Well, we're back. We brought Bubsy to Children's Memorial this morning after the second straight night of no sleep. He's had abdominal pain for a while, first centerd around feeding times, that's gradually gotten worse. Last night, we couldn't get him any relief.
The doctors think it might be a side effect of one of his medications. Hopefully, it will be that easy. Otherwise, he'll have to be sedated for an endoscopy on Monday. They don't think anything really scary is wrong. They think he might be allergic to milk. Poor little guy.
Its not been a banner week for the Grunsteds. It started off well enough - Tuesday we had our adoption court hearing and Bobby was served with the papers announcing my intent to adopt him (see photo on home page). The hearing itself was easy - the judge asked about his feeding tube, asked what we did for a living, asked where we live and how long we've been together. He then told us about how the nun who runs a local group home for developmentally disabled folks is the aunt of one of the judges he works with.
To my surprise, the week's toughest interrogation took place on Wednesday when the nurse and head teacher at Bobby's new day care came to our house. The nurse was very rude and basically told us that Bobby shouldn't be in day care. This even though we have letters from each of Bobby's doctors saying they had no medical reason to advise against him being placed in the program. The worst part was that the nurse didn't listen to anything we had to say about Bobby's medical condition and apparenty scared the heck out of his prospective teacher. So we don't know what's going to happen. It's very scary because we had stopped looking for other options when Bobby was accepted and we told his current nanny her last day was October 1st. My biggest issue is not that they might decide Bobby's not safe to be in the program - if they can't provide for his care, then we don't want him there, obviously. But the decision isn't being made based on facts. Its being dictated by a nurse who has never examined Bobby or even spent 30 seconds thinking about him as Bobby instead of a baby with Ds. And instead of these questions coming up during the original enrolment, they accepted him even though they had access to all the medical information they are now using against him. We have a meeting next week to see what's going to happen.
So that's that. Valerie and I are worn out from worry over all of Bobby's issues. We have folks trying to help with day care ideas, but nothing seems to pan out. We had to go to the er to get some progress made with his GI issues. It's getting very difficult to keep the longer term in perspecive as we struggle to make progress in the now. Thank God Bobby is so cuddly.
9/15/08
Daycare, Raspberries, and Pyloric Stenosis
It's been quite a few weeks in the life of young Master Bubs. We found daycare! And by we, I mean Valerie, who did nearly all of the work. Starting next week, Bobby will be attending an Early Head Start Program. He qualifies based upon his Down Syndrome diagnosis. They have a nurse on staff, a very palatable 3 teachers to 8 infant ratio, and a staff that is already charmed in advance by Bobby. It's a huge relief.
It's a huge relief because the feeding tube is not going anywhere for a while. Since Bobby's surgery we've scarcely been able to work with a bottle because he has had some severe digestive problems. What started as the occasional spit up became vomiting of 2-3 feeds a day. His weight stalled, he was miserable all of the time. The whole thing was terrible.
Last week we took him to the GI doctor. They found that his problem may be something called pyloric stenosis. Essentially, the condition is caused by an infant being unable to relax the muscle that connects the stomach and the first part of the small intestine. Over time, the muscle gets very big from being overworked and food can't pass out of the stomach very well. The solution is, of course, a surgery. But not a horrible one, like open heart surgery. We're doing more testing today, but we may just watch the condition for a month or two.
The good digestion news is that we switched to soy formula last week and things are looking up. Bobby has had several good days and seems to be feeling much better, although his daily fevers are returning. Some days it feels like we're just playing the carnival game 'Whack A Mole'. We whack one ailment into submission and two more pop up to replace it.
In much, much happier news, Bobby's progressing in his development. His neck is getting much stronger and he's able to hold it up for a few seconds at a time. We're working with him on putting his toes to his mouth (ab crunchers) and reaching for toys (working his pecs).
Verbally, he's going crazy. Sunday morning about 3 am I woke up to the sounds of Bobby fopping away in his bassinet. His favorite sentence so far involves a series of coos and ends with a raspberry. It's the sweetest sound ever.
Tomorrow the three of us go to court for Bobby's adoption hearing. I'm very excited because, before court, we have to go to the sheriff's office so Bobby can be served with papers. Five months old and, already, he'll have a record. That kid is 2 cool 4 drool.
It's a huge relief because the feeding tube is not going anywhere for a while. Since Bobby's surgery we've scarcely been able to work with a bottle because he has had some severe digestive problems. What started as the occasional spit up became vomiting of 2-3 feeds a day. His weight stalled, he was miserable all of the time. The whole thing was terrible.
Last week we took him to the GI doctor. They found that his problem may be something called pyloric stenosis. Essentially, the condition is caused by an infant being unable to relax the muscle that connects the stomach and the first part of the small intestine. Over time, the muscle gets very big from being overworked and food can't pass out of the stomach very well. The solution is, of course, a surgery. But not a horrible one, like open heart surgery. We're doing more testing today, but we may just watch the condition for a month or two.
The good digestion news is that we switched to soy formula last week and things are looking up. Bobby has had several good days and seems to be feeling much better, although his daily fevers are returning. Some days it feels like we're just playing the carnival game 'Whack A Mole'. We whack one ailment into submission and two more pop up to replace it.
In much, much happier news, Bobby's progressing in his development. His neck is getting much stronger and he's able to hold it up for a few seconds at a time. We're working with him on putting his toes to his mouth (ab crunchers) and reaching for toys (working his pecs).
Verbally, he's going crazy. Sunday morning about 3 am I woke up to the sounds of Bobby fopping away in his bassinet. His favorite sentence so far involves a series of coos and ends with a raspberry. It's the sweetest sound ever.
Tomorrow the three of us go to court for Bobby's adoption hearing. I'm very excited because, before court, we have to go to the sheriff's office so Bobby can be served with papers. Five months old and, already, he'll have a record. That kid is 2 cool 4 drool.
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