Saturday, March 17, 2012

I'm back

As you see I'm back.It's not other people updateing it.Get reday to see my style of writeing.
For my recovery I live in the situation I'm given sometime's it's good sometime's its bad but I would say I'm doing good a job as expected from a person in my condiotion

Please post your comment

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