Update

I just wanted to give you a quick update on Chloe.
As you may have been aware, Chloe has continued to regress in her walking over the last 6 months and longer. It continues to get harder and harder for her. Doctors have no clue why. Their best guess (and the best case scenario) is that her muscles have not been able to keep up with her growth spurts. Acting on that assumption, we have been doing some pretty intensive physical therapy and stretching/strengthening exercises. She also received some botox injections last week to help loosen those muscles for a few months. Her walking may very well get worse before it gets better– it’s all part of the process.
Truthfully, the onset of puberty may also be playing a role in this whole thing. We just don’t know.
Also, yesterday she failed her swallow function study, meaning she can no longer drink thin liquids. She aspirates thin liquids (water, juice, skim milk)– they go down into her lungs instead of her stomach. So we will need to go back to thickening any of those liquids that she drinks.
We haven’t had to thicken liquids in several years. It makes me mad, actually, that we have to go back to doing that. It irks me that something Chloe had overcome and beat has come back to cause problems. I threw a couple of emotion-spewing temper tantrums yesterday after the news, very much like a child would throw a tantrum. I hate it.
The good news from the swallow function study is that she coughed when she aspirated. That is an improvement from when she was younger — she was a silent aspirator; thus, we never knew when she aspirated or not. So at least she has a better cough reflex.
In all honesty, it is troubling that she has regressed in both of these areas at the same time. We are just praying that whatever is going on in her body can be stopped and can be reversed. Feel free to join us in praying for her if you want.
Just another example of life without a diagnosis… Is this the next step in the progression of her unknown syndrome? Or is this simply a reaction to puberty that she will be able to overcome? Or what is it exactly? and what’s the best way to treat it?
Since I’m a big don’t-own-it-til-it’s-yours person, we will just continue to work hard to combat all this stuff. Hopefully she’ll beat it. She is an amazing kid and the hardest worker I know — she definitely endures through the pain. Although she’s never said the words, I think one of her mantras that she knows is truth is “No pain, no gain.”
Keep it up, kid!
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11 responses to this post.

  1. Posted by Robert & Linda Mastin on October 29, 2013 at 10:14 AM

    Kelly,

    I am glad that you are sending your blog as email now. I spend very little time on the computer and seldom look at Facebook. Thank you for emailing the blog to us.

    We are sorry to hear that our precious Clo is regressing but with you have faith in her will to always do the best that she can. As you are probably aware, we have never stopped praying for the best for Chloe and for love and strength for you and Paul. We have your back on that!

    Robert enjoyed the “male” time over the weekend. That was one fast, hard trip!

    Love you,

    Linda

    Sent from my iPad

    >

    Reply

  2. Posted by Julie Williams on October 29, 2013 at 12:39 PM

    I am sorry to hear about the continued regression in a couple areas. I know that has to be so challenging! I would have been kicking and screaming a bit too. May you be encouraged, experience breakthrough and strength for the journey. Stay strong mama! You and Chloe are simply amazing!

    Reply

  3. Posted by kerrie wenzel on October 29, 2013 at 12:56 PM

    This is one of those LIFE verses for me. I am sure you have read it, it just came to my mind after I read your blog. Praying for your Chloe today

    2 Corinthians 4:16-18
    New International Version (NIV)
    16 Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 17 For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. 18 So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.

    Reply

  4. Posted by Anita Morrow on October 29, 2013 at 3:24 PM

    Praying

    Reply

  5. Kelly,
    I love following your blog. Your honesty is refreshing. I think you are an amazing mom!!! And it blesses me to hear moms talk about real life, overcoming disappointments, and celebrating victories. Please know that we are praying for you and Chloe. We say to this mountain, “BE REMOVED! and cast into the sea!!” We also say NO to regression and YES to healing. Love you!! Terri

    Reply

  6. Posted by Liesl on October 29, 2013 at 9:20 PM

    Prayers definitely For Chloe And All Of You.

    Reply

  7. Posted by Melissa Coco on October 29, 2013 at 10:35 PM

    Praying for you guys. I am angry, too. Angry enough to pray about this – alot – and tell the enemy “hands off!” along with you guys. If you need a place to vent.. please call. Love you guys. Love that Chloe!

    Reply

  8. Posted by Annette on October 30, 2013 at 7:50 AM

    You all are in my thoughts and prayers

    Reply

  9. Jesus please bring answers. Please bring victories. Bring along just the right support. Bring hope and encouragement and peace in the midst of all of this. In your name I pray.

    Reply

  10. Posted by Randi Mackey on October 30, 2013 at 10:38 AM

    Thank you for the update Kelly. One of my dear friends has a child with many issues and no diagnosis. It is soooo hard. I will be praying for you and Chloe and I think you are a great mom!!! And Chloe sounds pretty awesome herself! Love you!!!

    Reply

  11. Posted by Jerry Summy on October 30, 2013 at 9:40 PM

    Praying for Chloe, You and Your family!

    Reply

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