Part of me isn't sure if I should post this or not. It is probably gonna be a "I am so frustrated with this and there is NO end in sight" post. So I'll type and decide by the end if it gets published or not. So here goes...we just spent the whole afternoon at Children's Hospital Seattle in the Audiology dept. for Matthew. Over a concerned period of time we noticed that he was sitting up super close to the TV, and we had to call to him several times before he answered, and he kept failing those silly hearing tests at school.
In the last 6 months we have discovered that Matthew has some hearing loss in his right ear and chronic fluid in his left. I can't tell you how many hours we spend at Children's Hospital-Bellevue or Seattle for this, that and the other for Matthew. The bills never end! But, our thinking is, if we can improve Matthew's quality of life, then he is a little more managable for the rest of us who live with him.
So here is where I am SOOOOOOOO FRUSTRATED.
We spent several hours this afternoon
1. getting a CT scan for Matthew, and waiting...
2. seeing a medical assistant, and waiting...
3. getting his hearing tested for the 3rd time in this state-of-the-art facility (way cool, BTW), and waiting...
4. and seeing an ear/nose/throat specialist for the second time just to hear:
"We don't know what is causing his hearing loss or the chronic fluid, and thus can't do anything to fix it. But, we can order some genetics testing that still won't help us fix the problem."
Hearing aids or tubes are not an option for Matthew. They wouldn't work for his hearing problem. I have a friend who once said, "I would like to find a doctor that is done practicing and actually knows something." LOL! So we are back at square one (can't tell you how many times we have been there with Matthew). And we are looking at taking Matthew back in every 9-12 months for the same routine as today just to make sure it doesn't get worse. These visits are on top of all the other visits we make to Children's Hospital for all the other stuff. Oye vey, we are in for another long haul with Matthew. If I just keep smiling do you think I will get through this? Some days it feels like I need way more than just a smile! Smiling REALLY BIG right now...
3 comments:
My heart goes out to you. You and Matthew will be in our prayers, as well as the rest of the family. Love you and know you will get through this.
Oh my heart is swelling for you Kathy! I can only imagine the frustation to not get answers and be able to fix something for Matthew. It's hard to not be able to fix things. Keep smiling. You are loved! You are amazing!
Hang in there. There's a genetics clinic in Everett. I took Kira there. Children's has a suite next to the gift shop in the hospital building that the maternity/labor/delivery is in.
Maybe a cochlear implant would be good if he loses more hearing? I just met a man last week with one. He loves it.
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