Levi's New (Temporary) Look

Hey there folks, 

I wanted to take a moment and explain what's been going on with Levi.  There is always so much filling up our little guy's calendar - now you'll know why!

For the last several months, we have had LOTS of doctor and therapist appointments, testing all kinds of things.  Nothing too serious -  just seeing where he fits in developmentally and figuring out what services are needed to try to close the gaps.  It seems as if each person and group needs their own test performed.  Some days he has 3-4 appointments.  Poor thing.  If only they could just test him once and be done with it!  

Levi has been going to his special needs preschool for nearly a year, and we have been pleased to see him improve and reach all the goals his teachers set out for him.  With his cerebral palsy diagnosis, we were given access to whatever specialties he qualifies for under California Children's Services (CCS).  Speech is taken care of through the preschool, but on the side, we have weekly occupational and physical therapy appointments.  His 3rd birthday last Sunday ended his time at the one preschool and his case got turned over to our school district.  All geared up with his first IEP, he had his first day at the new preschool on Monday.    

While on the CCS waiting list for physical therapy, we were encouraged to start therapy through our insurance provider.  We started seeing a PT from Kaiser who noticed how incredibly tight and toned Levi's calf muscles are from constantly walking on his toes.  He got fitted for AFOs (ankle-foot orthotics) aka his special boots, which were supposed to train him to walk with the heel down and increase his ankles' range of motion.  Well, no cutesy name could change what Levi thought of them.  After we tried to get his heel all the way down in the boots, especially on his left side, it wasn't long before he had eeked out of it and was screaming in pain.  Back to the PT we went.  Was I putting them on wrong?  Oh, I hoped it was user error!  She reassured me that it was tough, but we had to be aggressive before it got any worse.  Her orders increased from 8 hours a day (we hadn't even made it to 1.5) to 23.  

There was NO way we could fulfill the PTs orders to put him in those things for 23 hours a day.  Every time we even approached him to put them on, he'd run the other direction and fuss.  After a couple attempts at overnight wear and the "you have to wear these no matter how much you complain," his agonizing pain made me want to give up and ask for surgery.  Just about this time, we were placed with our PT through CCS.  I liked her instantly because when I told her about Levi's reactions to the AFOs, she was taken aback and said, "It shouldn't be at all like this.  We need to go with a different plan."  YES!  Thank you!  She got to call the PT from Kaiser (they now are forced to work together ;) ) and encourage/demand that we attempt serial casting.  This process is a gradual muscle stretch.  Today, Levi got a fiberglass cast on his left foot at a gentle 40ish degree angle.  In a week, we go back and he gets a new one put on at a larger angle.  We repeat this cycle for 4 weeks until his muscle has been stretched out pretty good.  So it looks like he broke his leg, but he didn't! :D  

He continues to be a good sport about and during most of his appointments.  I am praying that this method a) works, b) causes minor or no pain for Levi,  and c) puts us on the right path for other improvements.  The new PT said that his muscle tone from toe walking is the source of much of his gross motor delays and his lack of balance.  If we can knock out a few more battles for him by handling this one, I will be so overjoyed!  

As a side report, I wanted to tell you what a thrilling and encouraging Levi week we have had since Noah, Hayden, Scott, and I got back from the Philippines.  (blogs about that will be coming soon)  On Levi's birthday, something seemed to click and the big 3 year old started stringing together words to make up his own little sentences.  They are still very fragmented, but still!  We had barely heard two words together and here he was using up to four!  So we have been very excited to communicate more freely with him.  The littlest improvements continue to be the biggest blessings!  Even today as he was having a sneeze attack on the way home from Kaiser, I told him, "Poor baby!"  Levi retorted me, "No baby me."  "Oh! I'm sorry!  Should I say 'Poor big boy'?" "Yeah!"  He really does seem like a much bigger boy this week!

So that sheds a little more light on what's up with Levi (and some of our family's chaos too!).  We would appreciate your prayers for Levi's casting process to be effective and pain-free!