New Year, New Tricks

Sitting up, saying dadadadada all week, until yesterday's mamamama. Mostly it's dadada and a lot of vowel sounds sprinkled with raspberries.

The OT/PT people will come do an assessment Monday morning. Bo's a little behind on the fine motor skills, I think it's mostly because we are nervous about introducing solids. But there's no time like the present. Rice cereal, today!

What's Next?

Nobody knows. I'm working 25hrs/week as of 12/17/07. This ramps up to 32hrs/wk starting2/2 and back to full time 3/10. So far, Bo doesn't seem to miss me too much. I get to hang out with him in the morning before going to work, as he is a naturally early riser. Then, around the time I come home, he's either just getting up from his first nap or just about ready for the second one. His mood tends to get more rowdy as the day wears on and as he resists his later naps. Yesterday we kept him awake through what would have been 3rd nap, since that was such a disaster the day before (no nap occurred, just resistence to it). Today, he went down for 3rd nap rather late in the day, and I'm just waiting to see if he will sleep through the night and wake up really early, or decide to wake up during what is the middle of the night for him (after 8:30pm).

Mondays, his visiting nurse comes to draw blood for labs, and take his weight. Monthly she will draw extra blood for the Omegaven study run out of Boston Childrens, and measure his length. Today, he was weighed and measured: 26" (25%! hooray) and 14lbs 6oz (only 2%, but that's an improvement from not even being on the growth curve). His bilirubin was 0.1 again, for the 5th or 6th week. It's been so low for so long, I can't remember. Isn't that great?

Next Monday the county OT/PT people will come to give Bo an assessment and determine what additional services he will get, if he needs any at all.

Our Michigan Children Special Health Care (secondary insurance from the state) respite care request is being reviewed in Lansing (which we really, really need, especially once I have to start travelling for work again). And, hopefully, our request for Private-Duty Nursing will get submitted and reviewed soon, too. Our primary insurance policy already excludes both. They only approve private-duty nursing or respite if it's instead of the patient being in the hospital (meaning they stand to save a substantial amount of money).

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.