We are going home today. Two and half days later! Clara is excited, and so is mommy and daddy. She hasn't slept well, nor eaten well.
Hey have determined that Clara has infantile spasms, based on EEG. She started epilepsy medication last night. Goal is for 0 spasms and 0 side effects. But this isn't always the case, so there may have to be some tweeking eventually.
It has been rough past week with all of it, but I am relieved to know what we know and move ahead. We are hoping with these under control she can progress developmentally.
The MRI results were rough. More significant PVL than I expected. The neurologist suggested signicant motor and cognitive delay. Of course we never know what Clara's potential will be. I know that it won't be easy be we will never stop helping reach the best she can be.
I have been really struggling, again, with I assume just the grief of all this added on top. No one ever is prepared for such obstacles with their baby. Jason and I have felt such heart break, over and over and over again. Bad news is bad news, and not even the strongest of can only take so much. We are worn out.
I thank everyone for all the prayers, texts. messages and for my family who kept Madeline on off over the past few days. Thanks to all of you who offered to help in way possible to help get us through the weekend. Thanks to family who sat up here with us. Thanks to old UNC faces to came and visited us.
It is always so hard to ask for help and reach out, so it's great we don't have too.
Love you all!
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