Hi! I haven't been on here much latley. Skyler will be 5 in March and my littlest Landen is 16 months old. He is a March baby too. Well I am 33 and know allot of people in Enterprise. I bet we know some of the same folks. I hope your family weathered the Tornados that cut through. My heart broke for those people. All in all Skyler is today ok. He will be starting deflazacort next month. He has been complaining of leg pain. The baby is fine. He does not have dmd. Sadly May 21. 2010 I lost a baby boy in a miscarriage at 5 months being pregnant. But we got prego with my little Landen a month after the loss. Sky loves his brother. They are best buds. It makes me so happy to see him with his little brother, his best friend for life. I hope all is well with your little one's. Thanks for getting back with me. Talk to you soon.
My husband build a wedge for him at home to use (I hear you can buy a nursin stool at some baby stores) and the school built the wedge and 90 degree angle chair for stretching in the classroom. It worked out really well, because we were not going to get the PT to stretch him twice a day, but she was happy to make sure he uses them in the classroom twice a day. It was an amazing compromise. He has a new 90 degree angle chair, built last year, because he has grown. He has used these for 5 years at school, twice a day. I think it would be great to get Gabe started young, so it is always part of his school routine.
Just checking in to see how your little one is doing. I think I talked to you before about being from Alabama and just read one of your post and saw that you have family in Enterprise. I am from enterprise and all of my family live there. Small world huh? My son will be 3 in March and has the point mutation at splice site 50. I hope all is well. Take care!! Roll Tide!!
I wish we could have spent more time chatting while in Cincinnati. Things went well, overall. I was also disappointed that there was no nutrition person. It seems in a place that size they would have a backup plan for vacations and such. Maybe next time. We will be going back in 6 months for a check-up. Ben will start the Deflazacort in 4 weeks. He needs an MMR and a PPD first. What was your overall impression?
Hi Traci- we will be in Cincinnati the same days as you. My name is Laurie, husband Jeff, Ben (almost 6 with DMD) and Mason, 8. I'd love to talk to you while there. We are staying at the Arcadia (I think!), arriving on the 1st.
Traci, I see that you have a 3 1/2 year old. I have 3 little boys as well 6 months, 2 1/2 and my Diego who has DMD and just turned 4 (although he looks smaller). Please stay with us, we have lots of toddler toys that will make your boys stay more enjoyable and independent bedrooms. I can help you on your first visit, we can make it for your kid a visit to "Diego" and Cincinnati (vacations) instead of a visit to a "hospital". Here is my phone number: 513-765-9416 Take Care,
Ben was just diagnosed 10 days ago. We found that while we really like our pediatrician, he was totally in the dark as to diagnosing or treating MD. We had Dr. Wong call him and discuss what needed to be done and what tests to order in advance of his appointment, right down to where the samples were to be drawn, sent for readings etc.