"Running On One Engine"

"Here's an analogy; think of an airplane, with four engines. You both (James & I) have four engines running. Georgea only has one." THIS is the analogy that Georgea's Hematologist used to help put Georgea's blood disorder in layman's terms for us. Seriously??!! Oh my. Needless to say, I didn't necessarily wrap my arms around that one. I do think it is somewhat of an accurate picture, however Georgea is doing fine, actually better than fine. She's doing really well and thriving with her one engine, so I just need to keep it all in perspective. Georgea has Hemoglobin H disease, aka: Alpha Thalassemia Intermedia. This is a more serious condition than we originally thought Georgea had. James and I believed (due to feedback from 4 different Doctors) that Georgea had Alpha Thalassemia MINOR. When someone has AT Minor, the individual is simply a "carrier" of the disease, but does not suffer any symptoms. We knew Georgea had a blood condition, one we believed to be ATM since the time of her referral. Unfortunately the information related to Georgea's hemoglobin was not quite accurate on the original blood work we received from China.

So, enough about what Georgea doesn't have, I've moved on from that. What does ATI or Hemoglobin H mean to Georgea? This means that Georgea may need transfusions during her lifetime. She may need one, many, or none. How about that? Georgea's hemoglobin is unstable. It can break down, for multiple reasons that I will pass on delving into. That said, we need to keep a close eye on our baby girl. We need to look for signs that her hemoglobin may be in trouble which means she needs a transfusion to get her back on track. Signs like, lethargy, jaundice, general lack of energy, etc.

Here's where the trouble comes in for me. I am a worrier. I try so hard not to be, but it is something I have to fight hard against, especially since I became a Mom. So, with regard to Georgea's ATI condition I need to always be "looking" but at the same time try not to worry. How do I do that? That's really a toughie. So, I'm giving this one up. I'm giving it up to the God who loves me, who cares for me more than any living being and who wraps His arms around my baby girl every day. I'm trusting, I'm letting go, and I'm enjoying this wonderful life that I get to live with my girl and my husband. And you know what? It feels pretty good. I do have moments of worry that creep up on me since we got this news. Georgea had a fever last week & that can be a problem for a girl with ATI. But I really kept myself in check. Georgea's fever only lasted a couple of days, and she was fine. Victory....for both Georgea and me! She's almost 2 and transfusion free thus far!

So, we've got a new Dr. on the list, and darn it, he's with us for life. Good news is, we really like him. He's a great guy & he's super good with Georgea. We'll see G's hematologist every couple of months at first and then he said "once we get comfortable" the visits, if all is going well, can be spaced out as far as 1 x per year. I think that's really awesome!

I'm once again impressed with my girl. She's amazing! She's so smart, happy, fun, engaged, loving, silly, affectionate....the list goes on. And, she's doing it with "only one engine." Now that's quite something, isn't it?