Thursday, June 16, 2011

Constraint Camp Is Underway

The big news from last week is that the constraint camp is underway.  It has been a lot of fun and Lizzy feels that it is already making a big difference.  In fact, after the first night, she told Julie she could already see a difference.  Yeah!

Being in camp, though, means that her other therapies-- speech and physical-- have been cut to once a day.  The timing has worked out well.  Lizzy is really just focusing on strengthening things in PT, which means some exercises and then lots of walking and stuff.  So, she is kind of doing PT all the time.  Also, the speech theraptist had actually approached Julie about reducing the number of sessions each week.  That was a few weeks back and the decision was made to stick with the old schedule until camp began.  Lizzy has really worked hard to get where she is now, and we are mighty proud of her.

As for camp, she really likes it.  It goes everyday from 12-4 and the first thing they do is put on her cast.  The way it works is they made put a cast on Lizzy's left arm, but instead of going all the way around her arm, there is an opening of a couple inches on the inside part of her arm.  That way they can simply slip it off and on as needed.  Anyway, it goes on at noon each day then, if she wants to eat, Lizzy has to make lunch.  They made chicken strips and carrots her first day.  This is challenging but enjoyable for Lizzy.  She has always liked to make stuff in the kitchen so it is really good for her to realize all that she can still do in the kitchen.  After lunch, they do electronic stimulation a couple of days a week on her shoulder and wrist.  She is definitely not a fan of the e-stim.  It feels weird she says.  Still, it really helped with her arm while she was in Children's so she's doing it some more.  Also, they spend a lot of time doing crafts and playing games.  About mid-week, they painted some flower pots and then planted seeds.  While everyone else planted flowers, Lizzy planted watermelon so she could put it outside when she came home in hopes of Ben not ruining it like he did with her other flower seeds.  We keep trying to explain that he is helping, but I don't think she is buying it.  LOL. 

We know that planting seeds and playing games may seem like pretty easy activities, but for our Lizzy right now they are not.  She is so courageous and diligent.  She sticks with her treatments even when they get tough (which is just about all of the time).  We cannot imagine not having your body doing something as simply as pointing a finger to make a hole in potting soil, so we know it has to be tough.  It would be so easy to quit.  Yet, Lizzy never gives up and is making a ton of progress.  We are so grateful to be her parents.  We love her and continue to be amazed by her. 

In light of some things we have heard, we are pursuing some more medical advice about Lizzy's future.  We feel that what we have learned is good, but we are simply exploring the field to make sure that we are doing all we can to make sure that this never happens to her again.  So, please keep those prayers and well wishes coming.  We are hoping to find out everything we need in the next couple of weeks.  We are talking to a couple of specialists-- one at the Cleveland Clinic and one in Philadelphia.  So, here's hoping for more great news.

As always we appreciate your thoughts, prayers, and loving concern.  We don't feel like we can ever say thank you enough.  So, please know that those two words carry a lot more meaning then they appear to on the surface.

Thank you,
Tom and Julie and Lizzy Smith

Tuesday, June 7, 2011

Two for the Price of One

Have you ever heard the story about Everyon, Anyone, Someone, and No one.  The one where No one did the job that Anyone could have done because Everyone thought Someone would do it.  Well, . . . Julie and I had a little miscommunication (mostly mis-assumptions).  Anyway, we are back at it.

The highlight of two weeks ago was not really medically related.  Julie, Zachary, and Lizzy had their first tornado experience.  Actually, it was more of a non-experience.  Lizzy was at the Rehab Institute and Julie and Zachary were back at the Ronald McDonald house-- both were stuck in the basement.  Lizzy was a little worried because she couldnt' get hold of her mom, but it was all okay.  In the end, they all considered it about half adventure and half boring. 

As you can tell, Zachary got to go down and spend the week with Julie and Lizzy.  He liked it for the most part.  The playroom has a basketball game so he was quite happy down there.  Unfortunately, his mom wouldn't let him live down there. 

Lizzy continues to progress very well.  She has completely lost her cane-- with the therapists blessing.  She can go wherever she wants without a cane.  This is a huge step for her as she seems to feel a little self-conscious (she knows that she doesn't move like everyone else and feels like everyone is staring at her) and the cane simply made her stand out more.  So, we are very grateful for this step.  She still has her brace on, but is working on strengthening her leg muscles.  As her muscles strengthen (really it is the connection between her brain and her muscles that needs to be strengthened), then they will begin hacking away at her brace to allow her to continue improving.  She really walks so well now that it is sometimes easy to think that her journey has been easy, but that is not true.  She has worked really hard and been the recipient of many blessings along the way. 

Her arm and hand continue to progress as well, albeit more slowly.  She had the botox shot and that made an almost immediate difference in her hand.  She still wears her brace, but it is so much easier to put on-- almost no wrestling at all to keep her fingers flat while the straps are put on.  Also, she has an easier time releasing objects that she has grabbed.  The did a test at the end of last week to measure the strength of her grip (in anticipation of the camp she is attending during June).  Her left hand had a grip strength of 20 pounds, and with her right hand she could apply 4 pounds of pressure.  I know that doesn't sound like a lot, but I can still remember the first time she ever even could grip our fingers at all after the stroke.  So, we are completely thrilled by 4.  Beginning this week, Lizzy is attending a constraint camp to focus on her arm.  In the camp, they put a removable cast on her left arm to immobalize it and make it unusable.  Then, they do a whole bunch of stuff that requires the kids to use their impaired arms.  The very first thing they do is make lunch.  The staff feels like this will make a huge difference.  There will be about 5 or 6 kids in the camp, and at least a couple will be girls around Lizzy's age.  Also, at the camp, they do all kinds of outings.  In fact, in a couple of weeks, they are going rock climbing.  How, you ask.  We don't have a clue, we reply.  We are just trusting the doctors.  Lizzy is completely stoked by the idea.  She had us reschedule some testing that was going to conflict with her rock climbing.  Anyway, we will report more on the camp as time goes by, but we are grateful to be able to have Lizzy in it. 

Cognitively, Lizzy is moving on up (yes, like the Jeffersons-- that's a reference for the over 35-ish crowd).  We mentioned a few weeks ago that Lizzy's goal in speech was to be able to identify 40 itmes on flassh cards in a minute.  Well, (drum roll, please) . . . she got  . . . 44!!!!  The goal is now 50 before she leaves.  We totally think that she will smash that goal all to pieces as well.  In fact, the woman that normally does speech therapy with Lizzy had been out for a little while so she hadn't been worked with her in awhile.  Last Friday, she was back and just raved about how far Lizzy has come since the last time she saw her.  We are really glad.

Throughout this whole thing, we have been really blessed and recognize God's hand in all of this.  One example of this happened this last week.  On Saturday, Lizzy started "pool therapy" with a friend of ours.  Basically, they will just do swim lesson kind of stuff.  According to the therapists, any of that swim lesson stuff is beneficial and the pool makes it more fun and reduces the strength requirements for things.  Lizzy was really excited.  It just so happens that when we showed up, our friend's sister-in-law happened to be at the pool with her kids.  That may not sound like much, but her sister-in-law is the woman who will be Lizzy's physical therapist when she returns to Maryville.  None of us knew that they would be there and they didn't know Lizzy would be there, but it worked out.  In fact, there were some reasons to be surprised to see her there.  Anyway, the therapist got in the pool and worked with Lizzy some.  It allowed her a "sneak peek" at Lizzy's abilities, Lizzy got an extra therapy session, and our friend learned some special things she can do with Lizzy in the future.  All in all, a great day.  We should also mention that Lizzy was  a champ.  She still doesn't like crowds especially if there are strangers around, and we think she felt extra exposed to people staring because she was just in her swim suit.  Still, she put her head down, so to speak, and did a great job.  We are so proud of how hard she has been working and love her so much.

We also are grateful for the support of our family, friends, and community.  We say it so much it may begin to sound trite, but rest assured it isn't.  We simply don't have words to express the depth of our gratitude and appreciation for all of the love and support that has come our way.  In fact, to separate family, friends, and community seems a little artificial.  In so many ways, this experience has taught us that all those words mean similar things on many levels. 

Julie, Tom, and Lizzy Smith