Laryngomalacia....

Noah's first insignificant (we thought) medical diagnosis was laryngomalacia....

Laryngomalacia is a congenital softening of the tissues of the larynx (voice box) above the vocal cords. This is the most common cause of noisy breathing in infancy. The laryngeal structure is malformed and floppy, causing the tissues to fall over the airway opening and partially block it.
For most infants, laryngomalacia is not a serious condition — they have noisy breathing, but are able to eat and grow. For these infants, laryngomalacia will resolve without surgery by the time they are 18 to 20 months old. However, a small percentage of babies with laryngomalacia do struggle with breathing, eating and gaining weight. These symptoms require prompt attention.

Noah at 2 weeks old developed this awful noisy breathing. We took him to the pediatrician emergently all to be diagnosed with this and we were told that he would grow out of it....then it became normal and we didn't think of it again because it was fine....Right!???

About a month ago at Noah's routine pulmonary appointment, it was recommended that we see the ENT for Noah's laryngomalacia since he had not grown out of it......so much for it resolving on its own.

Around the time that all of Noah's other symptoms of SMA started, he also began choking and gagging severely on food etc. Hyper-focused on the other symptoms of SMA such as the non weight bearing and general floppiness the gagging wasn't as much of a concern because he was only 7 months old. We started to lay off on solid foods and he seemed to do somewhat better. A few months later, he was diagnosed with SMA and got a g-tube because of malnutrition. Slowly, he stopped eating altogether because he developed severe sensory issues to food. So now, fully g-tube dependent we have been working with an occupational therapist to get him interested in food and at least touching things he thinks are "yucky". There is only 1 food that we can get him to touch and taste/eat and enjoy without having a meltdown. French fries.......

2 weekends ago, we went out to breakfast at Denny's. Noah wanted a french fry and Lane was eating hash browns. I gave him a small piece of shredded hash brown only minutes later have him gagging and severely choking on it. More severely than he ever has.

So, a few days ago I began to research more on laryngomalacia and found that it can cause frequent apnea and choking/gagging....I think I have found the cause to part of our eating problems. He is scheduled to see an ENT on September the 23rd and I am praying that the doctor will be able to see the issue by doing a scope. If he does indeed have a more severe laryngomalacia, then surgery would be the next step. I would love to avoid another surgery, but if it would mean that he could be more comfortable and enjoy food then it would be worth it. My other fear is that SMA + congenital weak/floppy muscle in throat + normal progression of SMA sounds like disaster.

Please pray for him.......