Friday, November 25, 2011

A Thankful Update

I suppose it it a good thing that we haven't updated this in awhile, it means we have been busy with life, and that is a very good thing. A lot has happened since our last update, which is why we haven't written! Lizzy went back to school at her old school, and then, when that didn't work out so well, we moved her to the Middle School in town.  She has just flourished since changing schools. Immediately after the switch, it was like she became herself again. She was stressed at her old school and her new school has been fabulous in making it a great environment for her. She has a reduced schedule and is done by 1pm everyday so we have time for all her daily therapy (which I will get to in a minute) She has a great group of new friends there who are a lot of fun and very helpful and kind. A wonderful girl named Sidney has been assigned to be Lizzy's buddy. She waits for Lizzy every day in the office and then they take the elevator up to the 6th grade floor. At first she walked her to all her classes, helped her at lunch, and introduced Lizzy to all her friends.  We are very grateful to Sidney for her kindness, thoughtfulness, and friendship!
The teachers have been so wonderful to work with too, helping her and adjusting assignements to fit her needs. She is doing very well too! Her grades are back to what she was doing before the stroke and her testing shows that she is at, or above, grade level in all academic subjects. In fact, her special eduation teacher told us that having Lizzy in class, was like having another teacher there as Lizzy would assist the other students too.
Lizzy does sometimes need a little help with some things, and she does get tired even with her reduced day, but overall we couldn't be more pleased. Lizzy "graduated" from the Speech and Physical therapy she was receiving outside of school at the end of October as well! In September and October we had therapy visits after school usually four days a week, we have enjoyed having a little more time after school in November. She still has some progress to make in both areas and still wears her leg brace when she is out and about. We are still doing some PT at home and thanks to a wonderful friend, Megan, Lizzy is doing pool therapy on occassion too.
As for her arm, we finally got insurance approval for the saebo device used to help arm movement. It is a spring loaded device that fits around her fingers and cups her arm and hand and helps to break down the tone in her hand and strengthens the muscles in her hand, arm, and shoulder and assists with improving the nerological pathways between her brain and arm too. It is a lot of work, as she has to do around two hours of work daily just on her arm, and she doesn't always like it, but we are seeing great progress. Her shoulder looks so much better and is more even with the rest of her body an she can bend her elbow and even pick up things like sandwiches and bring them to her mouth. The actions aren't exactly graceful yet, but things are getting more controlled every day. It is a blessing to see!
Her mom or dad have to help her with her daily excercises too, so she is getting a lot of quality time with them. We read to her as we count her ball lifts and we have been through quite a number of books already.  Lizzy is also earning "points" for all the excercises she does and after earning 150 of them, she gets to pick a reward. She has been to her favorite restaurant in town twice already and is thinking of earning a night at the movies next. It is still hard, and it takes her about a month to earn a reward, but it gives her something to work toward.  We will be finishing up our last OT visit next month and then we we be completely on a home program for her arm.
This last week we had another appointment with Lizzy's nuerologist.  Some of her recent tests have been a little confusing.  They show some irregularities in the blood flow in Lizzy's brain, and it's unclear if that is simply on account of the stroke or if it is showing that more trouble might be coming.  He did say that another stroke was a definite possibility.  When and where we don't know.  On the bright side, he did believe that another stroke would be recoverable for her.  Still, he would like to have a better look than ultrasounds and MRI's can give him.  So, next summer we will travel to Houston to have another angiogram, but this time they will take the camera right up into Lizzy's brain to get up close and personal pictures of what is going on.  It's a bit sobering, but not completely unexpected.  Also, it was interesting to see Lizzy during the appointment.  Apparently, she has been doing a ton of research on FMD and had a bunch of questions for the doctor.  It turns out that she knows more about FMD than both parents put together.  We learned (Lizzy already knew) that there are 5 types of FMD, and Lizzy has the rarest form (only 16 known cases in the whole world-- adult and kids put together).  Not only was Lizzy's research a surprise to Mom and Dad (we thought she was watching movies on her iPad), but also it seemed to have Lizzy prepared for everything the doctor said.  She has her down moments, but overall she is optimistic and upbeat about things.  She just takes them in stride, which is amazing for anyone, let alone a girl of 12. 
Overall, we are just so grateful and thrilled with Lizzy's progress. She really is a walking, talking miracle! As we sat around the Thanksgiving table and remembered just how blessed we are to have her with us, our hearts were very full. Once again, many thanks for your prayers on her and our befalf. Miracles do happen! We are looking forward to a wonderful few months ahead, with even more progress as Lizzy recovers.

What Lizzy has learned since her stroke

Lizzy was asked to give a talk in Sacrament Meeting last week. This is her talk, just as she wrote it.

As you know, I turned twelve last month. As litle as I wanted to, my Dad assigned me a talk. When he was released from the Branch Presidency, I though I got out of it, but the order still stood.  I was assigned to give a talk on having faith through trials. As you all know, I had a stroke in March and these are some of the things I've learned the last few months.

First, I've learned to have confidence in myself. When I look back at how I was in March and how I am now, it really surprises me at how far I've recovered. Before I was laying down in a bed and I couldn't even roll over. Now, I can't do cartwheels, but I couldn't do them before the stroke, so it really doesn't even matter. I learned to have self confidence because of how much I recovered. If I recovered that much, I can still do a little bit more, whether by my physical therapist's order, or mine.

Second, trials brought me closer to Heavenly Father and Jesus Christ. I remember laying in the ambulence and thinking, "I can just make it through." Heavenly Father and Jesus Christ helped me make it through and are still  helping me. Whenever it gets tough, I pray for faith and the strength to keep going.

And the final thing I learned is to never take life for granted. When you've come this close to death, you'll understand. Before I was just your average kid, now I relize that I'm special.

I want to close this talk with my testimony that I know this church is true and that Heavenluy Father has helped me through all the many wonderful and terrible times in my life. In the name of Jesus Christ, amen.

Wednesday, September 7, 2011


So, we said we were cutting up some time to make it more manageable, but you thought that meant we were going to be more timely in updating.  Silly people.  Actually, it is always on our minds, but in the day-to-day rush of things.  Well, you know . . .

Anyway, from early on after the stroke.  Lizzy was concerned about going to space camp.  Space camp is in Pleasant Grove, Utah and is a camp where kids learn about space and perform "missions" in similated space ships.  The missions themselves are very Star Trekkie.  Last year, Lizzy and Spencer went and absolutely loved.  They loved it so much that they began planning their return trip on the way home last year (Spencer spent the summer working as a volunteer at the camp).  In fact, right before the stroke Lizzy had finished earning enough money to pay her way.  So, she started asking about going to space camp about 2 weeks after the stroke.  At first, the doctors weren't too keen on the idea, but as Lizzy improved, they got on board with the idea and finally gave her their blessing.  So, Lizzy was stoked.  Then, when Lizzy's grandpa heard that we were going to be that far West, he organized a family reunion of all of his kids and their families, and he made it possible for us to spend three days in Disneyland.  So, all of a sudden what had begun as a dubious trip to a space camp for four days turned into a two week marathon of fun and driving (I have heard rumors that those two are not mutually exclusive, but  . . .  LOL). 

The first leg of the trip was great.  A friend of Lizzy's was able to go with us to the space camp.  It was awesome.  Lizzy couldn't spend the night, but we would pick her up about 11pm each night and then return her between 7:30 and 8:00 each morning.  The rest of the day, she was blowing up aliens or working as the engineer or weapons officer.  She loved it.  Spencer did a great job of keeping an eye on her and telling us often how well she was doing.  The four days of camp were so good for Lizzy.  She got to hang out with a bunch of kids here age and interact as a normal 11 year old.  It gave her confidence another shot in the arm, which was needed.  Most of all, though, she just got to have a lot of fun. 

After we picked up Lizzy, Spencer, and her friend from space camp, we took her friend to stay with some of her family (who brought her back to Missouri when they came a week later to a family reunion) and headed to Las Vegas.  On the way down to Vegas, we stopped to see Julie's grandma.  Grandma Stansfield is still going strong at about 90 years old.  In fact, I wouldn't want to be her husband-- he passed away a few years ago and she's a bit miffed that he hasn't come for her yet.  Still, she is in great health and we hope she's with us for a while longer.  It is always a treat for our family when we can see Grandma. 

In Vegas, we stayed at Julie's dad's house and did absolutely nothing more strenuous than swimming in the pool and changing the channel on his big screen TV.  This was probably Tom's favorite part of the trip.  :)  Julie's dad joined us the second night and then we headed to San Diego.  Or so we thought, Grandpa was too busy playing and singing with the kids to actually take the right exit.  So, while Julie and Tom tried to figure out how you ended up getting south by going north, he just kept a speeding on-- emphasis on speeding.  Fortunately, (kind of), he got pulled over for speeding about 20 minutes past the exit, and we were able to ask him about where he was going.  Zach and Hannah, who were with Grandpa, put on the charm and had the police officer eating out of their hands.  That was good for Grandpa because he didn't have the title or the insurance and the car was registered in a different state than the one the gave him a driver's license.  He got off with a small speeding ticket.  Then, we were off, and so proud of grandpa who only missed two more exits the whole way down.

In San Diego, we got to see the newest addition to our family, Aunt Stephanie's new baby girl (less than a week old when we saw her).  What a cutie!  We are all glad that Uncle Jeremy's genes stayed out of the way on that one.  We held her and did our best to spoil her as much as we could during our hour together.  Then, it was off to spend the night in San Diego's Safari Park.  We were right between the lions and the elephants (that way if the lions escape they don't eat the park's big investment, they just get some out-of-towners.  That's what we call a win-win).  They had a really nice program in the evening and the next morning with some private tours and backstage kind of stuff, but we did hope for some more noise during the night.  The lions roared a little around 5am.  Other than that, the only excitement was a false alarm around midnight.  At first, people thought the lions were roaring, but it turned out to be Tom snoring.  :)

Following our time in San Diego, we went to Anaheim and the Magic Kingdom.  We have learned a couple of things about visiting Disneyland during the summer.  First, don't.  I swear, if you weren't there, you were about the only one.  We are pretty sure that everyone else in America came the same week we did.  Second, if you ignore our first piece of advice, take someone in a wheelchair.  The handicap wait times are super short.  While there were a lot of rides we couldn't go on because of Lizzy's condition (roller coasters are no longer a part of her future), there were a ton that we could and we had a super time.  We tried to do everything in sight as Lizzy and Julie planned out our daily route including food options and rest breaks.  It really was a great few days.  Lizzy got to go on Pirates twice and Hannah got to see the Princesses.  There isn't really anything more a person could ask for. 

After that, we headed home.  It was quite a long drive, but we were all relaxated and ready to face the world again.  Of course, when we got home the air conditioner had broken down and it was 95 degrees in the house, but that is another story. 

Until next time, thank you for your continued interest and love and prayers.

Tom and Julie and Lizzy Smith

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!

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

Wednesday, May 25, 2011

Best Doctor's Appointment Ever

Lizzy had an appointment with the neurologist on Monday, and it is the best doctor's appointment that I have ever been to.  More about that later (I believe that is called a teaser). . .

Lizzy's therapy is coming along really well.  She was given permission this week to go up and down stairs with only one foot on each step (the way most people do).  Before, she could go upstairs, but she had to put both feet on each step.  It was slower but reduced the stress on Lizzy's right leg.  She didn't like it, so this is a great event.  She isn't much faster, honestly.  But she feels better about it and it is one step closer to being back to normal.

Her hand usage continues to improve.  However, she is starting to battle 'tone'.  Tone is when the muscles contract on their own.  In Lizzy's case it affected her fingers.  So, her right hand would be clenched into a fist all of the time.  It is a sign that more functionality and control are returning.  Ironically, though, it also slows down progress because you can't work your hand as you want.  For example, we had to stop a number of times during her night time exercises to straighten out and massage her fingers.  The therapists figured that this was coming so they had already taken some steps to fight it a little bit.  This last Friday she was fit with a Saebo brace.  It's like an ironing board that runs from her elbow down to the tips of her fingers and we strap her arm and hand in (with the fingers straightened out).  She sleeps in that every night, although she moves so much that it slips off some during the night.  Still, it already seems to be having some effect.  Also, this Friday, Lizzy will go in and get botox shots in her hand and wrist (yep, same botox, different purpose-- original purpose actually).  That will keep her muscles from spontaneously contracting and put them more under her control.  According to the therapists, it should be a great help.  So, we are looking forward to it.

Lizzy's speech and cognitive abilities continue to improve.  She is reading more and more on her own and out loud (each night as part of homework she reads aloud).  In fact, the last couple of weeks we have caught her reading on her own a couple of times.  This is big.  Before the stroke, Lizzy would disappear into her room for a couple of hours at a time to read.  Since the stroke, though, she has trouble staying on the right line as she reads.  As a result, she will skip sections of the text or insert words from the line below into what she is reading.  Couple that with the difficulty in maintaining the necessary concentration to understand what she reads and you can see why she kind of stopped reading.  She is getting back in the saddle, though, and everyday is better.  So, this last week when I caught her reading the Reader's Digest while she was waiting for us, I almost squeezed her stuffing out, as Hannah would say. 

Well, for the big news.  Lizzy met with the neurologist this week.  This is the same doctor who oversaw her care in Children's Mercy and we really like him.  He examined her and talked with her.  He was really impressed with her strength and said that her strength was not an issue at all.  All we are waiting for is the brain to learn the way to her arm and foot again.  He was especially impressed with the top 80% of her arm and leg.  Her wrist, hand, ankle, and foot still have some distance to go, but he said that she was AHEAD OF THE CURVE in terms of recovery.  Also, he took brain surgery off the table.  It might be put back on the table at some point, but only if things radically change.  NO TRIP TO HOUSTON for us.  Lizzy is a little disappointed in this, because she thought it would be kind of cool to have some metal in her head, but she is over the disappointment.  :) 

Well, as you can see, the prayers are working.  We are so grateful to have such a warm group of friends and such a caring, giving community.  Thank you to all of you for all of your kindness and thoughtfulness. 

Tom and Julie and Lizzy Smith

Tuesday, May 17, 2011

May 15

Okay, it's not actually the 15th, but that's what happens when Dad is in charge for a week.  :)  Anyway, Lizzy had another great week, although it was a shorter one.  Lizzy's therapy is still going well.  Her walking gets better everyday, and she is more confident with it.  She is still working on grasping and releasing foam balls.  She uses the softball size nerf balls and the smaller water balls that you play with in the pool.  This weekend, though, the balls were left in KC so we used stuffed animals and socks instead.  The stuffed animals were challenging because there were so many different sizes, but Lizzy claims that it was more fun to do it with the animals.  In speech she is still working a lot on word recall.  To do this they show her pictures of everyday things-- a bike, an apple, a coat-- and she has to come up with the word.  She does pretty well and works hard.  Her goal is to get 40 in one minute.  Her current best is 35.  So, that's coming along.

The biggest news this week is what happened at the end of the week.  Lizzy came back to Maryville a couple of days early to attend the awards ceremony at her school.  She was excited to come back and had wanted to attend school a little bit in the morning, but in the end she didn't feel up to it.  Still, she went to the awards ceremony and had a really good time.  Before the stroke, she had already qualified for a number of awards and was able to receive those. One of the awards, though, meant quite a bit to us-- the Extraordinary Reader Award.  In order to win this award, students have to read a number of different books in a number of different genres.  Lizzy had not finished working on this award before the stroke; she was 3 books shy of fulfilling all of the requirements.  After her first week in the hospital, she wanted to ask for an extension on the time and wanted to finish the requirements.  We got the extension and the librarian helped us find the right books.  Julie and I read them to and with her over the next few weeks.  In this way, she was able to fulfill the requirements for the award.  Then, on Friday, we went to the Omaha Zoo as a family.  We had been planning to go the 25th of March, but then the stroke happened.  So, we took this opportunity to go.  Lizzy was a real trooper. She hiked all around the zoo and only rode in her wheelchair a little.  We got a great picture of her with her grandparents-- the three caned Musketeers.  What a group.  The whole family had a great time.  It's funny how all of us (even the kids) are much more aware of and appreciate to a much greater degree time when we can all be together as a family now that we have so little of it. 

We are so grateful for all of our blessings.  They are too numerous to list, but we are especially grateful for our friends and neighbors here.  We are so glad that we can call Maryville home.  The town members, our friends, and our church family are the absolute best.  Thank you to everyone.

Tom and Julie and Lizzy, too. 

Sunday, May 8, 2011

May 8

Wow! Do we have great friends and a wonderful community or what?  We are so thrilled with all the support we received at the auction on Friday night.  By pizza estimate (how much was eaten) it was figured that there were around 300 people there.  It was a successful auction and will really, really help towards covering her bills. We all feel so loved and supported. MANY, many thanks to Les and Kristen for heading it all up, and to the many people who also donated their time and talents toward serving our family.  We also want to thank all of those who donated items to the auction or who have given Lizzy such wonderful gifts. She truly feels loved. We are, as they say in the West, much obliged to you all. We truly feel very blessed to have so many wonderful people in our lives who are so willing to help.

As for Lizzy, besides feeling like she is the most popular kid around, she has also had a good week in rehab therapy. She started out on Monday by being able to leave her cane behind when she was inside our room. The next day, she talked her therapist into letting her have the run of the whole Ronald McDonald House and then, the next day after that, pointed out that she could walk safely anywhere inside a building. He was good about it, but put his foot down when she tried (and she did) to talk him into forgetting the cane when she wanted to go outside. Friday brought another therapy victory. She was able to take off her shoulder brace and just have it taped up instead. She looks kind of interesting with black tape in strange patterns on her right shoulder, arm, and down her fingers, but we tell her she is just a trend setter. She is grateful they replaced the neon blue tape they had used earlier in the week on her hand with the black because I kept calling her a smurf - the tape was exactly the shade of a smurf. The problem was, Lizzy didn't know what a smurf was! Luckily one of her therapists and I were able to convince her that smurfs were cute. I think she believes us.

Lizzy has really enjoyed being home and being able to be with her friends for even a short time. She had a great time at the auction on Friday and insisted that she did not want to sit by us, and sat by her friends instead. She is also enjoying the new freedom of walking around without Mom or Day by her side. We are grateful to two of her church friends, Miriam and Gabba, for being her "body guards" the last few days.

We are looking forward to another great week - it will be a short on therapy as Lizzy insisted that she be allowed to come back for the Horace Mann graduation and awards ceremony. We are also going to take Lizzy up to the zoo in Omaha this week since we were planning to go there over spring break and ended up in the hospital instead. I think she is excited about getting to have wheel chair races with her grandparents around the zoo.  It ought to be an interesting week. . . . thanks again, everyone!

Monday, May 2, 2011

Lizzy had a good week at Rehab this week, although her brace cannot say the same thing.  Lizzy's has brace has broken 4 times over the last two weeks.  One time the brace lasted only a little over an hour.  Her therapist says he has never seen a brace break at all!  She is now walking with a regular cane and is doing so well.  It is amazing when you don't see her everyday to see her at the end of the week and see how much progress she is making.  What a blessing.

In speech, she is setting, reaching, and surpassing her own goals all of the time, which is really exciting.  She is working on speedily recalling things.  She can remember lots of things, but it tends to take a little bit of time.  So, the focus is on speed-- getting her to recall things quickly.  This last week she wanted to be able to identify 30 picures in one minute (her previous best was 24), and she did it. 

Lizzy and Julie have made some good friends at Rehab and in the Ronald McDonald house (there are a few kids in both places with Lizzy).  So, she enjoys being with them, although the nights are a bit lonely.  So, if anyone is in KC and looking for a great way to spend a couple of evening hours, the RM House has a magnificent game/TV room (Wii, foosball, big screen tv, games, etc.).  Although we warn you, Lizzy is becoming perhaps the world's greatest Life player, so take her on at your own risk. 

On a bit of a bummer note, they have decided to extend Lizzy's stay in Rehab until the middle of July.  This is a little discouraging, but we know it's for the best, and even Lizzy is upbeat about it.  Still, we miss being a together family everyday and the weekends are far too short to squeeze a week's worth of family fun into (although, the kids try). 
As always, we are grateful for all of your well wishes and especially prayers.  We can feel your support and love surround us all the time.  A special thanks goes out to Kristen Bates and Les Ackman for all the work they are doing for the auction this weekend.  We are also very grateful to the many people and businesses who have donated items as well. This will be our last email about Lizzy's progress, but we will continue to update the blog weekly atwww.welovelizzy.blogspot.com.

Thanks again - for everything,
Julie, Tom, and Lizzy Smith

Monday, April 25, 2011

All about Liggy!

Hi all -

Thanks for your continued interest in Lizzy and her progress. She is improving every day, even though the improvements are small. She is now walking with a one point cane (we got to pick out a fancy blue one at the drug store this weekend) and although she admits that she still needs it, she would really like to leave it behind. In fact, she tries sometimes, but doesn't get too far. She is also trying to leave her parents behind. She is supposed to have someone walk with her at all times, but she tries to ditch us. Hmm . . . preteens not wanting their parents around? There's a surprise!

Her arm movement is improving a little as well. With great concentration she can pick up a sponge ball and move it a few inches, and usually drop it as well. Dropping is harder to do than grasping, so this is huge. She is also making progess cognitively as well, although she would much rather have us read to her than read herself at this point. We really hope she will get back to the point where she can, and wants, to read all day on her own again. In other news - her leg brace broke twice this week! This is odd, as her therapist said he has never seen that happen. The good news is that since they ended up having to replace the brace, we were able to keep the foot portion of her old one for her to use in the pool for therapy. This will really help as her right foot still has a tendency to roll under.

At any rate, we feel INCREDIBLY blessed to have such a wonderful group of friends supporting us. We are so grateful to the community for their love and to our family for all their help too. If you are interested, please check the blog: welovelizzy.blogspot.com for updates and pictures of Lizzy and I think they added some other bells and whistles (especially for far away people) too. Thank you all again for your interest in our wonderful Lizzy!

Love - Tom, Julie, and Liggy (one of her nicknames that she told me to put on) Smith

Monday, April 18, 2011

Big News on the Lizzy Front:

Lizzy got out of the hospital on Friday!!!!  She was scheduled to get out on the 22nd, but she had met all of her goals and they thought it would be best for her to spend some time at home.  So, they released her a week early.  She wouldn't let us tell anyone (or at least almost anyone) so she could surprise her family at home (more than you know-- more on that in a minute) and her church family.  It was a success. 

She is doing very well.  She is walking like a champ with the cane, although she has a tendency to go a little too fast.  Still, she has been navigating all of the bumps and changes in texture that come with life in the real world without any problems so far.  Her speech and cognition are coming along well, and her arm is gaining more strength and mobility everyday.  She can do most of her arm exercises with only minimal help from us.  She is still trying to build up her stamina.  She is plenty ready for bed by about 9:30 every night and even earlier if there is more action going on.  Still, she loves being at home. 

Unfortunately, this is not a full-time move yet.  Beginning Monday morning, Lizzy has therapy at the Rehabilitation Institute in Kansas City five days a week-- all day.  So, for us that means more time apart as Lizzy and a parent (usually Mom) will spend Monday morning through Friday afternoon in KC, but we will all be together on the weekends.  This will go on for about another 2 months or so.  Our goal is actually 7 weeks because that would allow her to begin 6th grade on time.  It will be a long road, but she will do awesome.  Please keep her in your prayers.  They have been working and she still needs more blessings to keep progressing as well as she has been.

As always, we thank you for your prayers and well wishes and thoughts and gifts.  We are more indebted to all of you than we can say.  Please remember you can follow the Lizzy blog atwww.welovelizzy.blogspot.com.  They are doing a wonderful job of maintaining the site. 

With lots of love, Julie, Tom, and Lizzy Smith

Sunday, April 10, 2011

The Lizzy Report by Lizzy (with commentary by her mom)

1. Lizzy likes to sing, "Will you, oh will you be my munchkin, munchkin . . . " I don't really know the tune, I think she made the tune and the words up the day before the stroke. She sang it all day the day before the stoke and she started singing it again only a day or two after. She sings it often when she is silly - which is a lot!

2. Lizzy can now walk on her own! She still needs her cane, but only needs to have some one near her for safety, but her safety person does not have to support her at all.

3. She still has to sleep in a dumb bed that has bars on the side and makes her think of a crib. She talked the nurse in letting her sleep with her bed elevated though, only because she promised to keep the bars up, so I guess there is something good about the bars.

4. She can move her arm much more. It is getting stronger daily. If her arm falls to her side she can lift it into her lap and she can, with effort move her arm up while bending at the elbow.

5. She can move her wrist slightly and has feeling in all her fingers and starting today, her thumb (nothing really moving yet)

6. She is talking much, MUCH, more - sometimes too much? Haha

Lizzy is doing well. She has set a goal this week to walk without anyone near her at all and to be able to hold a pencil for at least 10 seconds in her right hand. She held one today for one second - but we didn't even think she could do that, so we were very excited.

We have an estimated go home date of Friday, April 22nd. Hooray - home for Easter! Starting the Monday after that she will be in a rehab facility here in KC during the week, but will get to go home on weekends. We don't know how long she will be there, but it will be a number of weeks. Still, it will be wonderful to be out of the hospital, and great to be home even for a little bit.

Once again, we appreciate all of your prayers, love, and support! What a wonderful community we live in. We have fantastic friends, family, church family, co-workers and neighbors and we are grateful to you all. I have learned that there are many people out there following Lizzy's story that we don't even know. Please feel free to forward the blog address or this email (or any of the others) on to anyone you know who is interested in how she is doing.

We are excited and grateful for the auction on May 6th. Much thanks for all the items and services that have been donated. It sounds like it will be quite a night! Thank you all - have a great week. Julie, Tom, and Lizzy Smith

Sunday, April 3, 2011

Lizzy had a great week.  She is now walking with a four tip cane, and has started trying to climb stairs.  She really wants to be able to keep her room on the second floor when she gets home!  She also has some arm movement in her shoulder when moving it forward and in her elbow when bringing it toward her. Today I felt a little pressure when she tried to squeeze my fingers! This is a first for hand movement.  She is still struggling with her cognition.  Although she can read (we are grateful) it is nowhere near as fluid or comprehensive as before. It is hard to watch her struggle with all her very favorite things to do.  It seems strange for a girl who used to make up her own language to sometimes  have difficulty saying exactly what she wants in English. She is progressing though. Late last week she was shown some pictures in a picture book and was able to share an original sentence about what she saw happening in the book, she even put in a few very large and descriptive words - so it is in there somewhere!   We are so very grateful to you all for your concern, prayers, and kindness. It makes such a difference to her and to our family.

Two of my wonderful friends, Kristen Bates and Les Ackman, have also planned a dinner and auction for Lizzy to assist with her medical bills. They have asked me to share the information with you.  The auction and meal will be held on Friday, May 6th at 6:30pm in the Horace Mann Gym at NWMSU.  They are working on a number of creative items to auction, and I know the meal will be fabulous. For those of you who live at a distance they are setting up a website with pay pal so you can participate.  If you have items or services to donate please let me know and I will have them contact you. More information will follow as it becomes available. We are incredibly blessed with wonderful friends. Thank you Kristen and Les, and everyone else who is reading.

Can't wait until next week when I will have even more of Lizzy's progress to report! Thank you all - Julie and Tom and Lizzy Smith

Monday, March 28, 2011

Lizzy is doing great!  They finished running all the tests they needed to last week and determined that she did have the artery condition that they thought she did. (Fibromuscular Dysplasia) Her case is exceedingly rare - the neurologists have only been able to find 13 cases like hers in the research - from the entire world. Thus, they aren't sure whether they will try to correct the problem or not. For now, she is just on a baby aspirin a day.

 We have moved to the rehab floor and are working on therapy full time now.  She is able to stand while holding on to something for balance, she can move her leg some and as of the end of last week, can even walk a short distance with the support of a walker and a therapist.  She is smiling and being incredibly silly!  Her arm has more feeling in it (one of the main nerves has woken up) but it is not complete yet. Her arm did move on it's own briefly last week as a result of shock therapy, but she can't control any movement yet. The arm is one of the last things to respond, so this is not unexpected. 

Her feeding tube was removed at the end of the week and she can now eat regular food - she loves this, especially after a week of no food, and then a week of IV feedings. We are thrilled! 

Her speech is much improved and we can understand everything she says now. She doesn't use all the huge words she used to very often, but occasionally she throws one in.  She is very bored, especially on weekends when there is little or no therapy going on.

She appreciates the many gifts, cards, and visits from so many of you. They really lift her spirits. We are learning the hospital routine and expect to be here for a few more weeks. We are so grateful for  how far she has come already and look forward to seeing additional progress. The good thing about a stroke is that every day does seem to get better, so there is always good news.  She is anxious to come home and asked if she "couldn't get a pass to go home for a little while and then come back?"  Not sure about that, but she does miss you all. Again, we are so very grateful for the support of so many. We never knew how many friends we had. Thank you so much for your thoughts, prayers, and all you have done for Lizzy and for our family. Please keep the prayers coming as they are making a great difference. On to victory . . . life at home! Thank you -Tom and Julie and Lizzy too.

Wednesday, March 23, 2011

Lizzy has been moved to a new room on the Rehab floor - hooray. Because many of you have asked about visits, we thought it might be helpful for you to know her schedule. She know has a daily itinerary of various therapies and school.  She is generally busy from 8am to 3 or 4 pm during the week. A good time to visit is after 5 when she is rested and generally a bit happier after all her hard work. Saturdays I think end earlier, perhaps about nnon - although I am not totally sure yet. Sundays are free days for her.  If you want to visit and have a chance, please email Tom or I so we know you are coming and can let Lizzy know. She gets very excited about visitors - they make her day. It really gives her something to look forward to.  A shorter visit - about 45 minutes is probably best for most since it doesn't tire her too much. Thank you all for your support, thoughts and prayers. We are so grateful. Julie

Sunday, March 20, 2011

Tom and I have decided that it might be easiest to just send an occasional update to a few people for them to forward on, since the groups are probably already set up and so we don't have to try to collect emails. I hope you don't mind forwarding this, if that doesn't work for you, just let us know. Thank you.

Lizzy has improved so much this week. On Monday night, when she collapsed, she was completely paralyzed on her right side, had slurred speech, and was incoherent.  Today she can transfer from the bed to wheelchair with a great deal of help, speak in a complete sentences, understands some jokes, and was even doing a few times tables.  She has smiled a lot today and sang a funny song that she was singing last week. She has no memory of the event at all, but she does know where she is, who we are, and pretty much everything up to last Monday.  The doctors have almost determined that the cause of the stroke was due to a genetic condition (don't know which side yet, I guess we will test for that later) that causes her arteries to fail. The carotid artery going into her brain on her left side shows this bubbly condition called Fibramuscular dyspasia (really don't think I spelled that right) that caused the stroke. She also has blood with a high clotting factor that contributed to the problem.  She will have another MRI tomorrow and another CT scan and another ultrasound to check conditions and make sure nothing has worsened. The will also be looking at the other arteries in her body to see if the condition is present elsewhere. In addition, her brain scans are being looked at by other doctors around the country to make sure they are in agreement on this condition. We are unsure of treatment for the condition at this time, but hope to have answers next week after her tests come back and we meet with the neurology team again.  The stroke was severe, it affected about 30% of the middle section of her brain. Other parts of her brain are "covering" for the parts that were lost, however, and the chance that this will continue and that she will be able to resume her life is good. Physical therapy expects her to be able to walk again, but the use of her right arm is still somewhat in question. Children generally respond well to strokes and make great strides. Cognitively she should improve as well, but of course we don't know how fast. She will move up to the physical therapy floor as soon as she is off a feeding tube, which we expect will be this week. We expect to be here about a month or so for therapy, but it could be longer or shorter than that depending on her progress.

We really want to thank you all so very, very much for all that has been done for Lizzy and our family. We have felt so loved and supported by everyone. The many, many cards, emails, meals, gas cards, gifts, help with the kids, and especially the prayers have helped so much. She has cards, posters, flowers, pictures and gifts covering her room. We re-read her many cards on a daily basis to give her strength (today she read them by herself!) She has literally hundreds of people around the globe praying for her, many that we don't even know.  Thank you so much.

The e-card messages from the hospital website have really helped her, she has got a few new ones every day and she loves this. If you would like to, you can send one by going to the hospital's website at  http://www.childrensmercy.org/patientcards/ You just pick a card style and type a message and they print it here and deliver it to her.

We will try to send an update once a week or so. Thank you all again for everything and for the many offers of help. When we get back in town, we might take you all up on it! Keep those prayers a'coming - Tom, Julie, and Lizzy Smith