Round 2 of the IEP battle clearly goes to us. The OT and PT both conceded rather quickly that he does indeed need services through the summer. We were successful enough to get 2 sessions of OT per week and 2 sessions of PT per month. For those of you unfamiliar with the IEP process, this is a big victory, even if it wasn't the struggle we thought it would be.
We are elated, needless to say. We've spent much time worrying over the eventual outcome of this particular IEP. It is now something I can officially cross of my list, at least for now.
Additionally the pulmonary appointment also went really well. We are going to attempt to take Jack off his inhaled steroids sometime mid-May. (When flu and virus season is well past us.) With any luck he'll do fine. His doctor was cautious and said that the following fall/winter she would put him back on the meds just to make sure he does well. And then again in the late spring we'll take him off again, but this time for good! Also, we are going to work with his swallow specialist to create a regimen to safely teach him to drink thin liquids with the hopes that his days of aspirating liquids are over. Saying good bye to Think-it will be a joy!
Wednesday, March 25, 2009
Tuesday, March 24, 2009
A long overdue update....
So we're set for the second part of Jack's IEP meeting tomorrow. The first part didn't go as well as we expected, thus the need for a second meeting. In a nutshell, the OT and PT didn't feel Jack needs those services through the ESY (extended school year for those of you unfamiliar with the IEP lingo). And we completely disagree, so we are fighting it.
On another forefront we are scheduled to see pulmonary tomorrow in the hopes that the generous Dr. Sterni will agree to allow us to experiment with Jack's thickened liquids. Meaning, we are hoping we can start thinning out his liquids and using less Thick-it. Not to mention weaning him off of some of his meds. The two daily doses of inhaled steroids being the first on that list to go if possible.
In the meanwhile I am happy to report that Jack's vocabulary has exploded. In the last four weeks we have heard nearly 20 words from him. Most are very difficult to comprehend and wouldn't be clear to the average person, but we know what he is saying, and more importantly HE knows what he is saying. He's trying very hard to verbalize more, with lots of encouragement from us. He now knows colors, numbers up to 5, and some shapes. And while playing trains the other day he put two words together to say "My house". This was a huge accomplishment.
Although he is making significant progress in his speech, there is still significant concern that he won't be ready for a "normal" kindergarten class when the time arrives. So we are adding yet more therapy to the regimen, with at least one more speech therapy session per week, thus bringing his therapy schedule up to seven sessions a week. That's a lot of therapy for a little kid. We're keeping our fingers crossed he'll tolerate it.
On another forefront we are scheduled to see pulmonary tomorrow in the hopes that the generous Dr. Sterni will agree to allow us to experiment with Jack's thickened liquids. Meaning, we are hoping we can start thinning out his liquids and using less Thick-it. Not to mention weaning him off of some of his meds. The two daily doses of inhaled steroids being the first on that list to go if possible.
In the meanwhile I am happy to report that Jack's vocabulary has exploded. In the last four weeks we have heard nearly 20 words from him. Most are very difficult to comprehend and wouldn't be clear to the average person, but we know what he is saying, and more importantly HE knows what he is saying. He's trying very hard to verbalize more, with lots of encouragement from us. He now knows colors, numbers up to 5, and some shapes. And while playing trains the other day he put two words together to say "My house". This was a huge accomplishment.
Although he is making significant progress in his speech, there is still significant concern that he won't be ready for a "normal" kindergarten class when the time arrives. So we are adding yet more therapy to the regimen, with at least one more speech therapy session per week, thus bringing his therapy schedule up to seven sessions a week. That's a lot of therapy for a little kid. We're keeping our fingers crossed he'll tolerate it.
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