Next week Carver will see a pediatric gastroenterologist at Children's Hospital to get to the bottom of his regurgitation. He's been "spitting up" continually since he was an infant. It was curdly milk for a while, lately it's been more acidic. I'll spare you too many details, but his chin is raw from the drool and occasionally has just terrible breath. He has also been addicted to milk/cheese/yogurt his whole life - which I think is his way to soothe his stomach. Doctors have REPEATEDLY blown me off - many different doctors. Last time she assured me that reflux would hurt, that the main symptom is stomach upset. Well, Carver's not going to be able to communicate that to me even if he realized that his stomach hurt - and I'm not sure he'd know. So I finally decided that as his mother, it's time to refer myself to a specialist. Of course, I called and made that oh-so-helpful pediatrician do the paperwork. I've talked to friends in the medical field and got some invaluable tips about other possibilities, procedures and ideas. I'm determined to see this through. If it means I break down and cry to the GI doctor next week, I'm not leaving without a plan.
It's not easy to work through referrals at this hospital, it's intimidating to go there without a full knowledge of the specialty, but I've done my research and I'm taking a list of symptoms and observations of Carver. The last mediocre doctor gave me a prescription (generic Zantac) to try and it's possibly helped the acidity of the regurgitation, but not the frequency. And I still don't feel comfortable blindly medicating what could be a more physical problem. I'll keep you posted.
I kick myself for not pushing the issue sooner, but I think I had my hands full with the rest of the sensory issues and now I've reached a plateau where I can tackle another set of problems. It reminds me of what I learned the first time around. When you know as a mother that something is wrong, you don't give up until you get the help your child needs. No good doctor should dismiss this motherly intuition, but so many do!! I just don't get that. Don't ever back down when you think something is wrong -with your child or yourself. It's worth pushing for answers!
Showing posts with label eating. Show all posts
Showing posts with label eating. Show all posts
Thursday, June 4, 2009
Thursday, April 16, 2009
Things I don't want to forget
Carver gave me a dandelion yesterday on the way home from the bus stop. I can't be sure it's the first time, but I think so. Very sweet.
He played outside yesterday while I weeded and got all friendly with worms and caterpillars. He wriggled a worm back and forth between his thumb and forefinger until it became 2 worms. :) He kept saying, "friend - worm!"
On the way to the bus stop today, a wasp landed on his arm. I looked down in the stroller and he was saying, "awww" to his new friend like he does for hugging babies and stuffed animals. I flicked it off and smashed it. No more wasps for friends, please.
We had jello at lunch yesterday in little plastic cups because he watched me make it the day before and saw Lydia take one in her lunch to school. He was SO excited. Sat right up there, asked for a straw and tried to drink it! :)
I keep forgetting to blog about the lack of SPIO. After months of hoping and trying, I decided it wasn't helping and it wasn't worth the hassle of keeping it clean. I still completely support SPIO and encourage it for others. I've heard enough amazing success stories first hand to believe it works for a lot of kids. It just didn't help Carver.
He's telling me lots about school lately. "Dance. Circle Time. Freeze. Stop." Or "Brown table. Snack. Cereal." I love it. I'm hearing more and more verbs, too. "eat snack" or "play sand" or "watch Kipper." Hurray!
He played outside yesterday while I weeded and got all friendly with worms and caterpillars. He wriggled a worm back and forth between his thumb and forefinger until it became 2 worms. :) He kept saying, "friend - worm!"
On the way to the bus stop today, a wasp landed on his arm. I looked down in the stroller and he was saying, "awww" to his new friend like he does for hugging babies and stuffed animals. I flicked it off and smashed it. No more wasps for friends, please.
We had jello at lunch yesterday in little plastic cups because he watched me make it the day before and saw Lydia take one in her lunch to school. He was SO excited. Sat right up there, asked for a straw and tried to drink it! :)
I keep forgetting to blog about the lack of SPIO. After months of hoping and trying, I decided it wasn't helping and it wasn't worth the hassle of keeping it clean. I still completely support SPIO and encourage it for others. I've heard enough amazing success stories first hand to believe it works for a lot of kids. It just didn't help Carver.
He's telling me lots about school lately. "Dance. Circle Time. Freeze. Stop." Or "Brown table. Snack. Cereal." I love it. I'm hearing more and more verbs, too. "eat snack" or "play sand" or "watch Kipper." Hurray!
Sunday, December 14, 2008
Recent Successes
Here's a few things I don't want to forget:
Carver learned to JUMP a couple weeks ago! HURRAY for him! It's so cute, a full-body wind-up for a very little bit of air cleared by those little boy toes. We cheered and cheered!
Carver ate his yogurt without a drip TWO days in a row after preschool last week. He used his spoon to wipe his chin, too. I really believe it comes from a fabulous sensory diet at preschool. He comes home on top of his game. It's amazing to see.
Our dear friend, Sue, dropped by with a surprise for Carver. A brand new Sonicare toothbrush! She happened to have a stash at her house and wanted to share with us after reading his blog. Not just Carver, though - even mom and dad got one! I was so touched by her thoughtfulness and the generosity of her gift. WOW! Although it's going to take me some practice to get used to that kind of vibration in my mouth. I can't believe Carver loves it so much! It's pretty intense for typical mouths like mine. :) He LOVES it, though. In his mouth, on his cheeks, lips, neck, even his armpit once. (Yum!) Thank you, thank you, Sue!!
Carver learned to JUMP a couple weeks ago! HURRAY for him! It's so cute, a full-body wind-up for a very little bit of air cleared by those little boy toes. We cheered and cheered!
Carver ate his yogurt without a drip TWO days in a row after preschool last week. He used his spoon to wipe his chin, too. I really believe it comes from a fabulous sensory diet at preschool. He comes home on top of his game. It's amazing to see.
Our dear friend, Sue, dropped by with a surprise for Carver. A brand new Sonicare toothbrush! She happened to have a stash at her house and wanted to share with us after reading his blog. Not just Carver, though - even mom and dad got one! I was so touched by her thoughtfulness and the generosity of her gift. WOW! Although it's going to take me some practice to get used to that kind of vibration in my mouth. I can't believe Carver loves it so much! It's pretty intense for typical mouths like mine. :) He LOVES it, though. In his mouth, on his cheeks, lips, neck, even his armpit once. (Yum!) Thank you, thank you, Sue!!
Wednesday, August 27, 2008
motor planning and more
Speech was yesterday. She brought the evaluation results -
Auditory comprehension: standard deviation -1.67
Expresssive communication: SD -2.07
Total Language: SD -2.07
Qualification for therapy is determined by standard deviation, beyond -2 is considered enough in one category. Less than that and you'd need to qualify in more than one area. He might qualify in other areas, as well, but this number alone is enough to guarantee preschool. Reading her report was sobering. It was a good reminder of how far we have to go, of how much more I could do with him. I'm grateful that school is starting soon and that our routines are ready to be revamped. I'm going to try to schedule in more Carver play time.
I had him eat yogurt when Christina was here (something she'd wanted to see in the past) and it was really good. I use a dry washcloth to wipe his face and it helps him feel the drips and mess. He is getting better at feeling that, it's just hard for me to always be attentive to him when he eats. Christina also noted that carrying him to the sink to rinse him off afterwards is not only going to kill my back, but misses the opportunity to practice Carver's self-cleaning skills. Giving him the washcloth to wipe his own hands and face extends the snack (and therefore attention span) and also gives him a sense of confidence and an important skill set. Along those lines, having him climb into his booster seat is important. Of course, these things are difficult to take the time for in a busy house. But efficiency needs to take a back seat right now!
We did play-dough, his favorite thing. She had him open the lid and said... "OH"... and he finished with "-pen." Or kind of. Really exaggerate the OH. I can do that!
She suggested sports wrist bands to wipe drool again. I'm going to try to pick them up next time I'm at the store. At least I can have a towel handy. He's always stealing my kitchen ones anyway.
Poking 1 finger in playdough to isolate those muscles. Really let him do things himself. I need so much patience!! :)
She asked about the little milk curdle he had in his mouth, the last hold-out from years of spitting up. I could tell she was surprised and curious at what caused it. I'll bring it up AGAIN at his well check. No doctor has ever expressed interest or concern about it, no matter how many times I bring it up. It's better than it used to be. Now it stays in his mouth at least.
I asked about his inability to communicate awareness of the past. She said it was all connected to his poor motor planning skills. 2 step play builds cognitive awareness of sequencing, knowing what comes before and after. Interesting to consider how interconnected our senses are and a specific example of how play is work for babies and toddlers. Most babies learn these things naturally, without extra effort (Grace, for example!) but Carver needs to be taught each skill separately and then practice. Talk about exhausting for him and for us! He is doing so much better at understanding "now" and "later" - I can see how we're working towards remembering the past. Also, she suggested family photo albums of vacations in the past, etc... Good reason to print another shutterfly album!! :)
So I have a lot to work on. And I shouldn't just be blogging about it! Back to work!
Auditory comprehension: standard deviation -1.67
Expresssive communication: SD -2.07
Total Language: SD -2.07
Qualification for therapy is determined by standard deviation, beyond -2 is considered enough in one category. Less than that and you'd need to qualify in more than one area. He might qualify in other areas, as well, but this number alone is enough to guarantee preschool. Reading her report was sobering. It was a good reminder of how far we have to go, of how much more I could do with him. I'm grateful that school is starting soon and that our routines are ready to be revamped. I'm going to try to schedule in more Carver play time.
I had him eat yogurt when Christina was here (something she'd wanted to see in the past) and it was really good. I use a dry washcloth to wipe his face and it helps him feel the drips and mess. He is getting better at feeling that, it's just hard for me to always be attentive to him when he eats. Christina also noted that carrying him to the sink to rinse him off afterwards is not only going to kill my back, but misses the opportunity to practice Carver's self-cleaning skills. Giving him the washcloth to wipe his own hands and face extends the snack (and therefore attention span) and also gives him a sense of confidence and an important skill set. Along those lines, having him climb into his booster seat is important. Of course, these things are difficult to take the time for in a busy house. But efficiency needs to take a back seat right now!
We did play-dough, his favorite thing. She had him open the lid and said... "OH"... and he finished with "-pen." Or kind of. Really exaggerate the OH. I can do that!
She suggested sports wrist bands to wipe drool again. I'm going to try to pick them up next time I'm at the store. At least I can have a towel handy. He's always stealing my kitchen ones anyway.
Poking 1 finger in playdough to isolate those muscles. Really let him do things himself. I need so much patience!! :)
She asked about the little milk curdle he had in his mouth, the last hold-out from years of spitting up. I could tell she was surprised and curious at what caused it. I'll bring it up AGAIN at his well check. No doctor has ever expressed interest or concern about it, no matter how many times I bring it up. It's better than it used to be. Now it stays in his mouth at least.
I asked about his inability to communicate awareness of the past. She said it was all connected to his poor motor planning skills. 2 step play builds cognitive awareness of sequencing, knowing what comes before and after. Interesting to consider how interconnected our senses are and a specific example of how play is work for babies and toddlers. Most babies learn these things naturally, without extra effort (Grace, for example!) but Carver needs to be taught each skill separately and then practice. Talk about exhausting for him and for us! He is doing so much better at understanding "now" and "later" - I can see how we're working towards remembering the past. Also, she suggested family photo albums of vacations in the past, etc... Good reason to print another shutterfly album!! :)
So I have a lot to work on. And I shouldn't just be blogging about it! Back to work!
Monday, August 25, 2008
the flip side
I haven't really done more than speech therapy reports here. Those are good times, where I feel direction and hope for Carver's improving communication. There are many, many other times that things are just HARD. Without intending to complain, here's the flip side.
Carver always needs something in his mouth - pacifier, food, gum, sippy cup. It's an exhausting balance to try and fill that very real need with age appropriate behavior while maintaining a responsible calorie intake!
He doesn't play by himself. He can keep himself busy occasionally, but very rarely is he doing something I approve of. It is difficult to fold laundry, clean bathrooms, make dinner because he wants my constant, undivided attention. I know that some of that must be my own doing, giving in to his demands too often. But he lacks skills to do imaginative play on his own, patience to do fine motor projects and self control enough to stay out of trouble. I'm not sure how to manage this one.
He is very messy. He wants to eat all the time, as I've already said. So I am constantly battling over food. Once he eats, he routinely smears his yogurt on the table, dumps his cup of milk, dips and tears, throws, etc... It's frustrating to say the least. By the time I've cleaned up snack #1, he's grazing for more milk, gum or snack #2.
Today I tried to do some cleaning - getting to things that never get their turn around here. I managed to do more than usual, but had to turn on movies and in the end, I'm frustrated because it was such a battle to keep him off the wet floor, out of the piles I was sorting, etc...
It has not been an easy day. But we've had worse. Sometimes I feel like it is very hard to be Carver's mom. But he's so sweet taking me by the hand to invite me to play with him. I know that doesn't last! He's very into Mommy right now, which is fun and very tiring. It makes me grateful to have preschool to look forward to. He needs the attention and therapy there as much as I need the break around here!
Carver always needs something in his mouth - pacifier, food, gum, sippy cup. It's an exhausting balance to try and fill that very real need with age appropriate behavior while maintaining a responsible calorie intake!
He doesn't play by himself. He can keep himself busy occasionally, but very rarely is he doing something I approve of. It is difficult to fold laundry, clean bathrooms, make dinner because he wants my constant, undivided attention. I know that some of that must be my own doing, giving in to his demands too often. But he lacks skills to do imaginative play on his own, patience to do fine motor projects and self control enough to stay out of trouble. I'm not sure how to manage this one.
He is very messy. He wants to eat all the time, as I've already said. So I am constantly battling over food. Once he eats, he routinely smears his yogurt on the table, dumps his cup of milk, dips and tears, throws, etc... It's frustrating to say the least. By the time I've cleaned up snack #1, he's grazing for more milk, gum or snack #2.
Today I tried to do some cleaning - getting to things that never get their turn around here. I managed to do more than usual, but had to turn on movies and in the end, I'm frustrated because it was such a battle to keep him off the wet floor, out of the piles I was sorting, etc...
It has not been an easy day. But we've had worse. Sometimes I feel like it is very hard to be Carver's mom. But he's so sweet taking me by the hand to invite me to play with him. I know that doesn't last! He's very into Mommy right now, which is fun and very tiring. It makes me grateful to have preschool to look forward to. He needs the attention and therapy there as much as I need the break around here!
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