Wednesday, January 12, 2011

Cleft Team Appt

Yesterday we met with Jesse's cleft team for his 9 month evaluation. They measured his length, head and weight and he's following the growth chart nicely, still in the 75-95 percentile. 22.5lbs, 29 1/2 inches long and 19 inch head. First we met with the Speech Pathologist. He asked us a bunch of questions about the sounds he makes, he has not progressed since his 6 month eval, ehich I knew. She tested his hearing, and that's not what's causing his delay, so she said he should start speech therapy. I was expecting this. He's not making D, B, G, P or T sounds. And we have been working with him at home to make these sounds and it's just not happening. I was given a therapy "prescription" for one day a week and information about Early Intervention. Back to that in a bit.
We then met with our plastic surgeon. Last time we met with her she said he would do his palate surgery in February (before his first birthday) or right after in April. Since Paul might go back to light duty soon, we requested February for his surgery and she said that wouldn't be a problem since he's strong and healthy. So now I am waiting for her office to call me with that date. I am guessing it will be February 23rd. That's 5 weeks before his birthday. He should be our of his arm restraints and be able to eat cake by then.
After we left her office, we went to the ENT's office. Might I mentione we HATE going to that office. We like the doctor, but our experiences there are horrible. We have been there 3 times total. The first time, when Jesse was only a few weeks old we waited an hour in a waiting room filled with sick people. Then they moved us to an exam room where we continued to wait. Jesse needed a diaper and there was no where to change him except the floor.... and I still had stiches in my vag. I even asked a nurse if they had somewhere I could change his diaper, she said no and she reclined the exam chair and I did it there, not exactly safe. The second time, Paul and Jesse went without me. He waited an hour that time as well. Yesterday's appointment we were late because we were delayed at the cleft team's office. Mind you, the cleft team set this appointment up for 9:45, they had 9:30 on their schedule and it was 9:50 when we got there. We arrive and the woman at the desk looks at her watch and tells us we are late, that she will have to ask if we can still be seen. I tell her they ran late at the cleft teams office, but she didn't seem to care or even know what I was talking about. Oh yes, and there was a snow storm so I had to drive like 15mph the whole way there. Jesse needs a nap after waiting another hour and starts crying, there's nothing more I can do for him. He has a clean diaper (which I had to change on the floor), he had a bottle and the toys I brought for him were no longer entertaining. The doc comes in at 11am, an hour and 10 minutes after we got there. He checks out his ears, says he's all good, mentions that he will adjust or replace his tubes when we get the palate surgery and sends us on our way within 3 minutes. We left the house at 7:30am and didn't get back until 11:30am. Ugh. Long day, for all of us.
Back to the speech therapy thing. Today I call Child & Family Connections as instructed. They told me because my child is only 9 months old, not speaking words and hasn't had his palate surgery yet that they can't do anything for him. She said she'd try and see if we can get an evaluation (which is what he had yesterday), but it's unlikely due to those circumstances. Ok, so I asked what hours they do evaluations and she told me school hours 9-3. I asked if they do evenings or weekends because I am a working parent, she said no, I would have to take time off work for the eval. I ask if the hours are the same for therapy, she said yes. I said, since I am a working parent I will have to take time off work one day a week for speech therapy, she told me I can have my daycare provider do it if it's within the county (which she's not) or I can get a private speech therapist and pay out of pocket. So I am supposed to let my child get behind in speech because I can't afford to pay for it and I will lose my job if I take time off every week for it? I can't be the only working parent in the state who's child needs speech therapy! They are supposed to call me back tomorrow.

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