On June 5, 2009, we went for a 2nd opinion to the Cleft Craniofacial Clinic. There we met Dr. Elmendorf. He was wonderful with Zachary and looked Zachary over from head to toe. I was very impressed. He went over every bit of Zachary's body. Now this clinic is for Cleft Craniofacial and he went over his wholeeeeee body. Explained things of what he had and things to watch over. I really liked him. I was referred to him by Zachary's Endocronologist at CHOC. They were med school friends.
He explained many things..... My biggest concerns were Zachary's speech and eating.
1st... Speech... I thought if Zachary's soft pallot and submucosal cleft were fixed it would enable Zachary to start talking. Well I guess that is not the case. Zachary's issues are complex which I kinda already knew but he explained it better to me. It is a complex situation with Zachary neurologically, structurally (deformity in his mouth) and low muscle tone. All of these things together are what stops him from speaking. I never thought neurologically there was an issue. I guess since his brain was normal this never crossed my mind. I guess with everything on my mind I didn't realize that the neurological was an issue with the speaking. SURPRISE!!
2nd.. Eating... It is all the same.... Alot of the same... The muscle tone has alot to do with this.. His jaw not being strong enough to do the rotary chew as they call it. Zachary's tongue being further back due to the retracted chin. Everything makes it harder for him. Everything is complex! So it is many things that have been stopping him from progressing with his speech and eating.
There are so many things to work on going forward.
Zachary will be turning 3 years old tomorrow and at the end of the month, the Pomona Unified School District will take over his therapy and schooling. They have offered to give him...
1 hour a day 5 days a week school in my home.
1 hour of PT
1 hour of Speech
1 hour of OT
My only issues are he has progressed so much with his current Speech Teacher that I don't believe their Speech Teacher will help him at all. I enquired to Dr. Elmendorf and his Speech Therapist about requesting more Speech Therapy hours than 1 hour a week from the school district. They stated it wasn't necessary due to the Speech Therapy wouldn't help him. Zachary needs more of Medical Speech Therapy. They gave me a prescription so I can use my insurance, medical and hopefully get on CCS (California Children Services). That way he can have Medical Speech Therapy all year long. I will have to see if this pans out. I have to call Pomona Community Hospital to see. Zachary can't go to the hospital everyday with all those germs. It will compromise him. So that will be on hold until I can check out the options we have at the hospital. I need to go check all these things out... Until next time.
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