Alright, so the first update is, surprise, I have a chronically ill child. Who knew? I have thought of Liz as a child who has had an "issue" since birth that has required the procedures, medications, medical attention, surgeries and hospitalizations... but I never thought of her fitting the "chronically ill" label. Really, I haven't. I even took on the Parent Advisor/Parent Mentor role at the hospital, which states that I have a child with a disability or chronic illness, without thinking I did.
Last week, a few things happened that made me think maybe Elizabeth fits this. I found myself, at midnight last Monday, trying to resist the urge to call Liz's doctor simply to ask his opinion. Can you imagine waking him only to say "excuse me doctor, is Elizabeth a sick kid; is she chronically ill?" He would have thought I'd lost it. I was in a panic though. I wanted an answer. Or maybe better said, I wanted to hear someone answer "No, she is not."
Instead of the doctor, I questioned Walter. Poor Holly, who is rejoicing in the fact that her sweet Spencer is finishing his last two chemoes and starting to return to normalcy after her hellish year(and who should not have to listen to my panic!), even got put through my crazy interrogation about Liz. I asked a social worker at the hospital who has become a dear friend - and who is probably now referring me to a social worker (kidding, I think). I literally started taking a poll of every knowledgeable person I know. Crazy, I tell you.
So I asked, and I heard what I knew. Yes, Liz is a chronically ill child. And with this last year of the added blood and marrow issues, she has been sick. BUT, she doesn't have to be called a sick kid and I will not treat her like a sick kid. We've done so well at not treating her that way, I won't start now. I just have been so determined all of this time to not have a sick kid. She would get "bad", she'd have a surgery and then she'd be totally fine for a while. And then, repeat. The last year has just been a whole new thing for us and that is why I started to question, started to panic. That, and the physical difference in her. If one more person asks her jokingly, "are you not eating your vegetables? Is that why you are smaller than your sister?" or "is Katilin taking her vitamins and you're not?" Really, she gets asked this all of the time lately.
Elizabeth is a chronically ill kid who feels pretty bad lately, and that makes me sad. Having a plan will help me not feel so panicked. I can do anything as long as I have a plan, so here's our latest plan at working towards an even better plan:
Liz will see the "big dog" Hem/Onc doctor here in Long Beach. He is the best of the best and I will feel better speaking with him, as we haven't seen him (only his partners) since last Spring.
On March 25th, Liz will see her GI doc and we'll develop a plan for helping her to gain some weight. That same week, we'll meet with a dietitian to help us with that too.
On April 7th we will meet with a new Hem/Onc doctor at Children's Hospital Los Angeles for a second opinion. A huge praise is that we were assigned the doctor I was praying for. He specializes in bone marrow disorders as well as platelet issues. Totally the perfect doc for Liz, I think. He takes no requests, but based on her records, her case spoke for itself, so we are seeing him. It will be a long day as she'll have a coupe hours of testing before the actual appointment.
This is the update. Two months from now I will update again telling you she's gained 10lbs and her blood issues have been solved and treated!!! Okay, maybe not, but I know, I pray, we will have a plan that works toward those things.
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