All Aboard the Polar Express Train

Left Foot Cast #3

Another trip to Philly.  We arrived in time for dinner and ate at one of our favorite restaurants in the area.  The watiress remembered us from when we used to stay in that area for our visits at IAHP, she even asked us where the grandparents were.  After breakfast the next morning, we removed Kevin's cast in the hotel room and went swimming in the hotel pool.  And then Kevin had a nice long soak in an epsom salt bath before we saw Dr. Joe for the third and final cast. We've got one more trip for Dr. Joe to check it out sometime before Christmas.

The art work here features a "hand-turkey" GOBBLE GOBBLE!  We removed the third and final cast on Thanksgiving Day.

Left Foot Cast #2

We returned to Philadelphia a week later to have Dr. Joe put the second cast on Kevin's foot.  He wanted to see us at about 3 pm so we decided to do it in one day.  We drove to Philly, walked around the mall for about an hour to stretch our legs, met with Dr. Joe for about 20 minutes, and then got back in the car to drive home.  We knew the carseat was the best place for Kevin to be while the cast was drying.

Oh yeah, and in case you were wondering...Kevin has no limits with the cast on.  He can even bring the big green ball up the basement steps with a cast on his foot!

Kevin's babysitter decorated this one up for him.  I especially like the matching Nike symbol on the side.

Left Foot Cast #1

When Kevin received his first cast, we immediately put him in the car and started on our seven hour drive home.  We were supposed to keep him off of the casted foot for 24 hours.  After we arrived home, Jon carried him inside the house and put him on the floor with some of his favorite toys and books while we unpacked the car.  At one point I was doing something in another room and I heard a strange sound...it was Kevin walking around on his cast.  I thought it was going to be a big deal for him to get up and move around in the cast, but that was not the case.  He acted like it was no big deal!

Valley Forge & Philadelphia

Kevin's New Program (Fall 2011/Winter 2012)

Nutrition Program
I kept up weekly contact with the Nutritionist during the last six months.   She said I win the prize on the most emails.  I even began signing off as “Your faithful BM logger”.  As I said we did make some progress because back in the spring and early summer I could give Kevin an enema or suppository and nothing would happen.  Now I can give him a suppository and a little time alone and it works.  We have even gotten to the point where he sometimes will have a BM without a suppository.  We also made some changes to his supplement program. Now that we succeeded in getting him to have daily BM’s we want to try to eliminate the use of the suppositories.  We are going to try a new diet called GAPS.  The Gut and Psychology Syndrome Diet was created by Dr. Natasha Campbell-McBride and has its foundation on the Specific Carbohydrate Diet (SCD).  The diet provides a protocol for healing digestive disorders.

 Physiological Program

·         Passive Deep Breathing Program/Reflex Bags – The purpose of this program is to increase blood flow to the brain thereby enriching the brain with nutrients and oxygen.
·         The Oxygen Enhancement Program/Carbogen Therapy (95% Oxygen and 5% Carbon Dioxide) – The purpose of this program is to increase blood flow to the brain thereby enriching the brain with nutrients and oxygen.
·         The Mild Hyperbaric Therapy Program – To increase partial pressure which increases oxygen uptake in the brain and body, improving overall brain and body function.
o   Kevin continues to look forward to his time in the “spaceship” every day after lunch for a couple hours.  He passes the time with his books and a good nap.  Once a week Grandma goes in with him and brings new books for him.

 Sensory Program

·         Sensation Level 3 – create the ability to feel pleasurable and un-pleasurable sensations in the appropriate length of time consistently on Kevin’s left hand & arm.
·         Oral Stimulation – presenting different textures in mouth
·         Olfactory & Gustatory Integration Program – presenting smells & tastes
·         Auditory Training with EASE CD’s – to be comfortable in noisy situations, to not be upset by sounds and to not be easily distracted; to hear sounds at the appropriate volume; to hear all sounds well in daily life and speech.
o   This continues to be another one of Kevin’s favorite programs.  He loves snuggling with Mom (or Grandma) on the couch and putting on his headphones while Mom reads a book.  He is very quick to let me know if it accidentally turned off and to turn it back on.  I know that this is helping because last year when family called to sing “Happy Birthday” to Kevin he cried and got very upset.  This year he did not cry or get upset…he still wasn’t real sure about the whole thing but he did listen.  By the way this happened four different times in one day. 

 Intellectual Program

Kevin continues to enjoy being at the learning table.  His favorite activities are building block towers and playing with trains.  In fact, trains have become very popular in our house.  We play with Thomas the Train, read train books, and even play train while doing laps.  He recently had a birthday and it was all about trains…did I mention that this was Kevin’s “best birthday ever”???!!! (don’t forget to check the blog for pictures from this fun day).  He is initiating play with others by rolling a car or tossing a ball.  We have also noticed that he will stay engaged in this activity much longer than before.

 Our goal is to continue to increase Kevin’s understanding of and participation in everyday activities.  Part of the new program will include teaching Kevin sign language.  This has been part of our program in the past but never very well implemented.  I think we are both ready to try again!

 Physical Program

·         Crawling:  We are currently doing 200 meters and our goal is to increase to 400 meters a day
·         Creeping – We are currently doing 400 meters and our goal is to increase to 800 meters a day or 1,000 meters is ideal
·         Walking – only as a way of life for transportation and not as part of a program
o   It is a little disappointing to take a step back like this after we have worked so hard but of course we would rather improve Kevin’s walking quality and we don’t want him walking on it the incorrect way like he has been.  One of the positives is that now I don’t have to worry about taking the time to get us dressed to go outside and drive to an indoor place to walk this winter.
·         Reflex Integration Program – to support the organization of the Medulla Oblongata and to pattern and integrate pathological and dysfunctional reflexes into higher level brain stages

 Helpers

I have added helpers back into our day.  Over the summer, I asked a couple of the neighborhood kids to come over and “play” with Kevin as we did our daily laps.  This worked out really well.  After the school year began, we joined a local Catholic Homeschooler Group and asked for kids to help us out.  I currently have someone coming over to help every day.  This is a big motivator for Kevin to look forward to playing with someone different every day of the week.

Kevin's FHC Revisit (October 31 & November 1)

We just returned from our fourth visit with the Family Hope Center (FHC) in Philadelphia….WITH A CAST ON KEVIN’S LEFT FOOT! (read more below). 

The day after the unusual October northeast snow storm, we traveled across the state of Pennsylvania and drove by sections of snow and sections of beautiful autumn colors interchangeably.  The Rest Area, where we normally stop for lunch had a picnic table full of snow and the temperature was 30 degrees…so we had a quick bathroom break and ate our lunch in the car. 

We arrived at the hotel just as the Steelers game against New England was about to begin.  I think Kevin was so excited about the Steelers winning the game that he didn’t sleep very well our first night.  The next day was his evaluation and he did remarkably well on so little sleep.  I can remember our first visit with FHC and a similar first night of no sleep and a very stressful evaluation, so that in itself is a positive change.  After lunch, Jon and Kevin found a quiet corner in the clinic to lie down and Kevin actually fell asleep…that’s how tired he was…he normally will only take a nap on a program day, and only in the Hyperbaric Oxygen Chamber.

As you know our greatest problem has been Kevin’s digestion.  And we did make some progress with this in the last six months but there is still more improvement needed in this area.  But the small improvement that we have seen has made a positive change in him overall because of course he feels so much better.

The other major obstacle has been Kevin’s left foot.  It continues to turn inward and he has had several sprains over the last year.  We made an extra trip to New Jersey in August to see the foot doctor.  He recommended a new pair of orthotics for Kevin’s shoes, we also bought a snazzy pair of high-top sneakers to support his ankle, and we began using a muscle stimulator on his left leg.  Dr. Joe did see some improvement but we all agreed to go ahead and cast his left foot for three weeks.  This will help correct some structural concerns we are beginning to see in his left foot and it will also enable his muscles to relax and be given a chance to be neutral so that hopefully we can retrain it correctly.  After the cast, we will go back to using the orthotics in his shoes, giving him several treatments a day with the muscle stimulator and of course do lots and lots of crawling with very good toe digs.  In the meantime we can continue to do lots and lots of creeping while he has the cast on.  The casting is going to require us to travel back to Philly once a week to recast his foot and put it in a better angle each time it is recast over the next few weeks….our current family theme song is “On the Road Again”.  Casting actually goes against the principles of “the program” but the fact that we have done a good program (and tried 4 pairs of orthotics) and it hasn’t fixed his foot tells us we need to try something else.  We have always been concerned about Kevin’s left foot even before he was walking.  At that time we were with The Institutes and they do not believe in using orthotics and they did not have us doing the toe digs during the crawling this may have made a difference if we had.  So we are hoping that the casting will help us start over and then continue to do a good program and produce a better quality walk for Kevin.

Despite this setback with his foot, overall there have been some very good changes in Kevin.  There are several stories on the blog that I have shared recently showing his new problem solving ability and the improvement in his emotional and social behavior.

It was a little disappointing to see that Kevin’s neurological age did not change based on the neurological chart but he did make NINE quality changes on the chart…FIVE of the changes appear in Emotional and Social Development and TWO changes in Hearing and Understanding…which is no surprise to us!

Since our visit in Philadelphia was unexpectedly extended an extra day to do the casting of Kevin’s foot we got to spend a day as tourists.  We discovered that our hotel was only 4 miles from Valley Forge.  Kevin had actually already been there with his grandparents during an earlier visit but Jon & I had not.  It was beautiful to be there with the fall foliage.  And we had not been to downtown Philly since our very first visit to The Institutes 5 years ago.  So we took a bus tour and went to see the Liberty Bell.  Kevin has come so far since that first visit 5 years ago.

2006

2011

SMILE

HAPPY HALLOWEEN

TOOTHLESS

 

A good sense of direction

We found out how much Kevin is aware and understands through a recent outing. I mentioned that we joined a local Catholic Homeschooler Group.  Every Friday, during the fall months they meet at a different metropark for a hike.  Each week, the evening before the hike, Jon & I would take Kevin for a ride in the car to the new park to practice where we were going and what we were going to do.  Despite the fact that we tell Kevin what our destination is when we get in the car, it always seems like he has his own agenda.  Especially since he basically knows that if we go this way we are going to church, if we go this way we are going to the market, if we go this way we are getting on the highway (which he loves).  So on this particular day, he seemed to be very excited about going someplace new, but when we passed the library (one of the places we went to walk last winter) he became very upset.  Then we realized he had been so excited because he thought we were going to the library when we started on that path even though it had been months since we had been there.  Very smart! 

All in all it worked out and he enjoyed his hike and picnic at the metropark.

Weekend Getaways

A weekend in Pittsburgh to see the Steelers first home game.

 A weekend in Hocking Hills to celebrate meeting each other 20 years ago

as Freshman Homecoming Weekend at Ohio University