I finally did some more dreaded research on our precious baby's disease. www.debra.org
I HATE doing this...but it has now been 6.5 weeks since his final diagnosis and it's time I come out of denial. Everyday that has gone by I look for signs of healing...signs that he is getting better. He is not. The reality is that Luke was born with a lifelong disease. (we are not giving up on a healing miracle though) Everyday is different...some much better than others. He has been taking in more ounces over the past week which is great news, however, he is starting to spit up A LOT more formula AND mucous. (sorry gross) This "mucous" is not a good sign. We were warned about this. It could mean there are in fact strictures of some sort forming in his esophagus. :( I am almost 99.9% sure we will go through with the scoping. My gut tells me it needs to be done. I keep trying to push this feeling away making up plenty of excuses to not do it, but there have been too many signs telling us to go through with it. Maybe God is reminding us that this is His plan and we are to put ALL of our trust and care in Him for our Luke.
We went in for a weight check and he had gained 10 ounces in 13 days! Another praise! He is now a whopping 11 lbs. 15 oz. That sounds like a lot...here is what a mom of an EB baby wrote from her blog explaining weight/nutrition with an EB baby...
"And just to clear things up for those of you who have just begun reading or don't know much about EB - You may think I'm crazy for talking g-tube for a (previously) 17 lb 11 oz eight-month-old. And if he were a "normal" baby, we would be. But the problem is not how much he weighs. The problem is with his growth curve. Any time he starts falling off his growth curve (and a month without gaining any weight was doing that), we have issues. There's a lot to consider with EB, but nutrition is #2 (I consider #1 to be infection). Like I said in an earlier post, once EB kids get behind, it's a real struggle getting them caught up. They need MANY more calories than "healthy" kids, and their bodies require lots of EXTRA to heal the blisters they do have and to regenerate new skin. Healing takes a lot out of you."
in case you are interested...her blog is www.patriceandmattwilliams.blogspot.com
Luke still has blisters forming on his chin. There have been 3 so far...the newest one is in the corner of his mouth. It's tiny though so hopefully it won't affect his eating!
Just a little update! Like Lindsay mentioned on her blog once...blogging can definitely be therapeutic. After reading so much last night, I needed to blog! Greg and I are obviously so in love with our little boy and it literally makes our hearts ACHE so badly to know this innocent life has to deal with so much. I wish I could trade places with him...honestly I do. Thanks again for the continuous prayers, letters, encouragement, and sweet notes!
Hang in there - it sounds like you are doing everything right! Luke is so lucky to have a mom like you!!
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