Thursday, September 13, 2012


So in the last three months since I posted (whoops!) lots of wonderful things have been going on.  First, we finally - as of today - have finished all of the initial testing that Dr. Dobyn's recommended when we went to Seattle. 

A few weeks ago, we had Luke's MRI.  It showed little to no change which is fantastic.  His ventricles have not increased and his brain is not growing at a pace to turn into Chiari at this point in time.  Yay! 

Today we had a marathon of appointments...kidney ultrasound, neurologist, geneticist, echo cardiogram, EKG....And it was all good.  Great even.  We found out that, as a precautionary measure, Luke will have to have kidney ultrasounds every three months until he is eight years old to check for tumors.  He doesn't have any at this point in time.  Our neurologist was really impressed with Luke's progress.  He recommends to keep doing what we are doing!  He'll have another MRI around three and then yearly after that as needed.  His brain growth has (finally!) slowed significantly.  We will go back to see neuro and geneticist in six months.  We didn't get the 'official' results from the echo/EKG, but the tech who did the procedure told me not to worry.  And it was really I'm just thinking those are good signs.  Right?? 

We always see a physical therapist from Children's Cerebral Palsy clinic when we see Dr. Smyser (neuro).  Ashley was checking out his walking and stance and we were discussing his orthotics (which he grew out of in record time this time!  He went up by TWO shoes sizes!!).  I asked if he would eventually outgrow the need for them.  I thought he could build up the strength not to need them.  But she doesn't think so.  She thinks he will always need them due to his low tone.  He tends to stand with both knees buckled when he is at rest which uses little to no muscle power.  As he gets older, we'll have to make sure he's doing exercises to strengthen his legs and make his stance better. 

Luke was such a trooper today.  I was really anxious about today because we started at 7 and didn't get done until almost 3.  He was awesome!  We took a walk to a local cupcake shop and bought a little sugar to keep him awake through the day and to share with some friends who also had a long day at the hospital.  We sang a lot of songs. 

Our summer was great!  We had the opportunity to go to Branson with some old friends and went to Silver Dollar City.  I thought that Luke would HATE it.  He absolutely LOVED it.  With the help of his orthotics, he was just tall enough to ride the kiddie rides.  Every time we pulled him off of a ride, he would throw out his bottom lip and just let us have it!  He still talks about the teacups and the elephants (Dumbo ride). 

Ben and Luke together are fantastic!  Luke has really started to stand up to Ben.  Pretty much every time Ben comes near Luke, Luke smacks him.  I have to be honest - I love it.  I love hearing them bicker and fight.  It sounds just great!! 

Luke's language continues to blow me away.  He's talking so much more!  He's able to sing entire nursery rhymes - BINGO, ABC's, Jack and Jill, Skidamarinkadink - to name a few.  He's asking for things and using longer sentences.  The other day he told me, "I want to go bye-bye in the car" and proceeded to go get my purse and head out the mudroom door!  He's replaced 'HI-YAH' with 'Oh Man!'  Although he still pulls hi-yah out sometimes.  My favorite thing is when Ben is bugging him and Luke starts yelling at him which leads to Ben running in to tell me, 'Mom, Luke's hi-yahing me again!'  It's officially become a verb in our house...

This fall we'll begin the process to do his official IEP for the school district.  He'll have to undergo testing by Special School District to determine what he qualifies for.  I will be absolutely heartbroken when we have to transition away from First Steps.  Our coordinator and therapists are so amazing and have worked wonders with Luke. 

When Luke was given the new diagnosis by Dr. Dobyn's, I asked his office to put me in contact with other families who are dealing with MPPH.  They told me they would send out my contact information and then the families could contact me.  Well, that hasn't happened.  However, shortly after Luke's diagnosis my very first PMG friend who I met through this blog, Susan, received an e-mail diagnosing her son with MPPH.  Then another family (Andrea and Kyle) who is in St. Louis that I met through a support group received an email with the same information!  Their daughter was diagnosed with MPPH.  Luke and I were lucky enough to spend some time with them at the hospital today while their daughter was going through some of the same testing as Luke.  Then just this week another woman I 'met' through a Facebook group got a phone call with the diagnosis for her son.  So my MPPH world is slowly growing...Anyone else out there???? 

I'm ready for a good nights sleep now that all of this testing is finally behind us...for now!!  Good night!!