This is an old photo, but it pretty much summarizes the mood today...
Quinn is in a foul mood today. The reason - you guessed it, is ACTH. Man, that drug has turned my beautiful princess into one angry girl. Yelling....yelling....more yelling. I really need aspirin. She also has no motivation to do anything except be held or yell. It is all very draining. We are supposed to go out for an early celebration of my birthday, but I am not sure I want to do that with the yelling queen. Two weeks down and six to go (hopefully).
The worst part is that she won't play like she used to. That is very hard to witness. I know now that any further gains in development will not be coming any time soon with this drug pumping through her system. Hopefully we can back on track after this is over, hopefully the seizures will be gone, and hopefully we will be left with only the DS. Funny how your perspective changes when something else gets added to the pot. DS-only is seen as a cake walk to me now.
This blog is about our journey raising three bright, gorgeous kids (Riley, Aidan, and Quinn). Miss Quinny happens to have an extra 21st chromosome (Down syndrome) along with Infantile Spasms (West syndrome) and Stereotypic Movement Disorder. This blog is for awareness and advocacy for families with children with special needs.