Rebel Yawn

Things we weren't supposed to do:

1. Cloth diaper without persistant diaper rash
2. Breastfeed without exponentially increased output
3. Go to Boston with insurance preapproval
4. Get Omegaven in Michigan
5. Heal the liver on TPN and Omegaven alone
6. Live past 6 months without transplant
7. Take no medications beyond IV Nutrition
8. Have the same central line since 3 weeks of age
9. Hit developmental milestones on time
10. Catch up to weight/length growth curves before reaching school-age

Yawn. Oh well.

Happy Hannukah and Merry Christmas!

Sitting Up!

Bo's been sitting up against the sofa and practicing without support for about 3 weeks. He can now sit on his own against the sofa for quite a bit without listing over. He's had so much fun with the Chan family this week, that he has been taking these monster morning naps. I'll be curious to see what his napping pattern settles into after they have all gone home.

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.

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)

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.

Pink Eye?

The never-ending saga of Infectious Baby! We woke up to his right eye swollen shut. He finds ways to give me a new heart attack each day. The terror, the joy, the surprise, the fear. The drama. This is no normal baby. But it is our mission to give him as normal a life as we can.

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.

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.