Saturday, July 30, 2011

School Again-- And more therapy

We apologize for not posting in so long.  For the sake of brevity (ha!), we are breaking the last few weeks into two posts-- one for the first two weeks of July and one for our family vacation.

The first two weeks of July were a great treat for us.  We were finally together more as a complete family (minus Spencer who had flown out to Utah to visit his Grandma Holly and to work in a camp out there) more days a week than not.  It was awesome.  We had five days a week to simply be together.  Of course, we found things to do-- like chores (Lizzy is pretty sure that she shouldn't have to do them for about another 10 years or until she moves out, but what are you going to do???).  Lizzy pitched in and did her share and found that she can do many things still. 

As an aside, Fox news in KC did a story on the kids at the constraint camp and ran it during this time.  You can still see the clip at this link:  http://www.fox4kc.com/news/education/wdaf-teen-puts-wind-in-the-sails-of-physically-challenged-kids-20110706,0,2609001.story.  The story itself is actually about the kid who organized the sailing trip for the kids at the camp.  He won an award for his work.  For our purposes, though, you can see Lizzy several times sailing on the boats and they interviewed her.  There is a short clip of her interview as well.  For those of you who are interested, you can purchase autographed pictures of the new TV star for only $19.99 plus shipping.  LOL.

The biggest event of these two weeks was Lizzy's return to school.  During the summer, her school meets only in the mornings Monday through Thursday.  So, Lizzy was able to go both Thursdays.  She had a great time.  We stayed for the first little while the first week, but her friends at school were tremendous at helping her out when she needed it.  Interestingly, her seat was next to a boy who had broken his thumb and hand.  So, he couldn't use his dominant hand either.  As her teacher said, together the two of them made a whole person.  :)  Lizzy thought that was great and enjoyed being back.  She quickly jumped in as the class made an amulet to ward off homework or other sinister things (they are studying Ancient Egypt) and she participated in a lesson on force and pulling.  She did great, although she did try to play dodge ball (a huge no-no for someone with a head injury), but her teacher caught her and pulled her out quickly.  The second week was just as good, if not better.  She loved being back and participated like she had never been away.  We are so grateful for the school-- the teachers, faculty, and students couldn't have been better.  They all welcomed her with open arms and warm smiles.  What a great place.

As part of her therapy during this time, Lizzy was fitted for a new brace.  The new brace will be considerably smaller than what she has now and will hardly be noticeable.  It will provide minimal support to her knee while still helping her ankle to keep her toe from dragging-- which is mostly a problem as she fatigues.  Lizzy chose an orange swirl pattern for the brace.  It should definitely stand out.   Plus, it marks a major milestone forward for Lizzy.  The braces are great, but it is a balancing act to find a brace that provides enough support to allow her to do all the things she wants to do (within reason-- no dodge ball), but at the same time require her body to do as much as it possibly can so that it can continue to recover.  Consequently, getting a new brace represents a huge step forward in Lizzy's recovery. 

Finally, we got the results back from her testing.  A couple of posts ago, we mentioned that we didn't have a lot to say beyond some general comments about Lizzy's progress cognitively.  Well, now we do.  Overall, the results are very promising.  Since the test happened so soon (relatively speaking) after the stroke, they expect considerable continued improvement.  We hope so, but already we have been so blessed . . .  Anyway, the test results put Lizzy's cognitive abilities in the average range for her age.  So, in many ways she is already at a point that with continued learning, she will be able to do basically everything kids her age do.  There were some areas that stood out, though.  First, Lizzy's narrative comprehension was in the high range (91 percentile for those of you who follow that stuff).  Her math scores were also pretty high.  Interestingly, her lowest scores were in visual memory-- especially faces.  In fact, there were two tests that measured her recall of faces-- one measured immediate recall and the other delayed recall.  Her scores here were almost the opposite of her reading score.  Her immediate recall was 9 percentile and her delayed recall 5 percentile.  So, if Lizzy doesn't recognize you the next time you see her, you now know why.  Actually, all of her visual memory is low.  Mostly what this means is that she doesn't remember where she put stuff.  Tom has been trying to be patient with this for the last couple of months and now he knows why it is an issue, although that doesn't help a lot when he is in a hurry to leave and Lizzy can't remember where she put her brace or shoes.  LOL. 

As always, we love our Lizzy and are grateful for her recovery and support.  We are also grateful for your continued prayers and attention. 

Thank you,
Tom and Julie and Lizzy Smith

Monday, July 4, 2011

Addendum and a double edged sword

One of the blessings coming out of the stroke is a softer, gentler side to Lizzy.  She is much quicker to say "I love you" and "thank you" spontaneously.  (another great blessing is her newfound love of spicy food-- can anyone say "Mexican for dinner"?  Tom especially is grateful).  Evidence of this was in full bloom last week.

Last week, Lizzy was approved as a "Make-a-Wish" kid.  We are excited about that because she can always use more brightness in her life.  However, that approval is also a bit of a downer because it is an acknowledgement that her condition is a continued risk to her life.  She could live 70 years but maybe not.  Being chosen for Make-a-Wish brought that home.  Still, we talked about it with her and determined that it only meant that Lizzy (and all of us) should live each day to its fullest and fill it with the most important things. 

When discussing what she might do with her wish, Lizzy was having a really hard time thinking of something to do.  We had not expected this.  We thought that Lizzy would quickly have something to wish for.  Instead, she was completely drawing a blank.  Finally, Julie asked her why she couldn't think of anything.  Lizzy responded, "I have a loving family.  I don't need anything else."  It is a really good thing, she didn't ask for a convertible right afterwards because we probably would have said yes.  Yes, Lizzy has a loving family.  And she is a vital part of that loving family.  We are so grateful for her in our lives.   She has always brightened our days and made us so much better.  We love Lizzy!!!

What a Great Independance Day!

Lizzy's last day of full camp was last Friday!!!!  She is so excited not to have to go back right away.  She is now down to 2 days a week of rehab in KC and one day a week here.  That means she also gets to go back to school one day a week (Thursdays).  It has been strange for Julie as well, because she doesn't have to begin preparing to leave a half hour after getting home (at least that is what it felt like).  We had a great weekend as a family doing nothing really except relaxing together.  What a great time.

So, we were asked the other day, what percent Lizzy is back to and that seems like a good way to report on her progress.  These are our opinions, not really scientific, or based on a therapist's view, but here goes:

Legs and mobility-- 60%.  Lizzy can walk basically everywhere usually with no assistance.  She is not graceful when she walks and her stride is a bit different, but she is steady on her feet and falling is not a real issue.  She can go up and down stairs with no assistance; someone simply needs to be at the bottom of the stairs watching her in case there are problems.  Again, it is not very elegant, but she's solid.  She just received permission to "run" on soft surfaces, but not on hard surfaces.  So far, she hasn't really exercised this freedom to my knowledge.  They are trying new leg braces on her.  Her original brace was designed to be cut down, but since it broke so much they ended up putting in metal hinges and now cutting the brace down is not an option.  This weekend she has been using a hard brace for sprained ankles.  It has been working pretty well, but her gait has changed and we expect them to move her to something with a little more support.  All in all, though, she can walk anywhere without any trouble but the smoothness of her stride is still coming.  So, for now, a 60%, but that will go up.

Arm-- 30%.  She has good movement in her shoulder and arm, but it is still awkward and a bit jerky. Constraint camp really helped her remember to try to use her right arm. She can eat chicken strips and pizza rolls (camp food staples) with her right arm/hand without any help.  Holding an eating utensil with her right hand is still difficult, but she has a plastic tube that she can put it in that helps some, but using it is still more therapy than eating. She is still working on grasping with her hand. She is doing wrist excercises that are  helping, but it is very slow in coming.  Occasionally she gets some finger movement going. We will be trying a new arm splint later in the month that we hope will really help with her grasping ability.

Speech - Not sure of a percentage here. Since speech is not just speaking, but encompasses brain function as well, this is difficult for us to label. We should know more after the results of her neuropsycology testing come in next week. She does seem like herself for the most part. She can say just about anything she wants to, and her speaking is totally clear. She rarely has trouble finding the word she wants to use, but does generally use smaller words than before. She has started reading again! Rick Riordan's new book came out recently and she "borrowed" the copy we had set aside for her brother for his birthday. Since she was reading again, often without us asking her to, we decided to get her brother another copy. Whereas before she would likely have finished the book in a day or two, she is now going on a week or two and is still somewhere in the early middle, but we are thrilled. We hope that in time she will love reading again.

Again, thank you all for your interest in and support of our wonderful Lizzy. We are truly blessed!