A couple weeks ago, Kellsey went to the ENT, finally! It is so hard to get into that clinic! The purpose of the visit was to get her hearing checked, which all kids with Down syndrome should have done yearly (and I'm 99% sure this was never done in Ukraine), and we wanted to address the issue of her really big tonsils.
We were told by the doctor in her baby home that they were large... we could see for ourselves that they were big. When we got her home our pediatrician commented on how big they were, so we knew it was going to be an issue. I believe the ENT's words were, "Holy cow!" LOL Really, they're huge.
Anyway, at this appointment we learned that Kellsey's hearing is not so great. In fact, her tympanogram was completely flat in both ears. They're hoping this is caused by fluid and that placing ear tubes in her ears will help. Not hearing well, of course, could also be affecting her speech.
Then of course we had to address her tonsils. They definitely need to come out. My big concern though was if can they do a tonsillectomy before her heart defect is repaired. Her ENT contacted her cardiologist and he said it should be fine. SO, she has a sleep study scheduled next month sometime (I can't remember when right now) and then she will have her tonsils and adenoids removed on February 3rd. She will have a pre-op appointment with anesthesia first to talk about the fact that she has AAI and address how they will keep her neck extra stabilized during surgery. We will be going back to Philly in January to Shriner's, so I will be talking to her doctor there about this as well.
The sleep study that she will have next month will check for sleep apnea, which I'm pretty sure she has. She is an extremely restless sleeper and wakes up several times during the night. This is pretty common in kids with Down syndrome, especially when they have large tonsils, but they want to know how bad her apnea is so they can repeat the sleep study after she's recovered from her surgery and see how much she has improved. Kennedy has always done well with her sleep studies and Kellsey is pretty go-with-the-flow, so I think she will be fine, too.
While we were at this same ENT appointment, I asked her doctor if he would also order her a swallow study. I've noticed that when Kellsey drinks, she often gags and sputters on her liquids. We went through serious aspiration issues with Kennedy where she got pneumonia all the time when she was younger and I knew it would not be good for Kellsey to go through a T&A if she were aspirating. He said it was unlikely since Kellsey was not getting pneumonia but agreed it was better safe than sorry and went ahead and ordered the test.
Yesterday, after we dropped Frank off at the airport, I took Kellsey in to Vandy for a barium swallow study. She did really well with it. She's very cooperative! However, it did show that she is severely aspirating all liquids. This means that any time she drinks anything, it fills her lungs with fluid. The fact that she has not gotten pneumonia is amazing! We of course cannot let this continue though.
She aspirated way more when she was drinking from a straw, so no more straws for her. When she's drinking from an open cup or a sippy cup, we have to start thickening her liquids to a honey consistency. We had to do this with Kennedy as well for about a year. She finally outgrew it. I will be using Simply Thick as a thickener. I have found it's much better than Thick It or some of the other thickeners out there. She also cannot have ice cream or jello or soups... nothing that can turn into a thin liquid or has a liquid/solid combination. Her aspiration is actually worse than Kennedy's in that respect... Kenn didn't have those restrictions. They are hoping that after her T&A, Kellsey's aspiration will improve. They could see on the machine yesterday that her tonsils are truly, really huge. They are so big that they kind of hang down the back of her throat. It's crazy!!!
Anyway, I know that's a lot of information, but it's nothing we haven't done before with Kennedy, just kind of stinks we have to do it again. I'll be teaching Kellsey's teacher how to thicken her liquids, and we'll have the little packets of thickener all through our house... and the car... and my mom's house... nothing new! HA! Hopefully she'll outgrow like Kennedy did. I will update again when we get the results of her sleep study - probably in January sometime. Thanks for reading if you made it this far!