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.
Saturday, March 15, 2008
Weekend Teething
Sorry no photo today. I'm updating from one of my dad's laptops. Just wanted to let you know that we haven't seen any actual teeth, but not only do I feel their corners pushing up under the gums, but he is chewing on his pacifier like crazy. This is significant because he lost interest in those things months ago. We had to scramble around looking for them when all this teething started. And the worst part is that at the end of the day, he gets quite uncomfortable and has difficulty falling asleep because he feels so lousy. Poor Boo-Boo. Would Tordol for teething be going overboard?
Wednesday, March 12, 2008
Well-Baby Bonus Round!
Tuesday, March 11, 2008
Cousins!
Monday, March 10, 2008
Two Cats, A Dog and A Baby- this is not the opening line of a joke
Murray officially has Feline Lower Urinary Tract Disease. It's as painful and annoying and impossible to understand as infant kidney stones. So now she needs more fluid in her diet. At least this is an easy one; give her soft food. And Prozac? We'll see...
Ming, Mom and Bumper are here. Maybe Bumper set it off.
Bo is so excited to see my mom and sister!
Saturday, March 8, 2008
Milky, milky... right?
Aside from an hour's episode before bed last night, Bo has been in high spirits. We may never know if it was the yogurt, or teething (when will this kid ever get his teeth?) or residual kidney stuff? But I'm just grateful that it passed.
We had a lovely visit from good friends in town who brought Bo some new books (hooray, and thank you!) which makes reading with Bo so much better. I've memorized the first 30 board books already. AND we went to the new independent kids' book store next to our neighborhood grocer. I love our neighborhood.
What a great weekend we are having. And we somehow squeaked by without a blizzard landing on us this week! Have a great weekend!!
Thursday, March 6, 2008
Three's a Charm
We think Bo passed his last of 3 kidney stones last night. He was pretty upset, but we were prepared. A small dose of Tordol and extra fluids seemed to hasten the process from several days to one. So, he had his IV nutrition (aka TPN), his lipids (the Omegaven that saved his life), and the lactated ringers (extra fluids) which meant that we had a triple splitter (Y-connector) hooked up to his catheter. The triple splitters we have are pretty cheap; made of thin plastic, so whenever he rolled over, it would clamp itself off and all three pumps would start alarming.
So we didn't get very good quality sleep last night. But it was still a hundred times better than waking up to him gagging, choking and retching. And we only had one night of this, rather than the 4-6 days the other two stones took.
Bo actually slept through all those pumps beeping. I guess he's used to it from all the nights he's spent in the hospital. He woke up in great spirits today and was so happy and cheerful all day. He is such a great guy!
Sunday, March 2, 2008
Happy 9 Month Birthday!
We are officially out of the literature. Since there aren't that many recorded cases of MID, we're already working with a limited knowledge-base. But of those recorded cases, most of those stories tragically end by nine months. As of today, we have even less literature to reference for Bo. I won't say that we beat the odds, but that there are no numbers available to even calculate them now.
I went out and bought both size 3 and 4 overnight diapers, giddy with optimism.
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