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…

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

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 ;)

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