Tyler had a supraglottoplasty done yesterday and everything went as planned. We got to come home tonight since he was doing so well. He had an ever so slight temp (100 F) that we have to keep an eye on, but he's taking the bottle like a champ. He is drinking less formula but more often. The stridor has improved and now it's just a waiting game to see if it helped the cleft. Dr. Rahbar recommends that we wait at least a couple of months to see if things have changed. Within the next 2 weeks we ma… Continue

What an answer to prayer to find this site!!!!!!My daughter, Alexis 20mo, has been hospitalized 13 times since birth for aspiration/respiratory related issues, has had a G-tube placed and fundoplication at 5 months old, has failed 4 swallow studies, and still is unable to do any liquids by mouth. Just last month we went to Vanderbilt Children's Hospital and they mentioned the possibility of laryngeal cleft. Since then I have researched like crazy (and not found much). I am so excited to find sup… Continue

We had our 2nd appt with Dr. Rahbar this week and reviewed the results of Tommy's 2nd swallow study. The study was worse than the first showing that Tommy now even aspirates Stage 1 and Stage 2 baby food purees. The study did not reveal any neuromuscular disorders and Tommy is swallowing strong and has an organized swallow. Since he is currently on a feeding tube to stay hydrated, Dr. Rahbar agreed that the best thing to do was to repair the cleft surgically ASAP. The surgery is scheduled for ne… Continue

Tyler had a third swallow study on January 13th. I knew that he wasn't going to pass it, but I didn't expect that they would let me feed him baby food to see how that went. First they let me feed him the equivalent of Stage 1 baby food and what do you know, he passed. I wasn't too confident since it was only a small spoonful. I thought he'd be able to take a few spoonfuls and not just 3 nibbles off of a tiny spoon. Then it was onto thin liquids, which he failed (not a surprise). I explained to t… Continue