This past week was pretty great. It was a lot of Mommy & Baby time as Daddy is trying to get back into a routine of work.
On Wednesday we had 2 separate doctor's appointments at the hospital. First was Dr. Epps, Leahs new dermatologist. She had some blood drawn as part of her biopsy testing. (Dr. Epps was kind enough to schedule the best vein-finder IV tech in the hospital to draw her blood. He used my special super-soft gauze under the tourniquet and while he had to hold her little arm pretty firmly, we didn't really have any blistering, only a bruise). Dr. Epps also made special arrangements for us to come in early, before the office technically opened so that we could go straight back to an exam room and not sit in the waiting room with other kids.
There is the possibility of Jeff and I being tested as well to learn exactly what happened, genetically speaking. Our genealogy is determining some of what tests are being done since there seems to be some correlation between types of JEB and ethnic backgrounds. So with Jeff having a Scandinavian background, and me having a German one; Dr. Epps choose the testing based on that.
Then we were off to the ENT. That appointment wasn't so well-prepared. We sat in an exam room for a good 35 minutes before the doctor came in. Then we had to wait while the scheduling coordinator worked on finding us a date for Leah to go back to have another look at her airway. Overall we walked into the ENT office at 2 and didn't leave the hospital until almost 4. That's right, the beginning of DC rush hour traffic.
I'm a smidgen worried about this second look at her airway. Essentially it's like another surgery. She'll need a pre-op checkup (another trip to the hospital), she'll be sedated for the procedure, and we'll most likely need to spend the night at the hospital for observation. But; if it means finding out anything more about if and when the trach could come out, we'll have to do it.
For now I'm just very, very happy that Leah is home, eating well and above all: happy. I'm amazed at how well she does with everything. She pretty much only cries when she poops herself, which is a great thing when you think about it because with our worries about infection being so great, I definitely want to know as soon as the poop hits the diaper; and she lets me know. I always call her the best baby in the world. When everything going on makes me want to act like a baby and kick and scream and cry, she just looks at me kind of like this:
I don't know exactly what this face is .... but I know it's happy and goofy. Basically, typical Leah (the best baby in the world).
4 comments:
That look says, "Mommy, you so crazy"!
She is the best baby in the world, hands down!
That look says, "Mommy you are the best mommy in the world and I am truly blessed" and Leah really is the best baby in the world!!!!
She is saying, "Nana keeps talking about my Christmas list"....somebody want to help me?
I love this blog Meg! You are truly the best mommy Leah could ever ask for. Give our love to Leah and Jeff. Praying for another great week for you all. I think I already passed this blog along to everyone praying for Leah, but I didn't notice before that you could actually make a donation on line. What a great way for all of us to help. We'll spread the word. Penny
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