Wow! What a whirlwind the last couple of months have been!

We had nonstop travel and visitors during March, which was wonderful! First, Matt's college friends came to visit. I don't think our house was ever filled with so much nonstop laughter! After a fun and laughter-filled weekend with them, we were off to Niagara Falls! This trip was so memorable! If you didn't know, Matt and I got married in Niagara Falls. It has been at the top of his list of places to visit, and with travel options becoming extremely limited, I was determined to make this trip happen. Many thanks to Matt's parents; we did it! Matt's parents came with us to help with the drive and reduce my workload. The first day we got there was a blizzard! The kids were so excited to see snow and wanted to go outside. Matt and I were hesitant but bundled up and went out with them. We made it across the street from our hotel, and they immediately wanted to go back inside, with James even saying, "Now I know why we live in the South!" Haha! Yep! That's right!

Day 2 was beautiful! It was still cold, but the skies were sunny and clear. We went to Journey Behind the Falls, and Matt loved it! The kids and I get a bit claustrophobic, so being in a cave underneath a giant waterfall didn't exactly give us all the good feels, but seeing Matt's enjoyment made it all worth it!

On day 3, we went to the US side to meet with Matt's extended family for lunch and then returned to where we got married. We attempted to replicate a few of our wedding photos with all the kids. This was, without a doubt, our favorite day. We went to every viewpoint of the falls, even the scary ones!

Once we got back, my sister visited for a week, and then Matt's mom, aunt, and three cousins came to visit, as did my aunt. We had a full house, and it was so great! Once our home became quiet again, we enjoyed quality family time during the kids' spring break. The weather has been beautiful lately, so we have been taking advantage before it gets too hot. We enjoyed sitting outside in the backyard, watching the kids play and dogs run around. We took James to a concert and spent a day at the zoo. We have truly been having some of the best days lately! …that is until today. Today marks one year since Matt was diagnosed with ALS. It has been an emotional day with the heavy reminder of all the difficult changes this past year has brought and what still lies ahead. We will rise to better days again, but today, we allow ourselves to grieve the life we once had, the people we once were, and the apprehensive future ahead. We have so much to look forward to and are thankful for each day we have.

Matt has been continuing to lose strength. He has completely lost function in both of his hands and arms now and is unable to drive his wheelchair anymore. The kids and I drive him around. He is also losing his voice. He can still speak, but it is very soft and often mumbled. We need to use the home vent 100% at night and begin to supplement during the day. Since his surgery, I still have not been able to get him upstairs by myself to shower him or sleep in our bed (also because he cannot rest flat on his back and needs the adjustable bed), so we are now downstairs full-time. I have been trying my best to figure out the best showering scenario. I attempted to shower him while sitting on the toilet, bed baths, and I got a portable shower tray to put in the kitchen. However, because our faucet is not standard, I am having the most difficulty finding a shower extension compatible with our faucets, so I have been filling the sink and using a cup. It works, but he gets so cold and begins to shake and stiffen, which causes him to slide out of the chair, making it another dangerous situation. I must always work very fast and constantly apologize.

We have another big month in May. We have a couple of significant appointments, but most importantly, it is Matt's birthday! Matt and I have been working with our ALS Research Clinic to organize a second annual fundraising event to raise funds and awareness for ALS and other neuromuscular disorders. The Flex Fest event will be on Matt's birthday, May 11th! Matt's family and some of mine will be coming to celebrate so that we will have a full house again, and we cannot wait! It's going to be such a fantastic event and birthday! AND there will be a live stream for those to enjoy it from home! I will include the links below for everyone!

I am also going to include the link for our fundraising page. Recently, we have been having so many issues with our insurance refusing to cover Matt's necessary medical equipment, such as his home vent, which he would not survive throughout the night without it. We have also been trying to get the device that will allow him to drive his wheelchair by using his eyes, and regain some control and independence again. We were able to get the device from a loaner program but quickly found out the wiring harness and new joystick controller are not covered by insurance and grants we’ve applied for will only cover a portion of the costs. We have  filed appeal after appeal and received the notification this week that we had exhausted all appeal options. The decision remains to deny coverage, which means we will be responsible for paying out of pocket. We are also looking into getting a home nurse to help a couple of days a week with showers and to stay with Matt during times I may need to leave the house. This will also be an out-of-pocket cost. We appreciate everyone's support and generosity this past year and only post this as an option for those who wish to assist. 

Flex Fest info:

Facebook https://fb.me/e/1nLakUxSz

Tickets https://www.givecampus.com/schools/AugustaUniversity/events/neuromuscular-flex-fest

Donations https://www.augusta.edu/giving/gift.php?fund=210780

Live Stream https://www.twitch.tv/iwontstandforthis

Matt vs ALS Fund:

https://www.freefunder.com/campaign/matt-graeser-vs-als-fund