Tuesday, April 8, 2008

Update

Sorry for anyone waiting on an update from Zoey's appointment yesterday but the day was an absolute haze to me by the time evening rolled around. Mark and I are usually up until 11:30 or 12:00 but last night I dragged myself upstairs around 10:30 and barely remember hitting the pillow. Good thing I went to bed a little earlier as Zoey had a restless night. Up a few different times for a short "snack" then back to sleep. She seemed uncomfortable but I can't put my finger on why. Probably the ATCH building up in her system. We are extremely fortunate that Zoey has always been a fantastic night time sleeper. Cat napper during the day but great at night. So we have been spoiled. Tide may be turning thanks to the meds. though. She is down for a nap now, so here's the report. Her heart looks absolutely perfect for now and we are thrilled about that. She will have another echocardiogram in 2 weeks to take another peek. Friday is the big day. Video EEG. We'll get a better feel on how this course of treatment is progressing after that. We pray for good news. I have already prepared myself for another 4 weeks of injections after friday and I am ok with that as long as we see improvement in her hyps arrythmia. For those of you that don't know, Hyps. are the chaotic discharges firing all over her brain that causes the spasms and leads to the deterioration and delay of development. BE GONE HYPSARRYTHMIA!!! So all of my prayer people, thats the focus of our week. That friday will come,we see marked improvement in her EEG and these nasty episodes are gone completely and a thing  of the past. Continue to pray for all of our strength to see this latest bump,or mountain , in the road, vanish and she can get back to doing just regular baby stuff. Thanks for checking in on us , it is appreciated more then you know.

3 comments:

just jean said...

Heather,
I WAS waiting for the hospital report. However, I didn't mind the wait, especially since you were using your time for some good and well deserved rest. I am so glad that the reports that came back were good. So far, so good.

I ususally visit the website everyday at school when I am eating my lunch. You always have words to say that touch my heart and help me keep my attitude towards life in line. And...I'm glad to ease your burden a little with a basketful of prayers from the midwest. Thanks for sharing so much of Zoey and your life. You are reaching the hearts of more people than you even know.

just jean

jotcr2 said...

I hope the EEG looks organised and that the Hyps passes. We had 3 weeks on Vigibantrim (which often works well on kids with DS), but it didn't work, and the EEG was still completely chaotic. She was switched to Prednisolone, and that cleared the hyps after 1-2 weeks, but she'd still have spasms/seizures for about 6 wks while on high dose Pred. Pred is so strong, she might have just been grimacing rather than them being seizures, but we'll never know.

renee2008 said...

Always sending positive thoughts and prayers your way. Glad to hear from you...sorry you had a rough night. Just know that you are not alone in this battle. Zoey and the whole Needham clan are so loved and prayed for :) Lots of Love!!