Last Tuesday, we had appointment with a rehab doctor. She decided that Alfred needs a seating support system to help him to cope up with his kyphosis. We shoot several questions to her about kyphosis like..
We : it is necessary for Alfred to get the seating system support for his kyphosis? Are we too early in judging his kyphosis?
Doc : Yes, your son will need this seating support now as it would prevent further complication. It better early prevention than it too late. Alfred is not suitable for a bracing now as his body structure is too small for a bracing to fit in and of course bracing is much better.
We: How the seating support systems help Alfred in kyphosis? We had try to find information about these seating support system at our friends blog or in the internet, but we couldn’t find matching evidence showing that a seating support systems actually help achondroplasia child’s that had kyphosis.
Doc: We had tried on several children with kyphosis but not achondroplasia and find it actually 90% work. The custom shape seat is made according to his body structure. Its pressure the curve point at his spinal and it actually help him to sit straight without curving his body. It will then help to cope up with kyphosis.
We : Will Alfred be giving an x-ray before he gets his seating support system?
Doc: Nope. We will get him x-ray after 3 months with the seating support system.
The appointment for measuring his body structure was fixed on Friday. Here is a few pictures taken during the progress of making the custom shape seat. My poor Alfred cried a lot till he is shivering. I do not know how long he need to suffered for this but I hope it all go away soon. I cried inside my heart to see this situation. It pain to see him crying helplessly. Poor boy! His next appointment is set on next week Tuesday to try out the custom seat shape. I’m curiously waiting for the day and wonder how it looks like as I can’t find in at the website the doc mentioned. Let wait and see!!
1st Appointment on Tuesday
Standing all by himself
Happy to get himself up 
Appointment on Friday, the progress started, doc get his vacuum bean bag out ready for Alfred
1st Attempt on seat, Alfred cried very loud
2nd attempt, he cried as loud as he can plus with leg kickings and waving to me insist to hug him
Doc on progress to get the custom shape seat according to Alfred body structure
The structure seat is ready to be sent for fabrication of the seat
Alfred had a clock toy with him to played with and totally ignored the doc
Before the left the rehab clinic
p/s : Thank you Tonya for your informative blogs. I printed out several information about kyphosis and achondroplasia for doc reference and she amazed I could actually get so much information. I told her, it is from an amazing friends in the blogworld I met.
9 comments:
Wow, what a day! Poor Alfred! I hope that the doctors are correct and this is not wasted! The more Alfred is standing and walking the better his kyphosis should get. Hope others that have had to deal with bracing can help more. I know that Tonya and Jill have both done it with their kiddos. By the way, I like the new blog design!
Aidan's mild to moderate kyphosis straightened out after he started walking. It is good that you are working with Alfred early on. The earlier the better. I feel for little Alfred...going to the doctor can be the worst....but as they get older they get a little more used to it. I hope the custom seat works.
Thanks Destini and Melisa for your comment. I do really hope the doctor is correct and it help Alfred. I'm a bit worried as you all are having the same fact where kyphosis straightened out when they start walking but disagree by the doctor. She insisted us to get the custom shape seat for Alfred. Due to we have no specialist in dwarfism here, we have to bear with the doctor decision.
I really don't have anything to add about the bracing as I've never had to deal with this. I'm sure it's really tough being where you are and not having the specialists you'd like to have. Just go with your gut instincts. Those pictures of Alfred are adorable!! He sure looks like a sweetie :) Best of luck to you!!
Tonya and Jill are the bracing experts. I feel so bad poor Alfred was crying. He is such a cutie. Like everyone said, the jyphosis does go down a bit once they start walking, but that is not always the case. You are his best advocate and after a few months you will be able to notice if there is any difference! Adorbale pictures!
Good luck with the seat. Please post pictures when you get it. I am curious to see what it looks like. We just ordered a new seat for Olivia, but it isn't custom for her body. Dr Pauli said that Olivia is also too small for bracing at this point, but will probably need one eventually.
Alfred is so adorable! So sad that he was so upset and crying! I love his smiley pictures too!
Poor Alfred - so sad to see him so upset! He's such a cutie!! I hope the custom seat works well for him and that he adjusts to it well!
By the way - I love your new blog look - very cute!
Oh - it must have been hard for you to see Alfred so upset. Hopefully it will be all worth it. I don't know alot about bracing as Tori's kyphosis hasn't really caused us any problems. Let us know how it goes.
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