Mar 10 - ABR test (25 weeks)Mar 11 - hearing aides prescribed and fitted (5 1/2 months) earmolds too small only wearing right side
Mar 17 - CAT scan and genetic testing/blood draw and new earmolds made/ordered
Mar 26 - Early Intervention registration begins
I'm back home in Spain now. I ran into a few bumps on the way home like missing a flight in Madrid due to the delayed departure from Philly resulting in an extra 5 hour layover before I could get to Jerez... After spending an hour to report a missing suitcase (1 of 2), I was walked over to a closet where it was waiting from the original flight arrival. BUT, Isaac was just wonderful and slept through most of the travels and my lovely family was waiting with open arms when we finally finished our travels. What a trip! I ended up staying an extra week (so 2 weeks in all) but we had all the tests done and a diagnosis and treatment/intervention started. It was a very productive journey.
He had the ABR test and our concerns have been confirmed. He has moderate hearing loss in the right ear and moderately severe loss in the left. I was given some literature on being a parent of a child with hearing loss. Here is a little blurb on his diagnosis:
Right ear: moderate hearing loss -- Without amplification, 50-100% of speech sounds may be missed which may effect speech development unless optimally amplified. Proper amplification should enable listener to hear and discriminate all sounds.
Left ear: moderately severe -- Conversation cannot be understood, unless the intensity is very loud. Age of amplification, consistency of use and intervention will determine speech intelligibility and /or language development.
Now we can deal with the reality of Isaac's life and what he needs. Before we left for the U.S. we had earmolds made up and the hearing aides ordered, to be ready for him if necessary. (the audiologist obviously anticipated the test results to be positive). So the day after his ABR test, we went in to get the hearing aides fitted and set up for him. The problem is that he's growing at a rapid speed and has already outgrown the earmolds. They don't work well if not perfectly fitting into his ear because it causes too much interference and backgroud noise. New earmolds were made and will be mailed to Spain within a week or so.
Travis and I are both feeling a little conflicted about how to feel. We're so glad to know now but sure wish it wasn't true. This is definitely a defining shift in our family as it will affect all of us on a daily basis. Just trying to keep his hearing aides in his ears this last week is not working out very well because they don't even fit correctly at this point - very challenging!
The next week he had a CAT Scan to get a good picture of his ear bone structure. This was difficult for Isaac because they didn't end up sedating him completely. Instead they gave him oral medicine to induce sleep. They had to lay him on his stomach and strap his head down to the bed for the scan and he kept waking up and squirming and crying and kicking his feet... He hates being on his stomach and I felt awful for him. After a second dose of the sleeping med, he calmed down enough to get the test done. Then in PACU, as he recovered, they needed to get 3 big viles of blood samples for some genetic testing and they were having trouble getting enough blood from his wrist so then they tried his ankle area without any success and finally got it all from his inner/upper thigh area. We were both in tears by the time that was done. Needless to say, I didn't like that day. Two days later, we were back in the Doctor's office for the test results and everything looks great and normal - no problems! I'm now wondering WHY is he hard of hearing in both ears if everything is anatomically correct and perfectly formed. (I didn't think about asking that question at the time.) It just seems odd that he can hear when everything is amplified up with the hearing aides but he can't hear without them even though his ears are perfectly formed - just not performing right. I guess I need to do more research on how sound travels through the ears and brain to get a better grasp on how ears work.
Our next plan of action is this: We are waiting for the new ear molds to arrive and then we'll get them fitted and hooked up to his hearing aides so we can start using them full time. I'm looking forward to giving Isaac this gift of hearing from both ears for the first time in his life. :-) Also, on the 31st he has an appointment with the on-base Early Intervention Department to get him set up for their therapy programs.It sure makes me appreciate the gift of hearing that we all take for granted because it's something we will have to diligently manage for Isaac. To clarify what the audiologist told me, he is not deaf, rather hard of hearing. To be deaf, you have hearing ability at 70 decibels or more. His hearing is 50 decibels in the right and 65 in the left. We will have to repeat the ABR test a couple more times over the next couple of years to see if his hearing loss is maintaining or increasing as he grows and matures.
