Amelia was put on medication for her spasticity. I will start this in the morning so I can monitor her. She will be on an extremely low dose to start and then will be monitored over the next couple months. Of this low dose I will only give her a third of what she should be taking so I can watch for seizures as this puts her at a much higher risk for having them. I'm obviously praying for no seizures and that this medication will help limber her up some.
She will begin serial casting as soon as we can. Both her feet/ankles/lower leg will be casted for 4-6 weeks. Hopefully we won't have to go longer than that. This will be another joyous time for us with casts and sponge baths and finding clothing to fit. I literally just bought all new clothes for her because she skipped 24 month clothes. Ugh
Amelia is a perfect candidate for selective dorsal rhizotomy. This is a neurosurgical procedure where thankfully her NS is very skilled at. He will go into her spinal cord and interrupt the nerve that is causing her spasticity in her. This is a permanent and scary procedure. They don't even think of doing this surgery till 3/4 but it has to be done before 8. In the next year or so we will see where Amelia is at and will decide if she's ready for this surgery (if this is something Matt and I want to do).
Her DP was very, very impressed at Amelia's speech and her cognitive skills. That made me proud! She may be lacking in gross motor skills but she's one smart cookie!
Okay on that note I may have to go make the baby some cookies hehe
During this appointment Amelia said to the resident (who promised her a sticker) I want my sticker please. This impressed them both. Then she decided to take her shirt off while she was playing with the Doctor. She's such a hoot! Love my little monkey butt (her new phrase).
Hi how are you guys? I used to see you post all the time on the what to expect forum but I have not seen you in a while. I have been checking back here to see if you have updated it but you have not. How is Amelia? How are you and your husband doing?
ReplyDeleteMy son is 4 years old and he has cp too he is unable to walk we are fixing to get his first wheelchair in a couple of months. As I was reading some of your post I could completely understand some of the things you were feeling! I hope you guys are doing ok! Take care!
Sorry for the lack of updates, it's been a long couple months. I just had another little girl so we are trying to figure it all out. I'm sorry to hear about your son. As much as I don't want to admit it, I feel we will be ordering a wheelchair soon too. She shows signs of independent walking but then again is so far from it and she has no desire to try to do it. Thanks for reaching out.
ReplyDeleteThank you for the update! Congrats on the new little one! I know it's going to be crazy for a bit in your house! We have 2 younger ones and 3 older ones and our 4 year old it's always a blast in our house! Is Amelia excited about her baby sister?
ReplyDeleteThe decision to get the wheelchair was a hard one but we needed to do it for one he will be able to go to school with it also it gives him more independence. He has a walker but like you said he doesn't really like using it.
I'm so glad you responded I have been thinking about you guys and was unsure of how to get in touch with you!