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November 15, 2011
Today was a BUSY day! I was on the phone with Dr. Varshney's (Matthew's allergist) office twice, Dr. Gibson's (the metabolic disorders specialist) once, Dr. Pandya (Matthew's pediatrician) three times and her nurse once, OT Connection (a private occupational therapy office) three times, and we had Matthew's Early Childhood Intervention (ECI) evaluation today as well.
I'll tackle ECI first. It's a state run program to make sure that kids who have developmental delays overcome them by the time they reach elementary school. Judy, with ECI, came out to evaluate Matthew today. She was here for about an hour. That's one of the nice things about ECI - they actually come to your home :) Before we even started, Abby climbed on a toddler chair we have and Judy said "Abby, we don't want to teach Matthew that, he might hurt himself." I just laughed, and then told her "Actually, Abby learned that from Matthew!" Needless to say, Matthew rocked his evaluation - no developmental delays at all! They look at five areas to assess if your child has any delays...things like verbal skills, fine motor, gross motor, etc. Matthew is doing great, he just doesn't eat well. Unfortunately, eating isn't one of the areas they assess...so we don't qualify. He would have qualified for occupational therapy (OT) through ECI this past summer, but the rules changed in September - now they can't help kids with eating issues unless they have significant developmental delays in one of those five areas. We're totally fine with not qualifying...it felt weird using a state program anyways because there are lots of people WAY less fortunate than we are who need these services. ECI costs a LOT less than private OT, which is why we decided to go that route...we wouldn't have taken up their time if we had known about the rule change. Judy was so apologetic about Matthew not qualifying...I told her "What parent would be upset to hear that their child is hitting all of their developmental milestones? Don't worry about it, we'll just go to a private OT, it's not a problem." She was still visibly upset that she couldn't offer us any help - her hands were even shaking when she handed me paperwork, poor thing!
So, now Matthew is scheduled for an OT assessment at OT Connection on Thursday (they had a cancellation, or it would have been mid-December). They asked me to bring foods he likes and foods he doesn't like. I said "Um, he only has five foods he can eat right now..." ;) But I will go armed with a spoon, some purees, some steamed and raw veggies, a mesh feeder, and his bib and we'll figure it out! Hopefully he won't need too much work - I did actually get him to open up for a spoon today, but his little tongue just thrust the food back out :( We're so excited about this appointment - once he learns to eat we can go from approximately 1 tsp of food a day to 4-5 "meals" of his safe foods a day! So cross your fingers and say a prayer.
Onto the doctors....Dr. Pandya has been working hard to make sure Matthew gets the tests he needs to pin down this metabolic acidosis thing. She spoke with Dr. Gibson, and since Matthew is a happy, healthy looking boy who is in no pain, he wants to go the diagnostic route before deciding to have us in for an appointment. So we're going in for another urine test tomorrow morning - this time to run an organic acids test. They also want to schedule and ultrasound on Matthew's kidneys, but I'm not sure how long it will take to get him in for that one. So right now, we'll do more tests until we find more clues as to why Matthew's bicarbonates are consistently low, and why that electrolyte calculation (his anion gap score) is consistently high.
Oh, and a happy, HAPPY note, Matthew's little friend Madison is back home in Austin after her heart surgery! We're SO happy for her and her family :)
I'll tackle ECI first. It's a state run program to make sure that kids who have developmental delays overcome them by the time they reach elementary school. Judy, with ECI, came out to evaluate Matthew today. She was here for about an hour. That's one of the nice things about ECI - they actually come to your home :) Before we even started, Abby climbed on a toddler chair we have and Judy said "Abby, we don't want to teach Matthew that, he might hurt himself." I just laughed, and then told her "Actually, Abby learned that from Matthew!" Needless to say, Matthew rocked his evaluation - no developmental delays at all! They look at five areas to assess if your child has any delays...things like verbal skills, fine motor, gross motor, etc. Matthew is doing great, he just doesn't eat well. Unfortunately, eating isn't one of the areas they assess...so we don't qualify. He would have qualified for occupational therapy (OT) through ECI this past summer, but the rules changed in September - now they can't help kids with eating issues unless they have significant developmental delays in one of those five areas. We're totally fine with not qualifying...it felt weird using a state program anyways because there are lots of people WAY less fortunate than we are who need these services. ECI costs a LOT less than private OT, which is why we decided to go that route...we wouldn't have taken up their time if we had known about the rule change. Judy was so apologetic about Matthew not qualifying...I told her "What parent would be upset to hear that their child is hitting all of their developmental milestones? Don't worry about it, we'll just go to a private OT, it's not a problem." She was still visibly upset that she couldn't offer us any help - her hands were even shaking when she handed me paperwork, poor thing!
So, now Matthew is scheduled for an OT assessment at OT Connection on Thursday (they had a cancellation, or it would have been mid-December). They asked me to bring foods he likes and foods he doesn't like. I said "Um, he only has five foods he can eat right now..." ;) But I will go armed with a spoon, some purees, some steamed and raw veggies, a mesh feeder, and his bib and we'll figure it out! Hopefully he won't need too much work - I did actually get him to open up for a spoon today, but his little tongue just thrust the food back out :( We're so excited about this appointment - once he learns to eat we can go from approximately 1 tsp of food a day to 4-5 "meals" of his safe foods a day! So cross your fingers and say a prayer.
Onto the doctors....Dr. Pandya has been working hard to make sure Matthew gets the tests he needs to pin down this metabolic acidosis thing. She spoke with Dr. Gibson, and since Matthew is a happy, healthy looking boy who is in no pain, he wants to go the diagnostic route before deciding to have us in for an appointment. So we're going in for another urine test tomorrow morning - this time to run an organic acids test. They also want to schedule and ultrasound on Matthew's kidneys, but I'm not sure how long it will take to get him in for that one. So right now, we'll do more tests until we find more clues as to why Matthew's bicarbonates are consistently low, and why that electrolyte calculation (his anion gap score) is consistently high.
Oh, and a happy, HAPPY note, Matthew's little friend Madison is back home in Austin after her heart surgery! We're SO happy for her and her family :)
