This is David’s new nickname, after our cardiology visit yesterday. David made it difficult or impossible for the various staff people to: take his temperature, check his blood pressure, do his echocardiogram, do his EKG, even listen to his heart with the stethoscope. It’s a pediatric practice so I suppose they’re used to this to an extent, but it was so bad they couldn’t quite get all the info they needed.
The reason we were there at all (next scheduled visit would be July) was also due to a lack of cooperation – with his supplemental nighttime oxygen, about a month ago. His pulling the cannula out was an off-and-on issue for most of the time he was on it continuously, but since we reduced it to nights only, he has not volunteered to mess with it at all for about six months. But then over a period of about two weeks, he pulled it out more and more frequently. And then one night, we reached our breaking point – David was crying non-stop and every second that Matt wasn’t holding his hands, he was pulling the tube out. Finally I declared we were done for the night, forget the O2 and we’ll call the doctor in the morning.
Tuesday, April 17, 2012
Whoo-hoo!
Simon has outgrown his peanut allergy! Hallelujah – last year he tested negative for cows’ milk, this year for peanuts, and those are the two food allergies we’ve dealt with since he was just a little over one year old. We knew it was likely he would outgrow the milk issue, but we were pleasantly surprised that it happened last year. And although the chance he’s outgrow the peanut problem was much lower, I believed he would, but again I didn’t think it’d be this soon.
What a relief! I don’t think I’d realized, until there was the chance it was over, how much time and mental energy we’ve had to put into this subject – checking and double-checking ingredients, making sure we always have his Epi-pen and little bottles of Xyxal or Benadryl, worrying about preschool and school and Bible School and visiting friends’ houses and everything. Educating everyone that even if you’d never think something would have peanuts in it, you still have to check. … and Simon’s never even really been that sensitive (he can sit next to a kid with a PB&J), and hasn’t ever had a life-threatening reaction – I can’t imagine what other parents go through.
And wow, Simon has just recently (last 6 months or so) demonstrated a better understanding of the issue, and has taken the lead on always asking us if he can eat a particular thing, such as at a church potluck. But I hope this experience has helped us all understand what it’s like for other kids, and maybe one day Simon will have a buddy with an allergy and will help watch out for him/her and help their other friends understand it’s not so unusual.
( I used to be one of those people who had zero understanding of, and zero patience/empathy with parents of kids with food allergies, especially peanuts, so I suppose I was destined to have a kid with one. Ah, yes, now I get it – you parents aren’t being deliberately obnoxious, it’s just that you’re following your doctor’s directions and are trying to keep your kid, you know, alive. )
What a relief! I don’t think I’d realized, until there was the chance it was over, how much time and mental energy we’ve had to put into this subject – checking and double-checking ingredients, making sure we always have his Epi-pen and little bottles of Xyxal or Benadryl, worrying about preschool and school and Bible School and visiting friends’ houses and everything. Educating everyone that even if you’d never think something would have peanuts in it, you still have to check. … and Simon’s never even really been that sensitive (he can sit next to a kid with a PB&J), and hasn’t ever had a life-threatening reaction – I can’t imagine what other parents go through.
And wow, Simon has just recently (last 6 months or so) demonstrated a better understanding of the issue, and has taken the lead on always asking us if he can eat a particular thing, such as at a church potluck. But I hope this experience has helped us all understand what it’s like for other kids, and maybe one day Simon will have a buddy with an allergy and will help watch out for him/her and help their other friends understand it’s not so unusual.
( I used to be one of those people who had zero understanding of, and zero patience/empathy with parents of kids with food allergies, especially peanuts, so I suppose I was destined to have a kid with one. Ah, yes, now I get it – you parents aren’t being deliberately obnoxious, it’s just that you’re following your doctor’s directions and are trying to keep your kid, you know, alive. )
Communication Breakdown
I have been a little quieter than usual over the past few weeks, partly because I received what I am choosing to call, some negative feedback about something I wrote, not on this site. There were several, ah, facets to this feedback, and my position is that on the more technical issues, the person kind of missed my main point. I would characterize the feedback as (overall) discouraging and unhelpful, but I think the thing that bothered me most was that the person (who is a healthcare professional) discussed the number of times she has heard similar comments, in a way that made me feel that I had wasted all the time I took to write what I wrote, because I really have nothing new to add to the current dialogue. The person did not say that directly, but Matt agreed that was not a crazy-Joanna interpretation.
Tuesday, April 10, 2012
My man the Sy-man
Our older son, Simon, is really something, to say the least. He is funny and smart and has this unbelievable vocabulary and when he’s not busy being the most obnoxious child on the planet, he is really cool.
I was showing him this: http://htwins.net/scale2/scale2.swf?bordercolor=white , which is really cool and demonstrates the relative sizes of various things in the universe (yes, “things” is the most accurate term I can come up with, there’s really everything). Two of the smaller ones are the DNA double helix and X and Y chromosomes, and I explained to Simon that David’s chromosomes are a little different from other people’s, and that’s why he has Down syndrome. I said chromosomes and genes make us who we are, that he and David have brown hair and blue eyes like Daddy because of their genes. His response: “Thanks, Dad” (for the eyes & hair).
Speaking of the world's most obnoxious child, he lived in our home for a couple of weeks there, last month. It started right around the time we had a little vacation, to visit family and go to the NC Zoo. It continued for about 2 weeks, and it was such a departure from his status quo that we were on the verge of taking him to the pediatrician to make sure there wasn't something physically wrong with him, that he couldn't describe to us, that was making him so miserable. Screaming, yelling, slapping two different girls in his preschool class (yes) ... it was really awful but we remained consistent and steady (as much as we could, it was really difficult) and fortunately it eventually passed. He's been great, most of the time, ever since.
** Note: the only thing we were able to figure out - at the pediatrician's suggestion, he gets 1/2 scoop of Miralax every morning, and during that 2-week period he didn't have any because the container didn't make it back from his last overnight to Grandma and Grandpa's. That had occurred to me as a possible explanation, but he had continued to have, ah, poops, so I dismissed that factor (and didn't rush out to buy more). But, once we decided to add it back in = return of the great child. Hmmm....
The other night we went to our first Down syndrome Parent Group in Asheville, hosted by the Family Support Network of WNC. There was only one other family at this meeting, probably because the weather was awful (rain, hail & fog). After introductions and during the pizza-eating, Simon randomly, loudly announced, “I don’t have Down syndrome.” Well, that’s correct, my love.
After we got home we asked Simon if he had fun playing with the other kid there, a 6 y.o. boy who does have Down syndrome, and we talked about how by the time David is 6, he’ll be walking around and talking just like that kid. And Simon added, “and he’ll be saying words and he won’t have Down syndrome any more.” Interesting – we’ve managed to convey that Down syndrome is the reason David’s not walking and talking as soon as other kids, so obviously once he learns those things, he must not have it any more? We explained that both David and the other kid will have it for the rest of their lives.
Tonight I made Hamburger Helper for the first time (ever, I think, certainly the first time for him) (my mom was pretty seriously into homemade-completely-from-scratch and I think I'm still making up for a childhood deficit of HH, Kraft Mac & Cheese, and Stove Top stuffing) and Simon's response was so positive, I had to send Matt a text in the middle of his meeting to let him know. While I was still dishing up David's, Simon was already saying how great it was. He said he wanted it "mixed up in [his] lunch tomorrow," ate two big helpings, and mentioned at least 4 more times how much he liked it. Really, I'm thrilled he loves something so easy, and I'd have done this a year ago if I knew how much it'd change his life. But it does make me question the amount of effort I put into most other cooking, often for a less-than-enthusiastic response. Sigh/Sy.
(Yes, following a serious discussion of Down syndrome with one about Hamburger Helper. Welcome to my life)
Oh, and I took him to see The Lorax in 3D this weekend; this was the first time I've taken him to the movie theater and it was just the 2 of us. He was scared by some of the louder parts and sat in my lap. Later I told him I was glad he'd stayed in there (when Matt took him to see Rango they had to leave after the first 10 minutes), and he said, "you protected me." :)
Love this guy. I've said that David (and any other future siblings) owe their existence to Simon, 'cause he was our first and we were so nervous but he was totally a breeze to care for as an infant & toddler.
(No reason to include this except, Simon loves red-eyed tree frogs)
I was showing him this: http://htwins.net/scale2/scale2.swf?bordercolor=white , which is really cool and demonstrates the relative sizes of various things in the universe (yes, “things” is the most accurate term I can come up with, there’s really everything). Two of the smaller ones are the DNA double helix and X and Y chromosomes, and I explained to Simon that David’s chromosomes are a little different from other people’s, and that’s why he has Down syndrome. I said chromosomes and genes make us who we are, that he and David have brown hair and blue eyes like Daddy because of their genes. His response: “Thanks, Dad” (for the eyes & hair).
Speaking of the world's most obnoxious child, he lived in our home for a couple of weeks there, last month. It started right around the time we had a little vacation, to visit family and go to the NC Zoo. It continued for about 2 weeks, and it was such a departure from his status quo that we were on the verge of taking him to the pediatrician to make sure there wasn't something physically wrong with him, that he couldn't describe to us, that was making him so miserable. Screaming, yelling, slapping two different girls in his preschool class (yes) ... it was really awful but we remained consistent and steady (as much as we could, it was really difficult) and fortunately it eventually passed. He's been great, most of the time, ever since.
** Note: the only thing we were able to figure out - at the pediatrician's suggestion, he gets 1/2 scoop of Miralax every morning, and during that 2-week period he didn't have any because the container didn't make it back from his last overnight to Grandma and Grandpa's. That had occurred to me as a possible explanation, but he had continued to have, ah, poops, so I dismissed that factor (and didn't rush out to buy more). But, once we decided to add it back in = return of the great child. Hmmm....
The other night we went to our first Down syndrome Parent Group in Asheville, hosted by the Family Support Network of WNC. There was only one other family at this meeting, probably because the weather was awful (rain, hail & fog). After introductions and during the pizza-eating, Simon randomly, loudly announced, “I don’t have Down syndrome.” Well, that’s correct, my love.
After we got home we asked Simon if he had fun playing with the other kid there, a 6 y.o. boy who does have Down syndrome, and we talked about how by the time David is 6, he’ll be walking around and talking just like that kid. And Simon added, “and he’ll be saying words and he won’t have Down syndrome any more.” Interesting – we’ve managed to convey that Down syndrome is the reason David’s not walking and talking as soon as other kids, so obviously once he learns those things, he must not have it any more? We explained that both David and the other kid will have it for the rest of their lives.
Tonight I made Hamburger Helper for the first time (ever, I think, certainly the first time for him) (my mom was pretty seriously into homemade-completely-from-scratch and I think I'm still making up for a childhood deficit of HH, Kraft Mac & Cheese, and Stove Top stuffing) and Simon's response was so positive, I had to send Matt a text in the middle of his meeting to let him know. While I was still dishing up David's, Simon was already saying how great it was. He said he wanted it "mixed up in [his] lunch tomorrow," ate two big helpings, and mentioned at least 4 more times how much he liked it. Really, I'm thrilled he loves something so easy, and I'd have done this a year ago if I knew how much it'd change his life. But it does make me question the amount of effort I put into most other cooking, often for a less-than-enthusiastic response. Sigh/Sy.
(Yes, following a serious discussion of Down syndrome with one about Hamburger Helper. Welcome to my life)
Oh, and I took him to see The Lorax in 3D this weekend; this was the first time I've taken him to the movie theater and it was just the 2 of us. He was scared by some of the louder parts and sat in my lap. Later I told him I was glad he'd stayed in there (when Matt took him to see Rango they had to leave after the first 10 minutes), and he said, "you protected me." :)
Love this guy. I've said that David (and any other future siblings) owe their existence to Simon, 'cause he was our first and we were so nervous but he was totally a breeze to care for as an infant & toddler.
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