Wednesday, July 22, 2009

Hard Day

Because Collin was such a trooper yesterday and because his medicines are really making him beside himself, we decided to let him do whatever the heck he wanted today. No therapies, no forced mouth feeds - only what he responded well to. This is a picture of his activity of choice, although receiving hand and feet massages was a close second.

Collin is still refusing to open his eyes even when he is awake and spends most of his waking moments in a state of total agitation, kind of growling and wringing his hands. As you can imagine, this is extremely hard for us, since we get almost zero interaction from him and feel helpless to comfort him. We're hoping that as we figure the meds out this will subside.

The other tough part came when Collin had a long episode of spasms this afternoon, intensified by the fact that he started to shake after each one; this is something he's never done before and it scared the crap out of me watching it happen. It's amazing how three minutes can totally change the rest of the day.

On a side note, Collin's neurologist has ordered a PET scan and we found out today that there is nowhere in Louisville to get one done, so we'll be trekking to Cincinnati sometime soon to figure out more accurately how his brain is functioning and where the source of the spasms might be.

Of course, no day is totally devoid of joy, thanks to the goodness of our God. We had a wonderful visit with Nana, including lots of singing, nursery rhymes, and 'running', and Kyle's dad (who I think would make a great "Papa" but I'm letting him pick his own grandfather name) brought us pizza and stayed for some cuddles with Collin and conversation with us.

2 comments:

  1. Thinking and praying for you guys tonight. Love the site, thanks.
    - Shane W.

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  2. I've been praying for all of you since Jenny called about Collin's series of spasms yesterday; especially about finding the right medicine for the job. Sent the prayer request out to the prayer chain at church too. Lots of people are praying.

    Love you guys. Please give Collin a snuggle from me.

    Do you have this one on your scripture ring? Zephaniah 3:17 - (That last part reminds me of what we do with Collin :-)

    Love,

    Aimee

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