Sunday, February 27, 2011

I’m ok

Really, I am.  I threw my little tantrum and now I’m ok.  I think I just needed to get it out there.  I dress up in my “I can handle anything” costume and parade around in it and then one day I couldn’t find my costume anymore.  I have been keeping it all in for a long time and stewing over it and it’s out there and I’m fine.  We’ll get through it and I know it.

Doug asked me what a person who is already on anxiety/depression medication does when they are stressed and depressed more.  The answer is eat.  I have gained 5 pounds in the last two weeks and it must stop!

When Cameron was 7 weeks old (11/12/10), he had his first ABR – auditory brainstem response.  It is an electrical signal evoked from the brainstem by the presentation of a sound such as a click.  Basically, they send a sound in through the ear and measure the response with the electrodes placed on the head.  It usually takes about 2 or 3 hours.  It is totally painless, and effortless for that matter - they have to be sedated or asleep.  Ethan had 5 of them in his first year of life.IMG_6177IMG_6178IMG_6179IMG_6181It 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 has another one on Friday this week.  It should give us some more information about where we are with his hearing, or lack thereof.  I have noticed a significant decline in his responses.

In preparation for the ABR, I took the hearing aids to the audiologist last week and we had ear impressions made for earmolds.IMG_6699IMG_6703Cameron with Jess, the amazing audiologist, whose favorite color is also orange.

I was right about the ENT doctor visit.  I drove 7.5+ hours to see a doctor who sat down and said, “What can I do for you?”  I said, “I don’t know, why am I here?”  He said he didn’t know either.  He didn’t even want to look at the CT scan because he read the report already.  I told him that the radiologist who read it isn’t really an expert and suggested that perhaps he, the ENT, would like to take a look at it.  He told me to just hold onto it.  I asked if he needed to look in Cameron’s ears or anything and he said no.  He then proceeded to talk to me about the economy in Nikiski, of which there is none.  He talked about the Chevron plant closing and the fertilizer plant that closed a few years ago, halibut fishing, the Alaska oil pipeline and the potential future natural gas pipeline that has been talked about for 20 years, and a few other things I don’t care about, like politics.  He did, however, tell me that our family is a statistical anomaly. 75% of our children should not be deaf when each child only has a 25% chance of it – something I already knew and had kind of counted on.  He also threw in there that with the statistics, one of our children should also have Pendred’s Syndrome since it has also been associated with LVAS, which is what they have.  He was also kind enough to clarify why I should stop holding a grudge against the doctor who was supposed to do Ethan’s cochlear implants and then “quit” the day before we flew down.  It had been explained to me all wrong and I am glad to stop being mad about it.  Then I paid him $204 and drove home.

Here is Ethan showing the CT machine since I failed to take a picture while Cameron was IN the machine.DSCN0270
I have other, fun updates – like birthdays and my mom coming, but I only do what I can do in the time I have to do it.  I will share soon though, the pictures are too cute not to.

Monday, February 21, 2011


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.

Sunday, February 20, 2011


February started with my mom coming.  She arrived on the 1st.  Nolan’s birthday party was on the 2nd at the pool.  IMG_6551IMG_6512
Nolan’s birthday is actually the 3rd.  I have a thing for birthDAYs – the actual day means a lot to me.  Nolan picked eggs and monkey bread for breakfast and all the wanted to do for the day was ride his snow machine and eat at the Treehouse restaurant.  He got both.
Sadly, on the 8th, we drove my mom to Anchorage so she could catch her flight home.  The 9th, we had audiology appointments.  What does Doug do while he waits in the car?  Take pictures, of course!
Doug had to work on my birthday, so Tiffany threw me a party at her house.  Here, Blakeley pulled Cameron’s sleeve so his arm is stuck in his shirt.IMG_6696Tiffany made me a carrot cake.IMG_6695
2/16 Doug is so proud to call Ethan his son.  Shorts and boots… what a proud moment.DSCN0255
2/18 Brenden makes THE absolute BEST grilled cheese sandwiches ever.2 Bren makes grilled cheese 2-18Bren makes grilled cheese 2-18

Monday, February 14, 2011

Valentine’s Day

The pictures imported backwards, so I’ll tell you about our day backward.

For dinner we had heart shaped pizzas.  I was going to make pizza anyway and then this morning Doug gave me a new cooking magazine with a thin crust pizza recipe in it.  I couldn’t find a pizza stone anywhere, so I bought a piece of travertine and it worked okay, but I’m not sure I would recommend it yet.  I’ll let you know after we cut it down so it actually fits in my oven instead of hanging part way out.  Doug also bought mini pepperoni last week that worked perfect for mini pizzas.


I didn’t take pictures, but the kids (and Doug) had scalloped heart shape sandwiches for lunch.

For breakfast I was making birds in a nest with heart shaped cutouts when Brenden announced he wanted heart shaped pancakes.  I made pancake batter using the strawberry milk I made for breakfast and then threw in some mini chocolate chips and put strawberry syrup on top.  Not the healthiest breakfast ever, but perfect for a day full of sweets.


The kids took Valentines to class today.  I think they turned out pretty darn cute.  By the way: Walmart photo hates me (but gave me a $15 gift card for my trouble) and Safeway photo is a lifesaver.




I don’t normally drink a lot of pop, but when I am really stressed, sometimes I need a diet cherry Pepsi.  (Hey, it’s better than some things I could turn to.)  I have been really stressed.


When I started making breakfast, I kept opening cupboards to find little (and not so little) presents hidden – all with chocolates attached to them.  It’s a good thing Doug loves me no matter what my size because I am being fattened up by all who love me.

Happy Valentine’s Day!

Saturday, February 5, 2011

Adventures after midnight

(This is not my picture)
NICT, Japan :
Doug and I just got home from watching THIS.  We took pictures, but it's early (not even late anymore), so they will come later.