Will makes three...

Isabel has been begging us for some time now for a puppy.  She almost had us talked into it and then something wonderful happened...she decided she would be happy with a hamster!  She talked to Ben and they came to us.  We agreed right away!  We just don't have time for a dog right now.  At least you don't have to worry about house training a hamster or taking it for walks!  So last Saturday when we were out running errands we stopped by Pet Smart and picked out Max! Hamsters need a lot of stuff!    Max is getting used to his new family.  I hope he likes all of this attention! This is Max's new condo!  This is also where the kids spent most of their day!

We finally have the results of Will's spinal tap!  The news is very promising!  A typical 4 year old has a folate level of 40-150.  Last summer (June 2011) Will's number was 19!  Yikes!  After taking a folate supplement for just over a year...Will's new number...drum roll please....... is 61!!  Amazing!  We are so happy and excited for what this could mean.  There is another blood test that his current neurologist wants to do called a Folate Transporter test.  Your body needs special protein to transport the folate.  If there is a defect in those proteins this would explain why Will has a deficiency in folate.  We plan to have this test done in the next few months. 

Our summer went by way too fast!  I wasn't even ready for the kids to go back to school.  They started last Thursday (the 16th).  They were not ready to start at all, but everyone had a great day.  Ben and Isabel had two half days to start, so at least they got to ease their way into it.  Mr. Will only goes for half days, so no special early days for him. Ben- Grade 5  Isabel- Grade 3 Will -Preschool I take Ben and Isabel to school, but Will gets to ride the bus!  He loves the bus ride and his bus driver!  Luckily he got the keep her from last year! Here comes Miss Elaine!  Ready to go!

 A couple of weeks ago we went to Shriner's Hospital for an orthopaedic evaluation.  Will wears AFO's (ankle-foot orthotic) to give him extra support when standing or walking in Alfie, but he has never had an evaluation.  My parent's were actually the ones who brought Shriner's to my attention.  It was a little bit of a process to get him in, but it was worth it.  Fortunately, Will shows no signs of having any hip problems and the doctor was happy with his AFO's.  The great part of the very lengthy appointment were the therapists who evaluated Will.  They were very helpful and offered us some suggestions about resources we could tap into and some "tools" for Will.  Thanks Mom and Dad for the suggestion!  Will is waiting to get some pictures taken of his legs.  He also had hip x-rays.

Now that we know about the Cerebral Folate Deficiency, once a year Will undergoes a day (or 1/2 a day) of testing.  He has a MRI so they can compare scans (pictures) of his cerebellum from year to year.  He also has a lumbar puncture (formally called a Spinal Tap) to collect spinal fluid. The fluid is sent to a lab in Atlanta where they will determine the level of Will's folate.  Testing the spinal fluid is the only true way to see if the folate supplement is making any difference.  So on July 26th, Phil and I took Will to Children's Hospital to have these test run.  Will did very well with everything this year.  The pros of technology...Phil has an iPad and he found a Toy Story app that reads a condensed version on the movie to you and then you can "paint" a color page of Woody and Buzz.  Will watched that the whole time they were taking blood and setting his IV.  It was amazing!  They also tried a numbing patch th...

When we got home from Branson we discovered that some little elves had been in our house!  My parents, with the help of a family friend installed these very cool bars in Will's room.  I have been talking about doing something like this for a couple years now, but never could get it done!  I shared the idea with my Mom over the summer and low and behold!  Poof!  Now Will has bars! 

 Mr. Will is not a typical little boy.  Well, he is and he isn't.  Let me explain...Will is typical in every way.  He likes to play with toys, both inside and out.  He loves to swim, or at least try!  He plays well with his big brother and sister.  He's a picky eater!  He loves Toy Story (in any form)!  He goes to preschool, in fact his first day back is this Thursday!  He's a very lovable and happy little boy.  As far as the "non-typical"...Will has many developmental delays.  His language is blooming more and more everyday, but it's still not up to the "normal" 4 year old vocabulary.  His biggest hurdle though, is motor development, both fine and gross.  Will can get around just fine, but it's in the form of an "army crawl" rather than walking or running.  His balance is not good and he has ataxia which makes him "wobbly"  (for lack of a better word).  He isn't able to stand on his own...