Bo finally has a picture where he looks like Jose. He also had rice cereal for the second day in a row. He is a good eater! Ooooh, good boy!
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.
Thursday, January 17, 2008
Wednesday, January 16, 2008
Rave Till Dusk(?)
Bo spun himself 180' around in his exercauser for the first time yesterday. His head is getting too big for most of the hats he has, which I've noticed only really go up to 6 months at the baby clothing stores anyway. As you can see here, this hat is on its way to being a skullcap and strangulating his giant egg.
Tuesday, January 15, 2008
Are You Talkin' ta Me?
Rinse, lather, repeat. The fever has not returned from Saturday, but due to what doctor and I believe was a contaminated blood sample of Bo's from Saturday, they insisted on another blood culture today. And since I am working and Jose is sick, we really needed help to get him to the doctor's and the hospital. Thank god for Jose's family. His mom came this morning to pinch hit for us and it has made all the difference. This is what family is for: to shower us with their grace and presence, to alleviate the fear and anger, and to make us feel as if all these impossible things we are so in need of are a pleasure for them to give.
And, hopefully, next time one of us gets sick, we'll have our respite care in place, especially since it was dumb luck that his mom had the time off.
PS all the labwork from today looked good, as I had guessed.
Monday, January 14, 2008
Developmental Delays, My Cheeks
The OT/PT people came to assess Bo's development, and they confirmed what I had guessed: he's ahead of the curve on a few things, behind on a few items, and on track for most milestones. So, that's the good news. The bad news is, since he isn't significantly delayed, he doesn't qualify for the weekly OT/PT that we were hoping for, although we will still get a few hours a month from an OT just because he is medically complicated and remains at risk for delays.
Sunday, January 13, 2008
24-hour flu (except it's not flu)
Still at home, hooray! His temperature stayed within the normal range each time we checked (every four hours) from 4pm through today. His CO2 was very close to normal, and all his other labs look good. So far, so good in the "not getting admitted department." We were so bushed yesterday, as the Bo episodes sapped all our energy and the bulk of the day: 11:30am-4:30pm running around, then administering additional fluids through our back-up pump, getting the pharmacist to come over and reprogram said pump, and checking his vitals every four hours. I can only imagine how tired Bo is today. He had just started his second nap when the phlebotomists came in and poked not just one, but both ankles! He was so exhausted that he fell back asleep almost immediately after they left. Today, Bo's bloodwork was drawn and run almost immediately (a one hour visit!), as the crush of poor was not yet present in the ER (express lab work is administered through the same registration desk when the outpatient labs are closed), unlike yesterday, which as a bright and sunny Saturday, all the poor folks who don't have docs came in for their coughs, colds and flu-symptoms (we were there for 3 hours). Thankfully, we've been able to get to wait in an exam room without all the germs of The Public to contend with.
Saturday, January 12, 2008
Short Gut Cha Cha, the Bo episodes
Although Bo doesn't have short gut, or a bacterial infection of his blood so far as today's bloodwork is concerned (normal white blood count and c-reactive protein level), he is dry (his Co2 is very low, his potassium is low, and his lips are chapped), and he spiked a fever. So, we spent the afternoon criss-crossing town with a hot, cranky kid. First to the pediatricians', then the hospital to draw labs, home and a follow-up call from the pediatrician regarding his labs (see above) and the game plan: give him additional fluids before we hook him up to his regular stuff, check his temperature every 4 hours, check his lips, and let the doc know if he is out of sorts, still. Go back to the hospital tomorrow to recheck his bloodwork. Let's keep our fingers crossed that it's just a virus and we can evade a January hospital admission.
Friday, January 11, 2008
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!
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