This was an incredibly long appointment.Jax got new hand braces he outgrew his other ones.The doc raised his baclofen quite a bit.We will do this slowly over time.He also will start a new medication to help with the dystonic and spasticity end of it.She does not want to start AFO'S just yet.His muscles in his legs are still to stiff and she is afraid it will tear his skin up.So the plan is..April he will get Botox..shortly after his botox he will go for serial casting where they will stretch his muscles and cast in that position.He will go back a week or 2 later and they will remove the cast and do it all over again.Ths will continue until they decide its time to stop casting and move on to AFOS.
He will also be seeing the orthopedic doctor regarding his subflexed hip.His leg has severely been turning in and worsening.He also cries sometimes if he is moved wrong.So he will see the doctor for this as well as for his scoliosis.We have so many docs say YES he has scoliosis and the one today does not think he does.So and xray will be in order to determine if he does or does not have scoliosis.I am praying he does not have it.Jax took all the pulling prodding and blood draw like a pro today.Not one fuss or cry.Waht a big boy he was ..I was so proud that we left docs office and went to Toys r us and he got another sing a majig for being so good!
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