Friday, April 8, 2016

2 steps forward 1 step back

 
     If you've ever dealt with medical, or really anything in life, it never seems to be a clear uninterrupted path from beginning to end with no caution signs, detours or peaks and valleys; but to be honest if it was that 'grand' then it wouldn't be life, we'd never learn anything and there's no way we could be as grateful as we are during the good times in life.  As we end this week the good has definitely come with the bad but no matter which won, we survived and that I am proud of!  When it comes to this blog I'm going to be honest so please don't take my updates as ungrateful or angry...it's just life. 
        This week we had our first post-op doctors appointment, another full week of PT under our belts and made it a whole week without a car and Adam.  This week was a little rough emotionally but watching Zackary improve everyday was great. 
   When it comes to PT we received the calendar for April and for the whole month we are scheduled Mon-Fri.  This is not a surprise at all but I think it made it more real to see it all written out knowing this was life for right now.  Zackary has done AMAZING at PT and pushes himself more then he should most days.  The therapists are very pleased with his progress and continue to remind us that this is not the norm and at some point he will actually hit a wall and most likely regress a little and that's why we are pushing him so far now.  I'm also getting pretty good at our in home PT and seeing Zackary stretch farther then he ever did even before the surgery!  This week another thing got added to our schedule (this was the hard part of PT this week). Monday morning he was fitted for a removable cast that he has to wear twice a day for 30 mins each.  This makes his leg stay straight which is one of the motions he will lose first.  He's done great with it and the therapist said that at some point, if he needs it, he will get tighter bands for resistance and possibly sleep in it.  So, this is how you'll catch Zackary twice a day.....
     The doctors appointment yesterday was also full of ups and downs.  After PT we headed to another floor of the hospital and got xrays and a check up by Dr Herzenberg.  He said he is very pleased with the separation of the bone which means the lengthening part is going well, but he's not completely happy with the amount of new bone being produced.  He is worried that the bone could separate to much to where the new growth wouldn't be able to connect so they backed down his leg lengthening sessions from 4 times a day to 3 times a day.  It's not a huge change but it makes it 96 days from today for total 8cm growth as opposed to 72 days.  He did say this is common and if his bone starts to grow quickly then they will up him back to 4 times a day so not to worry.  He reassured us that it's a week by week basis and he has no worries.  We do go in every 7-10 days for xrays and consultation so who knows what will happen on the 18th (our next appointment).  He also was very pleased with his incision healing and his flexibility.  He says that the main reason we would ever have to stop the lengthening process early would be if he starts losing the motion needed in his knee to walk properly.  In his words 'we'll never give up flexibility for length' and in the long run it makes sense.  Here's a look at the xray (same xray just in one photo the growth is pointed out).  It sure is amazing all that modern science/technology can do.
     The rest of this week has flown by with a few hiccups in pain for Zackary which sadly we were told is actually the norm and the therapists were wondering when it would kick in for him.  This is so hard to watch as a momma, but we are seeing this as growth and staying on top of Tylenol and ice.  We've also had a lot of fun one on one time and Zackary is quickly becoming a ping pong master (yes he plays in his chair) so if he asks you to play prepare to bring your A game!  Overall the week has been more good then bad for sure, so now we just pray for high flexibility, low pain and great growth!
 
Until Next Time~
Momma Miller

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