Hi everyone, I haven't posted in a while. I can't remember what all my siggy has on my 11 month old son's diagnoses (though I think it has a link to his facebook update page) but the short version is he has a rare, but small genetic duplication, and several issues with neuro, neuromuscular, and developmental stuff. It's a bit much to type out right now...
Anyway, one of the big things we've been dealing with is audiology. He passed his newborn screen, but there were concerns around 5 months that he wasn't really responding to anything sound-wise. This was around the same time that he started having seizure-like shaking episodes (seizures have since been ruled out and his neurologist feels that he may have a movement disorder). When he was evaluated by EI he demonstrating the receptive language skills of a newborn (at 6 and a half months) and expressive of a 3 month old. He also had significant delays in adaptive behavior and more mild delays in all but gross motor (he was ahead of usual motor milestones by months, but completing them in abnormal ways - which was attributed to some issues he has with his muscle tone and reflexes)
He failed OAEs twice in early summer and was scheduled for a sedated ABR in October. We use speech and ASL in our family (my husband has very mild hearing loss and I have some auditory processing issues) and he has been picking up signs well. He has also started responding to sounds (not always but sometimes) and his babbling is picking up too. We are up to 4 consonant sounds, and more grunting and squeals. We got to the ABR appointment and they couldn't do it because he had fluid in his ears. The repeated the OAEs and this time, he passed them. They did soundfield testing but the results were inconclusive and they want to see him back in December for repeated soundfield and OAEs to determine whether an ABR is necessary.
They also sent us to ENT for evaluation. ENT is recommending tubes. We asked for a month to determine if the fluid would go away on its own. The month is up tomorrow. Noah is teething and sick (nose, cough, diarrhea), his sister has an ear infection, but so far his ears aren't infected (but got confirmation at his neuro appointment yesterday that there's definitley fluid in there). I fully expect to be pressured to schedule him for tube surgery tomorrow...
I have only heard about this surgery in kids with recurrent ear infections. He's only ever had one. It's not causing him pain, he's -fine-.
The doctors and nurses are advising that if the ENT recommends
tubes, we should do it because language development is crucial in this
period. However, I feel that the progress he's making is great and it's just an excuse. Whether he hears well or not, he has access to language, and as I said before, he's beginning to babble more. I don't really feel that "language development" is enough of an excuse to put him through surgery and anesthesia, the pain from the tubes, and complicating bathtime and swimming, when his actual "language development" is coming along. And there is NO guarantee that fluid is impacting his language anyway. So it's a surgery that -may- benefit his auditory and verbal skills but I don't know if that justifies the "cons" of putting my infant through the whole surgical mess since it doesn't seem necessary.
Sorry if I'm rambling, I haven't been able to figure all this out on my own, and I don't think my views are necessarily coming out entirely in a way that can be comprehended. What do you think? I don't know how to explain my view to the doctors and I'm not sure if there are any things I'm not thinking about re: the surgery.
Isabelle born via emergency c-section after her heart stopped 04.29.10
asthma, astigmatism, amblyopia, allergies, tongue and maxillary ties
Noah born via RCS 12.09.13
14q11.2 duplication, receptive language and adaptive behavior delays
multiple health concerns under evaluation
follow him here: www.facebook.com/lovefornoah