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On January 16th, 2013, Kailyn Elizabeth Hunter (aka Kaylee) turned 3 years old. To say that the journey thus far has been easy would be a lie, but I can happily report that the past year led to some wonderful developments for my jellybean.

The first HUGE accomplishment for Kaylee was that she finally mastered how to get to a seated position from lying down. This was no easy feat; however, I firmly believe that Hippotherapy– horse-riding therapy– was exactly what was needed to help her strengthen her trunk muscles enough to enable her to sustain a sit. The downside to her learning to sit up– and this wonder-child does it by way of some sort of “magic abs of steel”– is that changing a diaper is now a cardiovascular activity for me. You can see, yourself, that not only is she sitting upright, but her posture is straight and strong– another plus for a little peanut with scoliosis.

Kaylee on horse

Six months after mastering sitting, Kaylee has decided to FINALLY put some weight into her legs. She does wear ankle-foot orthotics, but her therapists marvel at the way that, like Houdini, she manages to wiggles out of her AFO’s and shoes when it would seem like an impossibility. Still, when she has them on, she can sustain a propped stand for about 2 minutes.

Kaylee Standing

This update would be incomplete without mentioning that Kaylee also has a new best friend– our dog Bella. It is said that dogs have a “6th sense” about children, and especially about children with special needs. Well, from the day we brought Bella home from her “mom’s”, she has been by Kaylee’s side…sometimes next to her, and sometimes on top of her…but always close to her. The love Bella feels for Kaylee warms me like little else, and the love she feels for her puppy is mutual.

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Finally, Kaylee started school on January 16th; she attends Schroth School, which is part of the Ladacin network. The developmental strides she has made since beginning at Schroth are indescribable. Her day begins with circle time with the school daycare; here, she has the opportunity to interact with “typically-developing” toddlers. From there, she does work with the SMART board, sings songs, paints in Art Therapy, dances in Music Therapy, and of course, receives her daily dose of PT, OT Speech/Feeding Therapy. She has follow-ups with her case worker from the Commission for the Blind once a month, and she meets with physiatrists, neurologists, and other specialists as they come in every few months. There is an equipment engineer who works on-site once a week to assist with issues with her wheelchair, and this summer, she will be receiving swim therapy. Best of all, she gets to go on field trips and interact with her community beyond the school walls. Since starting school, she has been bowling, to see the Easter Bunny, and to the boardwalk. There have been so many wonderful opportunities provided to her through this school, and I look forward to seeing what she will be presented with next. Of course, the absolutely BEST part of school is that she gets to spend the day with her boyfriend (and fellow WHS comrade), Mason. He is a talker, so I am confident that Kaylee will become one, too. I hope Mason’s mom Jenn won’t mind my planning their prom party…or their graduation party…or their wedding. In all seriousness, it is kind of amazing that 2 children with the same incredibly rare syndrome live within 3 miles of one another in the same town… I choose to take it as a sign that my husband may, after all, dance with his daughter at her wedding, just as he always envisioned in his dreams. 🙂

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Life with Jellybean HAS been a rollercoaster ride, and I do not expect the ride to end any time soon. Still, with continued hope, therapy and support, I know that Kaylee will continue to grow and, God-willing, meet those milestones– no matter how long it takes.

Mommy & Kaylee

 

5 Responses to Big changes for a little girl!

  1. Janet says:

    How wonderful and encouraging! She is beautiful and what a treasure to have ‘comrades’ 3 miles down the road. WOW!
    We can’t wait to meet somebody,(in person) who can share this life with us. Way to Go, Kaylee!

  2. Kristen Faccioli Licari says:

    Hi Laurie ~

    Thank you for dropping me a line. I am sorry to hear that you have had as rough of a go of things as I have been having. I know how that goes. But I am happy to hear that you are able to enjoy the little victories as they come….I am still waiting for those. Congrats to you and Kaylee!

  3. Kim Shafer says:

    She is beautiful. Leo just might want to get in that “boyfriend” line!

  4. Kristy says:

    Can Dylan get in that boyfriend line too??? 🙂 Kaylee is doing amazing and I loved catching up on all her wonderful progress. Seeing pictures of her with the dog made me want to cry as we lost Dylan’s best bud Huckleberry earlier this year. I think we need to look into getting another dog…Dylan, like Kaylee, loves dogs and I think they do have a very special bond.

  5. shirley bidnick says:

    Princess Kailyn, Kaylee, Belle, Jellybean is as interesting as the names you have given. She is a complex individual. You mentioned in this update that she has a caseworker from the commission for the blind, but she doesn’t wear glasses. Does she have any vision? It is very difficult to assess vision in children with cognitive disabilities. The photos of her with her puppy have me thinking Rochelle needs one, even though we have a very good cat. You and your princess are dealing with tremendous challenges, but her smile, and yours seem to say, ‘together we can do anything’. You tell a lovely story.

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