It has been a very hot and dry month. Drought has hit our area and the crops are doing badly. Our tap water tastes so bad we have been buying gallons of drinking water. Our tap water tastes like "ewww mold". Lizzy has always gotten bottled water. Say, some prayers for us to get some rain SOON. If I knew how to do a rain dance I would. (Picture that one! LOL) We need rain so badly. My tomatoes are doing okay just not as well as they should be. They are on my patio. We also have a family garden at Dawn and Jeff's too but it has not done so well either. You need rain to make things grow!!
Lizzy has not been outside too much this past month because of the very hot weather. Since last week I have been doing school work with to keep her from getting bored. Its almost August and school will be starting soon. She is loving she is so smart and remembers what she has learned and more.
Tonight.. I caught her on a website with a dancing Hilary Clinton in PJS!! She was making Hilary dance!! She has no idea who Hilary is and was just having fun!! I laughed to hard!! One time I caught her playing poker online a few years back.
I am glad Lizzy was able to make some memories by going to the FSMA conference this year and to stay in Minnesota with our great friends Drew and his family. At least she had those special things this summer to remember and seeing so much family( that we do not see too often) because of my stepfather's passing.
We had a family birthday party at Jeff and Dawn's on Saturday for Mom , Caitlyn and I.
It was nice party but my mom was not feeling well. I am sure it was due to the heat. I think she is also missing my sister Mindy spending so much time with her. Mom is wanting to move to a nursing home in Kentucky to be close to Mindy. Mindy was here taking care of her Dad for 2 months before he passed and her focus was her Dad and Mom spending time together. So, us seeing her a few times a week is a big change from every day. I think Mom is depressed lately because of losing her husband and missing the time she had with him. She was doing so well when Mindy was home. God's plan for me was is to take care for Lizzy and help as many families that ask for my help. I call her and make sure she gets what she needs but it seems it is not enough. I wish I could do more. So, I have I do not had a lot of time to spend with mom while its been so hot. Hopefully, its cools off soon so Lizzy and I can take the old van ( My moms) out to see her more often. It has no air conditioning so that is also a reason Lizzy and I have not gone out there in the van. We all tried to make mom have a good day on Saturday which was her birthday but... She wanted to go back to the nursing home early. Its okay .Christen took her shopping on Monday and mom was in Wal-mart for 3 hours having a great time. She takes off in that motorized wheel chair and has a great time.
Good news is that we are getting the shocks fixed on the van before we go to Madison next month! Yeah!!
We are WAITING to hear about Lizzy's new power chair. She will be getting( if its is approved) a M300 Permobil power chair. She will be so much more independent and be able to control her chair up,down and it will lay back!! Her Koala power chair was great from age 3 until this past year. Her head bobbles back and forth because its extended so far because she is 4ft 3 inches. When she hits a bump she slows way down and still her head bobbles!! She needs her new one sooooo badly!!Going down the ramp its really bad. I have to hold her head and pray she does not stop too quick and flip me like she did a few years ago on one of our visits to CA to see DR.Wang. I miss those days in CA but I don't miss Lizzy flipping me!! I miss the great weather and the people we would see.
Say, a few prayers for a little guy named Ben that just got trached. He is one of Lizzy's friends.
IMPORTANT diet info for SMA - http://www.aadietinfo.com/
"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth
Here is a pic of our Lizzy this week! She will be 8 years old in Sept!!
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