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