Tuesday, December 6, 2011

Kylee’s New “Bracelet”

I mentioned a while back about doing constraint induced therapy with Kylee. After doing tons of research and talking to many people about the process Bret and I decided to do it. Although most of what I read is the therapy done on adults after a serious brain injury, I did see several stories on the constraining done with small children. Every single story I read was successful, which was super encouraging, I heard of not one case where the patient’s condition didn’t better from the process.

A little background for those who don’t know, Kylee suffered what’s called IVH (intraventricular hemorrhage), also known as brain bleeds, shortly after birth. IVH ranges from grades 1 to 4, 4 being the worst, usually causing long term damage. Kylee suffered a grade 1 on the left side of her brain and a grade 4 on the right resulting in the left side of her body not functioning exactly as it should and causing her some slight delays. The medical terminology for her condition is Spastic Hemiplegia Cerebral Palsy.

Kylee’s occupational therapist put in the order for her new brace and  yesterday we introduced her new “bracelet” to her and began       Day 1 of an 8 week process. The brace is made of neoprene and has a splint in it not allowing her any movement from just below her elbow to her finger tips. By keeping her right arm (the “good” arm) constrained, her affected arm/hand/wrist is  being forced to do all of the work. She has to wear her bracelet 8 hours a day (keep in mind she sleeps an average of 16 hours in a 24 hour period), which means basically the entire time she’s awake, besides baths.

Mrs. Regina, her new OT, came yesterday and I had already pumped Kylee up about wearing her new pretty bracelet. She was stoked and was ready to rock and roll when Regina got here. She did well for the first few hours of wearing it but, as I expected, it got old pretty fast. Today, Day 2, Kylee is extremely frustrated and asks to take her bracelet off throughout the day. Although I know these babies are doing phenomenal, and I am so so glad for that, I’d be lying if I said a small part of me didn’t feel a bit of guilt for not being able to carry them longer. It’s time like these, when they struggle with the long term issues from their prematurity, that I wish I could go back in time and have a re-do at the whole quad pregnancy thing.

Here’s Kylee with her new bracelet last night before bed…

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Today, not quite as happy, but hanging in there. So hard to explain this type of thing to a two year old…

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The everyday tasks for her are proving to be extremely difficult. Eating is by far the hardest but she’s done well… if you know this girl, you know there’s not much that will stop her from eating her food ;)

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Although I don’t expect her left hand to have perfect function after the 8 weeks, I am confident we will see good results. I’m sure wearing her new brace will get easier for her but in the meantime, this lil’ girl (and this mama) could really use some prayer to help us cope with the new struggles!

Kylee Mae, Mama loves you sweet girl <3


  1. Prayers and love for y'all! She's amazing and you carried them as long as u safely could...don't you dare short change yourself for the wonderful job u did. - Jac Tubre

  2. Breaks my heart to see this little angel cry. But, I praise the Lord for giving her to us and giving her the strength and determination within her sweet personality. You all will get through this trial too with the love and support of family and friends. I trust the Lord has a very special purpose for Kylee, Brody, Korbin and Baxlyn and I look forward to seeing more miracles in their lives! Love you all, Sis (AKA - Aunt Beth

  3. P.S. Ditto to Jac Tubre's post! Love, Sis

  4. Huge prayers!!! But also extremely inspiring. I have wondered about doing this with JuJu. I will be asking next time at Scottish Rite.
    Love you!!!

  5. NO GUILT girl on holding those babies in!!!! You did EVERYTHING you could do.I watched you day in and day out in LD 13, following ALL the rules. prayers for you and your family. -talina

  6. As a pedi OT and parent, you are doing a wonderful thing for her at such a young age. I know it is frustrating but hang in there. The results will be great!! I have had a similar case and the student is know in 3rd grade and can write her name with her affected hand. Her parents made her use that hand from the beginning and her brain scans now show how it basically rewired itself to make that arm/hand work. -Misty

  7. I totally agree with all the other comments, you definitely did a wonderful job carrying these sweet babies, and you and Bret are awesome parents! Just looking at the sweet pictures you have posted here, you can see she is already trying to use that left hand. We will praise God in every storm in their lives and if this is the worst storm she ever goes thru, we will look back and be so thankful she went thru it. Love you all so much, Mom/Nana

  8. Prayers coming your way. She may be frustrated in the beginning but she knows how much you love her and that will help her through.
    -- yet another therapist who loves to read your blog!

  9. I want to thank you so much for sharing this part of your journey. I have BG twins born at 24 weeks. My little girl (Karsyn) had bilateral grade IV IVH's. She has pronounce weakness on her leftside as well. She is 21 months and I know we are headed and have already begun to discuss restraint therapy. It is so reassuring to see and hear your honesty about this!

  10. Oh my goodness that picture of her crying broke my heart! :( Poor girl! BUT it is 100% what is best so I will be praying for her (AND YOU! :))

  11. Happened across your blog and so glad I did.. Kylee is so beautiful. I love all the pics, cept the one with tears :o( Poor baby girl. YOU, Mom, are just as amazing as Ms. Kylee and together ya'll will get through anything this life throws at ya'll. Thanks so much for sharing. I was mom to a daughter with spastic quad cp for 27 years before God called her home this past May. I know of the daily struggles you face and I'm so glad to see Kylee is doing so well. God bless you and Kylee. If you ever want to connect with a large network of other CP families, please consider visiting us @ Cerebral Palsy Family Network. We love hosting guest bloggers and would love for you to do a blog for us on your ongoing experience with constraint induced therapy, and to share Ms. Kylee with us! You would be an inspiration to so many. Love and prayers and best wishes. Looking forward to following Kylee's progress, so please KEEP WRITING! :o)
    You can also find us on Facebook and Pinterest :o)


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