Joscelyn's Journey

A Beautiful Child's Journey Through Hemimegalencephaly

October Update

on October 3, 2012

 

I feel just terrible that there’s been such a long lapse between blog updates but we have been VERY busy since coming home from the hospital in early August!

Joss is doing very well with her various therapies! She receives 30 minutes of speech therapy, 30 minutes of occupational therapy and 30 minutes of physical therapy every Monday, Tuesday, Wednesday and Thursday. Her therapists are wonderful and somehow always manage to find the perfect ways to challenge her without making her feel overwhelmed! Joss has learned that when the work gets to be a little too hard, she can sometimes bat her eyes at the therapists and lay her sweet little head against their chests and end up with a nice cuddle break! She always gives me her best “Ha! Ha!” smile when she gets away with this but we’re all very happy to let her get away with it on occasion! 🙂

Here’s what we’ve been working on lately:

Speech Therapy

Right now, Joss has a one word vocabulary of “Ma-ma”. It was the sole word she could say before surgery and she quickly regained her ability to say it after her hemispherectomy. Normally, the left hemisphere of the human brain controls language. Since Joss was born with her left hemisphere damaged from a rare abnormality called hemimegalencephaly, we believe that the right side of her brain had already started compensating for the damaged left half even before she had the surgery. The goal now is to completely rewire the right side of her brain to take over the language functions that would normally be handled by the “missing” left brain. She is beginning to experiment with more sounds now and can shake her head back and forth for “No” and up and down for “Yes”. She also waves “Bye-Bye”. In speech therapy, we’ve been working on more of this nonverbal communication (including making eye contact) and also on the bilabial sounds “P” and “B”. To help develop these sounds, we do a variety of activities every week such as blowing bubbles and popping them and looking into a mirror while making the sounds so Joscelyn can imitate us more easily. She is definitely mouthing letters and sounds more and we feel confident that once she finds her voice, she will be extremely loquacious!

At home, we reinforce what Joss is learning in her therapy sessions with activities taken from the book, “Let’s Talk Together – Home Activities for Early Speech & Language Development” by Cory Poland and Amy Chouinard. They are also the creators of some of Joss’ favorite videos, the”Baby Babble – Speech-Enhancing DVD for Babies and Toddlers” series. Of course, we also read LOTS and LOTS of books to her! Her favorites are  touch-and-feel board books. Sometimes we read all of the words in the stories and sometimes we just point to the pictures and identify the object pictured. She loves books with farm and zoo animals, so we also purchased a “Fisher-Price Classic Farmer Says See N Say” toy to encourage her to mimic the sounds that different animals make. (More on that later.)

Occupational Therapy

If you’re anything like I was before Joss’ diagnosis, you aren’t sure what the difference is between occupational and physical therapies.  You might have thought that occupational therapy meant getting therapy that would help with an adult with a job of some sort. As I’ve come to learn, the goal of occupational therapy is to help people of every age learn to accomplish daily tasks. Often these tasks pertain to independent living, such as brushing one’s teeth, cooking a meal, dressing oneself, etc. Joss’ occupational therapists are focused on helping her learn to become aware of and increase the use of her right arm and hand. (Which we’ve started affectionately referring to as “Righty”.) In Joss’ case, many of the goals of occupational therapy are related to developing her fine motor skills.

Normally, the left side of the brain controls the right side of the body. In Joss’ case, since the left, malformed hemisphere of her brain has been effectively removed, there is some subsequent weakness on the right side of her body. The weakness is most pronounced in her right hand and right foot. She has very good range of motion in her right arm and leg but largely ignores her right hand when it comes to grasping anything, picking anything up, etc. When Joss wants to pick something up, she uses her left hand, period. If we place a toy on the right side of her body, she will reach over her body with her left hand to grasp it. Again, I feel that this preference was established long before the hemispherectomy surgery and is related to the poor condition of her left brain from before birth.

Joss’ therapists are trying a variety of techniques to get her to use “Righty” more. One such technique is to lightly restrain her “good” left arm and then tempting her with an object (in Joss’ case, it’s usually jewelry) to encourage her to use Righty to reach out and play with it. They also massage Righty to keep the muscles from becoming rigid or fixated in a position that would make it difficult for her to use them later. She has a tendency of keeping her right fist closed with her right thumb tucked inside of it so we have ordered a special splint for her which she will wear at night to help keep her hand in a relaxed and open position. They also do exercises with her that help her to bear weight on her right arm and hand to help strengthen it.

Toys like the “See and Say” I mentioned earlier are also great occupational therapy toys since they encourage two-handed play in order to make them work.

Righty

Here’s big brother Jackson introducing her to the ins and outs of a video game controller:

Physical Therapy

Whereas occupational therapy often focuses on fine motor skills, physical therapy is geared more to developing large motor skills such as crawling, standing, walking, running, etc. Proper balance is integral to all of these skills, so Joss’ therapists often do exercise with her that help her increase both her strength and her balance.

Balancing

We extend these sessions at home by playing with toys such as this musical roller from Chicco:

Even though therapy is a lot of work, Joscelyn really seems to enjoy it! (Most of the time, anyway!) The Florida Hospital for Children Pediatric Rehabilitation Center is a very child-friendly facility, from the decor to the warm and dedicated therapists and office staff! We just love them! Recently, the entire office celebrated National Physical Therapy, Occupational Therapy and Speech Therapy Months by having a week of themed dress-up days. Here’s Joss all decked out for “Princess and Superhero Day”:

On Fridays, Joss has a day off from PT, OT and Speech Therapy but we still strive to follow the advice of other hemi-moms and “Stimulate! Stimulate! Stimulate! Challenge! Challenge! Challenge!” her developing brain by bringing her to Kindermusik classes on Fridays. Kindermusik is a music and movement program which enhances a child’s language and literacy skills (vocabulary, comprehension, listening, expression), social and emotional development, mathematics and pattern-recognition skills and their ability to plan, guide, and self-regulate behavior. Joss’ Kindermusik teacher is also a music therapist. These classes also give us more opportunities to use “Righty” since Joss LOVES music and is often motivated to use it to hold an instrument with that hand.

Music

We are SO grateful to all of you who have so generously given of your time to organize and participate in the various fundraisers that have made it possible for us to pay for the various therapies, classes and toys that will enable Joss to lead a normal, an extraordinary life one day! Last month, we were blessed by an outpouring of community love and support at a fun and unique “Wrapathon” fundraiser organized by the amazing Debbie Hardaway of “It Works!” 

You can learn more about the fabulous “It Works!” weight loss products here:

https://wrapit2012.myitworks.com/Home

Debbie did a tremendous job and worked diligently for months putting the event together! We cannot begin to thank her and everyone who participated enough!

I will TRY to be better about posting regular updates! It’s so exciting to watch Joss’ progress! Don’t forget to follow us on Facebook, too!

https://www.facebook.com/JoscelynsJourney

Blessings!

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5 responses to “October Update

  1. Mariellen Barr in PA says:

    I am all smiles watching your cutie pie!! Like Jos, I happen to think a bell on a stick is quite yummy. 🙂

  2. It is exciting to see how far she has come in just a couple of months. A beautiful (and adorable ) example of determination:-)

  3. Crystal Wilkens says:

    I’m so glad to hear that she is doing so well!!!!! I pray for your sweet angel daily. Amazing….is all that i can say! What a strong little girl you have!

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