So, one week down on steroids and we still have not noticed any change whatsoever in Charlie's spasms. While we are trying to remain hopeful it is getting harder with each passing day. I keep telling myself that maybe they needed a full week to get into C's system and any minute now things are going to get better!
A couple things that are making life a tad more difficult right now...
#1 Jackson has his first cold :( We have been trying to keep Charlie Claire away from sick people because the steroids weaken her immune system and go figure Jackson, the one who is around her all the time, is sick. He has been a little more fussy than normal but for the most part he is handling it like a champ!
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| CC rocking out some serious zz's yesterday afternoon! |
#2 C's sleep schedule is all off so she is sleeping a lot during the day and waking up around 2am and staying up!
#3 We have a moody girl on our hands from about 5pm-9pm. Typically during CC's clusters she laughs and smiles but for some reason after her 4/4:30ish bottle she will usually have a cluster right after finishing and it just sets her off and pretty much for the rest of the night she is fussy but gets hysterical during/after each cluster. It seems that just as you are getting her calm she will have another one and you have to start all over again. This is super out of character for Charlie Claire -- it's hard to say if this is just a fussy time for her or if this is directly related to the steroids. I guess we will find out when she stops the steroids. (Thank you Aunt Anna and Aunt Theresa for giving me a hand last night so I could love on Jackson and get some cleaning done!) Please, please, please say LOTS of prayers that these steroids kick in. If they do it will buy us some time before surgery which would be really nice.
One last thing: Jackson would like to thank Aunt T for the snuggles last night!
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