Since at the moment I am not inclined to curse and rant and rave I thought I'd give a little update. I will start by saying though that if you are looking for uplifting or witty you might want to skip over my posts for a while (not that I claimed to be any of those things anyways).
Atty has been making some progress. We are still at the hospital and I started my day crying because it really hit me hard that it's Monday and we are still here! He started being more responsive yesterday, and today he walked (using the word 'walked' loosely) around a bit and has been saying a slurred no and yeah with a few other words sprinkled in here and there. I've seen smiles, and he is definitely getting squirrelly and active. Active and uncoordinated is a bit scary. His birthday is on Wednesday and my birthday wish for him is that we are home to celebrate his birthday, the doctor tonight said we should make that a goal so that was nice to hear. Although I am trying not to get my hopes up too fast just in case. It does me no good. It's beyond wonderful to hear his voice even if it's only a little bit. My moods are all over the place inside but on the outside I am trying to keep a smile on my face and keep on keeping on. My wicked side has appeared a few times, mostly middle of the night or early morning...I think the nurses have all discovered it's best to let me go get my morning cup of coffee and then we can talk. ;)
I have so much swirling around in my head about our time here, but no time to do it justice in print. I think one of the hardest parts of being here really is seeing the stress and sadness on all the parents faces. It makes tears spring to my eyes over and over again. That and hearing the wails of an unhappy child wafting down the hallway. Makes me sick. Especially the little baby cries. I am thankful that Atty is starting to come around, and that hopefully we will find a way to keep his seizures to a minimum and find a new normal...at home...Home. Home. Home.
Lunch, Please
2 days ago
2 comments:
I hope for you and Atty and your family that you are home for his birthday.
thinking of you
praying too.
ps. my gf's foster daughter also has NF
Oh that is just so hard. I am praying that Atty is home for his birthday.
Prayers for you and your whole family!
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