January 15, 2008Family and Friends,
Let me start by apologizing for not keeping the updates page current. We had a busy 2007.
In December of 2006, we were given permission by Mackenzie’s neurologist to decrease her medications in hope of eventually stopping them altogether.
Also in December, we discovered Ability Camp by searching Hyperbaric Oxygen Treatment (HBOT) on the internet.
We registered Mackenzie and were on our way to Picton Ontario (Canada) by the end of January 2007.
|With her soul sister, Lily at Ability Camp|
Ability Camp is a 5 week program of intensive HBOT and conductive education therapy and is located near Picton Ontario (Canada). It was a good program and we made some good friends, but it was COLD and SNOWED a bunch. Some of the noticeable results after 5 weeks at the camp include: Mackenzie’s trunk control improved and her muscles (most notably her hands) were much looser than they were before the treatment.
|With previous Physical Therapist, Chrissy Booher|
I was also impressed with how well Mackenzie did on the car trip to and from the camp. It wasn’t nearly as difficult as I expected it to be on her. We plan to return to the camp in August of 2008.
In May we took a road trip to Washington DC via Gettysburg. In DC we had lunch/dinner with a few astronauts and toured the Capitol and the city monuments. We even met up with Mackenzie’s first Physical Therapist who had moved to DC a year earlier. It was very exciting.
July brought another round of horse therapy our way. Mackenzie really enjoys the horses and the volunteers are wonderful individuals.
Mackenzie repeatedly expressed excitement and an eagerness to get out of the truck on our weekly visits.
Mackenzie’s computerized talker arrived in August. She can use either touch or head movement to activate the talker, however, currently we are seeing more accuracy with the head movement.
A very small reflective sticker is placed on Mackenzie’s forehead between her eyebrows. The talker is then able to ‘see’ the reflection and ‘know’ where she is looking. She still needs lots of work on using this device, but she is steadily improving.
Also in August Mackenzie’s father retired from 20+ years in the US Air Force and we relocated far away from Ohio. Again Mackenzie did extremely well with the long road trip. We purchased some acreage in Colorado and had a small wheelchair accessible home built quickly to accommodate Mackenzie (and us because she is now too big to be carried up the stairs). We are planning a larger home to be built in the next two years, with dedicated therapy space and other features to help accommodate Mackenzie for life, if necessary.
Because Colorado is such a wonderful place to live, we were excited and fortunate in that Mackenzie’s communication device therapist also elected to move out here. She now runs her own business, and her website is Inspiring Talkers. She lives about 30 minutes from us and still works with Mackenzie each week. Mackenzie loves her and her children. We are glad that they are here with us.
Her new school is a big change for her, but I know that she really enjoys it. She is ‘mainstreamed’ into a regular first grade classroom. She loves the other children and they all really enjoy her. The teachers, the aides, and the school therapists are so wonderful. The enthusiasm that they have toward Mackenzie and helping her to fit in with the other children is amazing. The school district is one of the main reasons that we chose to retire to this area – and we are so grateful to them for all that they do for Mackenzie.
Because she enjoyed the therapeutic riding so much, Mackenzie got her own horse in September. His name is Charlie Brown and he is a 20 something year old Quarter horse. He spent most of his life on a guest ranch as a trail horse.
Although he was often rode daily by complete strangers, he is such a gentle horse that he built up a devoted following of fans. Since he is older, and the winters above 8000 feet at the ranch were a little harsh for him at that age, the owners were looking for a more suitable home for his retirement.
He is the most patient and gentle horse and is just perfect for Mackenzie to ride with her daddy.
We took another road trip in September to see Mount Rushmore in South Dakota and Devil’s Tower in Wyoming. It was a good trip and Mackenzie enjoyed getting out of the house.
As of September, she is completely off all of the anti-seizure medication and more aware and alert than she ever was while on the medication. She is more accurately making choices with eye gaze and even occasionally with her arms.
She still has difficulty getting her arms to do what she wants, but she is trying really hard. She is extremely opinionated. She may not speak to us, but she has ways of expressing herself. She lets us know when she is tired, hungry, bored, etc.
Her new therapists are wonderful and she gets music therapy with physical therapy and occupational therapy. She really enjoys working with the music in the background. She is taking more steps, better steps, and faster steps than she has in the past.
For Halloween her daddy built her a pumpkin carriage, complete with battery operated lights, and she went as Cinderella. She had the most popular costume in her school.
December brought visits from all the grandparents (although not at the same time thankfully). Christmas was, as usual, difficult on us because we miss the way she used to be so much. Still, Mackenzie had a good Christmas.
She got to see her grandparents and she got lots of great gifts from all her loved ones. After a two week break from school, she was eager to get back to her friends (and get out of the house again).
And finally for January, the latest news is that her Speech and Occupational therapists have noticed she is beginning to nod her head yes, and shake her head no. It is very slight, but they believe it is purposeful and appropriate.
When we mentioned this to her teachers and aides at school, they said they thought they had noticed it too. It is great to see some more progress like this, and even better to get independent confirmation.
Well, that’s all for now. As you can see, 2007 was a very busy year, but 2008 is shaping up to be just as busy, with lots of new experiences and travel. Please continue to keep Mackenzie in your hearts, thoughts, and prayers.