This past week has not been an easy one. We are really struggling with one more BIG thing added to our list of woes.
Kelsey’s mood has been pretty dismal until some relief yesterday afternoon. Coincidently the cold she’s been fighting seems better today, so the terrible mood could be related to her cold symptoms. I’m hoping so, and that she will start feeling better and willing to be put down, play, and smile a little more.
The spasms have decreased dramatically. We thought this was great. We have been tracking them very scientifically.
Not. But it does show that the spasms have decreased from our estimated 10-20 before beginning the prednisolone. Which we never, to my dismay, tracked like this. It seems like a ton when they are happening, but when you write them down they don’t add up to quite as many.
Yesterday she only had one spasm. So we emailed the neurologist, thinking this was a cause to celebrate. Instead, she was hoping they were gone completely already. This was not the impression we were given at our appointment last week. Yesterday she told us if she had another one yesterday or today, we’d up the drugs and be on a new timeline. We were pretty depressed. We thought we had two weeks for them to be gone. Guess not.
Unfortunately today she had two spasms. One while I was snuggling her in her nursery this morning. Another while we were out to lunch with MomMom. Two would have been unheard of a week ago, but today it was two too many.
So, tomorrow we will add a fourth dose of prednisolone. I reeeeeeeeeeeaaalllllllllly hope this doesn’t make her mood any worse. It is hard enough to care for a toddler with developmental delays and vision problems. The bad mood. Well, it does NOT make life fun.
Thanks for the calls and texts and the outpouring of love last week on Facebook and the blog. It really means a lot. We feel like we’ve overextended our sympathy needs from our family and friends in the sick kids department. But each and every diagnosis and hurdle is just as hard as the first. We may have thicker skin, but that’s it. We are hurting just as much, since our baby is hurting…again.