I honestly don’t know what else to say except that prayer works. We’ve seen undeniable evidence that the prayers of so many are making a difference in Wally’s journey. The past few days have been a whirlwind of hope, struggle, and small victories. Through it all, one thing has remained clear—Wally’s strength and the power of prayer are helping him fight, and we are beyond grateful for it.
The Good News:
Today, there has been some much-needed progress. Wally’s secretion burden, which has been a constant challenge, is lower. It’s still high, but the fact that we’re moving in the right direction gives us hope. It’s a sign that his body is beginning to respond to the treatments, and we’re starting to see the light at the end of the tunnel. He was also more awake today, which meant we were able to place him in the stander, a big step in his recovery. We even got to play peekaboo barn, and for the first time in a long while, Wally smiled. It’s hard to express how much that smile meant to us.
I also did the trach change today, which, in itself, is a big accomplishment. While it may seem like a simple procedure to some, it’s an emotional rollercoaster for me every time. But today, Wally made it through without complications, and I can’t help but feel a sense of relief and gratitude. Small steps like this remind me that progress is possible, no matter how hard it gets.
The Hard Stuff:
Of course, there’s still so much to face. Watching Wally now, I can’t help but feel the weight of how much he’s lost. Since we first arrived here, he’s lost many of his motor abilities. When we came in, Wally could reach for toys, sit up, and lift his arms. Now, we’re going to have to work incredibly hard to help him regain basic functions, starting with head and neck control. The road ahead is long, and there’s no denying that it will take a lot of effort. But I believe we’ll get there. I have to believe that we’ll get through this, and seeing his small progress today fuels that hope.
DME Drama (But There’s Hope!):
As we look ahead to bringing Wally home, there’s still a big hurdle to overcome: we need a home ventilator. The one we need isn’t available at Primary Children’s, so we’re waiting for our own to arrive before we can do the final trial in the end room. This trial is critical because it will determine if we’re able to manage all of Wally’s care independently, a step we need to take before being discharged.
The first DME company we worked with told us they had the machine but needed to order it, and it would take two weeks to arrive. On top of that, they didn’t have an RT (respiratory therapist) rep available for the required vent class, which added even more delay. But then, we found another DME company with the ventilator in stock! The only thing we need now is insurance approval, and once we have that, we can pick it up. This could mean that we’ll be able to leave the hospital sooner than we initially expected, and that’s a huge relief for our family.
Please Pray For:
As we continue this journey, we humbly ask for your prayers for the following:
- For Wally’s secretion burden to continue to decrease, so we can begin reducing some of the treatments.
- For Wally’s ability to cough up secretions on his own, which will be a huge milestone in his recovery.
- For stable and appropriate temperatures, as fluctuations have been a constant challenge.
- For more alert and awake periods, so that Wally can begin to engage more with us and his surroundings.
- For insurance to approve the ventilator as soon as possible, so we can bring Wally home.
We are so grateful for the prayers and support we’ve received. We can feel the power of them lifting us up, and they are working. Every bit of love, encouragement, and faith that surrounds us has helped us get through the toughest moments, and we know it will continue to guide us as we move forward.
Though there are still many hurdles to overcome, today has given us a glimpse of what’s possible. The progress, no matter how small, is a reminder that Wally’s fight is not over. We are holding onto hope, and we will continue to fight alongside him every step of the way. Thank you for being with us on this journey. We couldn’t do it without you. 💙🙏