Monday, February 21, 2011

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.

15 comments:

Jeremy said...

Erin, All I have to say is you are one powerful mommy and you have it in the bag. Don't think I say that lightly, you guys are awesome! I also know there isn't much you can say, because after living with Doug for most of my life, living next to you guys for years, and living with you for 8 weeks, we just know you, and support you even though you have little need of that. Keep your chin up, it always seems blackest before the brightest dawn.

Jeremy and Laura said...

Erin, you are such an amazing mom. Your boys are lucky to have you. I wish I could give you a big hug.

Alicia J said...

I'm sorry Erin. I wish I had some profound and inspring words of encouragment - unfortunately I don't. But I love you and will be praying for you and your sweet little family.

Landon and Mandi said...

You know when I had Bren. I wanted to be a mom just like you because you are amazing!! Wish I was there to give you a hug! We are thinking about you and love you guys so much!! You are incredible and the Lord is blessing you and will take care of you guys!!

Celeste said...

I'm sorry. I love you.

Emily Hurtado said...

Love y'all.

Marinda said...

Erin, I think you are a wonderful brave mommy. You have a big responsibility with those boys and we think you are doing awesome! We love you and we pray for you. You can do it!!

Amy said...

Sweetie, take care of yourself. You've been through a lot and I know the road ahead will be filled with challenges. You're busy ministering to your family (and you're amazing at it) but don't forget about yourself. Stress can have a lot of major physical effects, that can really get in the way of mothering (and life), so I hope you'll find a way to take some time each day for YOU and your own body and mental well being. You deserve it, and so does your family.

...And here I'm thinking of calling it quits on more kids because of POTTY TRAINING. Ha.

Anonymous said...

Hey dudes,

It is midnight and I am just finishing my homework. Major Bummer that Cameron has to get implants, but The support system is already established and the miracle is that you can still know he will have perfect hearing capabilities down the road. That whole genetic cross over thing is a bummer. But if anyone can do it You guys can. We think your awesome and cant wait for you to come hang out next month.
Check you lata gat'as.
Greg Kirsten and Paxton

Anonymous said...

However dark the Thursday, Sunday will always come.

Anonymous said...

Hey Beautiful! Keep smiling- I know its hard and not what you really feel like doing But just do it! You are so amazingly strong! When smiling gets to be to much though, crying is fabulous and Heavenly Father knows you and he knows what an incredible Mother you are. I've seen you in situations that any other mother would implode or burst into flames about and you came through laughing and smiling! I know that this is different but remember when we were going to take our big Boehme Family photo and Eathen spewed everywhere in my car, on the seat, on his seat and his nice new shirt- I was amazed at the fact that you smiled and I remember what you said and it always makes me laugh when things happen! You said "Well, it doesn't matter how much you plan or prepare for something- there always has to be something big that go's wrong" (or something along those lines) I just remember you holding vomit in your hands and laughing because that's all you could do! Remember to stay happy because Heavenly Father knows and he will help where you let him! SMILE!!! I love you and think about you guys often! I can't stress it enough so at the risk of being redundant- SMILE AND LAUGH AND BE HAPPY- p.s. if that fails then cry it out and throw something (5 minutes of that and it makes you feel a little better) Love you- Kirsten

Anonymous said...

here is a good laugh

Thanks for the breast hat dad!
-How to train your dragon

Greg

The Porter Family said...

I wish I could say something and make it all better. :( I want to echo what everyone else has said-you are such an amazing mom and person. I know you can do this and get through the tough times. I wouldn't worry about another baby right now. You will know when the time is right if it's supposed to happen. Move to Utah and I will make you cinnamon rolls, k? :)

Anonymous said...

I cried the day you told me about Cameron, and I'm crying now. I'm not a very good bestie. I didn't even know about your ulcer. I may be single and have 4 kids to chase around, but I'M HERE! YOU'RE MY BEST FRIEND! Use me. That's what I'm here for. I love you!

Anonymous said...

That was from me...Tiff...by the way. :P