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