3 weeks post IVIG - update!

[amyjoy]

I must share with you my joy that DS is doing so well 3 weeks post ivig. He has had definite improvement and tic reduction, and more than I had dared to hope for at this very early point. Although he's reluctant to say anything specifically about feeling better in case its just part of the normal waxing and waning, he noticed it enough to cancel a couple of appts with the cranial osteo person that he sees pretty much every week and gives some tic relief - for the last 2 years, and has very often lived literally appt to appt just barely hanging on. Now last week, and this week, he canceled his appts because he didn't want to miss basketball or whatever, which normally he would miss anything, no matter what, to see Dr. cranial person. THAT is a first, the best news!!!!!

 

Today, although it may be a flukey thing, or a tease - today my brain turned on in a way I haven't felt for a very long time. Like, my memory and focus were intact, and my ability to care about anything at all beyond my home situation - to really care - in a way that feels grounded and familiar, was just there. I have no idea whether or not it will stay like this, but I think it’s a sign that the healing process is working in me as well as DS, and I am so very very grateful, so grateful beyond measure. And someone asked me at work how I was doing and I just said, great, and it felt great, and normal, and real, to just say "great". How ABOUT THAT????

 

I think i'm finally starting to exhale, that the insane amount of attention and intention and energy i've had to constantly hold on my son is letting go a little at a time, and it feels like coming out from being under the biggest darkest heaviest life sucking cloud and having actual moments of feeling just normal, and normal is awesome. Who knows, tomorrow i may be brain dead again and DS may have backtracked some, but I know that today is a sign of restoration if not in full, then at least around the corner. And at least, that i still have some brain cells left, that is encouraging!!

 

We must be just so brave, and march on.

[browneyesmom]

Fantastic news, Amy!! Thank you so much for sharing this; it gives me hope... may things continue improving for your son, you and your family!

 

Denise

[Tamistwins]

Im so happy to hear that things are going so well for you and your family. Let the healing continue on!

[SarahJane]

YAY!!! So happy to hear your positive news!!! Glad to know that a family is getting their life back.

 

We are 4 weeks post-IVIG, and also in a good place with our ds(6). (Almost put "very good" in there but am still waiting for a shoe to drop or the bottom to fall out or whatever that feeling is that we all have when things are going well.) It is no less than amazing the difference we have now. I know you know what I mean amyjoy.

 

Keep on keeping on.