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November 22, 2011
I've been waiting on the test results to update - I'm sorry it's been a while since the last post!
First, we had our Occupational Therapy (OT) appointment last Thursday with Cindy at OT Connection. She was awesome with Matthew, and thinks that he definitely needs to learn to take a spoon from Mommy and Daddy, and that we can overcome his issues with a little work. He does have a tongue thrust issue - anytime food hits his tongue he thrusts it right back out. To overcome this we have to train him how to use his tongue. When you eat, your cheek and tongue work together to keep the food between your teeth by your molars. Matthew's doesn't do this yet, so we have some new tools that we are trying to use to teach him to chomp down with his gums, and while he does this he is figuring out how to use his tongue to keep these tools on top of his gums. The Nuk massage brush is great - we let him play with it on his own and we also cover it in his food and let him chew on it - he really likes it! We also have a chewy tube that he likes a lot - it's a little harder to get food to stick to, but he loves to put it in his mouth :) Cindy also loved that we're already using the Munchkin mesh food feeders with him, and wants us to continue using them. She also said that he definitely has control issues (who, OUR son???), and so part of the process is getting him used to us sticking things in his mouth without upsetting him - I think this will be the hardest part.
The first night after his OT appointment Matthew ate half a pear and half an avocado! But, since then we've kind of gone back to the way we were before...but hey, it's a start :) She complimented us on how laid back and relaxed we are, I guess she sees a lot of kids who won't let anything near them and fight their parents all the way...we were there for a very short time before we decided to back off, and she says we made the right decision. We could see that he was starting to have a negative association with everything having to do with food, and we knew that would be shooting ourselves in the foot, so that's when we said "to heck with the spoon" and he just ate CheeCha Puffs for a few weeks. After that we started the avocado trial because it was something he could feed himself, and I think backing off was the best idea we've had. We have a bit of a hard road ahead of us, but we're starting from a good place. Matthew likes food, and likes his high chair, and doesn't start fussing as soon as you put him in the dining room. Our OT appointments are going to be once a week, so hopefully we'll start to see some results soon!
Matthew's kidney ultrasound was Friday, and everything looked great! So it's not a kidney issue we're dealing with, it's something else. The organic acids urine test came back yesterday, and the results were abnormal. Of the 19 things it checked, six of the readings came back high. And we're not talking a "little" high...we're talking normal ranges of 0-4 coming back as 302, and 177....the lab interpretation note stated "severe ketonuria and mild dicarboxylic aciduria suggesting a catabolic state." So, from the best I can tell, the results show that Matthew isn't using carbohydrates for energy like he's supposed to, instead his body is using his fat...? So we're back to needing more tests...but at least Dr. Gibson (the metabolic disorders specialist) thinks he should see Matthew now. Unfortunately, he's REALLY booked, the first available appointment is March 7th! But, the nurse spoke to me and said Dr. Gibson put us at the top of the cancellation list, so the first appointment that opens up is ours. And he's going to speak with Dr. Cheng (Dr. Pandya is out of town for Thanksgiving) about what tests to order next. Dr. Cheng is great (he's the doctor that guessed Matthew had FPIES just based on a can of formula I was carrying!), so even though we're waiting to hear what's next, we know that Matthew is in good hands and have quite a few doctors determined to figure out what's going on with him :)
Hopefully Thanksgiving will give us a little time to enjoy our family and give thanks to God for everything and everyone we are blessed with...we have two wonderful kids that make us smile and laugh every single day - what more can we ask for? We definitely hope that it gives you time to enjoy your loved ones :) Happy Thanksgiving, everyone!
First, we had our Occupational Therapy (OT) appointment last Thursday with Cindy at OT Connection. She was awesome with Matthew, and thinks that he definitely needs to learn to take a spoon from Mommy and Daddy, and that we can overcome his issues with a little work. He does have a tongue thrust issue - anytime food hits his tongue he thrusts it right back out. To overcome this we have to train him how to use his tongue. When you eat, your cheek and tongue work together to keep the food between your teeth by your molars. Matthew's doesn't do this yet, so we have some new tools that we are trying to use to teach him to chomp down with his gums, and while he does this he is figuring out how to use his tongue to keep these tools on top of his gums. The Nuk massage brush is great - we let him play with it on his own and we also cover it in his food and let him chew on it - he really likes it! We also have a chewy tube that he likes a lot - it's a little harder to get food to stick to, but he loves to put it in his mouth :) Cindy also loved that we're already using the Munchkin mesh food feeders with him, and wants us to continue using them. She also said that he definitely has control issues (who, OUR son???), and so part of the process is getting him used to us sticking things in his mouth without upsetting him - I think this will be the hardest part.
The first night after his OT appointment Matthew ate half a pear and half an avocado! But, since then we've kind of gone back to the way we were before...but hey, it's a start :) She complimented us on how laid back and relaxed we are, I guess she sees a lot of kids who won't let anything near them and fight their parents all the way...we were there for a very short time before we decided to back off, and she says we made the right decision. We could see that he was starting to have a negative association with everything having to do with food, and we knew that would be shooting ourselves in the foot, so that's when we said "to heck with the spoon" and he just ate CheeCha Puffs for a few weeks. After that we started the avocado trial because it was something he could feed himself, and I think backing off was the best idea we've had. We have a bit of a hard road ahead of us, but we're starting from a good place. Matthew likes food, and likes his high chair, and doesn't start fussing as soon as you put him in the dining room. Our OT appointments are going to be once a week, so hopefully we'll start to see some results soon!
Matthew's kidney ultrasound was Friday, and everything looked great! So it's not a kidney issue we're dealing with, it's something else. The organic acids urine test came back yesterday, and the results were abnormal. Of the 19 things it checked, six of the readings came back high. And we're not talking a "little" high...we're talking normal ranges of 0-4 coming back as 302, and 177....the lab interpretation note stated "severe ketonuria and mild dicarboxylic aciduria suggesting a catabolic state." So, from the best I can tell, the results show that Matthew isn't using carbohydrates for energy like he's supposed to, instead his body is using his fat...? So we're back to needing more tests...but at least Dr. Gibson (the metabolic disorders specialist) thinks he should see Matthew now. Unfortunately, he's REALLY booked, the first available appointment is March 7th! But, the nurse spoke to me and said Dr. Gibson put us at the top of the cancellation list, so the first appointment that opens up is ours. And he's going to speak with Dr. Cheng (Dr. Pandya is out of town for Thanksgiving) about what tests to order next. Dr. Cheng is great (he's the doctor that guessed Matthew had FPIES just based on a can of formula I was carrying!), so even though we're waiting to hear what's next, we know that Matthew is in good hands and have quite a few doctors determined to figure out what's going on with him :)
Hopefully Thanksgiving will give us a little time to enjoy our family and give thanks to God for everything and everyone we are blessed with...we have two wonderful kids that make us smile and laugh every single day - what more can we ask for? We definitely hope that it gives you time to enjoy your loved ones :) Happy Thanksgiving, everyone!
