Another status update

So we’ve had a couple of doctor’s visits and have also seen some significant progress with her movement.

Waiting at the hospital for blood test results!

1) She had blood work done both Wednesday and today. Both times her blood counts were within acceptable levels. YAY! In fact, her ANC level was SUPER high. If you want to read more about what that means, you can click here. Her ANC levels have been boosted thanks to a shot they gave her to help her bone marrow crank out more. Because they are producing so much, it actually can make her bones ache, so she has been in some pain over the last couple of days. 😦 Poor baby.

2) I talked to Dr. Geyer, as he  saw us in the waiting room. I asked why she was classified as intermediate risk instead of low risk and he said  that low risk essentially doesn’t need treatment. So, that’s good to know.

3) The nurse said that her lungs sound  great, she’s gained a pound in a week with this steroid and they are very pleased with her.

4) Speaking of being pleased with her; we had a couple of extra visitors in the exam room who just wanted to see her cuteness. 😀 Her other doctor, Dr. Abicoff (aka: Cori) stopped. So when the nurse left the room I got to ask about Madeleine’s funny head nodding. She reassured me that it is very unlikely that this is is related to the tumor. She said that it is VERY unlikely to affect neck muscles and not also affect her arm movement. PHEW. I’d been stressing about that for a while and couldn’t get a clear answer out of the nurses.

Her pharmacist (Shannon) also stopped by! She just wanted to ogle her cuteness, but took off as soon as talk of removing the port needle was brought up. Said she  doesn’t like to be associated with the “bad stuff”, just the good stuff, like the pain medications. LOL!

All in all, a good visit today! My mom is in town, so she was able to go with me and meet all of these folks who will be walking this journey with us.

And next, the most exciting news of the week! Yesterday after my mom arrived, we were playing on the floor with Madeleine and she reached over and used my mom’s leg as leverage to pull herself over onto her tummy. Then, she proceeded to try to crawl, and used her legs, too! I had put her on her tummy just the day before to see what she’d do and she was not using her legs. Fantastic progress!!! My mom and I both started crying.

Since then, she has been rolling her hips more and onto her side, which is very exciting!! I have made it very clear that I want to start her in physical therapy, ASAP, which the nurse today said was a very good idea. I’m hoping for an appointment next week, but she said they may not be able to get me on the schedule until the week after that.

See how far back the hair line is on her right side?

Now, the only other thing is hair. I know that in the grand scheme of what is going on right now, her hair loss is a ridiculous thing to get upset about. But I am. Her hair is already falling out. 😦 I don’t want her to lose her hair. I love her hair. I love it’s reddish tint. I love how I can make it lay flat or be crazy and wild. I love putting little clips in it and giving her the “Pebbles” hair do. She’s always had hair, since birth. And a little part of me is able to look at her, not see a bald head, and not think about the cancer. A part of  me can still deny – when I look at her – that this is all real. So when I think about her losing her hair, it really hits me that it’s real and she’s sick and they’re giving her drugs that are poison. Poison to kill this tumor. ***sigh*** So there it is – my pity party for the day. Oh sweet girl, you will still be just as gorgeous and adorable without hair. I know that, and I will love you just the same.  Be prepared for lots of cutie pie little head bands.



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3 responses to “Another status update

  1. Jo

    You’re doing so well, mama! You wallow in that pity party – it’s ok to have those moments. Like I said before lots of great opportunities to make excellently cute hats for her 🙂

    I haven’t seen M’s head bob – but Aiden was doing one between 9-11 months off and on and sometimes semi frequently that had started to make me nervous back then too. So while the doctors/nurses have already put your mind at ease let me further give you some comfort knowing that I’ve been there and freaked out about that – and that’s a normal ‘freak out mommy’ thing that our kids to. 🙂 My doctor suggested that in part it is simply they are recognizing that their head can do different things and so they are doing it intentionally. Or almost like a momentum thing – they get started and just keep going for a bit. 🙂

    So glad to hear about her crawling!!! Everything sounds wonderful… and I’m glad you told us about the intermediate vs low 🙂 I was wondering too.

    Have a good Saturday!

  2. Kelly

    Good news, Heather!

    Thank you again for keeping us updated.

  3. Aspen

    Good news indeed!

    (BTW, Tycho is randomly doing a head shake–nonononono–and I just figured he was being weird. I guess it really is an age thing?)

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