We have weaned ourselves away from Hartford, but realize if something were to happen before he was 18, (he is 15) then he would end up there. We see a cardiologist from there in Southbury, and the head of pediatric pumonology at Danbury Hosp. I would rather have relationships with local doctors who know him, so if something happened they have his records, have a relationship with him/us and his friends/family are close by. That is what we feel comfortable with. He has had a rough couple of years in and out of the hosp. and being stuck at home. I am off all this week with him, and off on Thursday, Friday, and always home in the morning.
Sean was dianosed with cardiomyopathy in December, ejection fraction down to 34%, left ventricle increased by 2.5 centimeters. He had a pilonidal abcess incised, drained and packed a few weeks ago, ended up with a penile yeast infection from antibiotics, and his blood sugars are running over 200. That about sums it up I guess. And Wyatt?
Hi Joanne, no we don't see Dr. Wong, was just curious as to how she was different from the other doctors. Sean is not doing well. I sent you several emails about the wheelchair and mentioned the event you had at your home but never heard from you. Hope all is well. Mia
Hi Joanne, we'd love to read even a sample of it. Doug & I wrote our short play for a 10minute play festival so it is only that long with few characters as per the genre demands... and with Doug being a 4th yr uni student, it is a bit on the dark side with some of the dialogue. We missed out on a place in the festival but the judge who wrote us, thinks it might do better in another festival later this year, which is something because there were over 1000 entries. We based it on Saramago's book, "Blindness" which I believe has been made into a movie with Jodie Foster lately, about an epidemic of blindness and society's reaction to quarantine the victims and what happens. I suppose it sprung out of our frustration that our govt refuse to fund a national duchenne database so we can participate in the global registry and identify our boys faster for future multicentre clinical trials. Doug has written another play about a disabled youth, but that one is really bizaare - it is no wonder you should see some of the playwrights he has to perform, like Sarah Kane I recall. Anyhow, we would love a taste? My email@example.com addy is still working, but not for long because our charity has changed names to Duchenne Foundation and www.duchennefoundation.org.au is due to be released Jan 29.
Woops! Forgot to answer 1/2! We are seeing Dr. Kang @ Children's right now and are going to try to see Dr. Tseng too. Dr. Kang has been so nice and accomidating. We really like him. And he's doing research as well.
When you say that you noticed Wyatt developing differently, was he not walking and saying as many words? Keelan started with early intervention long before the DMD arose due to missing milestones. He's almost 16 mos. and not walking. He crawled at 11.5 mos. He seems weaker than his peers. Dr. Kang said that most kids develope normally, so I'm confused. I've read and hear other wise from other Moms!
hi! I don't remember if I got back to you last week! Things have been crazy! We found out early about Keelan's DMD when we had a follow up w/ his gastroentonologist for reflux and he noticed his growth had almost stopped. He tested for Celiac disease (wheat intolerance) and other blood tests. He found liver enzymes in the 300s and then tested his CK, which was 14K.
The cough assist is used when there is an inadequate cough, usually a few years after the boys are using chairs full time. Getting a lot of colds does not mean you need a CoughAssist device. We use PFT's (pulmonary function tests) to predict the need for a CoughAssist. I would touch base with your docs at the MGH about these issues. I presume you've had PFT's done. Craig can go over them with you if you have questions. I think you are lucky to have the MGH group in your corner. They are a great group!
Joanne- Patrick saw the orthopedic doctor this morning, they want to do Botox injections into both of his calf muscles and then a physical therapy protocol. Have you ever heard of this or know anyone who had this done?
Joanne-Hi, thanks for everything. We are having a tough time right now with behaviors. I spoke to Ryan and got some contact info. for CHOP. I am off from work on 9/2 and plan on making some phone calls to get on tract hopefully. Maybe next time we come to CT we can get the kids together. Jess
Why don't we talk on Tuesday? Let me know what time would work best for you, the morning works for me or at least anytime before 2:00pm pacific standard time. I'll bet you are excited for this remodel and Wyatt too! Once he gets a "cool" room his fears probably will go away.
I am sorry I missed your call! Probably it went to answering machine. We can try again if you wish. I am not sure what they were referring to when you mentioned "numbers" but I suspect that was brought up as a theme or something? We probably can talk about it when you call.
Lighting is one of the most expensive parts of good design and most important especially with frightened kids. Make sure you look into keeping everything ADA accessable in the event you need to park a scooter in his room.
I read your post about changing your son's room. Your son and mine are in the same age group, I love doing kids rooms and have a bachelors in Interior Design but work as a domestic engineer instead. I could provide some suggestions but it would be too long and confusing I'm afraid. Feel free to call if you want - we are in Cal so there is a time difference - 951-780-3864.
I took your advice....you always have good advice....I will try to call you in the evening...Nick and I will be leaving around 2:30 am and hopefully our flight will go well. I will call you the first chance I can.