Friends of Kai

Greetings Friends

We are Michael Schiesser and Neelama Eyres and we have a 5 year-old boy named Kai. He was born onto this earth with a brain condition called "microcephaly". His brain is smaller than yours and mine, and he is missing half of his corpus callosum (the bridge that connects the right & left sides of the brain).  We have created this blog to raise awareness, chronicle the life of Kai, as well as to be a resource for other parents and friends of Kai.

A few guidelines for navigating this blog. First, blogs work from the present day back to the past.  This means that kai's life is chronicled backwards from the top of the blog to the bottom.  To read chronologically, go to the bottom of his blog and read upwards. Second, all of the pictures on the blog, once double-clicked, will appear larger on your screen. Lastly, if there is anything that you would like to share about Kai or your own experience/information regarding these conditions, please post by clicking the "comment" link at the end of any posting.  Thank you all so much for taking the time to visit!

Kai Summer Update: August 2009

Kai has had a FUN FILLED summer!

The best investment of the summer was our membership at the community pool in San Rafael, just down the street from Kai's afternoon preschool. 

Here are some pictures of Kai in the water with his Dad (aka "papa).  We took Kai there on most days as it was a very HOT summer here.



The pool is one of Kai's FAVORITE places to be.  This summer he began learning how to swim.  He loves the doggy paddle, and is great at putting his head into the water.  Soon he'll be out-swimming his parents! 





Kai also spent a few weeks this summer visiting his OMA (grandma) and OPA (grandpa) in upstate NY.  He had a ball...had plenty of sleep and lots of activity and good food!  Kai got introduced to ice cream, by his OMA....  and loves it... (what kid doesn't?!)

Kai's GRADUATION: July 2009

This July, Kai graduated from Marindale School.  This was a 2 year preschool program designed to help Kai and other children with developmental delays. 

Kai was part of a wonderful play and language based program and was surrounded by loving teachers, therapists and students. 

This was a bittersweet day, as we are happy that Kai is growing and moving on to Kindergarten, but also sad for him to leave this Class and all the friends he's made there! 

THANK YOU to all the teachers and loving people at MARINDALE SCHOOL.

We appreciate all you've given to Kai~!

Kai Turned FIVE : May 20, 2009!

 

On May 20, 2009 Kai turned 5 years old.  Kai's Parents, along with his Grandpa Bob, Nanny Peg, and many big & little friends turned up to celebrate him!  It was a fun day, complete with a huge chocolate birthday cake, presents galore and a big jumping house. 

Much FUN was had by all.....  especially KAI!

THANK YOU FOR YOUR GENEROUS SUPPORT!

Thank you all for your donations to the FRIENDS OF KAI FOUNDATION.  So far we have raised about $13,000 dollars in response to our first newsletter!  The donations have gone into a bank account and the funds are being exclusively used for Kai's therapeutic treatments.  As many of you know, because these treatments are considered 'alternative' they are not funded by Kai's health insurance.

This money has allowed Kai to begin regular lessons with the Anat Baniel Method (www.anatbanielmethod.com).  He has completed over 40 lessons with a practioner named Neil Sharp.  Neil was a MD in England who moved here to become more involved with the Anat Baniel Method.  According to Neil, the Anat Baniel Method is the most successful method that he knows of to support children with neurological challenges.

The lessons are 45-60 minutes in length and consist primarily of specific movements of the legs and arms that stimulate brain wave activity and help to create more neurological pathways in the brain.  Kai's receptive language skills are nearly normal, indicating a good cognitive ability.  The challenge for Kai, do to the structure of his brain, is COMMUNICATING the knowledge between hemispheres and expressing it verbally.  The AB method works directly with this problem by enhancing communication between the 2 hemispheres of kai's brain.

As a little anecdote, a good friend of ours met a neuroscientist at John Hopkins University and told her about Kai's condition.  Upon hearing this, the woman said that the only thing she knew of to help kai was the Feldenkrais approach with ANAT BANIEL!  She also said that it's a slow process that requires patience.  This confirmed and validated what we already believed...we have found the best avialble for Kai and are on the right track!

KAI'S PROGRESS UPDATE

Kai attends regular Anat Baniel Method lessons with Neil, an excellent doctor from England.  Neil does specific movements with Kai's body which are supposed to stimulate and activate pathways in his brain.  To find out more about the Anat Baniel Method, visit www.anatbanielmethod.com            

IS IT HELPING?  We say YES!  We have noticed progress in quite a few areas...and KAI would like to tell you about this himself....

Gross Motor Movements
I LOVE to move my body!  Now i can walk & run & hop & jump oh yeah and climb...  playing is the funnest thing in the whole world!  I love going to the playground and running around like crazy.  Mom says i'm way more stabile and agile too!

Speech (expressive language)
This is the area where i am the most challenged.  It is still hard for me to move my tongue from side to side in my mouth, which i need to learn how to do if i want to make more sounds. My brain has difficulty telling my tongue and the muscles in my mouth what to do.  In the therapy with Neil, we are doing exercises to help my brain communicate better with my mouth. 

Recently I have begun to use 2 syllablles. One of my favorites right now is Bye Bye and Abba and others….. My 2 OFFICIAL words are "mama" and "cup" which i now say pretty regularly.  It’s cool & the grown ups love it too!                                                                                                         

Cognition (receptive language)
I understand ALOT....almost anything that mommy or papa say to me i "get"!  I love doing board puzzles and playing matching games with my sticker book.  I can point to all the pictures of my vocabulary words when mommy or papa ask me to.   And of course i understand all of the Barney songs!

Anat Baniel works with Kai

Kai's 'therapeutic journey' up to December 2007

During Kai's early months his developmental delay became more obvious, which led us to ask for a Magnetic Resonance Imaging procedure.   After the MRI which diagnosed his partly missing corpus callosum, we started to inquire about ways we could find to support his development. We coordinated play therapy, speech therapy, occupational therapy and physical therapy every week for 2 years.

Definitely it has been a journey of extremes, because parallel to the challenges, we also had the gift to have a child moving through the developmental phases slower. If you would meet him in person now,  we are sure, you couldn't help but want to hold and kiss him. 

Most 3 ½ year olds are already ‘little adults’ to some degree. Kai has kept his innocence because of his delay much longer. About six weeks ago the so called ‘terrible two’ phase has set in, where he starts now to assert his will.We want you know that all of the medical facts have not impacted Kai (the 'Being' that he IS). Kai was and is a happy 'trooper'.  Since he is three, Kai attends a wonderful school for special needs children. He has become an avid climber, no drawer is safe from getting emptied out, and the world is just an adventure for him. A small grass leaf, a twig, a truck that passes by, any animal and particular other children are of utmost interest to him - he lives in wonder of all that surrounds him. He is an invitation to stop and to join him to go back to the time when we also experienced life so full of excitement, joy and amazement.

Within the last two months he discovered Barney, the purple dinosaur, and Barney seems to be the first love of his life. He gets absolutely excited just by mentioning the name 'Barney'. Only one other word brings him into the same state, 'playground'.  For us, as his parents, the challenge lies in meeting him where he is and not let the medical paradigm, which labels him as a 'special needs child' and as 'delayed' cover our seeing of who he is. Admittingly, sometimes it is painful to be with him on the playground around other children his age or younger who are able to communicate like 'little people'. Kai is just entering the phase of vocalization, of repeating sounds like 'bah, bah', 'tah, tah', 'mmmhh', 'kah, kah' and so on. Sometimes a 'mama' or 'papa' slips in without him being able to reproduce it on request. His capacity for receptive language, to understand, is nearly at a normal level, yet his capacity to vocalize is maybe around one percent. That is his edge and we are asked to meet him where he is and to deal with our issues about his situation within ourselves.

The Power of Medical Authorities

Dear friend of Kai,
I'd like to share our most recent experience with Kai at the University of California, where we brought him for an examination. The whole environment is very impressive, high tech, everything top quality, buildings, equipment and so on. The power of the medical institution emanates from this environment by itself. When we had our appointment, an assistant of the Professor we were coming to see, spent 25 minutes with us, interviewing us regarding Kai’s history, from pregnancy until now.

Reasonable and valuable questions that we answered. He also observed Kai walking up and down and exploring the room, which was for Kai much more exciting.  Then the Professor himself came in, white coat, followed by two other assistants.  I don’t recall the details, what I remember is, that he observed Kai for maybe five minutes walking around, climbing around and then asked us similar questions as before. He did a few simple tests, observing him running down the corridor and then he told us about his research project about Children with Corpus Callosum issues into which he wanted to enrol Kai.
When I asked him a question regarding the missing part of Kai’s corpus callosum and what functions the missing of the corpus callosum affected, he said, that they didn’t really know.

When I asked, whether the existing part of his corpus callosum could compensate for the missing part, he said the same.  When I asked him about possible treatments, he referred us to speech therapy and physical therapy, yet he admitted not to know much about existing treatments. As a research professor, his work is all about trying to understand the reasons and the complexity of the condition.

Then Neelama asked him, what was his prognosis for Kai.
In response, in a manner of fact, he stated that Kai would only speak two word sentences. He would need support in his adult life and would not be able to live an independent life. He recommended to us, to start preparing for that with a fund for him, for the time, when we will be gone.

At that point I came in, saying, ‘Professor, is this your assumption?’ to which he replied, looking a bit surprised, ‘yes, that is based on my observation’.

Both Neelama and I were in a state of shock when he walked out.
I actually felt anger arising  in me for him dropping a ‘bomb’ on us in this way.

That night I wrote him the following email:

Life of Kai - Finding Out

In our regular pediatric visits we noticed that Kai’s growth pattern started to be delayed. Particularly the growth of his head circumference lagged behind compared with the so called ‘norm’. He also stayed behind in physical size, which had us wonder about the breast feeding.

Our doctor then pointed out to us, that there might be something else at play and advised us to do some additional testing, which we first resisted. We didn’t want to have it to be true that there could be something ‘different’  with our little prince.

The gap between the so-called ‘norm’ and Kai’s development grew so that we finally accepted the fact that we needed to do more research about what was happening.

The way to find out was to have an MRI. As I recall it was quite a wait, until April, in Kai’s 11th month, when we finally had the MRI at the Oakland Children’s Hospital.

I am copying now an email we wrote right after the MRI, that tells the story:

Life of Kai - The Colicky Phase

Then we were confronted with the fact, that there was something with Kai's belly that had him be in pain. For the next five months, Kai cried every day around 5 o'clock and nothing could stop it. All we could do was carry him pressed on our body, and walk him around or bounce with him sitting on a huge rubber ball.

We literally spent hours and hours walking him at day and night. We got a rocking chair from friends and that was our third way of supporting him. Sometimes these three different ways of creating motion alleviated his pain.