we toured the fort and went to ripleys believe it or not. never new ripleys had an evlevator before :). Christian is doing well. He is in apower chair now. He totally loves it. Gets alot of freedom now that he couldn't have before. he hasn't walked in 2 years now and can't stand anymore either. He doesn't let that stop him from doing the things he wants to do.
Jen of course I will always be your friend and support you and your family. I feel like crying sometimes, it seems so unfair that your little rye rye would have this disorder. I miss him so much. I remember when his little eyes would light up when I entered the room, and how he would back up and move everyone out of the way to sit on me. And of course who would forget smelly munko!!! Oh yea and the time I put my drink on the floor and I turned around and he had snuck under the chair and drank all my drink!!! He is my heart and I cant wait to see all of you. I wonder if he remembers me. Give everyone hugs...I could text all day...
Hey Jen,Aaliyah says you got a tan. She misses you. She is doing well, she is in a contained classroom for 70% of the day and adjusting great. She finally passed her growth tests. Ryan and Sara look great.You all too!! But anyways we miss you all and see that the florida weather and sun has done good for you. Give my baby hugs! I cant believe he is 3 now I remember when he came to my room and was just 18 months old. My baby has grown. Take care wrute soon
thank you!! I had been following the old message board, but never posted. I learned so much. Alec had his 4th birthday in July. It was really tough on me. I haven't checked on this site for a while. It sure has changed.
Hey, Jennifer. Thanks for your comment. My husband and I seem to make pretty cute kids. :) I was so happy with his six month photo shoot since he missed his nap before his 3-month photo session and cried the entire time!
Hi Jen, Thanks for the comment. :) Alachua is just north of Gainesville where UF is. We are about 2 hours away from St. Augustine, if that. I know there are more families in Florida. Hopefully some more will join. The new updated site is great. It's so nice to connect with people who are going through some same things you are. Take care. Shannon
Thanks for the warm welcome! I am glad I found a community where I can relate to others and hopefully find some friends for my brother and for myself as well and maybe even some help for my parents. Your son Ryan is a cutie pie! Thanks again!
Thanks a lot, Jen. We started our project in conjunction with the PPMD conference in July, and we're going to be sending an email invitation to PPMD members in the next week or so. If you don't receive something soon, let me know. Our first step will be to develop a list of interested parents and adolescent boys with DMD, and we'll then determine if we will travel to do interviews and focus groups or arrange something by phone or electronic exchange. I really appreciate you leaving me a note, and if you want any additional information at any point, let me know. If there are several folks in Florida who might be interested, I'd definitely try to take a road trip (especially as the weather cools off here in Philly). This project is funded for two years, so we're also likely to come to the PPMD conference in Atlanta in June, which will be another opportunity for participation.
Thanks for your reply. To learn more about my family and Garin, please visit Garins website. I have been posting blogs on the site since the diagnosis. It has been a roller coaster year as you well know. We go to Charlotte for clinic. LIke I hear from so many parents, I feel like I am directing the medical profession, parents quickly become the "experts" with this disease and quickly realize that those who are supposed to know certainly do not have the answers. It is frustrating. Would love to stay in contact Garins site:http://www.caringbridge.org/visit/garinstepp
Just checking in to see how your appt. went at Duke! Absolutely hold out hope!! We sure did! Although I must say my husband's hopes were higher than mine--I just couldn't be devastated again--so I "stayed" where I was until I got the call from his dr. with his biopsy results and they were beyond what I had "secretly" hoped for. (We thought he would be at best a severe bmd!) And even if your son is dmd, still hold out hope b/c I really feel something out there is going to work and work well--AND I think it is not too far away! I pray for this all the time!!
It wont let me join any groups. I have tried on 2 different computers. How wierd if that? LOL I click the join button at the top of the different groups pages and nothing happens, or even regesters that I am doing anything. Any suggestion?
All is well on our end. The entire family seemed to get a cold over the past weekend and are finally starting to sound normal again. A get together sounds very welcome but finding the time might be a bit hard...but where theres a will,theres a way. I will speak to Karen (my wife) about it and see how we can fit it into our schedules. Im sure we can work it out. It sounds great!
Have you met any more Florida families anywhere near us?
At 12:56pm on September 30, 2008, DanielsDad said…
We have lived in Palm coast now about 5 years. It is really starting to grow with many shops and stores everywhere. How do you enjoy St. Augustine? Its very nice in some parts there.
We have 2 other boys, Noah-8 and Christian-4 .... the 3 of them together are quite a handful...lol They have been tested and Ducheene free.....
We were going to the Nemours hospital in Jacksonville for a few years before getting very fed up with the poor knowledge and care we were getting there. We spoke with Pat F. and she recommended Dr Wong In Ohio, at Cincinatti Childrens....we have been there ever since...the drive is tough but we do it once a year and see everyone at one time over the course of a few days.....they is no comparrison between the care in FL and the care up there....it is well worth the drive......we want the best for him.......not saying Cincinatti's the best, but way better than here. And when it came to dealing with mda here, and looking for a stroller for Daniel, we ran into issues here, and the MDA people up there in Cincy dealt kindly with the folks here and it made an amazing difference in the outcome....
Very nice to come back here and will be joining a few groups after finishing this note to you. Very nice to virtually meet you...lol