In 2001, when Nick was 8-years old and in the third grade, he was diagnosed with a bilateral progressive hearing loss.
To be honest, we took it pretty hard. We had 8 years to kind of get used to the idea that he had cerebral palsy and at that point, we kind of knew what that meant for HIM. Although we still today go through ups and downs emotionally regarding Nick's disability, over time, it does get easier and you choose to live your life in the best way possible. Anyhow, it felt like a shock to us, a smack in the face, although it shouldn't have been.
We thought Nick took more time to respond to people because of his cerebral palsy. He did have more difficulty getting his words out. Then someone asked us when we last had his hearing checked. We couldn't even remember the last time, in part because of everything else Nick always had going on (appointments, therapy, etc.). We took him, not really expecting a problem and we were wrong. We should have remembered that when Nick was an infant and he had the jaundice (which caused the brain damage which caused the CP), we had to do a full exchange transfusion of his blood, literally, to save his life at the time. (long story, a lot of medical details I won't get into!) We had to sign a paper saying we understood this could cause nerve damage to his ears, among lots of other things and our focus was on saving his life. We just forgot about that I guess with so many other things going on. So, we had this whole new disability in and of itself to learn about, deal with, etc. That was why it was harder for us I guess.
We educated ourselves once again, reading books, etc. Nick at the time had a mild hearing loss in one ear and a moderate hearing loss in the other. After seeing an ENT who specializes in hearing impairment, he confirmed Nick had nerve damage and that his hearing loss would be progressive to the point he'll eventually "lose his hearing" per the doctor. He added that Nick would be a good candidate for a cochlear implant (CI) when that time came. You have to have a profound hearing loss to get a CI.
Nick needed hearing aides. We soon found out that our insurance (and most others) do not cover hearing aides as they are not medically necessary. We felt (and still feel) that Nick's hearing was necessary, especially while in school, and he couldn't sign due to his fine motor delays from the cerebral palsy, etc. So, we ordered the hearing aides and paid $5600 for the pair of digital hearing aides, which are best because they can be adjusted and take out background noise. (hearing aides will often pick up ALL noises, even ones you don't want them to!) It was a lot of money for us then and just to note, we just bought his third pair this year. Then we bought a $3600 FM system so he could use this to hear people speaking, focus on them, etc. Nick (and Bella) are worth it, but this was a lot of money for us, and we had to make a lot of other sacrifices I won't go into to get these. It was stressful for us adjusting to Nick's hearing loss, the financial stress of the hearing aides, and the care of them too. Of course, we never told Nick of that and he still doesn't know.
We did stress with Nick though that these hearing aides and the FM system did cost a lot of money and were hard to get and he had to take care of them. He couldn't take them out and set them down anywhere, etc. because we didn't want him to lose them. We did insure them, etc. We stressed this a lot.
The VERY FIRST DAY Nick had his new hearing aides, our boston terrier, Oreo, came up to Nick, who always is on the floor at home, was licking Nick's face, licked his ear, took out the hearing aid, bit into it and started chewing it all before we could get a sentence out! It was like it was in slow motion. I was watching the whole thing. I can't even explain the horror of it all. I screamed, which scared Nick and Oreo, Oreo spit out the chewed up hearing aid, I did tell Nick it wasn't his fault, but then Greg and I were crying. Just thinking of the cost of them, we just got them, etc., got the ear molds fitted for Nick's ears, etc. We had to call the audiologist and tell them, "the dog ate the hearing aid"!!! Luckily for us, we only had to pay 10% of one, $280, to get it fixed, which was a lot of money to me at the time too! But, it was better than $2800 I guess. Anyhow, at the time, it wasn't funny at all, but now we laugh about it.
Then one day later that school year, Nick came home and had no hearing aides. He said he took them out because they were bothering him and the substitute para-professional "put them somewhere" and they couldn't find them before he left school. I was not happy with him. I lost it and immediately raised my voice, telling him how irresponsible that was and if they are lost, he would be grounded. We were both upset. I looked through everything, called the school, left a voice mail. Luckily for me, the principal got the message after hours, went into the classroom and found the hearing aides on top of a tall cabinet, called me. I told Nick and I told him I was sorry for raising my voice and to please be more careful. He seemed fine. He didn't seem upset. We went on with our evening. After dinner, Greg was giving Nick a bath. Greg was telling Nick that he had to be careful and not take his hearing aides out and if he did, to put them in the storage unit we gave him, like we always told him. Nick then told Greg, "Yeah, Mom was so mad at me she said she would drown me if we didn't find them!" Well, as you can imagine, Greg immediately told me this, I of course, was mortified and clarified this with them and we all laughed so hard. I just couldn't get it out of my mind that my son would think I could even say such a thing to him. I had lots of talks with him and felt so badly that he thought this. He just laughed every time I brought it up! Not to mention, I didn't want him telling people this. Can you imagine Children's Services getting a call if someone didn't hear the whole story? I didn't tell anyone this for awhile, but it ended up being so funny to us, we just had to tell the story!:) I told Nick, boy, I guess you really do need these hearing aides:)
We have so many stories like this. Sometimes, having sense of humor and being able to laugh at the ridiculousness of the situation helps a lot. Otherwise, I think we'd lose it at times!
The whole hearing aid situation, the cost, not being covered by insurance, is something that makes us really angry when we let it. We have of course, appealed, looked into it, talked to anyone we could think of, contacted agencies. We don't qualify for anything. It's just something we have to accept and we do because Nick needs it and to us, there is no other option. It's too important! I don't think a lot of people realize how many things like this are not covered by insurance. They enhance the quality of life so much and are not considered medically necessary. I guess you don't know until you go through it or know someone personally.
I hope you enjoyed these little stories. A few of many. I'll tell more later.........
Blessings:)
Amy
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