Hunt

For my birthday, my mom sent me on a scavenger hunt to find my gift.  It was hilarious, heartfelt, and rhymed perfectly.  Not only was it a hunt, it was like a peek back through my life.  Along the way, there were gifts for each of us, but mine was the grand prize.  Yesterday, in honor of grandma, Brenden made me a scavenger hunt.

1. In what cooks that starts with O try to find where it is so. (oven)
2. Now you found it the next one begins in script. (scriptures)
3. You have found me that is true. The next clue is in wee CB. (Cameron) 
It was so cute.  I had been holding Cameron earlier and Brenden came up to me and asked me to close my eyes.  I could hear paper rustling and I snuck a peek to make sure Brenden wasn't giving paper to Cameron to eat, but he was shoving the paper through the crotch of Cameron's pajamas.
4. You found me, great try 8  (Brenden)
5. Good and best, try a crest.  (toothpaste) 
Brenden had asked me earlier in the day if we had a family crest.  I was confused, but he found a way to use his clue.
6. Try to figure out how it ends, with pill it begins. (pillow)
7. Good job, we're almost done try finding out in the chi_ _ey. (fireplace)
8. Yay, you found me.  The next one is in Brenden's po_ter. (poster) 
Brenden made a poster earlier in the day advertising himself as an author.  I hadn't seen it at the time, but the back said Love you everyone!

We took a video of the hunt, per Brenden's request.  My mom also took a video of my birthday hunt.  When we finished the hunt, Brenden said, "Now will you put it on your blog?"  So there you go, record of the hunt is now on my blog.

Report Cards

Evidently Nolan's teacher was "directed" to my blog a while back.  This entry is for Ms. Pala: Thank you for validating me in Nolan's report card by acknowledging the fact that I put his folder in his backpack 9 out of 9 weeks.  I don't know that Nolan will ever be "proficient" in listening or following directions.  Sorry about that.

Brenden's teachers are both on maternity leave.  He has two teachers who were due within a week of each other.  He really, really likes them.  Their report card comments are always worded in a way that would make any mother proud of her son.  They always manage to highlight Brenden's best traits and I appreciate it.

Finally, today is Brenden's 8th birthday.  I love that boy.  He never once complained that today wasn't all about him.  Tuesdays are rough.

We're BACK!

Most people don't even know we were gone, but we spent the last two weeks away from home.  We visited our families in Utah and Idaho.  More on that later.  I just had to share something before I forgot.

Brenden is usually sensitive (or annoyed, I'm not sure) about other kids asking him what his cochlear implants are.  On the plane home, an 8 year old boy asked him what they were and he slouched down in his seat and mumbled "implants."  The boy asked him what they were for and Brenden told him they were for hearing.  The boy then said, "Those are SO COOL!"  Brenden noticeably sat up taller and prouder and told the boy all about his CIs.  He also proudly shared all about his brothers being deaf too.

Brenden's new CIs are really cool.  I think he is happy with them and they have cool covers to decorate them up.  I was so glad that boy was on the plane with us.  I was thrilled to see Brenden show some pride in his implants.

Brenden's new implants are black.  I gave him the option of brown to match his hair color, but the black looks really cool and tech-y, like the computers and tvs that are out right now.

With the mini battery

Brenden's favorite cover

 We also have these covers:

The covers for little girls are way cuter - I have mine all picked out for the day I become deaf.  Ethan's implants are charcoal color.  The boys each have soccer covers and share the others.

Coolest thing EVER!

Click for a way better, way bigger picture

We missed the best part because all of Doug's camera batteries were dead. He plugged the battery in just long enough to get 2 shots. Now that he has it all figured out, we'll get you better pictures next time. This is from our deck. If we drove a little ways or walked out onto the lake, we could do much better - but it's cold.

Edit:

And then he charged it again.

He's still out there taking pictures, but I need some sleep!

ABR

Doug and I drove to Anchorage on Friday morning for Cameron's ABR.  It was so nice to have Doug go with me.  Tiffany kept the other boys so that Doug and I could dedicate our whole day to Cameron alone.  We had to keep Cameron awake on the drive to Anchorage, which is not easy - usually I depend on him sleeping the whole way there.  Doug sat in back with him half way and then I took over for the second half.

We arrived at the audiologist, they hooked Cameron up with the electrodes, and he went right to sleep.  He woke up quite a few times during the test, so I had to keep feeding him to put him back to sleep.  He slept well enough that they have pretty reliable results and Cameron will get his hearing aids this Friday.  Brenden will also get new implants on Friday, the same kind that Ethan has.

I am so glad to live in a time when technology is so advanced that they can test an infant, program digital hearing aids, and eventually perform cochlear implant surgery so that my totally deaf children can live life like a hearing child.  Cameron will most likely get his cochlear implants earlier than the other boys did, so his delay should be very minimal.  It all depends on how quickly he loses his hearing.

I am thankful that my kids have terrible hearing instead of moderate.  That will most likely sound odd to most people, but I can't imagine having a kid who didn't quite qualify for a cochlear implant, but hearing aids didn't help enough.  There is a fine line there that I couldn't handle.

I am including pictures of all 3 boys' first audiograms. Brenden was tested so late, his hearing was basically non-existent. On the picture, the x's are the left ear and the o's are the right ear. There is something called a "speech banana" that shows where the sounds of speech are found on the audiogram. If their x or o is below the sound, they are not able to properly hear the sound thus less likely to properly produce the sound. Also included in the picture are other common sounds.

 

Finding Cameron's results so early will be very benefitial and he may be able to avoid the huge delay we had to combat with Brenden.  But look at Brenden now.  He won't let anything stop him.

I also must say how glad I am to have my degree in Deaf Education.  The whole situations surrounding being admited to the program was amazing and inspired.  I knew it would be important in my life, but I have to say, I never thought I would use it as much as I do - every.single.day.  I had to take audiology and speech classes and I think that, above all else, these have been more important on a daily basis than anything else I could have learned.  I have been in the process of being prepared for these kids since I was a teenager and I can fully recognize that now.  No teenager sits in her weekly sign language class or a deaf ward with her whole family and thinks, "I might have deaf kids someday."  Or three.

A woman came to me at church on Sunday and said, "It never occured to me that something like this would bother you.  To me, it's the same as having a child with blue eyes and another with brown.  Then again, I never had a blue eyed child."  I was completely shocked and had no reply.

It occurred to me last night just how insane our family schedule is, I guess I had always looked at my own personal schedule and thought that was bad enough.  My mom called me when we were in Anchorage and asked me to make a video with our whole family.  It doesn't sound like a hard thing to do, but we still haven't all been together since then.  By the time we picked up our boys that night, it was 10:00 and we rushed them home to bed.  Doug left for work by 8:15 Saturday and was home at 7:45, after the kids were in bed.  Sunday, Doug was gone to work by 9:15 and the boys and I were rushing to get to church on time.  Doug was home a little after 7:00, in time to read a book to the kids and get them to bed.  Monday Brenden is out the door by 8:10 and Doug isn't home until 9:45, Tuesday Ethan is out the door by 7:20 and again, Doug isn't home until 9:30 or so.  Tonight, Doug is off work earlier, but he and I both have meetings at the church at 7:00 and Ethan is supposed to be in bed by 6:30 when he has school (since he has to be up at 6:55).  Thursday Doug works late again and then Friday morning, we all have to leave by 8:00 for Anchorage again.  Sometimes I look at our schedule and I am amazed. 

Doug has worked the last 5 Saturdays and 6 Sundays in a row.  I am pretty grumpy about it.  I did not sign up to be a single mom.

I have a whole much-more-fun-for-you-to-read blog ready to post as soon as I edit the videos.

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.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 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.Cameron 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.
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.

Cameron

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.