You all don't have to read this...I'm mostly venting out of frustration and hoping that if I put it all in writing like my dad always told me to do, my thoughts will organize and I'll come up with a cohesive plan of action from here. According the the geneticist, you don't need Braille or a magnifying glass to see that Katie has a weight issue.....DUH!!! Jenny got her eyes opened a bit when he looked right at her and said that Katie now weighs on the high side of what a 15-16 year old girl in similar health should weigh, 156.9, and he didn't pull any punches. He talked to all of us - including Katie. He was, of course, very careful to INCLUDE Katie in the conversation, not just talk around or about her. Once before when Katie was only 7, I told Jenny we needed to sit her down, tell her that she has a weight problem and that since the adults around her were primarily responsible for it over the years, it would be up to all of us to change it. "Oh, I can't do that - it would destroy her self esteem." I said, "Jen, either we can do it as the family who loves her unconditionally or the middle school kids will take care her self-esteem in short order."
Katie, of course, didn't hear that conversation, but she did hear the one today and she heard it loud and clear. First thing he did was bring in a blood sugar tester and have her take her own blood sugar. He wanted to see the number himself, of course, but he also wanted her to know what it was like to have to do it. She didn't want to do it, had to be persuaded, but finally she did it and hated it. He then reminded her that her dad has to do that several times a day plus give himself insulin injections, and he (the doctor) didn't want to see Katie have to do that too. He told her that losing weight was absolutely no guarantee that she'd avoid diabetes totally because with a strong family history (great grandparents, Grampa Ken, her dad and two aunts) she is more likely than many kids her age to develop it. But he said she stands a fighting chance if she did whatever she could to get healthy now so she has the best chance of living diabetes free for as long as possible, if not forever. I wasn't watching Katie - I was watching Jenny. THAT shook her up, although I'm not sure why when she's heard it before. Maybe it was actually seeing Katie have to force herself to test that did it. He has ordered some blood work for lipid and glucose baselines and we'll do that tomorrow when she's fasted and then send the results to him.
I don't know, we'll see where it goes from here. He gave her some really good alternatives to the oral calming that having something in her mouth gives her, but we've tried most of them at one point or another and they haven't seemed to make a lot of difference. They work very well with Kendra to calm her flapping, but Katie has gotten so used to both the oral sensation and the taste factor that it's going to be tough.
Here's the funny thing - Katie loves every single vegetable except peas. So giving her fruits and veggies as an alternative is just fine with her and always has been. She's loved cauliflower and broccoli, carrots, (all of them cooked or raw) and spinach and salads and such since she got teeth, so foods other kids might thumb their noses at she is used to and loves. But JENNY loves sweets - any sweets - and her idea of sharing time with Katie is to bake and eat cakes, cupcakes, brownies, cookies...whatever strikes her fancy at the time. It's not Katie who can't give those things up, it's her mom and dad. And Kenny, being a cook, loves to make all the stuff he shouldn't be eating, either. He absolutely HAS to have pasta, rice or potatoes with every meal, gravies, breads....my son and daughter-in-law are killing my granddaughter with kindness and I can't do a darn thing about it. And I've been trying to get through to them since Katie was 5 years old. It just doesn't sink in.
So when it was my turn alone with the geneticist I told him just that. I told him about us having Katie for most of the summer for our annual trip to South Dakota and while the kids were taking Kendra back and forth to Denver. We'd helped her find a very flexible plan approved just for kids, and between the foods and the increased exercise she lost almost 9 pounds with absolutely no complaints or issues. She had more energy, she was getting lots of sunshine and fresh air, and she was so excited at her weekly weigh-ins and with her online support group. She was cheering the other kids on and they were cheering for her. We figured we had her with us most of the time, and maybe if she and her folks saw the difference and how much she loved her plan, they'd stick with it. Yeah, well, that didn't last. Katie tried at first but it's a little tough when the cards were stacked against her and it wasn't long before they all gave up. She gets home from school, Mom has an "after school treat" for her, she sits down and does her homework, then she vegges out the rest of the day until dinner, always with something for dessert (they don't even eat until around 7) then she goes to bed. She's not even doing dance this year...first time since she was 3 years old. This bad diet and lack of moving is killing Kenny, it's not doing Jenny any good, it's gonna kill Katie, or at the very least turn this outgoing little girl who's worked so hard to get past the autism social issues back into a little recluse. And if they don't all learn to eat right, with her forced immobility Kendra will be next. The girls don't get that junk here - they never have. Kendra loves popcorn or fruit for her snacks, and she will sometimes get a cookie if I have some on hand. I told the doctor I felt like I was fighting a losing battle and I was walking a fine line between not hurting Katie's feelings and sending her in a downward spiral instead of helping her. And Jenny starts out well for about a week, then slips back into the sugary treats again.
I said I think Jenny blames herself for the girls' disabilities and is trying to overcompensate out of misplaced guilt. He totally agreed. He also said that Jenny hasn't matured mentally since she was inundated with one neuro med after another for her seizures, trying to find one or a combination that would stop her seizures, and that can happen with some people. If some meds are started during the teenage years with the physical and emotional upheaval of puberty, some people just get stuck there. Jenny's seizures also are the result of an issue in the cognitive part of her brain, we knew that. His previous testing of her revealed that Jenny is 43 years old going on 16. He hit that on the head!! She's giggly, flighty, and she has no sense of time. I don't mean that she's always late, I mean she can't remember whether something that happened was a week ago or a year ago. She tried telling the doctor that Kendra had pneumonia in September. I had to to get out my phone and show her the text messages to prove to her that it was late May of 2015. (Yes, I had those back that far because I text my sister so seldom there are never enough of them to remember to delete!) Like me, he's also very concerned about Kendra's future weight, especially with the wheelchair being so prominent in her life.
So I don't know what to do. With Jen there's no way to encourage and remind without nagging, and that's the last kind of mother-in-law I want to be. I don't want Katie to get the idea that her weight has a doggone thing to do with her amazing self, that her value is weighed in pounds, not in her. Kenny just gets mad and defensive. They really are good parents, don't misunderstand me. They've worked so hard and sacrificed so much, especially with Kendra's issues. I don't know that I could face all the trips, the medical issues, and the worry as well as they do. They are both patient, gentle and loving with the girls. It's just this eating thing...... My biggest fear - and this is on me, no one else - is that I'm not going to be around for too many more years, and if we don't get these habits changed, what happens to my girls?
Kendra stunned him. Her physical abilities far exceeded anything he'd imagined her doing, but then we are used to that reaction!
You should have seen his face when he told Jenny to put Kendra in the blue chair and Kendra heard him and got up there herself! Priceless! He said he just loves being wrong sometimes! He wants to run one more kind of genetic test, one they haven't done before, to look at her entire chromosome makeup. He said with the main focus the last 5 years being on the Spina Bifida and related complications, and her only being 3 the last time he saw her, he wants to check to rule any another abnormalities that may be impeding her language skills, maybe a defect in the genetic development of the language center of the brain. He said she's bright as a new penny (DUH, again!) so there's no reason, even with her developmental delays and Autism, that he can see for her lack of communication unless there's just a little something that's been missed in the Spina Bifida shuffle. He cautioned us that even if he found something, there probably isn't a thing they can do for her medically, but the finding could change the way we do her speech therapy. Even that is encouraging to know - because she KNOWS words. She is learning to read. We tell her once what something is and never have to tell her again because she remembers. She just doesn't communicate. I laughed so hard when Jenny told him about what the psychologists said about Kendra this spring when she "failed" their stupid tests. He said, Sometimes 'globally delayed' really means 'We have no clue and limited appointment time to get to know her, but don't we sound important?'"
So there you have it in a walnut tree, because a nutshell wouldn't hold it all. I still haven't come up with a plan, but I've made some sense of it anyway. Thanks for the shoulder.
Katie, of course, didn't hear that conversation, but she did hear the one today and she heard it loud and clear. First thing he did was bring in a blood sugar tester and have her take her own blood sugar. He wanted to see the number himself, of course, but he also wanted her to know what it was like to have to do it. She didn't want to do it, had to be persuaded, but finally she did it and hated it. He then reminded her that her dad has to do that several times a day plus give himself insulin injections, and he (the doctor) didn't want to see Katie have to do that too. He told her that losing weight was absolutely no guarantee that she'd avoid diabetes totally because with a strong family history (great grandparents, Grampa Ken, her dad and two aunts) she is more likely than many kids her age to develop it. But he said she stands a fighting chance if she did whatever she could to get healthy now so she has the best chance of living diabetes free for as long as possible, if not forever. I wasn't watching Katie - I was watching Jenny. THAT shook her up, although I'm not sure why when she's heard it before. Maybe it was actually seeing Katie have to force herself to test that did it. He has ordered some blood work for lipid and glucose baselines and we'll do that tomorrow when she's fasted and then send the results to him.
I don't know, we'll see where it goes from here. He gave her some really good alternatives to the oral calming that having something in her mouth gives her, but we've tried most of them at one point or another and they haven't seemed to make a lot of difference. They work very well with Kendra to calm her flapping, but Katie has gotten so used to both the oral sensation and the taste factor that it's going to be tough.
Here's the funny thing - Katie loves every single vegetable except peas. So giving her fruits and veggies as an alternative is just fine with her and always has been. She's loved cauliflower and broccoli, carrots, (all of them cooked or raw) and spinach and salads and such since she got teeth, so foods other kids might thumb their noses at she is used to and loves. But JENNY loves sweets - any sweets - and her idea of sharing time with Katie is to bake and eat cakes, cupcakes, brownies, cookies...whatever strikes her fancy at the time. It's not Katie who can't give those things up, it's her mom and dad. And Kenny, being a cook, loves to make all the stuff he shouldn't be eating, either. He absolutely HAS to have pasta, rice or potatoes with every meal, gravies, breads....my son and daughter-in-law are killing my granddaughter with kindness and I can't do a darn thing about it. And I've been trying to get through to them since Katie was 5 years old. It just doesn't sink in.
So when it was my turn alone with the geneticist I told him just that. I told him about us having Katie for most of the summer for our annual trip to South Dakota and while the kids were taking Kendra back and forth to Denver. We'd helped her find a very flexible plan approved just for kids, and between the foods and the increased exercise she lost almost 9 pounds with absolutely no complaints or issues. She had more energy, she was getting lots of sunshine and fresh air, and she was so excited at her weekly weigh-ins and with her online support group. She was cheering the other kids on and they were cheering for her. We figured we had her with us most of the time, and maybe if she and her folks saw the difference and how much she loved her plan, they'd stick with it. Yeah, well, that didn't last. Katie tried at first but it's a little tough when the cards were stacked against her and it wasn't long before they all gave up. She gets home from school, Mom has an "after school treat" for her, she sits down and does her homework, then she vegges out the rest of the day until dinner, always with something for dessert (they don't even eat until around 7) then she goes to bed. She's not even doing dance this year...first time since she was 3 years old. This bad diet and lack of moving is killing Kenny, it's not doing Jenny any good, it's gonna kill Katie, or at the very least turn this outgoing little girl who's worked so hard to get past the autism social issues back into a little recluse. And if they don't all learn to eat right, with her forced immobility Kendra will be next. The girls don't get that junk here - they never have. Kendra loves popcorn or fruit for her snacks, and she will sometimes get a cookie if I have some on hand. I told the doctor I felt like I was fighting a losing battle and I was walking a fine line between not hurting Katie's feelings and sending her in a downward spiral instead of helping her. And Jenny starts out well for about a week, then slips back into the sugary treats again.
I said I think Jenny blames herself for the girls' disabilities and is trying to overcompensate out of misplaced guilt. He totally agreed. He also said that Jenny hasn't matured mentally since she was inundated with one neuro med after another for her seizures, trying to find one or a combination that would stop her seizures, and that can happen with some people. If some meds are started during the teenage years with the physical and emotional upheaval of puberty, some people just get stuck there. Jenny's seizures also are the result of an issue in the cognitive part of her brain, we knew that. His previous testing of her revealed that Jenny is 43 years old going on 16. He hit that on the head!! She's giggly, flighty, and she has no sense of time. I don't mean that she's always late, I mean she can't remember whether something that happened was a week ago or a year ago. She tried telling the doctor that Kendra had pneumonia in September. I had to to get out my phone and show her the text messages to prove to her that it was late May of 2015. (Yes, I had those back that far because I text my sister so seldom there are never enough of them to remember to delete!) Like me, he's also very concerned about Kendra's future weight, especially with the wheelchair being so prominent in her life.
So I don't know what to do. With Jen there's no way to encourage and remind without nagging, and that's the last kind of mother-in-law I want to be. I don't want Katie to get the idea that her weight has a doggone thing to do with her amazing self, that her value is weighed in pounds, not in her. Kenny just gets mad and defensive. They really are good parents, don't misunderstand me. They've worked so hard and sacrificed so much, especially with Kendra's issues. I don't know that I could face all the trips, the medical issues, and the worry as well as they do. They are both patient, gentle and loving with the girls. It's just this eating thing...... My biggest fear - and this is on me, no one else - is that I'm not going to be around for too many more years, and if we don't get these habits changed, what happens to my girls?
Kendra stunned him. Her physical abilities far exceeded anything he'd imagined her doing, but then we are used to that reaction!
So there you have it in a walnut tree, because a nutshell wouldn't hold it all. I still haven't come up with a plan, but I've made some sense of it anyway. Thanks for the shoulder.
