Thursday, August 12, 2010

Apraxia is the Enemy!

The first half of the day was very slow going. If I could drag out the word "slow" like the way I'm saying it, might make it clear how slow going Cale was. Maybe like, s-l-o-w? Hmm...anyways, he was so tired and didn't want to do anything! Psych was so great yesterday, but today it lasted about 2 minutes. It's just the roller coaster of progress. Even during RT he was so tired and not really wanting to do anything, but we did play UNO and he actually made a couple plays with little help from me, that really impressed us. The afternoon was a little better for him. The schedules were all changed around so, that made things a little off, but he actually did awesome for OT, which was moved from 10 to 2 and then he did great with ST. Patricia (ST) heard Cale laugh at me today which was so good! Ahh! I love when he laughs!!

Today was the Family Meeting. I was kind of dreading it all day, while still trying to be positive about it. I was expecting to hear what they are thinking as far as how long we'll be here and what they're thinking with Cale medically. Again, so far these kind of meetings have all been "bad news" kind of meetings, but things have changed lots for Cale, and I have to remind myself Who is in control. Well, they ended up saying they still are not sure what it's going to look like. The social worker said that Cale is changing daily, so at this point it's still too early. I am totally fine with no date or guesses as to what everything will look like. I am completely flexible and willing to take every day as it comes! It was a good meeting and I'm starting to become really close with all the staff. They are all so great here!

One of the things that we talked about in the meeting and then more in depth later with the Speech Therapist is the apraxia. Ugg. I hate that word. It's a battle that Cale is up against. It's a problem in every area of his recovery and it's so frustrating! Here is a definition from Wikipedia:
Apraxia is a disorder caused by damage to specific areas of the cerebrum, characterized by loss of the ability to execute or carry out learned purposeful movements,[1] despite having the desire and the physical ability to perform the movements. It is a disorder of motor planning which may be acquired or developmental, but may not be caused by incoordination, sensory loss, or failure to comprehend simple commands (which can be tested by asking the person to recognize the correct movement from a series).
This comes from Cale's injury not only being Severe Diffuse Axonal Injury, which is damage that occurs over a more widespread area, he also has very severe damage to his left frontal lobe. This is one of the reasons for the fight and struggle between the left and right hand. The Apraxia is just annoying to me right now. Everything he is doing involves the motor planning. I wanted to write some specifics about it, and a little more detail, so that you can all join with me and be praying against it! Other than it's another part of Cale's injury and it's all sad, right now I just feel like it's an annoying pest. Too bad a fly swatter won't help with it...

Cale and I read John 3-4 today. I know I keep saying it, but I LOVE getting to discuss scripture with him! John is an awesome book for basics and foundation. I was asking Cale questions about salvation and if he believes that Jesus died on the cross for him. I know that he believed all of it before, but who knows what he understands or remembers. I spent some time on John 3:16 and went through all of it, God loving him so much that He sent his Son to die on the cross to save him. Cale seemed to understand and agree with all of it. Another verse that I talked to him about was John 3:30 "He must become greater and greater, and I must become less and less." Such a humble verse. It's not a popular thing to become "less" but that's what we are called to do. I love how this verse is worded in the Message "That's why my cup is running over. This is the assigned moment for him to move into the center, while I slip off to the sidelines." WOW. I talked with Cale about how right now, all that we're going through-EVERY step in this recovery, how we need to step aside and let God shine through. It's all for His glory and it's going to be worth it.

I got out of the hospital for a few hours tonight! A group of wonderful ladies took me out to dinner. It was very special and my tummy is VERY full! It amazes me so much when I meet people that don't know me or Cale personally, but they are reading the blog and praying for Cale. I was talking to two of the ladies on the drive back to the hospital and one of them commented on how many people are reading and the other said that I knew, but really, I don't. I know so many of you are great about telling me, but so many times, I let thoughts of how it's been so long and are people really still reading? Are they still praying? It's a blessing to be reminded that yes, people are! Thank you!

I meet with the ENT tomorrow at 2:30 so please be praying. The ENT doctor took Cale's case to the tumor board today, and from what I had heard before, all the options that had been listed of possibilities of taking care of the tumor were all going to be going backwards for Cale. It's just not a fun thing to think about, but how great it will be for Cale once that's all taken care of. I know the process of doing that isn't going to be fun, but what a blessing once it's all gone! I named his tumor Gus.

I'm not sure if I've put this song on the blog yet, but it's set as my alarm on my phone so I wake up to it every morning :) I was reminded again by a discussion with one of the ladies of how even now, I know it's going to be worth it.
http://www.youtube.com/watch?v=BQVmR0jV52A

11 comments:

  1. I added your blog to my facebook so that more people can pray for Cale's recovery and for you as well Kathleen. You both inspire me daily.
    Diane in Washington

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  2. Good morning! I just wanted to confirm that, YES we are still reading and praying! Every morning as soon as my husband leaves for work, i head for my laptop with great anticipation, just to see what new thing Cale is doing! And at night, i report to my husband , and we pray. Cale has become a household name around here :) Every once in a while, my husband or I will bring up Cales name, and our company will ask, "who is Cale"? We explain and ask them to pray. So if anything, your support system is probably growing! As for the apraxia, we are definitely praying against that! "Therefore God has highly exalted Him and has freely bestowed on Him the name that is above EVERY name". (Even Apraxia) :) PHILLIPIANS 2:9 When apraxia is screaming in your ears, scream back, JESUS"! Know that you are never alone. Have a blessed day :)
    Lori/New Life

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  3. Hey Kathleen! My name is Julie Hales and I go to Amy & Adam's church. I sent you an email for Cale's prayer chain, but I wanted you to know that I still check your blog daily when I check Amy's blog and our family is praying for you both. (And now through you, I have started reading Katie & Ben's blog and praying for them!) I feel like I know you both, even though I have never met you. I can even hear Cale laughing in my mind when I read about it!
    My boys, 8 & 12, like to see his progress & love the photos & videos! It's good for them to see that sometimes bad things happen to good people, but it never means that God has forgotten or is not in control! You are influencing the next generation with your faith journey and I thank you for your courageous stand on the front lines of the battle field of life. You are one of my heros! Along with Cale, Amy, Adam, and now Ben & Katie too!
    Before my husband and I were married, he was in an accident and broke his neck. When I heard about it, I was in another state and the person who told me didn't have all the details. At that moment, any doubts I had about our love & commitment to each other were completely gone as I realized that with God by my side, I knew I wanted to spend the rest of my life by Ross' side come what may, whether he was a quadraplegic, a paraplegic or God healed him completely! I thank God that he had no paralysis at all but was thankful for the experience and the assurance of our relationship. Especially, since I would go on to spend the next 17 years away from my family on the other side of the world with Ross near his family in Australia. I think God knew that in the tough times I would need to know that it was Him that put us together and that I needed to trust Him through it all! We have now been joyfully married for over 20 years and have 3 wonderful boys! Maybe one day I will be able to meet you in person and I can encourage you with the details of our journey as you have done by sharing the details of your journey in this blog with me!
    BTW I loved the song and especially the CS Lewis quote at the end - "God, who foresaw your tribulation, has specially armed you to go through it, not without pain but without stain."
    I will continue to pray for you and will look forward to reading what amazing things God has in store for Cale & your future! I believe he has plans to use you in a powerful way!!! :D

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  4. JaimeKay/Tri-Cities, WA8/13/10, 7:24 AM

    I am just like those who posted above. I literally wake up each morning and can't flip my laptop open fast enough to see what Cale is up to each day (and you too). You are ministering to my heart soooo much. You are strong, and I know the Lord has equipped you with an amazing ability to encourage others (not just Cale, but so many others too). I just watched the youtube video/song you have on your phone and now I've added it to my "favorites" on my laptop. I may have missed it (though I know I haven't missed a single day of reading your blog since I first heard about Cale), but can you share the links to Adam and Amy's blog and Ben and Katie's as well? I am praying for wisdom and discernment for the tumor board. My sister has stage IV metastatic breast cancer and has gone before the tumor board a few times for brain tumors. It's a bit nerve wracking, but as Twila Paris sings, "God is in control!"

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  5. Still reading, believing, praying, hoping, thinking!!!
    We love you...What GREAT things God has done...!!

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  6. My name is Kary and your blog is the first one I check every morning, anticipating something new Cale has done. As I leave the computer I pray for your day. Your trust in the Lord encourages me and the love you have for Cale makes me smile.

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  7. Kathleen,
    I was reading Psalm 13 today and I feel like it goes perfectly with what you have written today. I know there are so many good moments when you can visibly see improvements and then there are not so good moments like you have described when Cale is tired and you wonder about setbacks.

    I copied the Psalm in here from The Message but I liked it in the NIV as well. I've added my prayers in here for you to see as well. I LOVE YOU and continue to pray!!!
    Love,
    Christina

    1-2 Long enough, God— you've ignored me long enough.
    I've looked at the back of your head
    long enough. Long enough
    I've carried this ton of trouble,
    lived with a stomach full of pain. (Lord, help Kathleen to never feel that you've ignored her. As David probably felt up against so much, I'm sure she feels too.)
    Long enough my arrogant enemies
    have looked down their noses at me. (God, I know those enemies - the science that says XYZ is expected, the apraxia, the tumor - they have looked on Cale and tried to defeat him. They have weighed on Kathleen's mind and heart.)

    3-4 Take a good look at me, God, my God;
    I want to look life in the eye, (Thank you God for how Kathleen and Cale are staring this thing in the eye...they are not running, they are not hiding...they are soaking in YOU to face this enemy.)
    So no enemy can get the best of me
    or laugh when I fall on my face. (God, THIS IS THE TRUTH - verses 1 and 2 are our perspective....I've, I've, I've...but the truth is that no enemy can get the best of me - no enemy can overcome me!!! Give this mindset to Cale each day as he works to relearn, regain, and understand new things. Give this mindset to Kathleen as she stands with him.)

    5-6 I've thrown myself headlong into your arms—
    I'm celebrating your rescue.
    I'm singing at the top of my lungs,
    I'm so full of answered prayers. (God, THANK YOU that I can see how Kathleen has thrown herself into your arms. Thank you that we can sing to you despite our circumstances, whether they seem good or bad. Thank you that we can always say YOU HAVE BEEN GOOD!!! Thank you for all the answered prayers since Cale's accident. Will you bring more? Will you increase our faith more? Will you help us see your rescue each day? Thank you for not letting us fall, but for coming to our rescue!)

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  8. Heather Favret8/13/10, 4:25 PM

    I read every night! I look forward to seeing how Cale's and your day was! I pray every time I think of you guys!

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  9. Been following for months and continue to read every day! Always in my prayers!

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  10. *RAISING HANDS* Still Here!!! :D I'm going to add your blog to my facebook too! Great idea! I love you guys. Look for an email from me, coming tonight. :)

    Sarah

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  11. Kathleen, my name is Sharon. My daughter and I attend church with Mike and Rachel in Heppner. I read your blog every night before I turn in. You are an amazing woman. Your love of God and Cale is a real inspiration. You are always in my thoughts and prayers.

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