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Tuesday, September 26, 2017

Cure GM1 Run Walk, Power of Moms Article and Update on Eli

I thought it about time I updated our blog!!!

As I believe I mentioned before, I am serving on the board of directors for the Cure GM1 Foundation as the secretary. We continue to have regular meetings and are working hard to further the progress towards a cure for GM1 Gangliosidosis. To join our "Friends of Cure GM1" email list, send an email to Marilee@curegm1.org and I'll add you. :) 

This September we've had a Run and Walk for those who Can't...Challenge. (A Cure GM1 Run/Walk Challenge) Our Teams have been fantastic and I've been especially touched by the support we've received for #CureGM1TeamEliEvan!
We've raised more than $30,000 this month from this event!! More than I expected! 




Also, I was published on Power of Moms on April 6. Here is the link to my article!
https://powerofmoms.com/rising-anticipatory-grief/ I wrote this article back in probably January, and then it wasn't published until April. I still believe all that I wrote, but I want to make it clear, that I don't feel like I've risen above anticipatory grief yet. I am working on rising above it. As in, it is a continuous process of rise-ing. I'm not perfect and I grieve often. I believe it is healthy to grieve to a certain extent, but it is also healthy to move forward and do our best to cope and be strong not only for ourselves but for our family. I'm still working on it!




I'm not going to lie, things have been really hard for our family these past 6 months. But there have been a lot of fun and good moments throughout. We had some great quality time with our families this past July in Utah and even though Eli's had more problems, he had a few months of stability with not a lot of symptoms. 

Update on Eli 
Back in April, Eli began to have what I've coined as "Choking Episodes". These choking episodes are caused by thick mucus, saliva, or drool and/or his feeding tubes coming back up (re-flux). In order to understand this, you have to remember that Eli doesn't get any liquid or food by mouth. He is very prone to choking and he has no idea anymore what to do with food/liquid if it is placed in his mouth. His swallowing muscles are very weak. 

April - May/July he continued to choke, often on a daily basis. He is on medication for various things such as drying up excess drool, which was pooling up in his mouth, causing him to choke. But if that medication is too high, it dries him up too much, causing a thickening of his mucus etc, which he can also choke on. He is on a medication for aiding in the speed of his digestion, (which is lackluster at best) because if food is sitting in there too long, it can come up easier.  

We adjusted his feeding schedule, so they were further apart, to give him more time to digest. We also adjusted the amount given at each feeding (lower volume at each feeding) and things got better. During July, August and part of September, he really didn't have anymore problems with choking, until this last week. 

Here is the story I wrote in his journal about the incident that happened two days ago. 


"It was Sunday evening around 6:00. Brad had gone home teaching and I was busy getting the boys ready for bed. We had recently moved bedtime up to 6:30, to give Eli and Evan a chance to fall asleep a little sooner.  Eli, especially, has been so groggy and tired in the mornings.
As I came into the living room, with diapers, wipes and pj’s in hand, I noticed Eli was moving a lot in his wheelchair. Jerking his head from side to side. He was clearly agitated. I patted his back a few times and he seemed to be breathing ok, so I began to dress Evan. Eli’s movement and thrashing about didn’t stop, however, it continued to get worse. So I asked Laya to put Evan’s helmet on and watch him while I helped Eli. My strong willed daughter, quickly complied, registering that I really needed her help. Eli began to gasp for air, progressively struggling to breathe. He spit up a few times, but it only made the situation worse. He began to really struggle. I told Laya, “Call Dad, and tell him to come home right away because Eli is choking.” She ran to the phone, gave him a quick call and then herded Evan and the dogs to the backyard.
With feelings of stress mounting in my body, I ran into the pantry to pull out the suction machine. I hadn’t used it for months. I could have sworn I had a tiny tube that I could use to suction out his throat, but I couldn’t find it anywhere! As a last resort, I used a slightly bigger tube that I had. It gagged him, made him throw up, and didn’t really help at all! He continued to choke.
At this point, his face was white, with the bridge of his nose bright red. I thought, “He could die right now, no, no, no”. In a panic, I pulled him out of his chair, leaned him over my lap on the kitchen floor and pounded away at his back. With tears welling up in my eyes, I desperately told Eli to “breathe, just breathe!” I continued, “Breathe Eli, breathe!” Somehow, some way, whatever was choking him (formula that was coming up, thick mucus or saliva or a combination of all three) began to subside. All of the emotion, frustration and pain that he’d been carrying, seemed to come out at that moment. He cried...Eli cried. And he never cries. He doesn’t cry anymore at least, just whines, but in this moment, he cried. He moaned and cried as I held him and cried along with him. I looked toward the back screen door and saw Laya standing there, staring at us from the backyard. She had watched the whole thing. She smiled an awkward, I don’t know how to deal with this, kind of smile. And I plopped down at the kitchen table with Eli in my arms, exhausted.
Brad walked in at this moment and I quickly relayed what had happened, letting all my fears and emotions out along with my explanation. He was sad, stony faced and so sorry that he wasn’t there for us. I felt terrible because I hadn’t been fully prepared for this situation. I didn’t have the right tube to suction out his throat and didn’t have the machine handy. I'd become too relaxed since he hadn’t had problems like this for a while.
Even though the worst was over, it still took more time for him to clear his airway. He continued to swallow audibly, cough, and wiggle in my arms for another 30 minutes. Then finally...I felt him relax….completely drained. I waited until I was sure he was ok and then gently laid him in bed. I turned the baby monitor up loudly in my room, got in the bath and went to bed early. I lay contemplating what could have happened, praying and crying as I fell asleep."

Since this event two days ago, Eli has had 2 more choking episodes. Not as bad as this one, but enough to keep us on our toes. I've already adjusted his feeding schedule and received the proper supplies to have on hand. Not fun!





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!!

Fun at OLD TUCSON STUDIOS





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 marilee@curegm1.org 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."