would like to attend or want to give me your address, just email me!! We are designing a new t-shirt for this years event. Let me know if you have any ideas!
We are without a nurse tonight, AGAIN, so I must go, but take care everyone and wish us luck!
Hi Debbie, Robert, & Payton Deb I'm very happy to hear that you are feeling better and I hope Rob is right behind you!! The insurance issue sounds like and is an ABSOLUTE NIGHTMARE!! I wish there was some way to affect them like maybe a BIG protest or something massive thru emails. Somehow get a list of their policy holders (maybe Pamela could get something like that) and email them all a standard letter about Payton and about their policies and the lovely attitudes their insurance company has and I don't know asking them in the email to take 5 minutes of their time to comment to the insurance company what they think of their policies. Wouldn't that be GREAT!! Imagine the insurance company receiving 300,000 emails on behalf of Payton a day about how insensitive they are and how much they SUCK!! Wishful thinking and sounds a little crazy I know but it felt GOOD to get out!!! Give me their address I'd like to drop them a line!! Anyways I'm just upset to hear that you have to deal with crap like this, what is insurance for if not to help people who need it??!!After hearing all Dawn's insurance nightmares and now yours I just can't believe it!! I'll stop now but I am ALWAYS praying that Payton has and gets all that you need to continue giving him the best care. I definitely want to do the flyers again. If you want you can pick some pictures from the website and give me the names of them. I can copy them into a file and make another collage if you'd like? Just let me know. I'm glad you like the blanket from Auntie. My Great Grandma actually made it and Auntie was so excited to give it to Payton. We just got back from visiting them up in Jersey. Joe and I went to the Pocono Mountains and went sking for the first time. It was amazing!! I will talk to you soon, say hello to Robert from Joe and I. Give Payton Hugs and Kisses from the both of us. Bye for now Love, Lisa
Hi Debbie, Robert, & Payton Deb I'm very happy to hear that you are feeling better and I hope Rob is right behind you!! The insurance issue sounds like and is an ABSOLUTE NIGHTMARE!! I wish there was some way to affect them like maybe a BIG protest or something massive thru emails. Somehow get a list of their policy holders (maybe Pamela could get something like that) and email them all a standard letter about Payton and about their policies and the lovely attitudes their insurance company has and I don't know asking them in the email to take 5 minutes of their time to comment to the insurance company what they think of their policies. Wouldn't that be GREAT!! Imagine the insurance company receiving 300,000 emails on behalf of Payton a day about how insensitive they are and how much they SUCK!! Wishful thinking and sounds a little crazy I know but it felt GOOD to get out!!! Give me their address I'd like to drop them a line!! Anyways I'm just upset to hear that you have to deal with crap like this, what is insurance for if not to help people who need it??!!After hearing all Dawn's insurance nightmares and now yours I just can't believe it!! I'll stop now but I am ALWAYS praying that Payton has and gets all that you need to continue giving him the best care. I definitely want to do the flyers again. If you want you can pick some pictures from the website and give me the names of them. I can copy them into a file and make another collage if you'd like? Just let me know. I'm glad you like the blanket from Auntie. My Great Grandma actually made it and Auntie was so excited to give it to Payton. We just got back from visiting them up in Jersey. Joe and I went to the Pocono Mountains and went sking for the first time. It was amazing!! I will talk to you soon, say hello to Robert from Joe and I. Give Payton Hugs and Kisses from the both of us. Bye for now Love, Lisa
Sorry about the double Deb I didn't know it had already sent!!! XOXO, Vegtable
Hello Debbie Rob and Payton, We wish you the best, you are always in my thoughts and prayers. Love, Dawn Sansone
Hey Deb,Rob & Payton, Glad to hear you're all feeling better (physically anyway). Can't stand to listen to this insurance Bull Sh*t...it totally pisses me off. I think your friend is right we all should write to these folks & let them know just what an injustice they are doing to Payton. Can't you get in touch w/the insurance commisioner of Florida?? Can't we all get in touch w/him?? God~ when is enough enough...they won't approve his formula,they won't approve equipment and now they won't approve nursing...oh I'm sorry they'll approve it just not the amount of nursing he requires. I say screw it Deb don't get sick of calling them & asking questions & demanding answers. Pester the living sh*t out of them until THEY are the ones to get sick of it & just give Payton what he needs so they don't have to listen to you any more. I say post their phone # on the journal & lets all make this happen. You can gaurantee that if one of their children had SMA this would all change in a freakin' heart beat. You just let me know who I have to call & I for one will make damn sure I'm on the phone 3 or 400 times a day!!!!! Deb~ tried to get in touch w/you today...Mom said you were at a meeting. Give me a holler soon!! I miss you!!! xoxo Shan P.S. Give Lil' P a smooch for me please!!!
Hi Debbie,Rob, and Payton, I am so glad I finally got to meet you Rob and Payton! I wish when we were there we could have helped instead of just visiting. I didn't know you were having trouble with the ins. paying for a nurse. You know nothing against old people but they have nurses come into their homes every night for years and years! I don't understand their thinking, what about the people who have ins. and hardly ever use it? So are you guys staying up all night? Oh my, I wish I could have stayed longer. I really enjoyed my visit but it wasn't long enough. I can't wait to get my pictures back, and hopefully everyone is in them!! Lorrie
hey guys!!!!! well just caught up on some reading glad to hear everything is going well. i can't till the so many angels benefit. my parents and brother are up visiting so we've been running around like crazy. well just popping in to say hi and i miss you. you can send my invite either house. i'll end up getting it ok.
did you get the pics i sent through mike? love you xoxoxo jax
Hello out there! Well, I just got home from work. I do enjoy my bar shifts very much. They are short, fun, and well worth the money! I only wish I could do them more often! Payton is doing great! He went to PT today without me, and went with daddy and grandma. I watched him going out the door on my moms shoulder and felt like I was sending him off alone for the first time, and was such a proud mommy! It isn't the first time he has gone somewhere without me, maybe the 2nd!!! Anyway, I hear he did great--and had no problems. Awesome. Tomorrow, we have a lot of work to do. I will get in touch with Paytons doc and see if we can get that letter expedited to the ins. company and maybe get temporary help. We will have our appt. with Social Security this weekend (Payton must go through Social Security first, because he has a disability and that is why we need help), actually on Friday, so I will keep you updated on how all that is going. In the meanwhile, we are managing with 40 hours of nursing a week, and as of Feb. 28th insurance is taking us down to 28. Like I said, they don't deny the need, they just don't have to pay, according to our policy. Anyway, I never thought not having nursing would affect us the way that it has. It is SO IMPORTANT!!! They give us peace of mind while we sleep. I cannot put a dollar amount on that!! I do NOT sleep when there is not a nurse here. Maybe for a couple of hours at a time-Max-and they are not sound hours.And this is not to mention all the HELP they give, cleaning equipment, taking care of Paytons' food and making sure he is fed every two hours, turning and changing and making sure that his face is dry (he could get a rash from all the drool--and plus he HATES when his face is wet) they monitor the equipment and let us know when something needs to be fixed or looked at, they monitor GI issues and respiratory issues in case we need a doc, and basically just give me some time to do laundry, go to the bathroom, write on the computer, take a shower and sleep. While they are here, I know a trained professional that CARES about my baby is caring for him at his side and knows what to do if he stops breathing or gets a mucus plug and needs help!!! I had no idea how much I needed these things, and how much I appreciate the nurses...Anyway, hi Jackie and Lorrie and Shannon and Lisa and everybody that reads this journal!!!! We appreciate it sooooooooooooo much!! Debbie and Jason, thanks so much for visiting with us Sat. night! It was a nice surprise-and we enjoyed having you-even if only for a short while!! Definitely come by and visit anytime you come down!!
HAPPY BIRTHDAY DAD! GRANDPA! FATHER-IN-LAW!!! :-) We love you very much and enjoyed dinner and ice cream cake with you last night!!
Also, HAPPY BIRTHDAY HOLLI!! Hope your 29th birthday is as fun as mine will be!!!!!!!!!!
Well, we miss you too Jackie!! I have not seen any pics yet, but I will ask about them!! When will you visit? Spring Break? Well, I will send you a pic!! Kisses and hugs from Payton me and Rob!! Lorrie it was great to see all you guys--you need to try and come down more often! We really enjoy seeing grandma-so it is nice to have her for a few months! Please send me some pics when you get them!!
It looks like the garage sale will be at my mothers house! This is because they live right on Royal Palm Blvd!! SO, if you can help or want to come or just want to donate stuff--get to me or get it to me this week!!!!!!! It will be on Feb. 23rd and it is coming soon! Wish us luck!!
Take care everyone, especially you precious innocent little sma babies out there! We are pulling for ALL of you! :-)
Hey Deb, I definitely have stuff for the garage sale. I am looking forward to it. I think I will come by and be a shopper. I wish that I could work it with you guys, but I have no one to watch the kids. Let me tell you, it is amazing how much stuff you can stand to get rid of. You think you're going to use it, or wear it, or for that matter will STILL fit into it!! Please don't laugh at the amount of shoes I'm donating. I used to wear heels to work. But, after having the kids, my foot size went up about 1/2 a size. (so did my butt!! shhh!) Anyway, I hope that I made you giggle in this yucky time you're having. Talk to you soon... I'm going to call you to come by and drop the stuff. You live close enough to me and I can swing by, if that's alright. And I will get the address of the sale. Take care, Payton, little buddy. I hope I get to see you. Anissa
Deb - It was so good to see you at Outback on Sunday, we miss you when you arent there.....Its so nice to have someone so positive and upbeat around! You have so much on your mind, yet you always take the time to ask how everyone else is and are always there to listen, Payton is so lucky to have a mom like you! I was so happy to read that Payton moved his legs! that is so great!!! I'm loooking forward to the event too, i didnt get to go last year, but i will be there this year! I'm so mad about the nursing cutbacks you are having to deal with! As if you dont have enough to worry about! Let me know if you need anything please! Good luck with the garage sale too, i still have some stuff to give Shannon! I hope it goes great!! I just wanted to let you know that i was thinking about you guys! Give Payton my love, and know that you are all in my thoughts! Love Brooke
Hey Deb, thanks for letting Jason and I come in and hang out with you guys. It was good to see you again and to finally meet Payton! Such a good boy! I hope you and Rob get this insurance thing worked out. What kind of people are in this state? You KNOW if it was their child who needed help, they would get it! Keep up the fight and never back down. Your son deserves it. So do you. All of you are in my thoughts and prayers.-- Jason said it was cool to see your mom and dad after all these years. He says HEY to every one! Well, I gotta go but I hope to see you guys again soon . Take care, Debbie
HELLO. Well, grandma was kind enough to watch Payton while Rob and I got a break, and went to see a movie. We have been wanting to see JOHN Q since the first preview, so we saw it tonight. For those of you that have not seen this movie, it is a MUST SEE. Not just because you will see what ALOT of our lives are like, but because it portrays the truth, the truth about our healthcare system, the truth about illness, the truth about docs, and hospitals, and the TRUTH about insurance companies....Within the first few minutes of watching this movie, I was like 'oh god, was this a mistake' because I was ALREADY getting tears. EVERYTHING in the movie was similar to something that we have been through. And while it has been tough, and we have seen the worst and best in people, we/Payton do not have that urgent need that someone with a defective or failing organ has....This man went through everything that we are going through, but he needed a heart for his son, and he only had days/weeks before his son would DIE. He had full coverage, but his insurance found a way to give him half coverage, then denied paying for the transplant, because it wasn't in his policy. He says, "oh no, I'm insured! It's covered." The hospital says, "you may very well be insured, but this is NOT covered!" He applied for medicaid, but did not qualify, because he made too much money ($18000 a year)...His friends started giving him money and having garage sales,etc...and I was hysterical because it makes me soooo upset that this is the ONLY way sick kids get what they need!!!!!!!! WHY DO WE HAVE INSURANCE IF THEY DON'T PAY???? WHAT ARE THESE STATE FUNDED ORGANIZATIONS FOR IF YOU ARE BROKE AND SICK, AND STILL DON'T QUALIFY????? If someone can answer this for me, please do. I was crying pretty much through this whole movie, but please see it anyway, and you will definitely get a better picture of what we have been through. I told Rob that if things ever got like that for us, I would be HAPPY to be the one to rock the boat, and get what my son needs. HAPPY.....And even if you don't see the parallels, you will see what insurance does to everyone...not just us, we just bring it to light, because we actually want to use it. But most of you don't realize how little they will do for you if you get REALLY SICK, or if someone you love does...So remember, if you EVER have an opportunity to vote locally, and change our healthcare, DO IT!!! NOT just for PAYTON, but for EVERY SICK CHILD OUT THERE!!! There are plenty of them out there and they will all be thankful, believe me. Anyway, enough about that. My ins. company has not recieved our nursing need letter yet from our doc, so we are waiting on that transaction. When I found out what their decision is, I will let you know. We will apply for SSI on Friday (you CANNOT get medical care through medicaid, without first applying for SSI ) We will certainly be denied for this ( you have to be living under a bridge and not even HAVE a father to qualify) and then after that comes through, we can be considered for medicaid. IF we get approved for this, we may get some help with nursing care. THis could take weeks, and that is why we must apply for temp. assistance with the state (while we also beg the medical director at our ins. comp. to help temporarily) We must go through an application process for this temp. service also, and wait and see if we get approved for that...Sound like FUN???? Anyway, we are VERY excited about the yard sale this weekend!! Please, if you want to get rid of ANYTHING, let us know right away!! Rob and Michael, or Shannon will pick up any big items you may have, just let us know!!!!!!!! We are only doing it for one day, and we are going to try our hardest to get rid of everything!! If ANY one wants to help, we will take it, just show up or call me. Email me and I will give you my numbers and moms address!!! We will be selling sodas and baked goods, so if you want to stop by and browse....please do!!! We love all you guys and we know your hearts are all with us in this fight, and it means more to us than you will EVER know. If it weren't for family and friends we could not fight like we do. Just watch JOHN Q and you will understand why I was hysterical when their friends started making it happen. All of a sudden you realize that the good, not greedy, wonderful, loving family and friends, that you have never given a DIME to for insurance or taxes or healthcare, are THE ONES THAT MAKE IT HAPPEN. NOT the SICK, EVIL, GREEDY, SELFISH BASTARDS that are making BILLIONS off of the dollars that we ALL give to them each month to "insure" that we are covered, just in case we ever need it. Well, I know that some of this is disturbing and uncomfortable. But this is the truth. And WE need to change it. It is absurd that WE PAY THEM, and they do not do what they are paid to do. INSURE US FOR GODS' SAKE!!!!!!! Well, enough for one night! Have a great weekend everyone, and keep your fingers crossed that our yard sale will be successful!:-)
Hello dear ones. Well, I heard that the medical director was looking over Paytons' case today. I also heard that the longer he takes to review it, the better. He had ALL of Paytons' information sent to him from our nursing company, and ALL of Paytons' most recent nursing notes sent to him. I hope that all the times nurses have seen Payton desat were charted. I don't know if they have, but I know that it is important for the ins. company to know just how fragile Payton is, and how quickly things can go wrong. Well, keep your fingers crossed...Payton is not in a good mood this evening and I am sure I will be up most of the night (no nurse), but fortunately we have a nurse tomorrow. So I will sleep tomorrow. Which is good because we are getting up at 5:00 AM!! on Sat. That may be ok with Rob, but I don't usually get to bed until about 2am or 3am, so it will be tough for me. I am excited though, so it won't be so bad! Remember, this is the last day to get stuff in for the garage sale!! If you need me to get something, let me know right away! I have an appt. with SSI tomorrow, so that should move this medicaid thing along, and maybe we will hear something from the temporary assistance people??!! Hopefully anyway........Have you seen JOHN Q yet???? :-) Remember, this is a MUST SEE MOVIE!! :-) Well, I must go because the love of my life needs me. Take care everyone. Oh, and thankyou sooooooooooo much to EVERYONE that has donated to the garage sale!!! We have accumulated alot of STUFF!! And Anissa, I am sorry I couldn't be here when you came by (had to work) but I hope you enjoyed seeing Payton!! He is quite handsome, huh?? Have a great weekend!! Deb
Hi Deb, Rob, and Payton, Tammy and I plan on coming to the yard sale, and also planning on seeing John Q. I know how you feel with the ins. co. My Mom had to have a kidney trasplant back in 1969 , but the point is she had no insurance, because they would not insure her. but after all was said and done, she had dialysis treatments for a year and finally the transplant , but did not work, the tissues did not match, so she died in 1970, then they took all my Fathers assets to pay the hospital bill. But then I read in the paper that The mexicans come over the border to Texas and get dialysis for free, does that make any sense. All I can say is keep fighting , even though you should not have to . I will pray for you and Payton, see you Sat...
Hellloooo.....Well, tomorrow is the big day! We are very excited! We are praying for sunny, clear skies, but the weather is a little iffy, so we will keep our fingers crossed and hope for the best! IF it does POUR, we will reschedule, but we are REALLY hoping that does not happen!! THANK YOU SO MUCH to all of you that donated stuff to the yard sale!! Wish us luck! Payton is doing well and we are happy to have Sandra (Paytons' nurse) coming tonight! We will need her!! Payton fell asleep after crying for about 2 1/2 hours last night. He was either mad that I made him cough, or just cranky and not wanting to fall asleep even though he was exhausted. I think it was a little of both!! But then he slept like a champ and I just got up every couple of hours to feed him. Take care and have a great weekend! Deb
Hello out there!! I am in a super rush and have to go to work, but wanted to let everyone know that the yard sale was cancelled and rescheduled for next (this coming) Saturday. We were rained out, but we figure this just gives us more time to collect stuff and get the ad in the paper this time!! So don't forget, this Saturday!! (March 2) Payton is doing great and I'll write more later Deb
Hi! Well, I am trying to get ready for work, and take care of Payton but I wanted to write and let you all know that all is good, Payton is great, we are getting SO much last minute yard sale stuff, that I am glad that it was postponed!! I would like to take this opportunity to thank everyone that has donated their goodies, and their time!! I know alot of you plan on coming and helping out and we appreciate it SOOOOO much!!!!! It is a lot easier when you have so much help!! We will have baked goods (thanks to Jen B!) and sodas, etc... so if you just want to come by, please do!!!!! We will be focusing on the benefit after the garage sale, and I am just now getting all the donation letters and bios printed so they will be ready when the yard sale is over! Take care and stay healthy everyone! Deb
P.S. Have you seen JOHN Q yet?????????
Hello Hello Hello. Well, we were approved by Paytons' insurance company for 40 hours a week of nursing, for one month. I guess they felt that we would be happy with that since they were going to drop us to 28 hours a week starting Thursday. Well, I am happy to have 40 over 28, but am very disappointed that we were dropped to begin with, and then not even notified or given ANY advance warning. We were called and it was effective IMMEDIATELY. I can't even believe that is legal when we are talking about someones health and nursing care. What if Payton didn't have us??? What if I worked days?? Or 10 hour shifts??? I would just lose my job I guess, and they don't care one way or the other, they just don't want to pay.....So, as you can probably tell, I am happy but not sending them a thankyou card. We got the SSI info in the mail today and I am mailing it back out tomorrow or the next day (need copies of several things) I am really keeping my fingers crossed that we get approved for medicaid....Let's just hope they do the right thing, and approve us. Shannon, it was great to visit with you and your family today, I want you guys to come and see Payton soon!! Bob, it was good to talk to you, and we are THRILLED that school ends early enough for you to come to the benefit!! We are VERY excited for you to be there!!!!!!!!!! Give Briannah and SHane a kiss for us! For those of you that don't know, the benefit is JUNE 8TH. So MARK YOUR CALENDARS!! We will be selling advertisements and personal messages in the auction booklet, so if anyone wants to let me know early, just e-mail me the info. We will be doing the printing through Yovino Printing again, they did a FABULOUS job last year!! I will be sending out the donation letters this week, and hopefully we will start getting the invitations ready next week. If you have any questions or concerns, or ideas, please feel free to email me about anything!! Payton is doing great and has been a "bugs life" junkie for days. He won't watch anything else!? Well, tomorrow he has speech, which we missed last week because Eileen was sick, so we are looking forward to that! He is still moving his wrists! and his legs! Take care everyone and have a good night!!!!!!!
Payton you are such a strong little man. Keep moving those wrists and knees. I think that all the love and support that you get from everyone helps. I know it always helped me. :) Keep being a trooper and i will come visit you soon. Deb i will see you saturday! Love always, jen xoxoxoxo
Hello Payton and Debbie..we were just checking in on you guys and seeing how things are. Hectic as usual huh? Just wanted you to know we are as always thinking about you all and am glad to hear things are going fine (of course except for the nursing thing). We send hugs to you all!!! Lily sends XXXXXXOOOOOOOO's to Payton too!!!
Hi everybody! Our house is FILLED with yard sale stuff! FILLED!! We are excited about this weekend! I have a very busy weekend coming with lots of work, and PT visits, and speech visits, the yard sale, and lots, lots more!! So, wish us luck and some sanity in between!! (and maybe some sleep!:-) ) Renay, everytime we try to talk, we miss each other!! I will try to call you at work tomorrow! Marni, have fun in Orlando, you know that is our favorite place!! and Paytons' too!!!Payton is sleeping--no nurse, so I must go, but he is doing great! Take care Love Deb
Hi Gang.....Go Payton,Go Payton,Keep'em movin!!! Need to get my butt by & see my little buddy soon. Excited about our yard sale...we've got so much stuff for sale I can't wait!!!Knowing me I'll come home w/more stuff than I put in the sale!! You all know how these things work so if you want the good stuff be sure to come by early...lots of baby items available:car seats,high chairs,toys...looking forward to the benefit..want to get those donation letters out ASAP. If you have any ideas for items let us know. Have a great day & I'll see ya'll soon. Weather looks good for Saturday yipee!!!!! Love you guys, xoxox Shan
Sorry to hear the sale was rained out. What is the address again? Also you speak so lovingly about your nurses...they must be wonderful. Please tell us the name of this fabulous nursing agency...please.
Hi guys, Just stopped by to read the journal. We are so proud of Payton for moving so much! How exciting is that? We can't wait to come by and see him, we know the yardsale will be a huge hit!! Glad to see you guys doing well...sorry about the nurses...i guess if it doesn't effect them, they don't care, right! Anyways...we are so proud of you little guy. See you soon!! XOXOXO Jamie, Ryan, Trinity and Zoe!
HEYLO EVERYONE!!!! What an exciting day!! I just got home from work, and must get Payton to bed, but I wanted to let everyone know about our wonderful day today!! The YARD SALE was phenomenal!!!! We had no idea what we were in store for, well, I didn't anyway! But it was quite an experience, and really entertaining, and fun! We all had a great time, and we all worked together to make it a huge success!! We had no idea how much we could raise just from a yard sale!! This money will be saved and spent on all of our costs to start up Paytons' Pals. If we need more to start it, we will have another yard sale, or car wash, or something like that. If we have more than enough, we will use whats' left over to start our account. We have a fabulous accountant, Uncle Kenny (he is the BEST in case you are looking for someone to do your taxes!) and he has worked with non-profit org.s before, so he will be helping us start ours. THis, we hope, will be a major undertaking for us, our family and our friends, and we are hoping to make a HUGE difference for kids that have sma and their families. We have been sooooooooooooooo lucky to have ALL OF YOU, to help when we needed the help, and we want to do the same for those that do not have the help and friends, etc...... that we have! So, wish us luck!! We will be doing our June 8TH fundraiser with FSMA, but plan to do lots of fundraising with Paytons Pals once we are up and running!! A huge thankyou goes out to all of you that helped us today!!!! SHANNON, DEVEN, KENDAL,JEN B., RYAN, MARY, ERIKA, JOE, TONY,GRANDMA, MY HONEY, and to all of you that stopped to by to root us on and watch TOny flag people down on ROyal Palm Blvd. (He has some great dancing moves!) Thanks Sandra, Dwayne and Dwayne, Jr! Peter, Kim, Alina, Luke and Eric, Rich, Dave, Travis and to anyone else that was there supporting our efforts!! It was really a great event and fun, so next time you should try to stop by and join us! Our next project is our benefit in June. THis event is to support the efforts of Families of SMA. THis org. donates 80 cents on the dollar to RESEARCH, and this is a GOOD thing!! We need to find a cure for this disease!! For REAL, we can do it! It is just money, and we will raise it, somehow, some way! If everybodys' yard sale discards can raise $762.00 in one morning, just imagine the possibilities!!! One of the co-producers of the show "Roswell" has a child with sma that is one month younger than Payton, but has type 2. He had an auction on ebay, that ended yesterday, where you would win a day on the set, and lunch with the writers of the show. The bidding ended at over 4,000 and all the money went to FSMA!! Awesome, huh? His mother and I have talked, she is a great lady, and lives here in SOUth Fla. Anyway, I really must go, I will write more later, but just wanted to say THANKYOU so much to everyone that is in this fight with us! I promise that I WILL NEVER LET YOU DOWN, AND I WILL NEVER STOP FIGHTING TO FIND A CURE!!!!!!!!!!!!!!!!!!!!!!!!!!! Love, Debbie and little Payton P.S. Thankyou everybody, hopefully one day, you will all see me walk, and talk good and do cool stuff that my parents can do! But, I promise I won't talk as much as my mommy! love, payton :-)
Hi Freemen's, I just wanted to drop a note to say hello and that I have been thinking about all of you. How is everything going? I really miss coming by to see Payton and work with him. I thank you for affording me the chance to work with your son. I'm writing tonight because I finally broke down and got a computer. I will try to be better at keeping in touch. Please let me know how things are going. Best Wishes, Denise Zeroff (speech therapist)
Hi out there!! We have finally got our donation letters for the FSMA benefit copied!! We have a donation letter with a bio of Payton and the "quick facts about sma!" If anyone would like some of these letters to pass out or to maybe have something donated to the benefit, please let me know!! I will get them to you ASAP....I am sure alot of you are wondering about "paytons pals?" and what it means......We will be setting up our own non-profit organization as soon as possible, called Paytons Pals. This will be similar to the ones you have heard of, Families of SMA, Andrews Buddies, Miracle for Madison, etc....we will donate 75 cents on the dollar to research, 22 cents on helping families, and 3 cents to keep us up and running. We wanted the majority of the funds raised to go to research, because obviously, our #1 goal is to FIND A CURE!!!!! But, we also wanted to make our #2 goal just as much a PRIORITY!! and that is to help the families of these children!! We have been so fortunate--when Payton needs something--our friends and family get it for him. When insurance won't pay--they find a way...But there are hundreds of families that are not as fortunate! Mothers that must stay at home 24 hours a day, and don't have the "luxury" of going to work anymore (believe me, it has definitely become a HUGE luxury- I am not kidding) or maybe don't have a workplace that can be as flexible or that cares as much as Outback! Or maybe they don't have the AWESOME friends that we have, and in many cases, don't have any friends at all. THis disease is hard to deal with, even for the families, so alot of times friends just lose touch, because they don't want to hear the bad news or deal with all the heartache, etc...Lots of families don't live close to their relatives, and therefore haven't been out of the house (no babysitter) in years!!! Thanks to my mom-Rob and I can get out once in a while, and we all know how important that is! Some parents are not together, or not together anymore. THis kind of thing can tear families apart....My point is, is that there a ton of little angels out there, that may need the hi-low like Payton did, to get a little freedom or FUN in their precious lives, and DON'T HAVE ONE!!! How tragic is THAT????????? Well, we plan to make that change! We want to focus mainly on things like the chair, and equipment, nutritional items, INFORMATION PACKETS!!, and plenty of other goodies! If you have met Payton, you will agree that these kids deserve ANYTHING that will make for a better quality of life!! SO, that is what we are doing. We will still be donating to FSMA, as we believe that they will be resposible for finding a cure, and any dollars sent to them, are good dollars, going to a good cause! We hope to be up and running by the end of the summer, and I will keep you updated as I get info on what is happening. We are REALLY looking forward to this project and hoping to have ALL of your support! If you have any ideas, or suggestions, please email me or write here on the journal--I am VERY excited about all of the possibilities and ALL of the ANGELS we will help! We will need volunteers to help with our org. So, if anyone is interested, even if you help "part-time" please let me know!! Love to you all--Payton is good and enjoying "bugs life" (SURPRISED??) Talk soon Debbie P.S. Still waiting to hear about medicaid and whether or not we are approved!
Hi Payton,Debbie and Rob. I opened an old e-mail today that I had somehow overlooked. It was from Helen and forwarded Paytons home page address. I opened it and found this wonderful site. I read all "mommy's" e-mails from January thru 5 March. I could sense in one day all Debbies highs,like theDisney trip and the lows like the insurance problem; but most of all is the love and dedication that is so evident. You guys are so great I shall continue to monitor this site. LOVE TO YOUALL,
hi,PAYTON my name is MARLENE and I do have another angel just like you named EVAN 17 MONTHS OLD,YOU GUYS ARE AMAZING PRECIOS GIFT FROM GOD NO MATTER IF YOU CAN WALK OR SIT I THINK YOU ARE GORGEOS AND GUESS WHAT IAM PREETY SURE THAT SOON WILL BE A CURE FOR THAT TERRIBLE DESEAS I WILL KEEP YOU IN MY PRAIYERS GOD BLESS YOU AND FAMILLY
Your website is great!!! Thank you for sharing.
Hi everyone! Our nurse had an emergency tonight, so I only have a minute, but I wanted to say hi, and let everyone know Payton is doing well. He actually looked a little under the weather for a couple days, but he is pink and looking good today! Yeah! I still have not heard anything about medicaid, but I will let you know. We are working feverishly on these donation letters. I made up a bio of Payton with his pic, and I have sma "quick facts" and the donation letter itself. They will all go together. Well, I really must go! Hi grandpa and Lauren and Marlene and Al and everyone else out there! We hope everyone is safe, happy and healthy! Take care--Deb
I just had to add one thing....Did anyone hear about how the airlines got smart and pooled all their money for insurance costs--and are now paying HALF of what they were paying to these criminal "insurance" companies, that were NOT PAYING when they needed to. Isn't that just the greatest thing ever???????? Maybe we should all get SMART and get on the bandwagon!! Maybe then you could actually get help when you get sick, and not just roll the dice and hope that whatever ailment you end up with, is clearly covered in your insurance policy?! Then maybe you won't pay outrageous rates (but even if you were, at least you'd have COVERAGE if you got sick). And maybe, we could FINALLY put these disgusting people OUT OF BUSINESS!! :-)
Yahoo they're finally almost done now let's get those benefit donation letters circulated!!!! Put on your thinking caps folks....who can we ask for donations?? Restaurants,hair dressers, nail techs, tattoo artists, pet shops, groomers, vets, damn how cool would it be to get some sort of plastic surgery donated from Florida's Center for Cosmetic Surgery??? Cell phone service, a years worth of oil changes, car wash/detailing, etc. Think of anyone and every one that provides a service to the public. What do you pay for every time you go out?? What are you saving for or thinking about getting or doing??? Together we can make this benefit a huge success for SMA and maybe this will be our year to find a cure. SMA and families living with an SMA child need us.....so open your hearts and put on your thinking caps!!! This is Payton we're talking about...I want this little boy to hug his Mommy & Daddy without any assistance, to run, to play, to know what a cheese burger from McDonalds tastes like!! WE TOGETHER CAN MAKE THIS HAPPEN. We have 3 months to do it so let's go out there and get those donations....every little bit we put into this counts so if you don't have 5 free hours a week but you do have 1/2 an hour please use that time to get donations..1/2 hours really add up quick!! Thanx to everyone for pitching in now and in the months to come. I love you Freemans!!! Luv, Shan xox
Heylo out there! I must share with all of you that I am SOOOOO excited about our fundraiser and future fundraisers! I can't wait to help as many of these kids as humanly possible! There are so many of us that I know we will make such a HUGE difference! Payton is doing great-running sats of about 99 OFF the bipap! He is loving speech therapy and really doing well with PT. Susan says she has noticed alot of "tone" in his hands and wrists and he is moving them more now than he ever has! How exciting! And not only is he moving his knees, but he has started to hold his legs up (in a bent knee position) on his own, which he has also NEVER done! SO, we are really looking forward to finding this cure--and I think Payton is too! Take care-Deb
Hello out there! Just got home from work, and I am sooooo looking forward to "Payton/mommy time, so I must be quick--just wanted to let everyone know that Payton is doing great and all is well!! We are planning a lunch to go over fundraiser plans next week, so I will see you then, girls! Take care!
Happy Sunday everyone!! Lots of promising leads for auction items for the benefit. If anyone has an "IN" with any of the local news stations or newspapers let us know. We'd like to get some sort of coverage for the benefit....and maybe a story or 20 to let the public know what we're doing...who knows they might just be knocking our door down to donate stuff for the benefit!!! So glad to hear about Paytons movement...keep up the good work lil' buddy!!! Deb ~ give me a holler soon.Luv ya,Shan xo
Hi, Payton! Just a note to let you know that Brian, Brittany, and I are all looking forward to seeing you next week! We can hardly wait to drive down there and tickle your toes, you cuddle-bunny, you. Tell your mom and dad for me, alright? LOVE! --Auntie Amy
Heylo everyone! I have been working SO much lately-that I really haven't had time to write my usual novel here. Sorry. I am sure you are all VERY dissappointed! Working so much is good for money--but rough on mommy! Especially because it seems that every night I work, NO NURSE!! It is actually that one of my nurses' son got sick, one started another job, etc..etc...It seems that with this whole insurance/medicaid thing, my nursing situation suffers, and won't be right til we get the other situated. It sux because this is when I need the most help--it's like getting 84 hours worth of nursing in 40, and then not getting the 40. It makes for alot more work and a lot less sleep--not just for me, but for Rob, and even grandma!! OK, enough complaining, I hate complaining, and I hate complainers, so ignore me. It will get figured out, it is just a pain in the butt!! Payton is doing well, and we are about to get him to bed, so I must go. I have some really exciting news, but I will save it for tomorrow! Good night everyone and take care! (Don't you hate when people do that????!!!:-))
Hey guys, Just a quick hello and catching up on the journal and your news. Glad to hear that all is going well. I'm really excited about all the stuff that Payton is doing! I would love to have some of those letters for the benefit. I can think of at least a few people that I can hit up for donations. Every little bit counts, right? Plus, I would love to hear what kind of help you need for your organization (Payton's Pals). If it's possible, I'll do my best to help out at least part-time. Ta-ta for now....Talk to you soon. Anissa
You are all in our hearts and our prayers always. Love, Daun
Yes, I hate when people do that. It sux. ;-)
Hello out there!! Well, I guess I better share my exciting news! I usually can't hold it in for long, and the plans are still being made, but Dr. John Bach (guru of sma protocol, and our personal hero) has agreed to come to our benefit this year and speak on behalf of sma children everywhere!! Those of you with sma in your family, know him, and what he has done for our children. For those of you that don't,he is just about the only doc known to man that actually thinks that we (sma parents) should not just go home, call hospice, and watch and wait as our children slowly die. NO DOUBT, these kids are more compromised than most--anyone that has met Payton will admit to that. But just because they can't move, doesn't mean they are not people. Or that we should just throw in the towel. They may not move much, but they are NOT mentally impaired in the least (most sma children have an above average IQ), and they deserve a chance! ESPECIALLY WHEN WE ARE SOOOOOO CLOSE TO A CURE. For me, personally, and for Rob, just letting Payton "go," was never an option. We were privy to information from other parents on Dr. Bach's "protocol," and we gradually started doing these things for Payton as he needed them. Dr. Bach has helped saved so many children, and follows many that live all over the country. He is a WONDERFUL doctor, that truly CARES about his patients and not just his paycheck....We are so completely thrilled and honored that he will be at Paytons' benefit, and we hope you ALL enjoy meeting him. If it wasn't for him, we would not have our precious son with us anymore. How BIG is that???? And a bonus, is that so many Florida kids will be able to see him/be seen by him that would not have been able to otherwise. We would never have been able to go all the way to New Jersey with Payton to have a dr. appt. with Dr. Bach. So we are VERY excited!! And, as a footnote, for those that may be reading and have lost a child to sma, I want you to know that I do not have any judgement against anyone that has ever decided not to go with Dr. Bach's protocol. I really don't. I would say if I did, because I am entitled to my opinion, but I am not ignorant, and I (Rob feels the same) understand that each child with sma, even within the varying types, varies. And some kids are weaker than others. Some parents don't even get the info that we were so lucky to get. But most important, it is not my decision to make and not my business. We do what we feel is the BEST POSSIBLE QUALITY OF LIFE for Payton, and I would not want anyone to judge us for that, LEAST OF WHICH, another sma family! We live the same sma heartache!We need to stick together, and FIND A CURE for this disease! NO DIVISIONS!! Take care everyone! No nurse tonight, must go and get everyone to bed! Debbie
Debbie!!! How exciting for you all....I am just in love with Dr. Bach because of the life we can give Lily and it is true that he is the ONLY doctor that gives our babies a chance at all. I have had the amazing opportunity to meet him and have him look at Lily and when we went to New Jersey to get Lily's g-tube we got to see him again and talk to him alot. He is one of the most wonderful men alive and I thank him so much for what he has done for all our kids. I will get to see him again in May because we are going for his conference in NJ as well. I am so excited not only for you and Payton to get to meet him in person but for all the kids in your "neck of the woods" to get to see this wonderful man!! I am so excited for you...I feel as if my balloon is bursting tonight with so much good news!!!! Hugs to you, Rob, and Payton!!!!!!! Gotta talk to you soon!
Hi Deb, Rob & Payton, Just caught up on all that is new! I have been busy with the wedding, school and being a bit under the weather! How exciting for Dr. Bach to be at the benefit! I look forward to hearing him speak! I need to get some of those letters; I have a list of places/people to ask for donations for the live/silent auctions. Looking forward to having our lunch so we can all talk about the great ideas for the benefit and Payton's Pals. I know it will be a huge success. Deb, I will call you soon so we can catch up, my voice was disappearing last night at work so that is why I'm writing. I am so excited about all the wonderful things happening for you, Payton, Rob, your family and other SMA families. We will find a cure! Everyone take care, love you all! Give Payton smooches for me! XOXO, Jennifer
Hello world! Hi Jenn and Amy!! Yes, I am excited too!! I was sooo surprised that Dr. Bach would be able to make it, but am sooooooooooooooo THRILLED!! I must put Payton to bed, we have a nurse tonight!!!!!!!!!!! YEAH!!! Hugs to everyone!!! Love Deb
Hello out there!! No nurse tonight, so I only have a minute, but I wanted to say THANK YOU to ALL of you!! So many have already talked to me about coming to the benefit, getting items donated, and so many awesome ideas it is amazing!! We are really looking forward to this event, and hope that everyone will come and support our cause and join the fight for A CURE!! Payton will be at the event, barring any illness, and so will some of our sma friends in Fl. I know that Ryan will be there, but I am not sure who else. There are many that live down here that may also want to see Dr. Bach, and may be at the event! So, we are getting geared up and very excited! Payton is doing well, he had his pulmonologist appt. on Tuesday and also his GI appt., both in WPB, where we spend most of the day on those visits. He did wonderful, he is SUCH a trooper! He is definitely realizing that it is where he gets his RSV shot, but he still handles it very well. He doesn't care much for his GI, but he doesn't like anyone messing with his g-tube! I don't think I would like it either! He is doing SO WELL with speech. He absolutely loves Eileen, and yells when she leaves! He loves talking or trying to talk, and we are really trying to work with him to do yes/no....Wish us luck! I know that there are alot of you that come and read this journal, and keep up with Payton, and I just want to thank you for caring and letting Payton be such a part of your lives! I look forward to all the things that Payton will do when we find this cure, and sharing them with all of you, Paytons' extended family. And believe me, you are. Love Deb
Just letting you know that I feel like 'extended family'. I love to hear about everything that is going on. I feel like I am involved because of the way that you relay what's going on. Thank goodness for this website. It is a great way to communicate and get info about you all. Take care...Love you Payton! Keep up the good work.
Thankyou Anissa! I love this site, because not only do you get to see how Payton is doing and what is up with sma, the cure and the benefit, etc....but I also get everything out without having to repeat myself a million times. I'm a big talker, as I am sure most of you know, and it got tiring trying to tell everyone ALL the things I had to say, and this has really made it easier, I guess, to spread the word, ya know?? Anyway, just got home from work! I am VERY tired today. Grandma let mommy and daddy go out for a little mommy and daddy time last night, so when I got off work last night we raced down to Fort Lauderdale to see Gary and Marlee, Peter and Kim and Amy and Kirk. It was Kirk's 35th birthday!! Rob will soon have the same event in his life!! Hee Hee! We had a great time, but are both very tired today, as we are getting to be old folks! It was nice to get out for a short while though. We try to do it every few months......I got to train Jenn H. on the bar tonight!! SHe did great and will be a great bartender! We were not very busy tonight, because of the holiday, I'm sure. We have a nurse tonight! YEAH!! Thank goodness......No news on medicaid. THey had requested some paperwork last week, and we are still waiting.....Payton is doing great and all of his latest movements have us really excited about the possibility of more!! Keep your fingers crossed! I heard through the grapevine that there may be some trials soon with cord blood, so we are really hoping this is true and hoping Payton can get involved.........Well, I don't think anything else is going on.....so, have a great week everyone and take care!!
Hello out there! It has been a busy time over here. Lots of Pt, speech, developmental meetings, letters to write, doc appt.s and of course I've been working alot so we are pretty tired. We have also been working on the benefit too.....Payton is doing well, we don't have a nurse again, so I am pretty exhausted. Last night was rough, Payton had a hard time falling asleep and cried for a LONG time. That is no fun for anyone. I had worked last night too.......We had dinner with aunt AMy, Brian, and Britney Spears! Thanks for coming over guys--we love having you and so does Payton!!! Tomorrow is a big day with Pt speech and work so I must try to get things going, but will write again soon! Love Deb
Hi Payton, Debbie and Robert: I was catching up on payton's journal, and wanted to tell you that I have been thinking of all of you and wanted to say hello and to send my love, I will talk to you soon.. Love Heather, Russell, Dallas, Chace and Uncle David
HEY GUYS!!!! WHAT'S GOING ON?? SO I NEEDED BREAK FROM MY STUDYING AND THOUGHT IT WOULD BE PERFCT TO DO SOME CATCHING UP ON THE SITE. I'M SOO HAPPY TO SEE THAT THINGS ARE GOING WELL WITH PAYTON AND THE EVENT. I SO WISH I COULD BE THERE TO HELP OUT BUT I'M SOOO FAR AWAY. I'LL BE HOME END OF APRIL SO I HOPE I CAN HELP WITH SOME LAST MINUTE DETAILS FOR THE EVENT. HOPE WORK IS GOING WELL DEBBIE, AND YOU TOO ROB. GIVE PAYTON A HUGE HUG AND SMOOCH FOR ME. ALSO DEB, TELL YOUR MOM I SAID HI TOO XOXOXOX
Just a quick hello to say hi to everyone!! We MISS YOU JACKIE!! Hope school is treating you well and work and fun too!! Come home soon! Hi Cousin Heather , Russell, Dallas, Chace, and Uncle David!! We miss you all too!!! Are you coming down for the benefit??? I hope so!! Well, Payton is doing well, we are hopefully going to start having a teacher here once a week and some occupational therapy too!! I am hoping for the best! Payton could definitely use the extra help! We are STILL waiting on notice from medicaid, etc...so we are STILL without adequate nursing coverage. I am sooooo upset with United, I could go on for days, but they dropped a bomb on us, with no notice, left us with no nursing coverage, and our nurses have to make a living, so most of them have gone on to other jobs, and Payton suffers. Is this what we pay $600 a month in insurance for Payton for??????????????????????? Someone please tell me how insurance companies get away with things like this???? I am still trying to figure it out. ANyway, I will write soon!love deb
I am writing to let all of the people that read this journal know there will be a car wash for payton on April 20th. It will be at the mobil station on Coral Springs drive and Atlantic blvd. I hope to see whoever lives around here there. We all need to came together and find a cure for our brave litlle man. We all love you payton and i hope to see you soon! love always, jen xoxoxo
Hi everyone! Well, I must say, I am so thrilled~Solange started back tonight, and while our medicaid thing is not figured out quite yet and we still do not have enough nursing hours, it is soooooooooooooooooooooo nice to have a sweet, familiar and good nurse taking care of Payton while we sleep....What a total treat! Anyway, Payton is doing great--he was laughing so hard with his dad tonight, that I actually went and watched the whole thing, because I had never heard him laugh so loud. This is loud for Payton mind you--but loud nonetheless. We were very proud parents. It is so wonderful to see him thrive in any way he can. SO WONDERFUL. It makes everything else seem completely stress free.....Jen Berman, thankyou sweet miss for organizing your car wash for sma!! How exciting!! I am looking forward to seeing all the girls there from Outback! I heard that we will also have Cheryl's sorority girls volunteering their time, so that should be alot of fun! If you happen to be around, and you have a car, please stop by and see us! APRIL 20TH!!!!!!!!!!!!Between 8am and 1pm. I have been in contact with Maria, and we are working on invitations for the benefit, and lots of other details. For those of you that don't know her, she is an angel.... She almost single-handedly operated and organized our event last year, and did a fabulous job!! It is really amazing how much work goes into these affairs, and we appreciate all of the time and energy everybody puts into this fight! We are all so determined to find a cure, I know that we will....So, Maria and I will be working on these things for the next few weeks. If you have any questions about advertisements, seating, food, cost, anything at all, email me and I will get back to you as soon as possible! I appreciate all feedback and any ideas you might have! pjf714@netscape.net ............We know that you all truly believe that we will find a cure and find one in time for Payton......It is what sustains us......Good night.
hey everyone...just getting ready to grab a qucik bite at friday's before i go out after some tests. i was thinking about payton today, because i was scrapbooking and put some pics of him in my book=)sorry i didn't get to call you back yesterday deb, i had to work at 4 and didn't get out till late. i'll try to call you this weekend? do you still admin in the morning? ok i'm thinking of you like always and miss you tremendously!!! send payton my love and kisses. xoxox jax
Hey Debbie! You bet Payton will be here and ready for that cure and Lily and Payton will have to meet and get to play and GET DIRTY and ruin some clothes....how exciting will that be? I am so excited to think that a cure is just RIGHT AROUND THE CORNER!!! Everytime I think about it I just get so excited and cannot wait to see my little girl (and of course all the other angels such as Payton) running around, being able to crawl up in my lap and throw her little chubby arms around my neck and tell me how much she loves me. I will do EVERYTHING in my power and pray hard that make sure that our kids get their miracle. I cannot imadgine (but am looking forward to it) being able to take my little girl