Tuesday, May 3, 2011

Kevin's New Program (Spring/Summer 2011)

The team feels that we have a good neurological program for Kevin based on the fact that he is making progress when his physiological (digestion) is not upset, so much of the program has stayed the same.  Our biggest goal continues to be to solve Kevin's digestion so that he can continue to succeed and progress.

Nutrition Program

If I’ve said it once I’ve probably said it a hundred times, Kevin’s greatest problem in life is his digestion. We all agree that if we could finally solve this ongoing problem, Kevin would probably feel like a new kid and be able to make many more positive developments in his life. There was some slight improvement overall this last period, but Kevin is actually part of a very small percentage of kids where the diet and supplement changes do not solve the digestion problems. We have basically exhausted all of the nutritionist’s tricks. Kevin had a stool test in December that found some bad bacteria (C. difficule) and soon after is when the yeast supplement was added that caused all the other problems. But despite that fact, we still received some additional suggestions to change and add some supplements. In addition, Matthew did a two-day allergy clearing on Kevin during our visit. And the doctor recommended some homeopathic remedies that will hopefully make some good changes as well. We are also going to try something called colonic (colon cleanse). We are fortunate that one is located in Cleveland. www.coloniccenterofamerica.com

Physiological Program

• Passive Deep Breathing Program/Reflex Bags – 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) – to increase blood flow to the brain thereby enriching the brain with nutrients and oxygen

• 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. Sometimes he takes a nap, sometimes he passes the time with his books, and sometimes Grandma goes in with him and brings new books for him.

Sensory Program

• Oral Stimulation – presenting different textures in mouth

• Olfactory & Gustatory Integration Program – presenting smells and 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.

• Sensation Level 3 – create the ability to feel pleasurable and un-pleasurable sensations in the appropriate length of time consistently all over the body. Using Proprioception to become more aware of his body specifically through his left hand, and using Joint Compressions on his left hand.

Intellectual Program

Kevin continues to enjoys being at the learning table, despite the lack of progress that has been made in regards to the goal of pointing to the correct picture card. There were times when I felt like he was making some progress but it never stayed consistent. In mid-March we stopped the picture cards and continued the purposeful play which is always a good time. Kevin is a very good block builder.

Our updated program is to increase Kevin’s understanding of and participation in every day activities. Kevin has several activities and tasks that he has already learned and that have become part of our routine, in order to build on those tasks and activities we will create picture books, adding new steps to the activities he has already learned. We will also be allowing more time for Kevin to independently problem solve during every day life.

Physical Program

• Crawling: 300 meters – helps develop the pons in the brain

• Creeping: 400 meters – helps develop the midbrain

• Walking: 1 mile – gradually increasing the speed

• 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.

Kevin's FHC Evaluation (April 26 & 27)

Kevin is chronologically 78.5 months old (6 ½ years old) and based on the Integrative and Developmental Progression Chart his neurological age is now at 24.5 months. This is a 4.83 month change in his neurological development. His degree of injury is still severe and extensive in the bilateral brainstem, limbic, and cortex area of the brain.

Integrative & Developmental Progression Chart Changes

Hearing & Understanding – Partially Achieved: Follow a basic three-step request; Understand basic time concepts; Understand basic spatial concepts

Sensation & Tactility – Achieved: Feel painful and vital sensations throughout/ instantly/ and fully throughout the body

Manual & Writing – Partially Achieved: Use hands for sophisticated skills; Pour liquid into a cup

Emotional & Social – Nearly Achieved: Make good eye contact while communicating; Express wide range of emotions appropriately; Engage in purposeful activities with parents in the same room

Kevin's FHC Revisit (April 26 & 27)

We have returned from our third visit with the Family Hope Center (FHC) in Philadelphia. Jon and I got to celebrate our 14th Wedding Anniversary during our revist.  This was actually our first visit without Grandparents to assist us with Kevin during our two-day appointment, and we were just fine. Kevin was very pleasant and behaved very well during our sessions with the various team members.

Kevin was much happier and cooperative with the program we received during our last visit in October compared to the program we had during the previous spring and summer. And for the first few months the program progressed very nicely and we saw many positive changes in Kevin. I believe the decrease in our crawling and creeping distance and adding the walking which gets us out of the house has made a positive difference for both of us. We also welcomed a few volunteers back into our home again to help us with some of the reflex integration and simultaneously with our crawling and creeping program. Kevin looks forward to seeing and interacting with the volunteers daily and greeting them with a vocal at the door when they arrive.

By the end of November through February several small improvements were noticed not only by us but family and friends as well. Some improvements we noticed are: more interaction with extended family during visits; less focused on light switches, fans, and running water; drinking from a cup and his water bottle independently; listens and follows directions better, even from another room; a big decrease in hitting and any other negative behavior, with an increase in belly laughing (he sometimes sounds like Marty McFly’s Dad from the movie Back to the Future); a slight decrease in tongue thrusting and sucking air; more interested in toys and independently getting his toys out and moving a car back and forth on floor; favorite character toys Buzz LightYear and Thomas the Train; vocalizing much more, especially when asked a question and given time to respond; he is even showing a slight reaction when I leave the house now (maybe because I’m actually leaving the house ); he also insists on being independent in tasks that he can do himself, for instance walking up and down steps, scraping his bowl at end of meal; and he still enjoys watching “Wheel of Fortune” before bedtime and shows a lot of excitement when the contestant wins the bonus round.

We also had some new family adventures within the last six months that proved to be enjoyable for all of us. Be sure to check out our blog to see the pictures of our trip to PeekNPeak; Oglebay, Great Lakes Science Center, and the Cleveland Rainforest. I feel like we are beginning to experience more “normal” kid stuff.

But by the beginning of March I began to feel like something was “off” with Kevin and it got progressively worse through April. It began with a slow down or decreased energy for his physical program (crawling, creeping, walking). And gradually it seemed to affect everything. His eating decreased significantly and sleeping increased significantly. This past month he had a couple days where he vomited and then began breaking out in hives everyday and inconsistently since then. We were able to consult with a local and trusted chiropractor (Dr. Ragon) who discovered that Kevin was having a reaction to a yeast supplement that was recommended for him to help clear up some bad bacteria that was found in a stool test. So during this last month, programming was very limited due to how he was feeling. It makes me feel frustrated that we lost this time for programming and I feel like we took a step backwards, but I am glad that it seems like we have discovered the cause.

Probably the best thing the happened to us in the last six months was seeing Kevin interact more with our family during the Christmas holiday. This was also the time when he had the nine day “poop marathon”. Which just proves that if he could keep that up Kevin could make all kinds of progress. Another good thing is that I’m getting better at taking some time for myself; like when I picked up a yoga class back in November that has helped me make many positive changes in my life. Also, Jon and I continue to ensure a monthly date night for ourselves; which includes a trip to Las Vegas later this month with some friends, and of course the whole family takes some occasional “guilt-free” time off of the program to be with family and experience new things; like when we drove 9 ½ hours from Philadelphia to Middletown for my niece’s First Communion after our visit last week – we were so glad we could be there!