Sunday, June 30, 2013

Finding Our Strength

 
Well since my last post things have started to get harder for Madi.  We had our most recent clinic visit on Tuesday and we were so excited to see 31mm of new bone growing!!  Madi was so excited to move into smaller shoes!  With all of this progress though comes harder therapy.  Because Madi's bone is getting longer the stretches and exercises are getting harder and more painful for her.  This was expected but still not easy to watch.  Its even harder when I have to do the exercises with her.  It literally takes every bit of strength I have to bend her knee to a 90 degree angle while she is pushing back and screaming "you're hurting me mommy".  It kills me each time but she holds no grudges with me and seems to understand that we just have to do it.  As soon as I am done she grabs on to me and hugs me.  She really is the strongest person I have ever met!!  Pin care is much better now thanks to one of Paley's PA's (Servando's) suggestions.  I can't thank him enough for all of his help.  Madi really doesn't mind pin care at all now.  Its still a long process but its getting better.  Madi's nerve pain in her foot is getting better and really only bothers her when she walks too much or at night when we put the knee bar in.  The knee bar holds her leg to full extension during the overnight and a couple of times throughout the day to stretch her muscles.  This puts extra strain on  this nerve.  We are able to control it during the day with heat packs and she only takes pain meds at night. 
31 mm of bone growth!!

  We also try to squeeze in fun things for the kids to do.  They love going to the outdoor mall that has a carousel and a train for them to ride and then we usually treat them to some Fro-yotopia!  We also got to meet lots of new friends at the Paley Nova night this last week.  The Nova psychology doctoral students came and we separated into groups of parents, patients and siblings and got some much needed support.  We also took the kids to a local restaurant to see a balloon guy that comes each week and makes the most amazing balloon figures.  They had a blast. 
Ariel Balloon
 
Feeding Stingrays
 
Getting dolled up for church

  There certainly are ups and downs but Madi really is handling everything so well.  I would say she had more good times then bad.  There are times when she has emotional melt downs but I think its just that so many things are not in her control right now and that frustrating for her. 
Tired and frustrated from exercises
I can sympathize with her.  This journey is testing every bit of strength I have.  I put my mom face on and do the stretches and give the motivational talks but I still have my moments where I just need to go to a room and cry.  Its so hard.  My job as a mom is always to protect my child and keep them from pain but here I am inflicting it.  I just keep reminding myself that its the best thing for her in the long run.  I know it is and God just keeps giving me the strength that I need to forge ahead.  More to come soon.
  Thank you all for your prayers and support. 
 
My beautiful girls!

  
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2 comments:

  1. ABCJune 30, 2013 at 11:58 PM

    Thanks for your latest post and congratulations on those 31 mm! I still remember what this barely visible new bone meant for us (and still does - right now the "new" 72mm are still consolidating). We always took out a ruler to show Benito how much the bone grew. Despite the fact that Benito didn't have to do those exhausting pt exercises during his first lengthening, I can really, really understand what you mean by inflicting pain on your child and feeling distraught about it.

    I recently looked at some images from our two months' stay in West Palm Beach at the beginning of the lengthening process, and looking back those weeks at least look very much like a vacation (a weird, one, ok!). What I find most incredible is that Benito (and his twin sister) also think of our WPB stays as "vacation". So I think it's worth making the effort of arranging for some nice distractions in the hope that that those will be the memories that last... By the way - where did you feed the stingrays and what restaurant is the balloon guy visiting? We'll presumably be back in WPB in August to have the fixator removed...

    I wish you Madi, and all of your family all the best for the challenging lengthening road ahead and a lot of strength!

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  2. Helping HaydenJuly 1, 2013 at 10:13 AM

    Reading your post brings back a bunch of memories. We got to a stage in the lengthening process when things got really tough. Hayden had constant nerve pain in her foot and would either need heat or us to rub her foot constantly. They finally reduced her turns to two times a day, which slowed her progress, but made life much, much better. The stretches are really hard...unless you've gone through it you can't truly comprehend how hard that is. It's been 9+ months since Hayden had her lengthening surgery and we are still doing the same therapy routine 5+ days a week. It's wwwaaayyyyyy better now...but it's still something we don't look forward to. Keep up the good work. You guys are in our thoughts and prayers.

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