Elizabeth got lots of great gifts. One of her breast milk donors was there with her financee and her son.
Nice party with many guests. This next week I will write all thank yous out. So, many people remembered Lizzy on her special day. They made her feel very special.
This week has been kind of crazy. Besides freezing my hiney off this is the second week Christen has not been around much because she is watching Corbyn and picks Caitlyn up after school and I am trying to homeschool Lizzy and entertain her. We do it though . Lizzy and I get done want we need to get done.
Friday I woke up to hammering and all kinds of noises down stairs. Then, I heard cussing.... lots of it. Brandon had some extra tile and was going to tile the bathroom floor. Okay, This is a very small 1/2 bath. It maybe would take a day at the most with pulling the sink and the toliet out. Well..... The guy we bought the house from back in the 1990 we have found in our living here and fixing things he was notorious in tweaking short cuts and then hiding the mess ups he caused. Well, the bathroom was no different. Thankfully, no one has fell through sitting on the porcelain throne. The floor joist had been cut through!! All these years living here and we had no clue. We have even redone the bathroom but not the floor. I had painted and wall papered. I had bought a pedistal sink about 4 years ago and they decided they were also going to put that in also while they were pulling up the old floor. Well, the pipes were also messed up..... oh my gosh . So, now my bathroom is totally torn up. They had to replace all the pipes and the walls etc while they were at it . The old owner had used one of the old french doors for the wall that is over the brick and oh my..... . Lizzy and I have been stuck upstairs for 3 days now while Paul and Brandon have been redoing the bathroom. Hopefully, we can have it all together by Tuesday.
I received a very special package yesterday from a person from Passion River Films that has read my blog. They sent me a very inspiring video called "39 pounds of Love". I have heard about this documentry about a man with Type 2 SMA and his struggles in his life. I really wanted to see it. He also wanted to find his doctor that diagnosed him and said he would not live to be six years old . He lived to be 34 years and actually he lived until a few weeks ago. His mother and I have a lot of the same way of thinking. How can a doctor give you age you will die because you have a uncureable disease? They are not GOD they are only humans. Ami wanted his doctor and many others like him to know you can not play God and put an expiration date on a human beings life. Ami doctor had said he would not live past 6 years old.. Lizzy was diagnosed just about the same way telling my daughter and Brandon Lizzy would lucky to be here a year let alone 2. She is SIX years old now. That is 3 times her life expectancy. Ami was from Israel and came to the states to find that doctor that diagnosed him. I cried a lot through the film....... If you have not watched it YOU NEED TO!!
Lizzy is doing well just bored this week and very bossy... got to love her spunk.
I have to say something that is bugging me. We keep calling the doc's office about getting Lizzy's flu shot well.... they keep telling us that the Medicaid's ped shots are not in yet. I asked today if I could pay out of pocket for a peds flu shot for Lizzy because we fly out Nov.9 and they said sure and its scheduled for WED this week. Is this like discriminatory or what? What is the difference? Are the shots different for medicaid patients? I am confused besides this really ticked off about this one. Grrrrrrr
Many prayers for all the sick kids out there.
Thank you all the great people out there that help fought to save their kids and grand kids. Its from inner strength and deep love.
Thank you to the many that have been a part of our lives.
We believe in miracles....because we live with one.
www.our-sma-angels.com/elizabeth
http://photographybyrhiannon.blogspot.com/2009_10_01_archive.html
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