Friday, November 21, 2008

2008 November

Tomorrow is Mackenzie's 8th birthday.  We held a party for her over the weekend at the local bowling alley. 
It was a success even though Mackenzie had a really bad cold that day.  She really enjoyed spending the day with her friends and family.

In mid-October Mackenzie had the flu for about a week.  The seizure have significantly decreased since then. 
This happened once before (back in March she was ill for a week and the seizures disappeared for a month and a half) and we are certain that the seizures will return this time as well.

In the meantime, she is completely off all anti-seizure medication and it has drastically changed her attitude. 
She is happy most of the time, smiling and even laughing more frequently than with the medications. 
In addition, she is more alert and aware of her surroundings.  In therapy, she is taking some amazing steps (the best we have ever seen) and she is learning to grasp objects with her hands.

We have been getting new equipment these past few months.  We got an exercise mat and bolster for home use as well as a new chair (The Up-Down Chair)  for her to use at home.  The up down chair allows us to sit her at floor level or at the kitchen bar level.  In addition, she was quickly outgrowing her wheelchair and developing spine curvature and hip displacement - so we got her a new wheelchair.

The Beast
Back in July we ordered an accessible van for Mackenzie.  We had been using a child car seat and lifting her into the vehicle and then lifting the wheelchair into the back of the vehicle.  With her growth, the space was decreasing and the weight was increasing.  So we decided on a full size van with a lift.  We also had four-wheel drive installed because of the area in which we live.

Wednesday, September 17, 2008

2008 September

Mackenzie started 2nd grade as soon as we returned home from Ability Camp.  She really enjoys being around the other students and smiles often in class.

We have begun to notice changes in her since the hyberbaric oxygen treatment (HBOT).  Her physical therapist reports a noticable decrease in the tone in her legs, meaning that her legs are more loose and able to function normally. 
Her sit-to-stand routine has improved as well as her grip (holding of objects).  Most noticable is Mackenzie's ability to walk. 
She can now take nearly perfect steps while being supported around the upper torso. In addition, Mackenzie has taken an active role in using her communication device.

Lately there has been a marked improvement with the use of her talker to participate in conversions around her. 
However, this past week her use of the talker has decreased while she focuses more on gross motor skills, such as walking and grasping objects.

We are all very excited and extremely proud of her.

The seizures have not changed in duration or frequency.  We are looking into our options for different medications and/or the Vagas Nerve Stimulator to get her seizures more under control.

Thursday, August 28, 2008

2008 August

3 Aug 2008

The HBOT Chamber
We have returned to Ability Camp in Ontario Canada.  We left home on the evening of the 31st and arrived this afternoon at the camp.  It was a VERY long and exhausting drive.  Mackenzie started out doing just fine, but sometime in day two she had enough of being in the car seat and began whining. 
I really hate it when she is unhappy.  After we arrived she relaxed on her back for several hours and has since found her smile again.
This place looks much different in the summer time (without all the snow).  The little town of Picton is over-run with tourists and the weather is much more humid than I have become accustomed to in Colorado.   We will be here 3 weeks and then we start the dreaded trip home.  Stay tuned for more updates.

10 August 2008

We are doing well here at Ability Camp.  Mackenzie is happy and smiling all the time.  Yesterday we took a stroll to see the lake.  Lake Ontario is only about 1/2 mile from the camp.

We are doing two hyperbaric oxygen sessions per day.  We are also working on eating by mouth and toilet training.  So far we have had little progress with either. We are hoping to start a feeding therapy program when we return home.

Thank you to everyone for your wonderful comments and guest book entries.  We miss you all.

Relaxing between HBOT treatments

15 Aug 2008

One week remaining here at Ability Camp.   We are doing great and making new friends. 
We are not looking forward to the drive back to Colorado, but we plan to visit some friends along the way. 
Mackenzie will start the 2nd grade as soon as we get back home (she is missing the first week of school).

I know that Mackenzie is excited to get back to school and see all her friends again.

28 August 2008

We arrived home safe from our journey to Picton Ontario.  I was a long and exhausting drive, but we had a nice visit with friends in Ohio.  Mackenzie and mommy made new friends at Ability Camp and got to reconnect with friends from previous camp stays.  Mackenzie did very well with the Hyberbaric Oxygen treatment again.  She is now up to 80 treatments.  I would like to reach 200 treatments.  We have seen no significant changes since the treatments, but any change, resulting from the HBOT,  can take a few months to occur.  We are not expecting any miracles from this therapy, we only wish to give her every opportunity to heal.  Other the cost, there is no negative side effect from this treatment.

Thursday, July 10, 2008

2008 July

The Colorado Marathon

In May, Mackenzie had to have a baby tooth pulled out due to an infection.  The dentist said the infection could have been caused by a blow to the chin.  With her seizures she is always dropping her head painfully hard onto her knees or whatever other surface may be there.

July brought an unexpected visit from family this month.  They only stayed for the day, but we all (especially Mackenzie) enjoyed their visit.

We are planning to return to Ability Camp this August but will not participate in the conductive education therapy due to Mackenzie’s seizures.  She will be doing  3 intensive weeks of hyperbaric oxygen therapy, but not conductive ed this time around.

Saturday, May 3, 2008

2008 April

Mackenzie played the piano.  The keys were marked with princess stickers and the therapist held up a paper with princess stickers on it.  Her job was to look at the paper and hit the corresponding key on the keyboard.
Washington State Ferry

In March we took a road-trip to the Northwest.  Mackenzie was sick the entire week that we were in Washington.

When the fever and the vomiting ended – so did the seizures.  We didn’t see even one seizure from the middle of March until the beginning of May.  We don’t know why they went away or what made them return.  Unfortunately, the seizures that returned are stronger in intensity and frequency than the seizures that she has been having for the past 3 years.

April brought puppies and a tricycle.

Mackenzie’s dog had 4 adorable puppies and she was placed on the AMBUCS tricycle wish list and received an adaptive tricycle from an anonymous donor.  She wasn’t on the list very long (maybe a few weeks) when we heard the news.

Mackenzie also found her laugh in April.  She just started laughing one evening and continued on and off all night (until she was asleep).  We were all so excited to see and hear her laugh again.

Sunday, January 6, 2008

2007 Updates

January 15, 2008

Family 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. 
Charlie Brown

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.
Halloween 2007