Friday we spent all morning with the
Cleft Palate Clinic at Boys Town National Research Hospital. It was a long day for everyone. Granted my mom did point out that they had some really fun things for the kids so I am sure that helped Connor. They didn't have anything fun for the parents though :( there was a fun "children's waiting room" but the parents weren't allowed in there. There was a slide and books and puzzles and games and just a really neat place. The whole reason that we ended up at the BTNRH Cleft Palate Clinic was because Dr. Denman the ENT we went to see a few weeks ago said that there was a notch on Connor's hard palate (the roof of his mouth). He said that it could be a
Submucous Cleft Palate. Now I know what a cleft palate is and I would have never thought that Connor had one. The genetics counselor said that having a heart shaped uvula was the slightest form of a cleft palate so we went to have it checked out. We started off with a bunch of paper work and then we went to get his hearing tested. The ladies said that his ear drums weren't moving as much as they would have like to see. Which meant that there was some fluid behind them. He has had a cough so they were hoping that was all that was. His hearing tested out to be great, phew! One down. Next was the speech pathologist. I have always thought and still hoped that all he needed was some speech therapy so this was the session I was most excited to go to. She had Connor say a ton of words and then showed him how to make some of the sounds and he could do most of them. She had a fun alligator that he could push the teeth on when he said the words and then sometimes the alligator's mouth would snap shut :) She wanted to put a mask on his nose to see if air was coming out but he wasn't going to have anything to do with that. She said that she would recommend aggressive speech therapy for him and she would like to see him again in 6-9 months. So that is kind of what I was thinking and besides the time we are going to have to put in, easy. Phew! She also let me know that before anyone would talk surgery they would want to see at least 3 months of speech therapy. That made me feel better too. It really seemed like all the doctors yesterday wanted to find the best and least invasive way to help Connor. Then we saw orthodontics and he said he saw zero issues, phew! Then it was plastic surgeon, ENT and pediatrician. The plastic surgeon said that nothing looked out of the norm and so he didn't have anything unless it went to surgery and then he said that after some speech therapy they would do a couple more tests to make sure that surgery was the best thing, phew! then the ENT he basically said the same thing, oh and that Connor had a sinus infection ;) I guess I have to make an appointment with his pediatrician :) then the pediatrician came in and said the same thing. He said that they will all meet after the clinic was done and all talk about their findings and the best route for Connor then I will get a letter in the mail 2-3 weeks that will have their recommendations and findings. They are going to send them off to Connor's pediatrician and Dr. Denman and the Papillion/LaVista Schools so everyone is on the same page. Phew! Then we saw the genetics counselor. She said that she wanted to meet with us last because she wanted to see what everyone else found. So she talked about the submucus cleft which they ruled out and said that what we are dealing with now is either
Velopharyngeal Insufficiency (VPI) and/or
22q11 deletion syndrome (deletion on chromosome 22). UGH, there it is. Really couldn't they have just let us stay at speech therapy? So the test for the 22q11 thing is $500 just for the blood test alone, not including the lab and processing and everything. On the upside the genetic counselor said that they would give us the codes and words to use to talk with our insurance to get it covered. She also said that she is pretty sure that it will come back negative but not sure enough to not check. So now we wait for the findings and the letter that will contain everything that we need to take to our insurance to see if we can get the test covered. When reading the links I attached it's clear that if it's the 22q11 thing that he has a VERY mild case of it because he hasn't really had any of those symptoms. Granted as most of you know he did have an unexplained seizure when he was much younger. So I don't know how I feel. I feel glad that we went to the clinic because I feel that the multidisciplinary team is what we needed and they all sound like they will be wonderful resources if I need help advocating for any services but I also feel like this has been a longer, more stressful road then it needed to be. I feel that in the efforts to be thorough we have gone to the extremes of what this "could" be and it stresses me out. I know that as my mom would say, "don't borrow sorrow from tomorrow." But it's so hard to hear all of this and not think "what if" He's still my perfect little boy but it tears me up that maybe he's not. I just keep thinking that part of him may be missing and that it could really affect him some day. I just keep trying to go back to my gut and realize that he can make a lot of the sounds that he's missing if he is directed and focuses and that I do truly feel that all he will need is some speech therapy and by the time he goes off to kindergarten things will be so much better for him. But they still put that darn, "what if" in my head...............
