We got up early (5 am- ugh) this morning because Grayson was supposed to be sleep deprived for his ABR. I was dreading the appointment because I knew getting G into “natural sleep” for the test was going to be a challenge. I had to give him his seizure meds at 9 am, so I gave him some Melatonin (a natural sleep aid) too. It worked- after about 10 minutes of hard-core crying while I rocked him and sang “Jesus Loves Me” he finally fell asleep with the sensors in his ears and on his head.
The test only took 20 or 30 minutes and guess what it showed? Completely NORMAL hearing, in both ears. While I am THRILLED with these results (NO hearing aids- hooray!), I’m also confused and ticked off at the audiologist who spoke to us after his first ABR, while he was still under anesthesia (he had it done during his muscle biopsy and G-button placement). She told us he had “moderate to severe” loss in his left ear, but neither the report nor any subsequent hearing tests has shown that. Just makes me wonder.
The only sad part of this is we will now lose our Auditory Impairment therapy eligibility. The therapist has come with us to 3 doctors appointments, including this morning and we’ve had 3 therapy sessions with her, which I really felt were productive for G’s cognitive development. She does a lot of sounds associated with pictures and objects, which I feel Grayson needs, regardless of his lack of hearing impairment. Plus, I really like her. But she said she would friend me on FB, so it’s all good 🙂
In this journey, honestly, sometimes getting “normal” results isn’t a good thing. When you know something is wrong, you just want the labs and reports to tell you WHY. But in this case, normal hearing is the best news we could have hoped for- one worry we can now cross off our list.
Yay!! K has profound loss in her left ear (it has progressed from mod-severe) and I haaated those darn ABRs. Chloral hydrate does not sedate her well and those tests were always a stressful failure. So glad she can do the booth testing these days.
YAY! so glad to hear the great results!
I think that only a parent in this situation can understand that feeling. It is so frustrating when test come back normal when you know your child is not. Searching for answers is so hard. I am sorry you are losing a therapy that could have really helped. That is the worst part of this.
Glad the test went well and you could get it done with her was just asleep…fantastic that worked. Glad for the results but sorry for the loss of therapy…maybe what she was doing could be worked in with someone else? Or in school next year? Especially if it was helping him…would be great to continue the ideas she was doing.
So glad that it went well, very little trauma, and that the results were good!!! Sad that you lose the good aid though. That sucks! You need good support, and it's tough to see any taken away.
Bummer about losing the auditory therapist. How great that the melatonin worked so well. I mean, really, if it works so well, I wonder what other tests, etc… could be performed with that instead of anestesia? Also, yay that his hearing is great!!
Normal is great! But I'm sorry it means losing a therapy. That has to be a tough balance. But very nice that the testing went so easily.
Hi Elizabeth – we keep you all and precious Grayson in our prayers!! Glad to hear the hearing test was normal. Lots of love to you all!!
Well, now you don't have to hide the loud pitch ringing hearing aids from all your dogs! 🙂 Good news!
hooray for normal results, but I'm sorry you still don't have answers. I hope that you can continue the therapy some how since you feel it's helping G!
I understand – when you know there's a problem, all you can hope and wish for is an explanation for that problem. It seems that you've had to live like this for a long time, trying to get proper diagnoses for your son. You are a wonderful advocate for Grayson!