Connor had an appointment with his Otolaryngologist (ENT) on Monday to check for any structural problems that may be causing his silent aspiration of liquids. He had a follow up scheduled to check his hearing and ear tubes in December, but we were able to move that appointment up and do it all together. The first thing they did when they got there was the hearing test. He did fanastic! His ear tubes are open and doing their job which is great because they were placed in February and we were told they may only last 6 months. They conducted a behavioral type hearing test where they play different sounds in different pitches and see if Connor responds to them. So he sat on my lap while someone else entertained him with a book/puzzles. At random times, noises would pay through a speaker off to the side and when he turned his head in that direction a dancing bear appears. Connor was very funny during this test because anytime they played music he would start to dance instead of turning in the direction of the sound. When he did turn to face the sound, he would wave bye bye to the bear when the lights turned off. I have to say he was adorable! At the conclusion of the test we were advised that his hearing is more than adequate for speech development which is what they are looking for at this point! So that was the good news.
Following the hearing test, Connor met with the Doctor and we discussed the possible reasons for the silent aspiration. He told me that it is possible that Connor's large tonsils that they have been following since birth could be getting in the way when swallowing and if they are removed the silent aspiration may improve. He said there is absolutely no guarauntee that the tonsilectomy will help with the swallowing, and it is a debate among doctors at this point. He said that another possibility could be a problem in the larynx or a laryngeal cleft which is very rare. A final possibility for the aspiration could be that Connor's muscles in his mouth/throat just haven't fully developed just like in the rest of his body and that he could eventually outgrow it. They inserted a camera up his nose to look into the back of his throat and voice box area and confirmed that his tonsils are HUGE! He said that the there is a SLIGHT possibility of a laryngeal cleft but the only way to determine that would be under anesthesia.
So our next step is to go for a Sleep Study to see if Connor has sleep apnea. Seems totally unrelated, but sleep apnea is a sleep disorder characterized by abnormal pauses in breating during sleep. Sleep apnea is prevelant in children with Down Syndrome and a sleep study is becomming a standard test for all kids with DS. One of the possible causes of sleep apnea would be large tonsils so the Doctor believes Connor may have sleep apnea. He does show other symptoms including loud snoring and he is a restless sleeper. If it is found that he does have sleep apnea then they will remove his tonsils which would hopefully help the silent aspiration as well. While under anesthesia they would check the larynx and put in a camera into the lungs to see exactly what he has been aspirating and if it is causing any other damage. They had a cancellation for the sleep study tonight so we took it! The results take 4-5 weeks so we won't know anything until the beginning of December. So now we are back to the waiting game!
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