Catching up!

So much to catch up on as I've been hoping to get Jace's Journey up and running but haven't quite perfected the page yet. Jace has become, "toothless Jace", losing his two front teeth on the same day. One before school, one after school. The tooth fairy was very good to him.

 We've begun to experiment with counting money and even sent him to school and told him how many books he could buy at the Spring book fair, he came home with 4 books and seems to be quite thrilled with his choices. He loves to be read to and I quite enjoy reading a book and flipping through the pages rather than letting an electronic device do it for me. Feels more personal, more memorable.

A huge goal that has been in progress over the past year is getting Jace a more advanced piece of equipment to help him communicate. His team has really been hard at work brainstorming for the right piece that meets his needs. We are trialing a piece of equipment called a Nova Chat 5 over the next two weeks. Jace works on his communicating and switch scanning abilities during the school year and during private therapy, it will be nice and less frustrating for him to eventually be able to communicate with his family whether he wants something or someone or to do something, it will give him a voice.

Someone has been sleeping a ton these days. Cute pic of Jace napping, he's likely on another growth spurt, giving him that appearance of being tall and at the same time, awkwardly skinny as his body lengthens, all that work on weight gain doesn't seem to catch up. It's possible it runs in the family as I noted that a few cousins are also appearing to be all leg this summer. Not as much time for play when he goes to bed at 9 pm and wakes up at 10:30 am. 

Finally, we've been working on obtaining a bike for Jace. It's something that insurance doesn't deem medically necessary but his little face is beyond lit up when he is on one. I may have finally put one together that will meet all his needs, give him a sense of freedom, work those legs, give him more skills toward  patterning and get him outside more. Hopefully, by tomorrow he will be on the wish list for it and I can begin my fundraising efforts to get him his own bike. In addition, Jace will also be participating in his first walk, roll and run event for UCP this year, under Jace's Journey. Looks like it will be an exciting summer for Jacers!

31 days of Jace...twenty thirteen :)

Inspiring story

Jace returned to speech therapy today after a long break. It was inspiring to hear his goals, note how he's starting to verbalize more sounds,and said "yeah" clear as day just yesterday. We will work more towards voice output this year and continue to help him build his language. I am able to tell in Jace's voice if he's going to say yes or no, as he gets quite whiny when it's no but the hope is that we can reduce language and body barriers for those working with him who do not know him as well. I am so excited for him! I stumbled upon a fabulous and inspiring story that increased my level of hope for Jace's future. As I have been thinking about his friendships for when he transitions into middle school, this really nailed it for me from the story. See the link below to read the full story about these two friends. Love it! :)

“This is what I’ll say about disability – it may be a roadblock to friendship for some people, but if that’s the case, the other person is likely not a person you want to be friends with, anyway.

http://cerebralpalsy.org/inspiration/inspirational-relationships/friendship/?utm_source=fb&utm_medium=post&utm_campaign=inspire

Hippotherapy

I've been wanting to add Hippotherapy for a few years now into Jace's schedule...determined to do so this year before summer. Info on hippotherapy:

Hippotherapy, a treatment tool utilizing the movement of a horse, is medically oriented to address sensory, motor, and perceptual deficits. It is used to treat individuals with acquired and developmental disabilities.

In 1997, at the Ninth International Riding Congress, a conceptual framework for Hippotherapy was presented to 700 people, representing 31 countries by the American Hippotherapy Association. These eleven points are briefly summarized:

1. Neural plasticity and Self-Organization – Hippotherapy can move a client beyond the point where traditional tools have plateaued by accessing the central nervous system in a new way and new movement strategies promotes modification, reorganization, and enhanced movement capabilities.

2. Control Parameter-The movement of the horse’s back transmitted to the patient can be a control parameter for upright sitting.

3. Preferred Patterns of Behavior – Hippotherapy creates an instability in old patterns of behavior and encourages the emergence of new motor and alertness patterns.

4. Rhythmicity and Entrainment-The movement of the client and the horse becomes coupled so that they interact and influence one another.

5. Perception/Action – The movement through space, changing support surface, and visual flow provide vestibular, somatosensory, visual information to the client, which is simultaneously integrated and translated into action.

6. Postural Mechanism-The multidimensional movements of the horse provide ample opportunity to explore, contolr, and coordinate posture and movement that in turn influences cognitive and communication function.

7. Arousal-The horse’s movement provides powerful input to the arousal mechanisms of the central nervous system.

8. Motivation-Hippotherapy provides motivation through the demands of the task and the interaction in an interesting, enjoyable environmement.

9. Variability of Practice and Problem Solving-During treatment the therapist varies the direction, speed, or amplitude of the horse’s movement challenging the client to actively participate.

10. Adaptability-The dynamic nature of hippotherapy encourages the individual to continue to explore, select, and adapt appropriate movement strategies relatice to the changing context.

11. Function in Multiple Environmments-The development of adaptability assists in promoting functional performance in other environments.

Advice not sought on therapy solutions...

I love that so many of my family members are so optimistic about Jace...but if I hear one more person tell me to try connective healing or a surgery, or something that they saw or read about because it helped another kid with CP walk, I may just scream...because that particular kid could already walk, damage was in a different part of the brain, there are several different types of cerebral palsy.

I don't think they realize that I spent the first three years looking into surgeries, treatments, asking questions about what I should be doing and researching until all hours of the night. Yes, it is great that the connective healer on Dr. Oz just now helped a child with CP to walk. However, that child could already walk, his walking improved. There are a ton of treatment programs out there that might work, but as his caregiver, I have had to pick and choose what benefits him most now, what does insurance pay for (all of this is costly) and what can he handle, he is only 6. I am not trying to "fix" him. Cerebral Palsy does not just vanish, but it does not become worse.

 I am sure connective healing has benefits and maybe one day, I will look into it further. I am much more interested in adding aquatic therapy and hippotherapy to his programs. He will probably progress out of his hart walker and into a pacer over the next two years, which is really an awesome goal! Without the therapy he has now, he would not even have the hart walker. There is really a reason for the programs that we do currently. I'd love to do it all, but he's still only 6, this is a lot as it stands and I am nervous about it being too much. Since he's not a mobile child though, aquatic therapy will be wonderful, would love that every other week and maybe hippotherapy every other week into the fall.

A rough start to the new year

Jace had a pretty rough start to this year, missing nearly an entire month of school due to bronchiolitis, he's finally returned to his normal schedule and resumed therapy tonight. Working on new goals for the next two years, we hope and see it as achievable to transition from the hart walker to a walker that will provide him with more freedom, maybe a pacer, we'll see how he does with weight bearing. In reflection over how important therapy is to a child such as Jace, I started to think of how far he has come in the last 3 years, thanks to intensive physical therapies. There have been endless benefits to receiving such therapy, including a gain in tolerance for his environment, a desire and urge to learn crawling, and in general, improvements in all areas where he previously struggled.

Ninety four percent of all children who undergo intensive physical therapy demonstrate an improvement in gross and fine motor skills. Sixty four percent of all children show an improvement of speech and fluency, but the major improvement occurs in the vestibular system. The vestibular system, through the position of the body, records and analyzes the muscle tone necessary to execute movement.

It is sad to learn tonight of those insurance companies who do not think that these therapies make any sort of difference. Hope to someday change that!

I read this poem a while back, and thought it was worth sharing. I am so blessed to have this amazing little boy to raise, to love, and to watch him grow. He is my love bug, full of joy, laughter, and a bright smile!

1.      If before you were born, I could have gone to heaven and saw all the beautiful souls, I still would have chosen you...

2.       

3.       If God had told me, "This soul would one day need extra care and needs", I still would have chosen you...

If He had told me, "This soul may make your heart bleed", I still would have chosen you...

If He had told me, "This soul would make you question the depth of your faith", I still would have chosen you...

If He had told me, "This soul would make tears flow from your eyes that could fill a river", I still would have chosen you...

If He had told me, "This soul may one day make you witness overbearing suffering", I still would have chosen you...

If He had told me, "All that you know to be normal would drastically change", I still would have chosen you...

Of course, even though I would have chosen you, I know it was God who chose me for you.

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