Wednesday February 9 Cameron had a hearing test. We have been following his hearing fairly closely since he failed his newborn hearing screening - something NONE of my other children have done. At 6 weeks, he was a borderline pass/fail - kind of a watch and wait situation. The 9th, Cameron's results finally indicated some action needed to be taken. Jess, the amazing audiologist, immediately started talking about sedated ABRs and CT scans, ENTs and hearing aids, ear impressions and cochlear implants. I put on my brave mom face and went into "office manager mom" mode - the one who makes all the calls and appointments and deals with the paperwork, but nothing more. I spent the next few days trying to arrange all of these things. I was just fine with all of it the entire day until Doug and I were laying in bed that night and he asked me how I was. I lost it.
I have been depressed for years. I have been medicated for a very long time. Cameron came along and all of the sudden I was happy. Like giddy with my life happy. I saw my life in a new light. Ethan would be in preschool next year where he would receive speech services in the school instead of 45 minutes away and Nolan would be in full-day kindergarten. I would have less running around to do and the longer the kids have had their cochlear implants, the less often I have to go to the audiologist in Anchorage with them. I saw myself being able to send the kids off to school and spend some uninterrupted low-stress time with my baby.
Now, all of the sudden I saw speech therapy visits twice a week, constant audiology visits, a trip to Seattle for cochlear implants, and arrangements for the other children - all of the things I thought I was leaving behind. Just as I thought my life was ready to slow down, it is picking right back up again.
I feel like I spend my life running around from office to office with my children. I spend most school holidays in the audiologist's office, which almost always means an overnight trip with my kids and without Doug. I pretend I don't mind. I mean, it is what it is and I can't change it. Most of the time I am fully aware that it could be so much worse. I am grateful that my kids are only deaf, a realization that comes when you have taken them to a children's hospital and seen other kids with tubes coming out of their heads. I do everything in my power to keep from letting myself feel how hard this all is. I take it as it comes and deal with it one thing at a time. This time I just felt like the future I saw, the one with me laying on the floor playing with Cameron on a lazy afternoon, was ripped out from under me. And I haven't gotten over it.
When Ethan lost his FM equipment in January, I totally freaked out. I always do when they lose their stuff. It is small and extremely expensive. I had a total emotional breakdown. I was so sick of cochlear implants and hearing aids, ear molds and batteries, listening checks and FM systems. I didn't think I could take it another day! Life went on though. And just when I thought I was over my little hissy fit, this hit.
The hospital in Anchorage called to set up the sedated ABR (a 2-3 hour hearing test that is done while the child sleeps). I have been through 11 ABRs to date. Cameron's last ABR was done in the audiologist's office at 7 weeks during his regular nap time. This is the way all of Nolan and Ethan's ABRs were performed when we lived in Idaho. I took them at nap time and they slept during the procedure. Brenden's one and only ABR was sedated. By the time he had his, his hearing was so far gone, they never needed another. Wanting and needing some good results, the audiologist and I decided to have Cameron's ABR sedated.
When the hospital called to set this up, they told me the procedure took 4 hours. I was a little surprised, but it didn't seem like a big deal. Then they told me that with everything they needed to do, I should plan to be at the hospital for 7 hours. And
then they told me I could feed Cameron for the last time 4 hours before I arrived at the hospital, which was set for 7:00 a.m. Cameron still eats every 3 hours during the day right now and they expected him to make it 11 hours without eating? Admittedly, he goes 11 hours at night, but I didn't know how he (or I) would do this during the day. Needless to say, I was concerned. I made the appointment for March 30 and decided I would deal with it when it came.
I had a hard time getting the CT arranged. Cameron's doctor didn't want to place an order for a CT because it puts him under high radiation. The fact that it is the only way to diagnose his potential condition was my only reasoning point. After calling insurance, the ENT, the family doctor, the hospital (and back around again - a few times over the course of a few days), I had everything arranged.
Thursday February 17 Cameron had a CT scan. He was supposed to be sedated, but after speaking with the doctors, we decided to sleep deprive him and it worked perfectly. I had to have Doug off work to drive us so I could sit in the back seat and keep him awake during the hour long drive. If it didn't work, we would have had to reschedule and have him sedated. The doctor got a perfect scan.
Since sleep deprivation worked so well, when we got home, I called the audiologist to see if we could please try one more sleep deprived ABR in the office instead of the 7 hour sedated one. She said she was more than willing to give it a shot and we set it up for March 4. She asked me to go ahead and bring all of Ethan's old hearing aids and equipment, so I knew what she expected the results to be.
I received a call from Cameron's doctor this afternoon to give me the results of the CT scan. Cameron has bilateral enlarged vestibular aqueducts as well as enlarged vestibules. This means he has the same condition as the other boys and he
will be deaf. Cameron has an appointment to see the ENT in Anchorage on February 24. I don't know what more he will have to tell me, but we're going anyway. I have a feeling I will spend 7 hours driving for him to see me for maybe 10 minutes and tell me the same thing I was told today.
I know that God will only give us what we can handle, but sometimes I think he thinks too highly of me. I know I can do this - I have done it twice before, but I really,
really don't want to.
I told everyone that if Cameron was deaf, we were done having children. Logistically speaking, it just makes sense. Through all of this though, I have had a very strong feeling that we are supposed to have
five children and they are all supposed to be boys. My feeling tells me that the last one is also not supposed to be deaf. Where this feeling takes us, I don't know.
Among all of this, I have had what we think is a stress ulcer since Cameron was born. The first thing I told the nurse after I delivered him was that my chest hurt - really bad. The doctor has run several blood tests, none of which gave us any clue to my chest pain. I have been on the highest dose of acid reducing medication and it doesn't touch the pain. There are days when I can't even stand up straight due to the pain. I have a feeling it's not going anywhere any time soon.
If this is the first that you are hearing about all of this, please do not be offended that I haven't called you. To be honest, I have talked to Doug about it as little as possible. It is taking everything in my power right now to hold it all together, so I have chosen not to talk about it. Don't think that you are the only person who hasn't heard because almost no one has heard until now. I am maintaining "office manager mom" mode until I know I can deal with everything that I have been feeling.
It doesn’t hurt, Cameron was just really, really tired – just like he was supposed to be. The audiologist told me things looked fine, but I found out later that her report showed a mild loss in the left ear.
Cameron with Jess, the amazing audiologist, whose favorite color is also orange.
