Andres – Chiari 1 Malformation Update

Sorry for the lag in posts – I know I’m falling behind.  I’ve just so quickly gone from a  laid back, backwoods, homeschooling daydreaming (okay, daydreaming is pushing it) mom to an on-the-go mom, running from swim lessons to doctors appointments and then back for therapy appointments.  I feel like a soccer mom, and there’s no trophy at the end of the season.  No trophy, but hopefully a healthy boy who is no longer limited by his headaches is right around the corner.

Andres is back to complaining about his headaches almost daily, but no nosebleeds and very few headaches are requiring even ibuprofen.  Praise God.  Every headache that comes, though, reminds me that Andres’ condition is ever-present and surgery is on the horizon – August 7th is the date.   How I long to hear him say, “Mommy, my head doesn’t hurt anymore.”  Oh, let that be the outcome.

Andres had the occupational therapy evaluation, and again, nothing too out of the normal was the impression I got.  I watched the evaluation, and his coordination and fine motor seemed pretty good, although he did struggle with a lot of visual processing and perception.  I just don’t know what is normal for his age.  I’m still waiting for test results from the therapist.  She said she probably wouldn’t have a written summary; but I think I’m going to press for one rather than just a face-to-face.  I guess ideally I’d like to have both.

Of more significance is that Andres saw the neuropsychologist (I’ve been calling him a neuropsychiatrist – wrong) on Thursday.  Dr. Titus met with us for about an hour to listen to our concerns about Andres and explain the testing to us.  Andres underwent about three hours of testing in his office, and now we wait for the report.  The report will tell us where Andres’ weaknesses lie in attention, executive functioning, visual perception, auditory perception, learning issues, intelligence, and other things in the cognitive range.  Dr. Titus said what he is especially looking for is the connection between his brain malformation and any cognitive difficulties he is having.  I loved the fact that the good doctor is familiar with large homeschooling families and even homeschooling families with children with Down syndrome.  I’m always a little wary of how we are perceived by the professionals we deal with.  I suspect a large number of them feel every child is best served in an institutional setting such as in the public schools.  The more these people have been exposed to homeschoolers, the less I am concerned about their preconceptions, because I find homeschoolers tend to represent themselves fairly well.  Yay. 

I really liked the way Dr. Titus, after meeting with us, added another test  to the batch he was planning to give to Andres, since some of what we talked about indicated to him that Andres may have some attention issues that needed to be looked further into.  There’s nothing like a professional who changes the plan a little bit after discussion, indicating they were deeply interested in what the parents have to say.  Yay again.

Yesterday Andres had his CT-scan, which will tell Dr. George if he is going to have to do a cervical  laminectomy (spine stabilization) as well as the craniectomy and decompression or just the craniectomy and decompression.  We’ll get those results Monday.

Monday is when reality hits.  We have our last preoperative appointment with Dr. George, the neurosurgeon.  This is going to be the nitty gritty – the risks, exactly what the surgery will entail, what the hospital stay will look like, recovery; in other words, reality. 

This week has been the week my emotions have started to get the better of me.  As our friends are starting to come forward to offer practical help, I’m starting to envision what is actually going to happen, what it will be like waiting for Andres to come out of surgery, waiting for him to wake up, sitting by his bed as he struggles with postop pain, being away from my other kiddos and worrying about how they’ll manage.  It’s hard. 

There’s this one thing that has been bothering me a lot.  A few months ago, out of nowhere, Andres declared he had a favorite song.  No problem, right?  Well, his favorite song just happens to be “I Can Only Imagine.”  My lovely stepdaughters just happened to sing this song at Andrew’s and my wedding.  Awww.  Sweet it’s his favorite song.  Except, well, here are the lyrics to “I Can Only Imagine” as performed by Mercy Me:

I can only imagine
What it will be like
When I walk
By Your side

I can only imagine
What my eyes will see
When Your face
Is before me

I can only imagine
I can only imagine

[Chorus:]
Surrounded by Your glory, what will my heart feel
Will I dance for You Jesus or in awe of you be still
Will I stand in Your presence or to my knees will I
fall
Will I sing hallelujah, will I be able to speak at all

I can only imagine
I can only imagine

I can only imagine
When that day comes
And I find myself
Standing in the sun

I can only imagine
When all I will do
Is forever
Forever worship You

I can only imagine
I can only imagine

Surrounded by Your glory, what will my heart feel
[- From :http://www.elyrics.net/read/m/mercyme-lyrics/i-can-only-imagine-lyrics.html -]
Will I dance for You Jesus or in awe of You be still
Will I stand in Your presence or to my knees will I
fall
Will I sing hallelujah, will I be able to speak at all

I can only imagine
I can only imagine

Surrounded by Your glory, what will my heart feel
Will I dance for You Jesus or in awe of You be still
Will I stand in Your presence or to my knees will I
fall
Will I sing hallelujah, will I be able to speak at all

I can only imagine

I can only imagine
I can only imagine
I can only imagine
I can only imagine
I can only imagine

I can only imagine
When all I will do
Is forever,
forever worship you

I can only imagine

I haven’t talked to Andres about possible complications of surgery.  He just knows what they are going to do and why they are going to do it and that we are hoping this will make his headaches go away.  He hasn’t expressed any fear, so I have to wonder why the new favorite song.  On the one hand, it’s great when our kids are thinking on spiritual things; but to be honest, right now I’d rather Andres to be thinking about swimming pools and climbing trees than going to spend eternity with Jesus anytime soon. 

Maybe I’m selfish.  I’d like my children to outlive me.

Andres does not have my permission to be cutting out early.  And all he says he is worried about right now is whether I’ll let him keep my iPad while he is in the hospital.  As it should be, as it should be.

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4 thoughts on “Andres – Chiari 1 Malformation Update”

  1. Prayers as you enter this journey! As a mama who has been down this road, it is hard to even comprehend handing our kiddos over into the docs hands. I am always comforted knowing they are resting in God’s hands always! Love that he loves this song! As scary as it is for mama, what a testimate that he wants to some day relish in God’s Glory! Praying that this is in the very distant future and that your heart is at ease! Hugs from one Chiari mama to another!

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