Friday, October 18, 2013

Breakdowns, Torticollis and Helmets

I'm going to start with a back story here: our doctor of 10 years (who has been through everything with us: infertility, surgeries, pregnancies, deliveries, adoptions, shots, baby blues and the regular physicals, found out he had colon cancer two years ago.  He was young, 42 but an x-ray showed some spots and they caught it early.

We thought for sure he would beat it.  And so did he.

Fast forward to Jared's birth and adoption.  We took Jared in for his first physical.  Doctor L. looked a little more sick than normal.  He said he felt fine, but he didn't look it.  Jared was healthy.

We went in for our two month with Jared.  Doctor L. looked even worse.  At about a month I had noticed Jared's little neck wasn't working as it should.  His head hung to one side and he couldn't lift it up...at all.




I took this concern with me to Jared's two month appointment.  Doctor L. looked 20 years older.  He shuffled, his skin was thin and his hair was gone.  He looked awful.  Doctor L. told me it was nothing to worry about.  As he was more worried about Jared's head size and that he may have hydrocephalus.   I trusted his judgement and moved on to worrying with watching for the symptoms of hydrocephalus.

And boy did I worry.

By Jared's four month, Jared's little neck wasn't getting better.  So I started to do exercises with him.  His neck started to get a little stronger.  We tried to get him to do tummy time, but he learned to roll over on his back.  He wouldn't do tummy time longer than 2 minutes.  He loved to lay on his back and play with his sisters.  And then we started to notice his cute little head was becoming flat on one side.  I didn't realize it had anything to do with his neck.  It did.

Two more months passed and now I was more worried than ever, as Jared still wasn't holding his head up.  He wasn't sitting he wasn't standing.  At our next appointment with Doctor L.,  Dr. L. looks even worse than before.  But he still said Jared should be fine.  "He's just a big boy, he may be a little slow".

At this point, I started to feel that Dr. L wasn't right.  He was so sick.  Maybe we weren't getting the right diagnosis.  But I had NO idea what was wrong with Jared, so I didn't know where to turn.




That same week, my mom saw on the the news a report about a disorder called, Torticollis. (http://www.babycenter.com/0_torticollis_10912.bc)
I read it, and new without a doubt that is what Jared had!   I made an appointment with a physical therapist right away and sure enough, I was right.  I was crushed.  Most infants are treated much earlier than Jared is being treated now.

And now we are having a very difficult time correcting his neck and he will have to where a little helmet for the next few months because of his flat spot.  And because Jared is almost 9 months, the helmet may or may not work.

I am devastated.

I made an appointment with our Dr. L once again, but we got an email before we could go, letting us know that Doctor L. would be retiring from his practice.  We were heartbroken.  And last Saturday our sweet doctor of ten years died.

Our sweet doctor was sick.  And so we did not receive the very best care.  I do not want to disrespect him in any way...and I mostly blame myself for not being more adamant about it.

This has been a very difficult thing for me.  And today after we found out that our insurance won't pay for the helmet and that it may not even work, I broke down.  I broke down and cried for a long time.  I work with my little guy every day with exercises and stretches (he hates them) so we should be able to get him up to par...but it is amazing how such a little thing can cause such pain and worry.  I have friends with kids who have cancer.  I have friends who have lost their child to death.  This is such an insignificant little issue compared to those...but I feel overwhelmed all the same.

So when you see our little guy sporting his new helmet in a week or two,  just know that it was a long hard journey for us to get here...I pray that he will be able to make a full recovery and that his little body will be made strong.

I love my little guy.  I just wish I would have known what to do, sooner.

Lots of love,
Niki

5 comments:

  1. I know he will do it. You are a strong and amazing woman. He is lucky to have such an awesome, caring, and loving mom.

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  2. Oh sad! I am so sorry. I know that it is not easy. The good news is that you are not alone-- you have a lot of support and we all know that you are doing all you can. I can maybe offer some hope though....
    Haven had 2 flat spots that finally got bad enough for a helmet when he was about 9 months. He wore it for 3 months and now you would never know. I should send you an invite to my blog so you can see pictures. Don't give up :)

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    1. Thanks! And I had no idea Haven had one...cute little man!

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  3. Seriously such a cute little boy! Your pictures on fb make me smile. Thanks for sharing. I can tell an underlying strength to your message, a strength that you give of yourself 100 percent for your kids, the love you have for them in wanting them to succeed. It's an incredible and difficult journey, this stage of our life. It's nice sometimes to pause and cry or laugh. Keep going. You're doing a great job

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    1. Thank you, Laura. Sometimes we all just need to cry.

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