Monday, April 22, 2013

Early Intervention

We had our first appointment with Nassau County Early Intervention today. Jack would automatically qualify for services since he was born at 26 weeks but he qualifies a second time because of his hearing loss and again because of his cleft palate. The woman in charge of our case was very nice and knowledgeable. They will examine Jack and see if he has any delays or any issues that will require help. I know he will need help with hearing and I am pretty sure he will need physical therapy for his torticollis. She also said he will get speech therapy right away. Seems early to me but then again he hasn't said a word since he has been home so maybe speech therapy will help him.

They asked if I wanted to wait to get Jack hearing aids in case the tubes help his hearing. I do not want to wait. They say babies with hearing loss should have hearing aids by 3 months and Jack is almost 5 months. If he gets any hearing back after tubes I am sure they can adjust the hearing aids for him. I am worried that he might have severe communication delays if we wait too long. I talk to him all the time and it would be nice if he could hear.

I am hoping the ENT will agree to put tubes in for Jack but I know they may not want to do it yet. Jack may not be a great risk for the general anesthesia. He is small and his lungs are not in perfect shape. They may say we have to wait. I really would rather not wait but I do not want to put him under general anesthesia if he might have problems with that. I hate the idea of waiting because I am really hoping that his hearing will improve when he no longer has fluid in his middle ear. However, everyone I speak to about this is discouraging. They do not think his hearing will improve much even with the tubes in his ears. As his Mom I reserve the right to hold out hope and try not to be negative, but I am also trying to be realistic.

I am finding that there is a lack of knowledge about the cleft palate. Even the woman from early intervention said she had never seen a cleft palate where there was not a cleft lip. This is called isolated cleft palate and it actually accounts for 30% of all clefts. I am getting different information from everyone I go to and it is getting pretty frustrating. I am hoping to get into the cleft palate team, but it takes a long time to get an appointment with them.

For now we are continuing with tons of doctors appointments. Jack doesn't seem to mind. He is happy and smiles all the time.

1 comment:

  1. MaryEllen,
    It was great seeing you and baby Jack. Please bring him back again soon! Keep that positive attitude of yours! He is an angel! If you need ANYTHING please don't hesitate to call.