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.
Friday, November 25, 2011
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.
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
Vacation
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.
Sincerely,
Tom and Julie and Lizzy Smith
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.
Sincerely,
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
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!!!
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!
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
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
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