Looking Good

Yesterday Charlie Claire was pretty miserable but this morning she has seems MUCH better! Just like last week, she is pretty content until we try to move her around...she doesn't appear to be a big fan of that. She also is not a fan of the occasional cough or sneeze.

Dr. Tye (neuro surgeon) was in early this morning and said C looks really good and he was super pleased! Charlie Claire has a head CT scheduled for some time today and if that looks good Dr. Tye may let her be released from the PICU. We would not be discharged from the hospital but C doesn't really need to be in the ICU anymore. Fingers crossed that the CT scan looks good! If Charlie does get moved to a regular room Jackson would be allowed to come see her!!!! Dr. Tye said that at this stage of the game with C's recovery we want things to remain uneventful...

Dr. Morton (neuro) was also in this morning... today we get to start tapering Charlie Claire's sabril!!!!! If you haven't been keeping up with the blog for a while then you wouldn't know why this makes us so happy! The sabril, while very effective at treating infantile spasms, has ugly side effects...one being permanent vision loss. Jason and I were super reluctant to put C on this medication because we knew that with the surgery she would already be losing her vision in the right side of each eye but we were really left with no choice. Dr. Morton originally said that since Charlie wouldn't be on it long term that her vision should be spared but you just never know. Back to the taper...we are beyond thrilled that we are able to begin the process of getting our sweet girl off this medication! Once Charlie Claire is off completely for a couple weeks she will have an EEG.

We can't say enough good things about MCV...Dr. Tye and Dr. Morton have been amazing, the nursing staff has been unbelievable (minus one night...sorry about that Aunt T!) in taking such good care of CC...we honestly could not have asked for a better experience!

We are feeling a little anxious/nervous about bringing Charlie Claire home...this is of course the outcome we prayed for but I can't say that we are prepared for the new set of anxieties this brings. Every move Charlie makes I am sure will be under a microscope for a little bit as we adjust to having a seizure free baby!

We are still blown away at the amount of love, support, prayers, etc. we have been getting for Charlie Claire...thank you all so much for being a part of this journey with us.

A couple of pictures of Jackson and Charlie Claire to brighten your day....