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.

Doctors

We are going to tons of doctors. Right after I got home from the pediatrician I started calling and making appointments.  I called all the people he referred me to. I also called NYU's cleft palate center and made an appointment there.  Everyone said I have to be wrong because there is no way the NICU could have missed that.  He was there 106 days. He was intubated numerous times. He had feeding tubes placed many times.  Seriously, they were down his throat a lot.

On Tuesday I went to the cardiologist.  Jack had an echocardiogram and an EKG. We met the cardiologist and she was really great. Jack's PDA is closed.  She said he was cleared for cardiology and doesn't need to come back. Before we left she introduced us to the pulmonologist.  I really liked her too.  We have an appointment with her next week.

On Thursday we had an appointment with the gastroenterologist. He was very nice. He told me to increase the cereal in Jack's formula to a full tablespoon per two ounces and he changed his Zantac dose. After that we drove to Manhattan to see the cleft palate specialist. His name is Dr. Staffenberg and he was really great. Jack does have a submucus cleft palate. I asked the doctor how it could be that the NICU didn't pick it up when Jack was there 106 days he just said, " I reserve judgement."

Cleft palate is a relatively common birth defect.  I am blown away that they missed this. It looks so obvious to me. He has a huge ridge running down the roof of his mouth where you can tell the bones  fuse. His type of cleft palate is covered by skin, but the doctor said the muscle is not closed in the back of his mouth ( the soft palate). You can't see a hole because the tissue is over it but it causes him problems.  This is why he couldn't feed, why he dribbled, why he refluxed and why he failed the hearing test.  Because the muscle is not together when he swallows it goes into his ears and dribbles out his mouth.

Dr. Staffenberg gave me the name of the cleft palate team coordinator do I can make an appointment to see the whole team.

So we will have a lot of doctors in our future and I am working on processing all this.

Thanks for all the good thoughts and prayers!