Practicing standing, two bottom teeth, and a spliced line. That last addition was something we were expecting at some point. I guess that point was yesterday. As luck would have it, the surgeon who is applying for Omegaven here at Bronson was the one to splice Bo's line. And the leak the original sprung was really really tiny.
And it all happened during the window when he's off his TPN. Not that we ever enjoy a trip to the ED, but we had Nurse Colleen with us and all the other fortunate things mentioned above. Bo was even good enough for a bit of a nap while we waited for the surgeon. And now I have both his cell and home #'s. He and Puder trained under the same guy; needless to say, they both believe in a level of medical practice I like to call Real Medicine. Thanks, Doc!
Bo was born on 6/3/07 with the rare congenital disorder currently known as Microvillous (Microvillus) Inclusion Disease. It took 2 hospitals and 5 weeks to diagnose. He became the 61st baby in the US to receive Omegaven. His nutrition is 100% TPN/Omegaven. We believe there will be a cure for this in our lifetime, and that a transplant is NOT the best option for this disease. This is our story.
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3 comments:
oh my, those cheeks! I can't wait to smooch them in person!
Wow that last picture.. even though we have posted a picture just like that on our blog, it still makes me want to barf.
Glad to hear he is doing well. We saved the cut off end and have attached it to a doll, so Ellie has a doll who has a CVL just like hers.
You have a great blog.
Abby
eleanorbrogan.blogspot.com
Funny thing is I was just showing my husband Bo's beautiful cheeks & smiles last night! I've been keeping up with your blog too.
I looked and searched but I couldn't find anything that is like MDCP in MI. You might ask your social worker. We made too much to have Caleigh on Medicaid so the program has really helped us. Hopefully, you can find something.
We have yet to experience the detached CVL. Ewwwwweeeee...... I am glad it turned out ok, but wow that just isn't a natural picture!
Bo is precious and you do a great job blogging.
Holly
hollydgray.blogspot.com
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