Friday, 29 July 2011

Axton's Story 6 - Where Things Are at Now

So here it is, for all of those who have been patiently waiting - Part 6 of Axton's Story. 
Around 3-1/2 months, as anticipated, we began to notice that Axton's left arm/hand were delayed.  To our surprise we found that his right side was delayed too.  His entire top half was quite weak and his hands/arms barely changed position, they were stiff and his little hands would often be found in the fist position.  They would just hang down by his sides very awkwardly.  He had absolutely no interest in reaching for toys.  He would watch toys intensly...we could tell he wanted to be able to play with them, but he just couldn't get his arms working.  Reg and I always joked that he was working on perfecting telekinesis.

Although none of these things really came as a surprise, deep down I guess I had been hoping Axton would just develop "normally" and that perhaps there would be no after effects of the stroke.  Even though I knew of these issues I guess I was kind of in denial - I kept telling myself that once he started physio, he'd just "catch up" to his peers. His prognosis was confirmed when we had a home visit from a social worker from the Niagara Peninsula Children's Center.  This is when I was really forced to accept reality - Axton did have some issues that would not get better, only worse without therapy.  As well, therapy would not be a "quick fix", but would  become a part of our daily lives for months, likely even years.  Since then we've been going to NPCC once a week as well as doing the excercises they teach us at home the rest of the week.

Our work with the NPCC began about 6 weeks ago and Axton has made wonderful progress! Axton is just starting to enjoy "playing". (funny that we had to teach him to play)  His hands and arms are working much better, but he still struggles a lot with his hand-eye coordination.  He's also been working hard at rolling...he's mastered back to front, but we're still waiting to see front to back.  He has even met a few of the goals that our physio therapist had set out for him to complete by January.  He's a different child from the one who started this therapy 6 weeks ago, but we've still got a long road ahead.  He will meet all of his his own time.  This is something I really struggle with!  I have a hard time not comparing Axton to other babies.  I need to remember that Axton is an individual and that he is making some AMAZING progress.  "Normal" or "average" are words that should NEVER be used on kids - each child is a unique individual! 
One thing I am thankful for is the ability to see and appreciate all of the little steps in between the big milestones which normally get overlooked.  I would never have had this appreciation if we weren't going on this journey.  With Holden it was just like, "oh look, he's playing with a toy."  With Axton we get excited when he reaches for the toy, and then we get excited again when he touches the toy, and again when he grabs it, and again when he holds onto it for a few seconds and we get even more excited if that toy reaches his mouth.   These things are so minor, but for Axton, these are the big milstones  - things we certainly took for granted with Holden! 

It also blows my mind that physio and occupational therapists can work with children so young.  Early Intervention is amazing, and is key to the progress in babies who have strokes.   Each week during physio Axton is absolutely pushed to his limit.  He's allowed to start by playing, so the PT can watch his progress but the end of the session is spent stretching and challenging his little body so that he can gain the strength and endurance in his upper body that he needs.  By the time his hour is up the poor kid is screaming!  Despite this, each week he surprises us with new accomplishments - it seems funny, but I am so proud of my 6 month old for working so hard! 

   Axton has been one of the biggest blessings we could have ever asked for and we look forward to what God has planned for him :)  Although this situation wasn't in our plans, it certainly was in God's - we'll just keep trusting him as He know best and we'll see where He takes us next!!

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