It's been a long time since I posted again! I wish I could come up with an extra 30 minutes every day to sit and post.
Emily has been in and out of the hospital. Right now she's inpatient. She has air in her bowel wall and possibly her chest, she isn't tolerating feeds, she's losing weight, she has blood in her stool, etc.
The GI thinks it's related to whatever mitochondrial disorder she may have, otherwise just an overall gut shut down. He is hopeful that it is temporary.
In the meantime, her VNS was supposed to be placed Friday. Surgery has been postponed indefinitely. :(
Please pray for Emily. She needs to get better quick!
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
20 comments:
Oh my goodness, Emily will be in my prayers! Hang in there.
Oh no. Definitely praying for your precious girl.
Hugs for you and Emily!
Praying!!!!!!!!!
I am so sorry. I will light a candle for Emily and for you -- for strength and healing.
We are praying for Emily and sending big hugs.
Oh Emily, you worry us so!!! You're in my prayers little one! xx
Waves of good thoughts and prayers from CT. Oh Sweet Girl. :(
Praying for your sweet Emily. And many many ((((hugs)))) to you. Take care
I will definitely be praying for Emily.
Hey my friend...just felt that even though I have been leaving messages on FB,I should also come here and bring you love and prayers and good vibes for you and sweet Emily.So hoping you will NOT be there when I come to see Klein.Praying you find home soon.
Saying prayers for Emily and for your strength. :(
Thinking of you both, and praying! Hugs to both of you!
Oh my gosh...I just came to check in. I'll definitely be praying for little Peanut. Please update us again when you can!
Sending good thoughts for your sweet little girl! I believe your girl is a fighter!
Keeping all of you -- especially sweet Emily -- in my prayers.
Oh no!!!! I am really hoping that things are better now. An overall gut shut down sounds horrible. She must be miserable! My heart goes out to you. I'm praying that you're home now or getting ready to go home.
xoxo,
Christy
definitely in our prayers. love that little emily -- and you.
By the way, in all your spare time, we need pictures of that precious room! I am so glad you are home. If you need bio-patch please pm me and we can arrange. do you use the spiral tubing on her line. It has been answered prayers to us. Seems we kept pulling her.
So sad she is going thru this...
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