Practicing standing, two bottom teeth, and a spliced line. That last addition was something we were expecting at some point. I guess that point was yesterday. As luck would have it, the surgeon who is applying for Omegaven here at Bronson was the one to splice Bo's line. And the leak the original sprung was really really tiny.
And it all happened during the window when he's off his TPN. Not that we ever enjoy a trip to the ED, but we had Nurse Colleen with us and all the other fortunate things mentioned above. Bo was even good enough for a bit of a nap while we waited for the surgeon. And now I have both his cell and home #'s. He and Puder trained under the same guy; needless to say, they both believe in a level of medical practice I like to call Real Medicine. Thanks, Doc!
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, May 31, 2008
Three Big Things Before the First Birthday
Thursday, May 29, 2008
Taking Stock
This pic was from a year ago, today!
We're having a very low key birthday with his Grandma Holmes on Tuesday, and bigger belated birthday party to coincide with his Baptism. For those of you who are in the area or will be able to stop by, this will be at St. Toms here in Kalamazoo on July 5th, Saturday night, 7pm.
Medical update: One of the world's experts on Aluminum toxicity, Dr. Winston Koo, is at Detroit Children's. He did not seem as excited about Bo's Aluminum level as the Nephrologist (Dr. Bunchman, aka Yosemite Sam, aka Dr. 'Stache- he has a giant bushy mustache). I'll get a referral to him from our GI. We started eating meals together, where Bo gets to see us eating and talking. He has reluctantly started eating with us. Actually opening his mouth for a few bites of yogurt or even a cheerio! We'll see the GI next Friday.
And last but not least, we spent this week with his Yee Yee-Ma, my sister Tung, who had a week break in between meetings here on the mainland treated us with a visit. Bo loves Tung. They got to spend time reading, walking, playing and having fun together. What a great birthday present! I even got a mother's day spa day! Thanks, Tung! Bo is going to miss his aunty. Hopefully we will see her again in October (can we please set a date?!).
Bo will be a year old in less than a week. He has not had to stay overnight at the hospital since December. We're looking forward to the annual NICU reunion the weekend after his birthday. His two big teeth make him look like a beaver, sort of. He's doing a lot of standing and practicing walking! I hope he is walking by the time my parents see him in July.
We're having a very low key birthday with his Grandma Holmes on Tuesday, and bigger belated birthday party to coincide with his Baptism. For those of you who are in the area or will be able to stop by, this will be at St. Toms here in Kalamazoo on July 5th, Saturday night, 7pm.
Medical update: One of the world's experts on Aluminum toxicity, Dr. Winston Koo, is at Detroit Children's. He did not seem as excited about Bo's Aluminum level as the Nephrologist (Dr. Bunchman, aka Yosemite Sam, aka Dr. 'Stache- he has a giant bushy mustache). I'll get a referral to him from our GI. We started eating meals together, where Bo gets to see us eating and talking. He has reluctantly started eating with us. Actually opening his mouth for a few bites of yogurt or even a cheerio! We'll see the GI next Friday.
And last but not least, we spent this week with his Yee Yee-Ma, my sister Tung, who had a week break in between meetings here on the mainland treated us with a visit. Bo loves Tung. They got to spend time reading, walking, playing and having fun together. What a great birthday present! I even got a mother's day spa day! Thanks, Tung! Bo is going to miss his aunty. Hopefully we will see her again in October (can we please set a date?!).
Friday, May 23, 2008
Waking Up, Happy!
Maybe Bo is finally starting to move? I was mid-diaper change the other day, and turned around to get a fresh diaper. When I came back, there was a wet spot by his line, right by his shoulder. I thought for sure that his line had finally snapped. Then I sniffed it and realized, thank goodness, all this requires is a fresh blanket! He had peed a trajectory up to his shoulder!
Tio Ren is here through Saturday, and Yee Yee-Ma (Tung) arrives late tonight for a week's stay. And Grandma Holmes will be here for Bo's first birthday!
Murray doesn't seem to notice her naked, tail-free butt. She is in high spirits and wants to escape from her kitty-cat condo. If anyone knows someone who is a "caretaker," Murray still needs a home.
Wednesday, May 21, 2008
Bunny Hat!
Bo has been wearing his Bunny hat (made by nanimal) that matches his quilt. I remember when she gave it to us in July, when Bo was so so tiny, and I thought, my God, will he ever grow into this? Will he be with us long enough to fit this?
Thankfully, the answer is yes. And although some of the 6 month olds in playgroup are as big as he is, he is approaching his first birthday very medically stable. He wears his hat every day.
Murray came home last night and is in isolation in the sunroom until her stitches come out in the next 10-12 days. Poor thing. Her beautiful tail. I'm just beside myself, because we still need to find a home for her, but I'm thinking that a barncat job would be too much for her.
Monday, May 19, 2008
Surprises Abound Down There
Murray will have her tail-docking surgery today. She was doing so well yesterday that she walked out of the kennel on her own to greet me. She will recover 2 days in-patient.
While I was letting Bo air-dry the other day, I ran to get a wipe and when I got back, there was a wet spot by his shoulder near his line. My heart skipped a beat and I was certain that his fraying CVL finally sprung a leak. Then I sniffed at the spot and realized it was just more laundry and yet another new diaper for Bo.
He weighed in at 18.51lbs and 27"! Good Boy!
He started shaking his head, "No!" yesterday, and saying, "MeMemememememe."
Friday, May 16, 2008
Jump! How High?
Bo is jumping and bearing weight on his dumpling feet. I am having a hard time picturing him running by the end of the summer (or is it that I am having a hard time picturing our house child-proof by the end of the summer?). But then, this time last year, he was still in utero.
We just went to see our friends' new baby, born Wednesday and weighing in at 7lbs, 13oz. She seemed so tiny and only barely human. I remember Bo fighting to get to that weight after a month and a half, but barely remember the feeling of holding someone so small for so long. Now it is eighteen pounds of wiggle-toes and laughter (like, ha! you think I'm taking a nap?! Crazy mommie).
Thursday, May 15, 2008
Send Good Wishes for Murray
While we are actively looking for a new home for Murray, she got in a terrible accident last night and is in hospital for the next 5 days for observation. The best case scenario will leave her with a bobbed tail. The worst case scenario, is the worst case scenario. I am so crushed and devastated that Murray may have to lose her beautiful tail, or more. I love that fat, furry little girl. And Bo may never rembember her, but she loves dominating/sitting on (and under) his stuff.
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