Thursday, February 28, 2013

Update on Sam...

  It's been a while since I gave an update on Sam, and there isn't too much new, but here you go...
        Overall, Sam is doing amazingly well.  She started the school year going 2 days a week to her preschool and then we upped her to 3 and in February, we upped her to 4.  It was scary to have her go back to so many days.  She really suffered last year and had some setbacks when she got too exhausted from going 4 days a week. The best thing we could have done, at the time, was cut her back.  So to go back to 4 days a week was a leap of faith, but we have to get her ready for kindergarten next year and see how she'll do.  She has responded SO well.  She goes to a developmental preschool and they have been so supportive, as well as helping keep an eye on her.  She isn't getting overly tired and seems to be maintaing her energy better than I could have hoped for.
      Sam also started a gymnastics class in February on Mondays and Wednesdays.  It was kind of funny.  Her low muscle tone doesn't show up too often, but watching her try and do some of the moves on the trampoline, it was really obvious she wasn't a "normal" kid.  If her body was tight with her arms and legs in, she could jump and control herself.  As soon as she was supposed to spread her arms or legs, her body would just fling about uncontrollably.  It was pretty funny and kind of sad.  But she loved and it and never quit and she was excellent at the balance beam... She hung in there and had a great time.  I was nervous about how exhausted she might get, and she does go home TIRED and sleeps for a few hours, but I haven't seen any lasting exhaustion.

 It got tricky giving her regular naps with the new schedule and just busy life, and I let it slide for a little while.  She'd get a nap every now and then, but not every day.  The last two weeks, I've been back to making sure she gets at least an hour or two (or four...) every day.  It's made a huge difference.  It's so weird that you don't really notice a change for the worse, but then all of a sudden, you realize, "Hey, my baby girls is back...  I didn't notice she hadn't been all here..."  She is very funny and very happy again.  She is just more here. I don't know how else to describe it.  So her sleep is still very, very important and I won't ever let it slide again.  It's tricky because she is old enough to know she's missing out on stuff.  But, thankfully, it only takes her about a minute to fall asleep, so if I can get her lay down, she'll be out...
        There have been some concerning things pop up the last couple of months.  Like I said, overall she's doing amazing, but here is the other side of the coin...  Her teachers at school feel like she is processing things more slowly than she used to.  Like she just isn't getting everything the same way.  Sometimes it seems like a confidence issue and other times like confusion.  It's hard to say and hard to judge.
        Her left side used to be markedly weaker and less coordinated than her right.  That's one of the main reasons she was in physical and occupational therapy from 3 months old to 3 years old...  But it's been a long time since we could tell any difference.  Over Christmas, on the monkey bars, there was a very obvious difference.  And the OT at school thinks her grip is equal on both sides, but she has to use her whole left arm and shoulder (instead of just her hand) to grip as strong as her right.  And there have been a couple of other times we seen it as well.  Tom thinks she should go back to therapy, but it's so mild right now, that I don't know what they'd do to help.  Another thing to keep an eye on.
        And lastly, I think she's younger than she used to be.  Not all the time, but when she's tired in the morning or at night, she's like a 2 year old.  And not just whining, but it's like she regresses to a toddler.  With the better nap schedule, she is having some better mornings, but others she's just younger.  I'm sorry that I don't know how to better describe some of this...
       Her pooping issues are much better and much more regulated.  But her stomach hurts a lot and then she doesn't want to eat, which is tricky since she gets her energy from eating and sleeping.  We are way better off than we were a year ago, and if this is the best we get, we'll take it, but it's hard to watch your child suffer.
And even though it takes longer to explain what we're worried about, she really is doing better than we ever hoped she would.  Facing an unpredictable, progressive thing like mitochondrial disease is sometimes confusing and scary.  I feel like the last year and a half or so have been a gift from our Father in Heaven.  Sam went from an "average" intelligent girl to this super, super smart, determined, amazing child.  It's like she's being given the gift to progress as much as she can, while she can.  I don't know what's coming - what trials and amazing blessing lie ahead, but I am thankful for this time and for the wonderful child that she is.  Our whole family learns from her courage, determination to learn and her never being willing to not try.   I am thankful for this time of having her do so well and be so funny and happy.  She is our little sweetie and we'll take her just the way she is.


  1. Awww, we love Sam. So glad she's doing well. Thanks for the update.

  2. So glad to read the update on your Sam. She is so great!! I'm so glad she is improving and hope she continues too. :)

  3. Thanks April!!!! We are so grateful to have our lives touched by her too!!! She is an amazing girl with an amazing mom and wonderful family!!!!!