Something new to worry about

Our planned surgery is next Tuesday. Thought it would never get here. As I can’t say it enough, again, thank you to everyone who has helped us big and small. It’s been a wonderful month overall. 

We’ve been able to spend so much quality time together as a family and even when Reese has had bad days, we’ve managed through and been grateful for all our good memories. I know you can tell the difference from her pictures. Aside from that scar, you’d never know how sick she really is… unhealthy brain tissue, possible brain damage, unbalanced diet, adrenal deficient, prone to mood swings, developmentally delayed and now a rare blood disorder. (More info further down). 

Yes, you could say coming way down on the steroid dose has made more than a little change in her visible appearance. What we didn’t realize or expect is that it also seems to have opened up her development as well. So many milestones are getting closer. Some are even zooming by. It’s been a great month. Who would have thought she could bite her food, tackle stairs, stack objects, get back her signing and laughing all in six weeks!

So Tuesday is our next chapter and we are heading toward it as optimistically as we can. There are no guarantees and there is no probability we can count on to ensure she will be herself or better when she wakes up this time. But you can bet no matter what therapy she needs or what new challenges we face, we aren’t giving up. Not now. We know she is capable of so much. 

And we will keep all this positive energy despite our new worry. We know very little, and in some ways it’s good to have something else to think about for a change, but we are glad we’ve discovered she does in fact, have a rare bleeding disorder that was to blame (most likely) for her two bleeding emergencies after the first surgery. I’m sure our surgeon is thrilled to hear this news. Not really. This little warrior is already a delicate case, so we will learn in the next 48 hours what the doctors plan to do to counter her condition and make her as stable and safe as possible during and after surgery. 

More to come in the next several days I’m sure.