Thursday, February 6, 2014

Our Determined Daughter {Kylee Mae}

If you’re a regular follower of our blog, you know that Kylee was diagnosed with Hemiplegia Cerebral Palsy at 11 months/8 adjusted. If this is new information, you can learn more history here and here. As we’ve been told by many docs that it would, her conditions are slowly getting worse over time. Her left leg, ankle & foot are our main concerns at this point in time. Kylee’s left foot has always turned inward and unfortunately an AFO (brace) won’t help correct it’s positioning due to her entire leg/hip being involved. Below is a picture of the bottom of her feet to give you a close look. Her left foot is also slightly smaller than her right (very common with Cerebral Palsy) as the bones often develop and grow at different rates. Her left foot fits a size 10 shoe and her right is a 11.5.

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More pics to show the inward turn of her left foot…

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Not only is her foot turning inward more than it has in the past, she is now walking on the outside of her foot as well. It doesn’t seem to bother her at all but it looks awfully painful watching her run and it looks as though her little ankle could snap easily. As she runs, her body tenses up on the left side (arm and leg) causing that foot to turn inward even more. She ends up literally hopping over her left foot with her right.

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(Click HERE to see a short clip of her run. Excuse the poor quality.)

Over a long period of time walking & running like this, her condition will likely worsen and could affect her overall posture, balance and spine as well. We recently met with a new neurologist, Dr. Acosta, at Cook Children’s in Fort Worth and plan on doing several more rounds of Botox on both Brody & Kylee, hoping to get deeper into the muscle in order to loosen things up to allow good stretching. Dr. Acosta also strongly believes Kylee has Tibial Torsion which is where the tibia/shinbone is rotated out of position. Kylee has also been referred to an orthopedic surgeon there at Cook Children’s to further discuss the severity of it all and possible treatments for her left foot. Surgery is sometimes an option to help correct a condition like Kylee’s but as always, it comes with risks. I’m trying not to stress the surgery option until we meet with the orthopedist next month.

Overall Kylee has a GREAT attitude and handles having a disability very well. Lately she’s been asking more questions about her left foot, her left hand, why she and Brody have to see so many doctors and why Korbin and B don’t. She sometimes asks why she can’t do certain things that Baxlyn can without falling and why she can’t walk in little princess heels and other cute shoes like Baxlyn. It hurts my heart as these are just some of the beginning realizations she will come to but yet I’m happy she handles it well. Sometimes it’s hard trying to explain such things to a not quite five year old, but I try. I desperately try to find that perfect balance between being honest and open with them about their birth and scaring them into thinking there is something “wrong” with them. I want them to know just how strong they were (and are). I want them to know that God has a plan for them. I want them to know that with determination they can do anything, despite a disability or diagnosis . I want them to understand some day just how PROUD we are of them…and I want them to be proud of themselves as well. For now they can understand that “they were very little and sick when they were born. The nurses and doctors helped them feel better and now lots of doctors try to help make sure they are healthy and strong.”

For the time being, we’ve had Kylee fitted for a new brace. We’re aware that the brace will not help the inward turning of her foot but we are hoping it will help the “rolling” of her foot causing her to walk on the outside of it. This will be Kylee’s 4th brace, the 3rd on her left foot. She’s become a pro at being fitted and it doesn’t bother her a bit these days!

Kylee being fitted for the first time in June of 2010

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 Kylee today :]

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After anxiously waiting for a couple of weeks, we went to pick up her new brace yesterday. She was so excited to see how it turned out with the butterfly pattern she chose along with pink straps.

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Here she was this morning ready to head off to pre-k and show off her brace. She insisted I roll her pants up so that all of her friends could see – melts my heart. I LOVE that she is proud of her brace and that it doesn’t affect her confidence. I can only pray she can keep that spirit as she continues to grow.

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I’ll end by saying as Brody, Baxlyn, Kylee & Korbin get older I find myself questioning how much I should put out there for all the world to see. While I blogged just about everything when they were babies I find myself pulling back just a little now days. One day I know they’ll look back to read all I have written and I don’t want them to feel as if I’ve put their entire lives on display for the world. That being said there are SO many families who can learn from our experiences. I’ve received countless emails from parents who delivered premature babies, found our blog and saw a glimpse of hope for their little one. Whether potty training, trying to keep clothes on your kid who likes to be naked or seeking possible treatment options for cerebral palsy, sometimes another mother’s point of view can be helpful! It’s for that reason, for now, that I continue to share what I do!

12 comments:

  1. Sweet, sweet girl! Her rolled up pants leg and eagerness to show off her new brace is so touching—and inspiring! Teaches us, as adults, to accept our insecurities with our chins held high. Those kiddos have a wonderful momma to ensure they get the best of care and keep a healthy attitude! xoxo

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    1. You have such wisdom regarding your children! They are beautiful! You are such a blessing!

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  2. Such an amazing little girl! Love you so much Kylee Mae! God definitely has a very special plan for you and has given us a very special blessing! Love you and so proud of you! Aunt Beth (AKA Sis)

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  3. I for one am so glad to read about you and the kids journey. As you know through our early connection, that Everest has a lot of the same "stuff" going on as Kylee and Brody. I talk to him about everything he has been through, and how strong he is, it is also nice to be able to share with him other kids who are or who have been in the same position as him. Kylee is so sweet, and I love to read about how strong she is. God bless you all, Heather. You are an amazing mom and have such wonderful little kiddos.

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  4. Thank you for sharing Heather! Kylee's confidence beams through her smile! Deanna

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  5. For whatever reason you blog, just please keep doing it! Our family loves following along and watching these precious babes grow!

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  6. I've been reading your blog since the babies were babies. I check in all the time to see the cute stuff they are doing. I totally get not wanting to put too much on the web but I hope you don't stop blogging all together! Your family is a blessing to so many and your experience I'm sure helps many multiple moms and dads! Praying for Kylee and wisdom for you and your husband!

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  7. You blog very respectfully about your children! I think that a lot of people are learning from you and from Kylee too. I hope you keep sharing-- you must be so proud of her!

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  8. Oh I just love that see wanted to show off her brace at school! You are doing a great job! I really enjoy your blog.

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  9. In the picture where she is showing off her fabulous new brace, she looks exactly like you. :) Thanks for sharing your story, even though I am sure it is hard. Blessings!

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  10. What are you going to tell her when she realizes that alot of her problems are due to being premature and a multiple?

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  11. Anon, We don't plan on her all of a sudden "realizing" her problems are due to being premature. We plan to (as we already have) explain things to her as much as she can understand at any given age.

    The word "prematurity" doesn't mean a whole lot to a 5 year old. She does know, however, that she came out of my tummy very early and that she was very sick. There are some things she has a harder time with than others. That's how God made her and he has a great plan for her.

    I hope that answers your question!
    -Heather

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