Dog Days of Summer

Once again, I'll have to start off with my heartfelt apologies for not updating this blog more regularly. I know that many of you check in daily, and I'm sorry that I haven't kept up for you. In my defense, we have been crazy busy around here. The girls have been here with us since school let out, and we have a house full of people. I've been trying to run the madhouse with some illusion of order, but that's no easy task. I also have a ton of pictures to upload, and I promise I will try and get to them soon. I know my definition of soon can be sketchy, but I will do my best!

All in all, things have been going well. Holden is still up and down, and he still has bad days that break my heart. But he's turning into a happy little boy, and I love that for him. He had a cardiology checkup at the end of May, and we'll go back this month for a more in-depth workup. We don't have much to report from the appointments. His BNP is still going up, but that's to be expected. Our biggest concern at the moment is his weight. Instead of gaining, or at least maintaining, he's losing weight. He's also gotten a little bit taller, so he looks like skin and bones. Unfortunately, there isn't much we can do about that. His vomiting is pretty cyclical, so it will get better for a little while and then get worse again. Right now, he's throwing up at least a few times each night, but we're hoping and praying that gets better again very soon. He needs to keep down every calorie he can.

We've managed to do a few fun summer things, in between all of the nursing and caretaking. I hate that we can't go and do more, but we still have to limit Holden's exposure to crowds. I'm just happy to have all three of my kids here this summer, and watching them bond again is enough to bring joy to my heart. Lord knows we all needed this kind of time together!

We are so thankful for your continued thoughts and prayers. They mean the world to us, and we truly appreciate all of you. If you happen to be saying a prayer for Holden, please include a few words for another little boy named Keegan. He had his heart transplant when he was a newborn, and he's three and a half now. The past six months, he has been in and out of the hospital with various complications. His family has been through so much, and I know they could use your prayers and support as well.

These past couple of months have almost felt stolen. I don't know how to explain it, but I know that we're not going to be able to stay this way, and I know we still have some major hurdles to jump. It makes me feel like we should squeeze everything in while we can. When I think about other kids like Keegan, it makes me even more determined to enjoy every single second of these stolen days of summer.

We are still waiting for the other shoe to drop. Still waiting for the call, still stuck in a holding pattern. But today, I am grateful. To be at home. To be celebrating the long hot days with family surrounding us. To be given the chance to watch my kids rediscover each other. I am grateful for the chance to let Holden try and grab his own little piece of normal. After all, doesn't he deserve to be a normal little boy for even a short time? I think so. I think every child deserves that much.