David saw his pediatric endocrinologist this week. She's nice and knowledgeable and all, but I'm glad his next appointment is not for 6 months. It's an hour and a half drive, and he always has to get his blood drawn ahead of time. This is not a complaint, because the (tedium?) of the visits is an indicator that he is doing well. David's hypothyroidism is very mild, his medication dosage is low and is apparently quite effective, and there are no other major health concerns at the moment. So all that is excellent, so no complaints whatsoever. But maybe next time if all the lab work is normal, we can do this by phone?? Or perhaps Matt can take him, I keep telling him the (young, female) doctor is quite attractive :)
Developmentally, we are working on changing David over from his bottle to drinking milk out of a (regular, not sippy) cup. We started on the cup transition with water maybe 6 weeks ago, at the behest of his speech therapist (speech and OT do their regular stuff with David, but they are both also feeding resources for infants/babies). He actually did quite well with managing the cup himself with the water, but hey, water is free and doesn't make much of a mess. Since we started doing milk in the cup, we are holding it all the time, so far. The first session, while the speech therapist was here, was awful - David cried the entire time. And by that I mean, the entire time, like an hour. The ST kept saying, he can do this (he is developmentally/physically capable), it's only a matter of how much you guys can deal with. Fortunately he only cried for the first couple of days, and we are pleased with his progress. We're still holding the cup for him, but he's much more agreeable. But it takes forever. I guess we shouldn't be too surprised; after all Simon is almost 5 and has no developmental issues, and it usually takes him a really long time to drink from a regular cup, if he's not really thirsty. Sometimes a meal takes about 45 minutes, so we are still doing a bottle if we are in a hurry or have an appointment. and his last bottle at night is still a bottle, every night - I imagine that'll be the last one to go, and I'm in no hurry. But it is a great step toward being a big guy!
Thursday, March 8, 2012
Friday, March 2, 2012
Candidate
A couple things:
1. Some scary moments with David's breathing the other night; he's fine but I was really close to calling 911, at 2:30 in the morning. Fortunately I was able to remain calm and follow all these various steps we're supposed to try. He finally started sounding better and was able to get back to sleep; we followed up with the pediatrician the next day and he's okay.
2. Two developmental things: (a) David loves playing with Simon's Megablox, but he has (to date) not been very good at squishing down the blocks once he stacks them, so the towers are not too stable. But now, he's doing it all the time, and building some pretty great towers. (b) Today Matt and I watched him as he was standing up, holding onto a kitchen chair. He reached down to pick up a toy, and instead of plopping down on his butt as usual, he continued to hold onto the chair with one hand while he reached down with the other. ... I know neither of these seems huge, and they may not be, but they are new, and we're all quite impressed.
Mr. David has taught us a lot about the various subtle sub-steps that go into everything that most of us just do, and to appreciate every little bit of progress along the way.
3. I've gone to several out-of-town conferences lately, to get continuing education credits for my social work license. It's nice to meet folks that do not know I am the wife of a pastor, or the mother of a kid with Down syndrome. It's nice (a) because it means I'm getting out of the house and meeting other humans, and (b) it's almost a little game now, timing when I choose to make either or both of these announcements. It seems that either of these factors makes me a candidate for sainthood in some people's minds, and when you combine the two, look out - there is this certain look folks get in their eyes, a mixture of "awwwww" and some sort of ... combination of whatever they think those things mean, whatever beliefs/stereotypes/experience they have with each one. The notion that "Down's children are always so sweet" (please do not ever refer to my child as a "Down's child") is definitely the front-runner, but pastor's-wife is a strong contender.
People are funny. They're also generally very nice and sweet and wonderful, so I shouldn't poke fun, but it really does happen almost every single time. You could try it too – it doesn’t have to be true, you just have to say it.
(Yes, it’s the little things. I need some way to amuse myself)
1. Some scary moments with David's breathing the other night; he's fine but I was really close to calling 911, at 2:30 in the morning. Fortunately I was able to remain calm and follow all these various steps we're supposed to try. He finally started sounding better and was able to get back to sleep; we followed up with the pediatrician the next day and he's okay.
2. Two developmental things: (a) David loves playing with Simon's Megablox, but he has (to date) not been very good at squishing down the blocks once he stacks them, so the towers are not too stable. But now, he's doing it all the time, and building some pretty great towers. (b) Today Matt and I watched him as he was standing up, holding onto a kitchen chair. He reached down to pick up a toy, and instead of plopping down on his butt as usual, he continued to hold onto the chair with one hand while he reached down with the other. ... I know neither of these seems huge, and they may not be, but they are new, and we're all quite impressed.
Mr. David has taught us a lot about the various subtle sub-steps that go into everything that most of us just do, and to appreciate every little bit of progress along the way.
3. I've gone to several out-of-town conferences lately, to get continuing education credits for my social work license. It's nice to meet folks that do not know I am the wife of a pastor, or the mother of a kid with Down syndrome. It's nice (a) because it means I'm getting out of the house and meeting other humans, and (b) it's almost a little game now, timing when I choose to make either or both of these announcements. It seems that either of these factors makes me a candidate for sainthood in some people's minds, and when you combine the two, look out - there is this certain look folks get in their eyes, a mixture of "awwwww" and some sort of ... combination of whatever they think those things mean, whatever beliefs/stereotypes/experience they have with each one. The notion that "Down's children are always so sweet" (please do not ever refer to my child as a "Down's child") is definitely the front-runner, but pastor's-wife is a strong contender.
People are funny. They're also generally very nice and sweet and wonderful, so I shouldn't poke fun, but it really does happen almost every single time. You could try it too – it doesn’t have to be true, you just have to say it.
(Yes, it’s the little things. I need some way to amuse myself)
Tuesday, February 28, 2012
A very humbling reminder that all this prenatal testing / pregnancy termination stuff is complex, a difficult (and private/individual) decision, and heartbreaking:
http://www.slate.com/articles/double_x/doublex/2012/02/rick_santorum_and_prenatal_testing_i_would_have_saved_my_son_from_his_suffering_.html
In re-reading the Rutabaga entry, I'm concerned that I may have come across as not only callous myself (to anyone who has faced this decision), but that I also portrayed the decision to terminate a pregnancy after a prenatal diagnosis of Down syndrome, as one that is made callously and easily by parents who are really shallow and flippantly decide they can't handle a child with special health & developmental needs. I hope I made it clear in my two disclaimers that's not the way I feel, but ...
http://www.slate.com/articles/double_x/doublex/2012/02/rick_santorum_and_prenatal_testing_i_would_have_saved_my_son_from_his_suffering_.html
In re-reading the Rutabaga entry, I'm concerned that I may have come across as not only callous myself (to anyone who has faced this decision), but that I also portrayed the decision to terminate a pregnancy after a prenatal diagnosis of Down syndrome, as one that is made callously and easily by parents who are really shallow and flippantly decide they can't handle a child with special health & developmental needs. I hope I made it clear in my two disclaimers that's not the way I feel, but ...
Monday, February 27, 2012
On Guard
Today I drove to Greenville SC for a continuing ed training. How long does it take to get to Greenville from where we live? Exactly enough time to listen to the Green Day CD American Idiot two and a half times. The first half includes the song "Dearly Beloved," which I'm sure I have noticed before contains the line, "oh therapy/can you please fill the void?/am I retarded or am I just overjoyed?" so I got to hear that one 3 times. Perhaps I have always sort of actively ignored it, but I'm a bit touchy after the church thing yesterday. Eh. Yuck.
Oh, and: http://www.r-word.org/
Giving the band the benefit of the doubt, I tried reviewing all the lyrics to see if there is possibly an appropriate context. But it's a concept album, so who has time to try to sort that out, and since when is a Green Day song about anything, really?
Why did I force myself to listen to it 3 times? The drive was stressful (lots of turns and road-numbers-not-names) and I have a really silly CD player in my car that requires this extra step to take anything out, and I was already managing a cup of coffee in addition to Mapquest directions, and it was dark (6:00 a.m.) Etc., etc.
So I listened to Beck's Guero on the way back. I think that one's clear; even when he slips into Spanish I happen to know the Spanish word is retraso, FYI.
Oh, and: http://www.r-word.org/
Giving the band the benefit of the doubt, I tried reviewing all the lyrics to see if there is possibly an appropriate context. But it's a concept album, so who has time to try to sort that out, and since when is a Green Day song about anything, really?
Why did I force myself to listen to it 3 times? The drive was stressful (lots of turns and road-numbers-not-names) and I have a really silly CD player in my car that requires this extra step to take anything out, and I was already managing a cup of coffee in addition to Mapquest directions, and it was dark (6:00 a.m.) Etc., etc.
So I listened to Beck's Guero on the way back. I think that one's clear; even when he slips into Spanish I happen to know the Spanish word is retraso, FYI.
Sunday, February 26, 2012
Eh.
Had to call out a kid at church today for saying something was "so retarded." A somewhat young kid. Sigh. I'm still not quite sure of the best way to handle it, and sometimes wonder if it's of any use whatsoever. But there is a definite funny feeling in the stomach area when I hear it. Yuck.
Saturday, February 25, 2012
A quick response, which has left Joanna feeling sheepish
We received a letter today from Dr. Kirshbom, David's heart surgeon, in response to the letter we recently sent him (see following post). I am impressed with the turnaround time, especially since it took me about a year to write mine. Perhaps he is an adherent to the "only touch paper once" rule; this is something to which I aspire but consistently fall short. And I'm guessing someone does his dictation, which might really speed up things for me too. Keep going ....
Saturday, February 11, 2012
Hey hey Dr. K (a letter to DM's heart surgeon)
Dear Dr. Kirshbom,
(This letter has been a long time coming, but if you have or have had small kids, you know how things can just slip away …)
You performed an AV Canal repair on our son, David Moses, on 8/12/2010. At the time of his surgery David was 4 ½ months old, and had already endured a 92-day NICU stay – he was born at 32 weeks’ gestation, weighing 2 lbs, 13 oz. David has Down syndrome and faced multiple other health challenges before his surgery.
We just wanted to let you know that David is doing fabulously. He is now 22 months old, and weighs about 23 lbs. He is not standing or walking independently yet, but will pull up to stand on anything that will hold still, and he is cruising along the couch proficiently. Medically, we are thankfully at a point where most issues are just regular-kid stuff – stomach viruses, pinkeye, etc. David received the Synagis/RSV shots last winter, and again this year. Medication-wise, he has Prilosec 2 x day, Xopenex and Pulmocort 2 x day in his nebulizer, Levothyroxine 1 x day, and a multivitamin – that’s it! A couple of months ago his nutritionist finally gave her blessing to take him off of formula, so now he does whole milk. He still eats some Stage 2 and 3 baby foods, but he mostly eats table food and is working on feeding himself with a spoon.
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