Oh, my goodness I actually have a few minutes to update.
It has been a busy last few weeks. We have also had Corbyn and Lexy here this week. I hope I dont forget anything!!
We went to a MDA " Meet and Greet" a week ago Thursday there we met some new people and saw Cindy a favorite lady of ours since we met her last year at the telethon. It was interesting. I talked to Cindy's husband about some power chair issues that have not been resolved in Lizzy chair in almost 3 years. He put some fire under my hiney to get something done with the speeds on Lizzy's power chair just from listening to him. I went home and emailed a few people from Permobil since our vendor here was not able to get the problem taken care of. It worked!! I got a few emails from the company the next day and one from Richard from Chicago. He was going to fix Lizzy's chair the very next day when he got back but we told him we could wait till Thursday. He was out of the country till last Sunday. He is a great guy!! I wish there were more "Richards" out there. He is so full of info and guidance. We need him here!!
We went to MDA appt this past Tuesday in Peoria. They were very excited Lizzy is doing great. Angie the nurse(Lizzy's favorite) said Lizzy was her birthday present. Dave the OT said Lizzy's left arm contracture is so much better. I picked Dave's and the MDA PTs brains on ideas on how to help Lizzy more at home. I do things that I know but I think with her age now I need to know more. They showed me. Dave is going to make a hand splint for Lizzy's hands to sleep in so she gets more range.
We have no Local OT and PT right now. We will be seeing a local PT here soon as she has an opening . We have to pay out of pocket for PT here that since she does not take Lizzy's insurance. As, you know our old PT stop seeing Lizzy before she quit and the director never replaced the OT that quit last summer. So, our hospital there had no Peds OT or PT. Still no gel pads in from National Seating for the arms of Lizzy's chair. We do not another appt for 9 months instead of 6.
Thursday, life as Lizzy knew just got better better. We met with Richard from Permobil at Lizzy's speech appt at the hospital. He took five minutes to fix an issue that has been going on over 2 1/2 years. He speeded up her power chair so, we can actually take walks and she can run and keep up with her friends. Only problem isshe is so fast now I can not even get a picture of her because every time I try she takes off on me!! We can turn it down but to see her with so much independance it hard to do that to her. He also got a hold of National Seating to order a switch for Lizzy's chair so she can turn it off , up , down , faster or slower herself. Cool.
Friday we went to a MAW get together at The Peoria Zoo. Lizzy and Caitlyn loved it.
We had a "Stalker Peacock" that was running wild at the zoo. Every where we went it was right there. Caitlyn got really scared and almost climbed up Christen to get away from it. It was harmless but it was weird that every where we went it as right there. Lizzy was so fast she would stop for a second and take off!! I got very few pictures of her! She was the only kid there with a power chair!! All the kids thought Lizzy was "too cool"! Some of the adults thought she was "too cool" also. It was too funny. Its like they never saw a child her age in a power chair that can work it so well. She was recognized by a few from her MDA telethon segments. Lizzy is recognized in Peoria( a large city) but not in her own home town. I find that odd.
The girls had a great time. Caitlyn spent the night. Christen took her home early the next morning.
Saturday, evening I get a call from Dawn and Caitlyn Grace was running 104 fever while they were at a wedding Jeff was in!! She asks me if Caitlyn had had any issues and I said no not at all. She had a great time ate well . She played and ran like normal. Well, Dawn was on her way to the ER because Caitlyn was shaking from her fever. After, Xrays come to find out she has pneumonia!!! They gave her a antibiotic shot, an oral antibiotic and sent her home after her fever went down some. My gosh my poor Caity. I am just stunned at her being sick.. She was fine.... My gosh. At the wedding she told her Mom she was sleepy , she could feel her lungs filling up with liquid and she could not breathe. A six year old..... Go figure... She is better today and fever an hour ago was 99.
Lizzy played outside today with Papa and her Dad for a bout an hour twice.. Blaze was amazed Lizzy could keep up with him in her chair. Lexy was here today and I played with her most of the day besides cared for Lizzy.
Well, the holiday weekend has one more day left.
Please remember tomorrow those who were dear to your heart that are only here in spirit and in your heart, The many men and women thought fought wars for your freedom and the babies and children that earned their wings at a young age.
Please say some prayers for Caitlyn, Drew and all the kids that are sick.
We believe in miracles because we live with one.
www.our-sma-angels.com/elizabeth
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