The House of Doo

The House of Doo

Tuesday, February 5, 2013

Neurologist Visit Update

Yesterday was Colt's first visit to the neurologist, Dr. Miller.  I'll try not to get into how I felt about the guy at first, but I left happier than when I first got there.  Long story short, he didn't have a good "bedside manner."  He went over Colt's medical history and his developmental history, watched him walk, and made him lay on his belly on the floor then get up.  So much happened that I am feeling a bit scatterbrained, so I hope my writing will make sense. 

Dr. Miller definitely thinks there is a problem neurologically and that he isn't "just stubborn" like people keep saying.  They judge that by how many "red flags" someone has.  For example, Colt getting nystagmus and strabismus 6 months after he was born rather than being born with it is a big red flag.  If you remember, we had an MRI done to check for brain tumors at Vanderbilt because of this being a red flag.  The fact that he was such a late sitter/crawler/stander/walker was another red flag.  The surgeries not working for him when they normally work for others is another flag.  Our opthalmalogist told us then it was a brain issue, not an eye muscle issue, you may recall.  Now with the speech delay, there is another flag.  The last one is the size of Colt's head, BIG red flag.  We've always kind of joked about it, but turns out, it was very concerning to the neurologist.  He just kept bringing it up.  So there is our group of flags.  When there is only one or two flags, they usually don't do anything about it, but since he has so many, they are sure there's something causing it. 

This leads us to the hard part.  Figuring it out.  They asked us lots of questions, me specifically, about anything that could have happened when he was born or while I was pregnant.  I told him every detail of my pregnancy when asked and he got hung up on the fact that I had polyhydramnios.  This means that I had too much amniotic fluid when I was pregnant with Colt.  I saw a high-risk doctor to monitor it and monitor Colt because he (and his head!) were measuring so big.  They thought maybe Colt was having a kidney problem which was causing the polyhydramnios and they expected it to show when he was born, but that wasn't it.  Dr. Miller acted as though the polyhydramnios was related to Colt's problems, but would never come out and say it without knowing for sure. 

Dr. Miller said this next part is like solving a mystery.  The problem could be a number of things.  It could be that Colt's brain/nerves had not myelinated quickly enough.  It could be some kind of thyroid/liver problem (that seems far-fetched to me, but I'm no doctor.)  It could be some type of syndrome that Ryan or myself are carriers of without knowing.  It could be anything. 

Yesterday, the doctor sent Colt to the lab to have blood drawn.  Not the finger-prick kind, this was a big fat vial of Colt blood and it made me hurt to see it.  They will test for muscle enzymes, liver enzymes, thyroid problems, and a few other things.  They also scheduled an MRI for two weeks from today, February 19th.  I hate that because they'll have to put him to sleep again.  The heavy, deep sleep, tube down the throat kind of sleep, like he had at Vanderbilt.  They also referred us to a geneticist to have me, Ryan, and Colt all tested.  This could help us find something that we are carriers of but are unaware, but it could also help us to know if we'll pass these problems on to the next child.  This could be very interesting or very scary!  Ha.  ;) 

So, this is where we are now.  More testing, no answers, lots of waiting, but at least there is a direction.  I don't know if I feel better knowing that Colt isn't just being stubborn and there is something going on, or if I wish he was just being stubborn.  I have thought for a while that he wasn't just stubborn because of how frustrated he gets sometimes when he tries to communicate.  When people told me "Oh, don't worry.  He'll talk when he's ready." I wanted to scream because I knew it was more than that.  I know they were just trying to be helpful, but it frustrated me too.  Now I KNOW it is more and I don't know how I feel.  I suppose that's normal though.  If you'll just continue to keep us in your prayers, particularly on the 19th as Colt is put to sleep yet again, we would appreciate it so much. 

No matter what happens, we have a beautiful, happy, smart, funny, and loving little boy. 



Colt loves his cousin, Tanner.
Mommy and Colt dance party

Colt loves his cousin, Tucker, too!
Story time with Daddy. 
He hated the fingerpaints. 
Cutie!!  He loves glasses!
 

4 comments:

  1. He is definitely a beautiful boy! My heart goes out to you; I can't imagine what you're going through, knowing there's something going on but not being able to figure out what. I love reading your updates and seeing Colt's progress, and I pray for you guys often. Wishing you the best!

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    1. Thank you so much, Summer. That means a lot. :)

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  2. I just said a prayer for you and I will continue...I hate that you and Ryan are having to go through this, but like you said no matter what he is happy, handsome, smart, and loving! :) Praying for the doctor's wisdom and technology, you and Ryan to be covered in peace, and Colt to continue to be COOL! ;)

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  3. Haha, thank you, Jessica! We appreciate your prayers. :)

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