Today we had an appointment at CHOP. The past several times we haven't had a chance to visit the NICU so it was great to do so today. Edison had plenty of smiles and kisses for his heroes.
Our appointment was with the neuro-ophthalmologist to further evaluate Edison's ptosis or droopy eyelid. The purpose was to rule out neurological causes before planning surgery. The ophthalmologist thinks that Edison has something called Horner's syndrome. Way back when Edison was 3 weeks old (2/28/05 if you want to see the post on www.babyruef.blogspot.com) he had that IV line in his head (PICC line) that infiltrated. All of his nutrition was going in that line (vitamins and minerals) and that built up under his neck causing a sort of chemical burn that was very deep and painful. He has a pretty significant scar there now. Well apparently this damaged a nerve that caused his eyelid to droop and his right pupil to be a little smaller than the left. So now with this information we need to follow up with the other ophthalmologist and decide what to do about surgery.
Here are some pictures from our NICU visit, the highlight of today's trip:
We got to see our Daisy. She always joked she was going to steal Martin from me :) Aside from always making sure Edison's room was clean she always made sure we had smiles on our faces. She could make me laugh when no one else could.
The "dream team". Dinky's main nurses: Michelle, Heather and Dana.
Michelle had some wonderful news to share. She's pregnant!! I think we all know the amazing mother she will be. Congratulations to her and Corey!!
Our appointment was with the neuro-ophthalmologist to further evaluate Edison's ptosis or droopy eyelid. The purpose was to rule out neurological causes before planning surgery. The ophthalmologist thinks that Edison has something called Horner's syndrome. Way back when Edison was 3 weeks old (2/28/05 if you want to see the post on www.babyruef.blogspot.com) he had that IV line in his head (PICC line) that infiltrated. All of his nutrition was going in that line (vitamins and minerals) and that built up under his neck causing a sort of chemical burn that was very deep and painful. He has a pretty significant scar there now. Well apparently this damaged a nerve that caused his eyelid to droop and his right pupil to be a little smaller than the left. So now with this information we need to follow up with the other ophthalmologist and decide what to do about surgery.
Here are some pictures from our NICU visit, the highlight of today's trip:
We got to see our Daisy. She always joked she was going to steal Martin from me :) Aside from always making sure Edison's room was clean she always made sure we had smiles on our faces. She could make me laugh when no one else could.
The "dream team". Dinky's main nurses: Michelle, Heather and Dana.
Michelle had some wonderful news to share. She's pregnant!! I think we all know the amazing mother she will be. Congratulations to her and Corey!!
posted by Jen | 7:20 PM
3 Comments:
Poor little fellow. I remember those times well, but there were so many things happening, they all kind of clump together now. We've come a long way together, haven't we?! All because of this little fellow that could and did - he led us, along with these care givers and two parents whose stars shine ever so brightly. love to all of you, with a big lump in my throat...
dobie
Dobi always expresses our feelings so well, I will just say, "Ditto!"
It is wonderful to see happy and smiling faces in NICU as they respond to our pride and joy.
Love and hugs,
GG and Jean
Congratulations Michelle!
What a lucky baby.
You will soon appreciate the joy that we feel, and we know that without your loving care (along with Dana and Heather and many others) we would not have this precious little creature in our lives!
Have a happy, healthy pregnancy!
Mary (Mom)
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