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.
Sunday, December 30, 2007
Friday, December 28, 2007
Sitting Up!
And, so far, so good. We've had lots of visitors and done lots of visiting and Bo seems to be in the pink after all that pink eye fuss was over. In fact, I think he's starting to gain weight again. He had only gained a pound in the 7 weeks we've been back. I'm sure his weight-gain was stalled by his viral infection, the subsequent dehyration and recovery, as well as the pink eye.
Sunday, December 23, 2007
Omegaven's first Christmas in Michigan
By the numbers as inspired by Max's mom and Ellie's dad:
61 - Bo is the 61st baby on Omegaven
3- the number of home infusion companies we've had
4- the number of hospitals Bo had been treated
2- the number of GI specialists Bo has had
1- the number of visiting nurses
1- line infections
4- hospitalizations
(including the 1st 5 weeks of his life, for diagnosis)
2- other MID kids we've met
0- other babies on Omegaven in Michigan
5- blood transfusions before Omegaven (0- after)
61 - Bo is the 61st baby on Omegaven
3- the number of home infusion companies we've had
4- the number of hospitals Bo had been treated
2- the number of GI specialists Bo has had
1- the number of visiting nurses
1- line infections
4- hospitalizations
2- other MID kids we've met
0- other babies on Omegaven in Michigan
5- blood transfusions before Omegaven (0- after)
Saturday, December 22, 2007
What Pink Eye?
I feel fine. What are those eye drops for?
I'm hoping that since Bo's had a stomach virus, pink eye and bonus hospitalizations that we've gotten all his winter illnesses out of the way. The eye is much better. It responded almost immediately to the eye drops. Unfortunately, he has to have them 4x/day through Wednesday. At least this is an infection that doesn't require a stay at the Bronson Inn.
I'm hoping that since Bo's had a stomach virus, pink eye and bonus hospitalizations that we've gotten all his winter illnesses out of the way. The eye is much better. It responded almost immediately to the eye drops. Unfortunately, he has to have them 4x/day through Wednesday. At least this is an infection that doesn't require a stay at the Bronson Inn.
Thursday, December 20, 2007
Pink Eye?
Like a friend of mine (fighting cancer) said, it is surprising the friends who become indispensible and those who disappear; the acquaintences who become family and the close friends who stop returning your calls. All the heartache? Worth it. See picture.
Friday, December 14, 2007
Our Second Stay at The Bronson Inn
A stomach flu for Bo is a very serious affair, as rehydration requires hospitalization, IV fluids and checking his electrolytes (or "lytes" as the nurses say) once every 8-12 hours. Dehydration means potassium, sodium and chloride (salts) levels dropping, and sometimes dropping to scary low levels. We got to stay at the inn 2 nights this time. The pediatrics floor (aka PEDS, aka Childrens Hospital) is starting to get the idea that we are frequent fliers there. We are hoping that this is not a regularly scheduled visit.
Sunday, December 9, 2007
The Scholar
We read 5-6 books every morning. He likes to turn the pages. My parents didn't believe me when I told them this, so on their most recent visit, I woke them at 7AM to see for themselves. I explained that it's like whale-watching. You have to be up early in the morning to see him at his happiest. He is a morning person, for sure.
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