June 12, 2009
We haven't disappeared we are just extremely busy. So much has been happening. We have been home for about 6 weeks now and Gideon is doing magnificent. He has adjusted so well to our family and keeps us smiling. He continues to be such a happy baby. We have been seeing many doctors. Some with encouraging news and others not so encouraging. I guess I just haven't wanted to post the not so encouraging news but I want you all to know what has been going on. We have seen another orthopedic Doctor at Childrens who took a lot of time with us, took xrays and thoroughly examined Gideon. His prognosis was that he feels any surgery for the hips and knees would be to risky due to the way his joints are formed and due to the webbing of skin behind the knees and at the pelvic area. He says that the nerves and blood vessels are too close to the service and the risk of causing more harm is too high. He says we should look at him being in a wheelchair the rest of his life. I was not very happy with that news and have talked with our pediatrician and we are pursuing a 2nd opinion with Shriners Hosp in Lexington. We wanted to coordinate this prior to any casting being started on Gideon's clubbed feet--This was also decided - to proceed with the serial casting (Ponsetti Method). Anyway we have an appointment with Shriners June 25th and the casting starts june 29th. We also saw the Pediatric Medicine and Rehab Dr at Childrens who will also follow along. They are recommending to see the Physical therapist for treatment as well as wheel chair fitting. We are trying to find out how much will be covered by insurance and pursue some aid. I have been on the phone a great deal trying to figure it all out. It is all very complicated. We live in northern Ky so go to Cin Childrens Hosp but if we do this we can't get help from Ky--we have to go to Ky doctors--all the way to Lexington. Anyway--we have to think about our house and car as far as being accessible for the wheelchair as well. Needless to say we are a little overwhelmed. It will all work out--because He is in control. He worked miracles to bring this precious little one home and I know he won't stop now.
Anyway Gideon is getting stronger at sitting up. He is talking more and more. He is eating more solids though still hasn't gained any weight. He loves to go for walks and play outside. He now loves the swimming pool and likes to take a bath too! I am back to work 3 days a week and he is doing great with that as well. We are settling in to more of a routine and things feel like they are more back to normal. We are a very busy family but we wouldn't have it any other way! We are so very blessed to have been chosen to be the parents of our 7 precious children. I will post pictures tomorrow. Have to go get all the kids ready for bed. Tim gave me an hour to myself and it is over. I am blessed with a great husband too!
Where I Went!!
9 years ago
2 comments:
Jackie,
You said it perfectly, although the news isn't what you are wanting for Gideon, God brought him to you knowing you would be there for whatever he needs. I will continue to pray that you get some uplifting news on anything they can do for him.
If you're looking for a 3rd opinion on your sons hips/ knees/ arms ect. I highly recommend the Arthrogryposis Team at Shriners Hospitals for Children in Philadelphia. One of the lower extremity orthopedic surgeons out there has a special interest in Arthrogryposis & treats hundreds of kids w/ it. The upper extremity orthopedic surgeon there is also stellar with Arthrogrypotic arms!
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