The last two weeks have been nothing but either medical appointments, or follow ups phone calls on those medical appointments.
You see, earlier this week we saw the ENT to get medical approval for Axel to get hearing aids based on his first hearing test which showed significant hearing loss. The level of hearing loss found is consistant with the type of speech (or shall we say lack of speech) and the nasal/glottal quality of his babbling. When we got to the ENT the first thing they did was another hearing test (this is a different audiologist) and he tested within normal limits. Really, I wanted to pull my hair out. This audiologist and I do not work well together, and I could tell she was re-doing sounds over and over again before he responded to them. I don't think he was actually responding to the sounds, I think he was getting bored and eventually just dropped the stupid toy in the bucket like she wanted. But is OAE (Otoacusitic emissions) was normal this time, and last time it was not. Hmmmm
Then we saw the ENT. Axels tonsils look GREAT (as in, they're small) YIPPEE!!! Really, this is one thing common to DS that we did NOT want to deal with, especially with the other stuff we have going on. I told him about my suspicions of sleep apnea, and he said later, when we get the other stuff sorted out, we can do a sleep study if we still think it's a problem. I do have to say, even with his extreme vitamin D deficiency, he is not tired during the day so I don't know that we'll pursue this. We talked about the discrepancy between the two hearing tests and he agreed that a sedated ABR was warranted.
Next week we start informal school assessments so that Axel can start school as soon as we're ready. Part of the reason we need his hearing test done is to help determine the most appropriate placement for him. But, I have to say, given that ASL is his primary communication EVEN IF HE'S HEARING NORMALLY, and I think he should go to the full immersion ASL program. It's the only way he's going to get a fluent language model for ASL. But if he does not have a hearing loss, then I'm going to have a HUGE argument on my hands and would have to either transport him myself (fine for this year, but not for the next two years!) or he gets stuck in a special ed classroom for hearing kids with an aid who knows a few hundred signs but not enough to deliver a full language model. Also, communication between him and the other kids would always have to be facilitated by this person (who is not an interpreter by the way) instead of happing naturally like it would in the ASL classroom.
We need to either find that he has the hearing loss he first tested with, (which is how he acts!) or find a reason why he's not responding with speech in English OR Serbian. It's possible he has auditory neuropathy. This is only a possiblity, but it certainly fits what we're seeing in Axel.
Next week Axel will also be meeting the cardiologist. This is just a routine exam. We have no reason to believe he has any of the heart defects common to kids with DS, but he needs to be cleared by cardiology to have his dental work done.
At the end of the month he'll have a check up with ped. ophthalmology. I'm not sure what to think about his vision. He does the "pirate eye" a lot, quinting his left eye as he tilts his head. This can be a focusing technique in kids who are very far sighted. But his depth perception and other visual perceptual skills don't seem to be an issue so I'm not sure. Also, his left eye waters most of the time. Well, both eyes do but the left is worse. This could either be because his eyes are straining and fatigued, or because his tear ducts are blocked, both of which are VERY common to kids with DS, and both of which Angela has gone through as well. When he wakes up in the morning his lower lids are VERY puffy and he has tears running down his face which is indicative of blocked ducts. Hmmmm He probably has both problems going on. They're a relatively easy fix so I'm not super concerned, just need to get it taken care of before he starts school.
We have finally gotten an appointment for Axel to have an MRI with sedated ABR (hearing test) on February 3rd. This is father out than anyone wanted to go, but it was the soonest we could coordinate with the audiologist for the ABR which is also crucial right now. Once the MRI is done we'll be meeting with a neurosurgeon here, and the MRI's will also be sent to Shriner's Hospital in Philadelphia for a second opinion. One of the biggest concerns is the significant difference between Axel's measurements at flexion and extension. They should be close to the same. Also, his shoulders were shrugged so he didn't have full range of motion, which means it's very probable the gap measures larger than what was seen on the xrays.
Once all of this stuff is done, we'll know if we can schedule to have his dental work done. I know he's in pain now. He's started wincing at some things, and he's chewing very carefully. The dentist said this would probably happen now that he's getting his teeth brushed daily and the gums are being irritated. But, at very best, it will be mid to end of Feb. before we'll be able to get his teeth taken care of. Poor boy!
Today Angela had a check up with her neurologist. He is THRILLED with how well she is doing. His words were, "She is doing stellar! Most kids with DS who come through here with seizure disorders are NOT doing this well. Most have had significant neurological damage done by their seizures. With her, you'd never know. You can't even see evidence of her strokes anymore other than a very slight weakness on her left side, but it's subtle and you'd never find it if you weren't looking for it. See ya next year!" Needless to say, this was one of the best appointments we've had!