Going back to the beginning....maybe
Well the last few days, have been a little rough....we have been working with a compounding pharmacy in order to get his dose down in volume but remaining the same. That being said we started with the new compounding medicine on Friday night. For a few days before that Brian and I felt we were seeing a regression in his skills. Having a hard time walking again, holding his balance in the bathroom, fine motor skills to feed himself along with writing. On Monday, he started complaining of his eyes being blurry. Yesterday, Wednesday, I spoke with Dr. Raymond, after going over everything with him, he discontinued his KUVAN (this is the BH4 supplement we started a few weeks ago) and increased his morning dose of sinemet from 1 teaspoon to 1 1/2 teaspoons. We stopped the KUVAN last night (Wednesday) and increased the sinemet this morning (Thursday). We are to touch base with him tomorrow (Friday) morning.
Tonight at dinner, he had to lean on me in order to hold himself up, in addition to his arm/hands being all over the place and having a hard time feeding himself. However, to give him kudos, he did not want my help and did manage to feed himself all of his dinner. One of the hardest parts of the whole thing is Ian knows what is going on...he does not want help and wants to do it on his own...if only his brain and his body would work together to do so....one step at a time...we will get there....
My hope for the new year is we continue to find answers, whatever they are and move forward where ever that may take us.
Tonight at dinner, he had to lean on me in order to hold himself up, in addition to his arm/hands being all over the place and having a hard time feeding himself. However, to give him kudos, he did not want my help and did manage to feed himself all of his dinner. One of the hardest parts of the whole thing is Ian knows what is going on...he does not want help and wants to do it on his own...if only his brain and his body would work together to do so....one step at a time...we will get there....
My hope for the new year is we continue to find answers, whatever they are and move forward where ever that may take us.
One thing I just realized I did not mention, Brian did take Ian to the eye doctor to have his eyes checked and everything checked out a-okay.
ReplyDeleteSara Lichtig Hoffman Our thoughts are with you! Let us know if you need anything.
ReplyDeleteBarbara Pozen Cooper Ian is a trooper just like his parents. This to shall pass and a new hurdle will appear. In these moments think back to a year ago and how far he has come and then listen to him read and smile. A fat cat that sat on a mat never sounded so good.
Lisa Goldberg Burgunder I'm thinking of you...Came by today, but you were busy talking with someone. I'll stop by next week.
Cheryl Muller Mendicino {{hugs}} hope the change in meds helps.