Tuesday, May 17, 2011

3 Months Post-Op

We had an appointment this morning with our cleft team. What seemed to be just another routine visit ended up to be anything but routine. A month ago Jesse was evaluated by Early Intervention. I thought it went great, they told us Jesse is not far behind and he's doing quite well for a child who's undergone multiple surgeries with his mouth. They said he's about 10-15% behind, but that's normal for a child who's had palate surgery.

Today Jesse was seen by the Speech Pathologist from our cleft team. She's the one that wanted Jesse to get evaluated by EI. We gave her the reports from EI last week which state they do not recommend speech therapy for Jesse. She did some evaluating today and she disagrees. She thinks Jesse is behind and does need therapy. He's not making sounds that use the front of his mouth. I am not arguing with this. And she makes a good point, the longer he goes untreated, the harder it will be to treat.

I agree with this evaluation. The sounds she thinks he should be making he's not. She wants him to make sounds that use the front of his mouth and he's not doing that, he's making sounds with the back of his mouth. It's not that I think the EI evaluation is wrong, I just think it's different and coming from a different perspective. EI evaluates based on developmental criteria, where the cleft team pathologist evaluates on a medical level. The cleft team pathologist also has more experience with children who have speech issues doe to clefts.

It's just so frustrating that we get this good evaluation then with the blink of an eye it's taken away. But it's been taken away because of his cleft (a physical problem), not because of a developmental problem, which I am thankful for.

Aside from this whole speech drama, we did otherwise have a very good appointment. Our plastic surgeon is happy with his healing and commented on how he's a very happy little boy with a good disposition.

It was also time to meet with the ENT so he could make sure Jesse's ear tubes are still clear and his hearing is ok.  This doctor is also part of the cleft team but at a different office. What a disaster this was! There's always an issue when we have an appointment there. It's not the doctor, he's great, but the office staff and how they run things is just obnoxious. I needed to get back to work, so I sent Paul and Jesse over there on their own. Paul and Jesse arrived shortly after 9am (immediately after our cleft team appointment at the hospital). They waited 45 minutes to be seen. And this is in a waiting room that is not child friendly. There's a play section for children, but there's also many things in the waiting area that children should not play with. One of these things is potted plants. What does a small child want to do with potted plants? They like to grab handfuls of dirt and pull off leaves to put in their mouths. A lot of indoor potted plants are poisonous if consumed. Great idea to sacrifice the safety of children to make your waiting room more aesthetic.

So after a long wait Jesse was seen by the ENT doctor. The tubes look good, no blockage, no fluid. Then back to the waiting room for the hearing test for another hour! By this time, Jesse needs a diaper and something to eat. This office has no place to change a diaper without completely leaving the office and there are signs posted everywhere "no food or drink allowed". So now my child needs to be restrained so he doesn't eat the plants or throw dirt anywhere, he has a wet diaper, he's hungry and it's his nap time. By the time he went for the hearing test he was quite aunery. They had to restart the test 4 times. This is rediculous. If your office cannot be child friendly.... then don't see children. I complained to our cleft team coordinator about this, we'll see if anything changes there.

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