Wednesday, March 29, 2017

January through March update

I've been wanting to write another blog post for a while and finally got around to it!  

Brad and I are doing well. We are working on strengthening our marriage and just loving our children the best we can. We have a lot of support from friends, church, school and our medical community.

I wrote and recorded this song and it was posted recently on YouTube. I do feel very grateful for the many friends/family/associates in my life who have influenced me for good. I'm also grateful for all the amazing people in the world who help others and for those who open their hearts to let others help them.

Brad's parents came to visit us last month and we had a great time!!


Brad has been getting into photography. He's experimenting with taking close up pictures. I like this one! Laya is not afraid to eat these Cactus Fruits whenever she finds them.

Laya seems very happy, hardworking and sweet lately. She helped me out tremendously during spring break. She also had to attend intersession so that gave her a greater desire to do well in school and her other activities. I saw her playing so cutely many times this last week with Evan and a few times with Eli. It was so nice for them to have time to connect!
The workers at Old Tucson let Laya go on a quick 5 minute horse ride!

She is always up for being silly with her friends! They were having fun experimenting with different hat and crazy hair styles! ha ha. 

Eli is overall very healthy and happy! We had quite a surprise when we were at Physical therapy this month. I had thought that Eli's stander had been denied by our insurance. Well, it was, we got a letter! But while I was at PT our therapist told us that she saw the stander at Numotion (the place where we get equipment delivered). She said it had his name on it. So we called Numotion and she asked them to deliver it to the Children's Clinic and we got it that day while in therapy and brought it home in our van! So I'm not sure what exactly happened, but I guess the insurance changed their mind and let us have one. We are very grateful. We do have a small snag though, the alignment is all wrong, so a man is coming out to the house to take a look at it for us. It's not a simple adjustment, so they think it might have been assembled incorrectly. Regardless, we should be able to start using it next week. So now that he has one at school and at home, he'll be able to start standing correctly and with support for 30 minutes, twice per day. This should be really helpful for his bones, digestion, muscle strength, alignment and comfort.

Eli's new stander! We haven't been able to use it yet, but soon we should be able to! It's a sit to stand bantam stander. So we can put him in sitting, then push the pedal to stand him up. Once he gets tired we can sit him back down for a little while without having to get him out!

Eli's specialists at school made this contraption! They just hook it to his chair so he can push his little button to greet his classmates. I think it says "Hi, How are you?" or something like that.  

Evan surprises us everyday with how much he can do. He is so energetic and loving. I am noticing his ankles are really beginning to collapse though. So instead of just shoe inserts, we are moving to ankle braces. Not ones that go up to his knees yet, but just cover his ankles. We still want him to use his own muscles and mobility as much as he can. He should get those within a few weeks.
The reason why I brought up ankle braces with the PT was an experience I had with Evan a few weeks ago. Evan was walking around on 3/4/17 and all of a sudden I noticed as he was pushing his shopping cart around that he could barely walk. He was bending his knees and his left ankle was turning. (Collapsing) I thought that he must have something on the bottom of his foot that is preventing him from putting weight on it, but that wasn't it. Then I thought maybe he had a sprain. His ankle looked really bad, but not swollen or anything. He continued to fall and instead of walk, just crawl. It was really weird to suddenly go from walking fine, to nothing at all. I happened again a few times over the next few days. We still aren't sure what it was, but we think it was just a weak few days for him. Hopefully the braces help! I got out Eli's old walker and he wouldn't use it much. But I'm sure when the time comes that he really needs it, he will use one.
 Evan loves all his friends at school!

We are having a Cure GM1 Spring Clean yard sale this April! It will be on April 14 and 15 from 800am-1:00pm both days. All proceeds will benefit the Foundation!

We've started a Friends of Cure GM1 Email list, in which I'll be sending out an email update each month. 

Here's a note from the Cure GM1 Board of Directors:
"We are creating a new email list for those who want to stay connected with the foundation and learn about small and large ways they can help. Our goal is to have at least 75 people sign up for this “Friends of Cure GM1” email list by the end of April. We will send out one email per month and hope that people will feel comfortable interacting with us and sharing the information we provide.
To join this email list, please send your email address to Marilee Burdett Leishman or Sweet Iris in a message on Facebook OR email with the message “Please add me to the ‘Friends of Cure GM1’ email list!”
Please consider joining this email list. There are so many wonderful people out there. Together we can make a difference and truly bring hope to the GM1 community and vanquish this truly awful disease."