Wednesday, October 24, 2012

2 Year Post Surgery Anniversary!



October 23, 2012

This past weekend was the 2 year anniversary of Josie's 2nd and almost fatal brain surgery.  We think back to that time in life and shutter, remembering all of the uncertainty and trauma of Josie's little life.  Fast forward to the present and we are immediately awe struck by the amazing life that Josie is now leading.  We are still in constant prayer for continued healing and development, but 2 years ago, we would never have guessed Josie would be doing what she's doing today. 

Here are a few glimpses, as well as updates on what has been happening with "Jo" as she so affectionately likes to call herself.

"Mirror, mirror on the wall, who's the fairest of them all?"  If you put Josie in front of a mirror, she will immediately point to herself and say, "Jo" and then will proceed to talk non-stop to herself.  Mirrors have been the key to a lot of Josie's developmental progress.  We have a little portable mirror that we keep in the living room, we have a mirror in the van that sits right in front of her and we use mirrors as incentive at her therapy sessions.  In fact she will get bored playing with one of us and search the room out until she can find her reflection - whether in a mirror or in something that reflects, such as the glass on our entertainment center.  Vanity, vanity... :)

Josie is starting to catch up to her 2 year old counterparts, at least in her vocabulary.  She can now say loads of words.  She has her sisters names figured out and will mimic most anything you ask her to say.  She understands what we are saying as well and will answer appropriately with "yes" or "no" or various other responses.  We let her watch a show called "Baby Signing Time" from time to time, and she has surprised us on several occasions that she can sign and say some of things that she has seen on this show.  She is very attentive to anything that will allow her to communicate.  She can make the sounds of at least 8-10 animals when we look through books.  Communicating and being with people are her favorite things!

As far as being mobile, Josie is making good progress in this area of development too.  We have taught her how to scoot around in a circle as well as she can move forward a little now too.  Marc came up with an idea that has helped Josie move a little faster in her scooting and it is in the form of the furniture movers called the "sliding robot".  They are these hexagon shaped plastic discs that have a foam top.  Typically you slip these under heavy furniture and it makes it easier to move the object.  For Josie, it is the same concept, we slip it under her bottom and then she can move her own body faster.   It was a joke at first until we realized that it actually helped her get around better!

She is becoming stronger in her standing and her walking during therapy and at home.  Currently in therapy they are working with her on using a basic walker and she seems to be adapting to it well.  She is still not stable enough to walk with it by herself, but each week we see improvements.  Her arm is also starting to become more active and she will initiate play with that hand and arm.  The fingers on her left hand are starting to show movement too.  Tonight she actually grasped my finger when I was playing with her. 

The last oncology report that we received at Josie's clinic visit proved to be encouraging.  Josie is still on a maintenance dose of chemo every month for 5 days and we were told that the last round of chemo will be in January.  Only 3 more to go and then she will be off chemo completely!  The oncologist also did not see any medical concerns at this time to schedule an MRI until after her last dose of chemo.  Our guess is that she will have her next MRI in February.  This will be the longest stretch of time that we have gone without any imaging of Josie's head - Praise God! 

Last month we had a follow-up appointment with her Neuro-surgeon and once again he was amazed by Josie and what she is doing.  He said he never imagined that we would have a 2 year follow-up from the surgery he thought she would not live through.  He is pleased with her progress, needless to say.

Josie has such a sweet spirit and has showed that she is a fighter.  She is truly a delight and a sweet reminder of God's plan for each of us. 

Many Blessings,
Marc & Darcia