Day +127: Dot Matrix

This week saw us going to the SCCA for the first time in 3 weeks. We met with Dr. Carpenter who wanted to check-in with Zoe's prognosis before he recommended tweaking her steroid and anti-GVHD medicine dosing.

He and the transplant team were very pleased with Zoe's progress, and are still not able to say whether Zoe is technically dealing with mild "chronic" GVHD or simply taking her time in managing her mild "acute" GVHD. Regardless of semantics, he declared that he wanted her to hold steady at current medication levels for another month and then see her again. If all continues to go well during that time he will then consider tapering her meds.

Meanwhile, we are to keep a look out for new signs of GVHD. Apparently making it to Day +100 clear of the stuff doesn't mean that she's off the hook.

Well, whatever.

I'm so beyond sweating all that. She's doing well, and I'm choosing to believe that she will keep heading towards health.
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I've been learning Braille and am actually enjoying it!

I've discovered another wonder of Zoe's name just in the learning of this new modality. It takes a bit of explaining to have you fully enjoy the discovery, but here it goes:

Braille creates numbers and letters by using a 6 dot formation such as that found on a basic six dot domino. The dots in a cell are numbered:

1 4
2 5
3 6

The letters of the Braille alphabet are grouped in three rows:

a b c d e f g h i j
k l m n o p q r s t
u v x y z

w

"W" sits by itself as there is no such letter in the French alphabet (the mother tongue of Louis Braille).

In the first row each Braille letter has a specific formation that only utilizes one of dots 1,2,4 & 5 --the top four dots.

Every letter in the second row is essentially the same as the letter directly above it in the first row, except that a dot in position 3 has been added.

Every letter in the third row is essentially the same as the letter directly above it in the second row, except that a dot in position 6 has been added.

So, for example the letter "a" is represented by a dot in position 1. "k", the letter that is situated below it in the second row is made by dot 1, plus dot 3. "u" is made up of dots 1 and 3 plus 6.

Going on, the letter "b" is made up of dots 1 and 2. "l" below it is made up of dots 1 and 2 plus 3; "v" below that is made up of dots 1,2,3 plus 6.

And going further again: "c" = 1,4 ; "m" = 1,4,3; "x"= 1,4,3,6

Everyone following me?

(Usually the numbered dots describing each formation are written in numerical order, but I wrote them in the fashion I did so that you can see the progression of how each letter builds on the one above it.)

So, if you look at the formation of letters of the alphabet the way I wrote them above, and mentally draw columns that group the letters vertically, you will see which letters are derivatives of the ones above it. Get to the letter "z" and you will see that it is derived from the letter "o" above it which was, in turn, derived from the letter "e" above that!

Pretty crazy, huh?

(For those who want to know how to write "zoe" in Braille: "z"=1,3,5,6; "o"=1,3,5; "e"=1,5)

Here's a quick reference sheet that I received as part of my learning materials from the Hadley School for the Blind. It doesn't show up quite as well in the blog version of the scan, but it gives you a little more of an idea of how it all works:

Day +121

Four months and a day past transplant. I just re-watched the video we made on transplant day--and it took me right back to that gaping sensation of the Enormous Unknown.

Makes me want to cry just seeing and feeling that again.

She done good. We all done good. Every single one of us --that means you!

The Zoe-meister keeps thriving and is slowly gaining the ground other kids her age have mastered by now. She sits up well and is close to being able to roll over. She is being very resistant to eating food by mouth though. She went through a period where she was willing to try anything offered to her; now she complains when anything is put in her mouth.

Many things are two steps forward and one step back with her. I keep myself focused on the long term and know, absolutely, that one day she will eat normally, as well as walk and talk and do all the things any other kid does (with her own adaptations, of course). I look at other kids her age and younger quizzically, because they are simply different species to me.

In my world Zoe is the norm.

She is starting to teeth again, after almost a year since her last two came in. The advancement of her osteopetrosis and the resulting overgrowth of bone had locked her teeth into her jaws, not allowing them to progress in the normal fashion. Her new osteoclasts have obviously been diligently at work and have remodeled her bone enough to allow teeth to begin peeking through. Three new beauties are flashing pearly through her pink gums--along with the accompanying crankiness. Poor girl will probably be teething triple time now!

Also, her hair is finally starting to grow back. We call her our little Chia Baby.





A couple new vids added to the YouTube link. It's all about getting the girl to laugh...

Day +113: Million Dollar Baby

$1,014,771.28

That's what the Explanation of Benefits that came in the mail yesterday said Seattle Children's billed our insurance for Zoe's transplant and related services.

Regence negotiated the fees down to $906,199.58--and paid the whopping sum of $248,057.29.

$658,142.29.

That's what the EOB said we owe. (Hello, heart--would you mind beating again?)

But.

We are given to understand that we will be okay--we have been assured up and down that Medicaid will pay for anything not covered by the insurance, that this will be the case through the end of the year.

Jeff called financial services at Children's just to be reassured of this after that gem came in the mail. Gary from the financial department (a very sweet man with the most stunning comb-over I have ever witnessed. Seriously. It stunned me when I saw it.) calmly reaffirmed that everything will be taken care of.

Again, I find myself being grateful for not being an "overly" successful couple in our business in the last couple years. Not that we've been floundering by any means, but I'm thankful that we didn't make one dollar more than the cut-off for aid.

The margin between making too much to qualify for financial aid--and making enough to actually afford over $650K of medical bills is astronomically wide. Anecdotally I know of a local family who found themselves within this margin--and it is crushing them. AND, they still have a chronically sick kid to have to manage as well.

What is wrong with our country? This medical monetary hemoraging has got to be fixed. Maybe pluck a billion or two from TARP...
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This week we saw Zoe's new pediatrician for the first time. Blythe Thompson works at the Hemo-Oncology department at Seattle Children's and is very familiar with post transplant children. We liked her.

Mainly things have been continuing to hold steady with Miss Z--with little tweakings here and there: her NG tube had to be pulled out an inch and a half as an X-ray showed it was going beyond her stomach and into the intestine (not good); her topical steroid for stomach GVHD got increased back to its original, larger dose (here comes Crazy Baby!) as her stools were not improving.

We're moving forward with PT and eating help for Zoe. I've posted a new vid on YouTube of Zoe relishing a cracker--the likes of which we haven't seen since. It was a brief burst of interest in food, and now she's back to resisting attempts to put edibles into her mouth.

Honestly, it seems easier to just fill up her formula bag at this point and set the feed pump going than wrestling food into her mouth.

I mean really, what mother wouldn't agree with me on that?

Day +105

Day +100 passed last rainy Saturday, with little fanfare. It's so good to be this far on the other side, to realize that it's been a solid 6 or 8 weeks since I started to allow myself to future-trip with my girl again.

I've been thinking about what it will be like to raise a blind child--a girl in particular. The awesomeness of that journey freezes me up a bit when I think of it; so many things to figure out.

How do you teach a child with no verbal memory of sight what a bird is? How it flies? What colors are? The enormity of the ocean? Stars and space?

Sex education??!

That one stymies me. Pictures are pretty helpful for that topic. Without that option...how...exactly?

I just signed up for an Intro to Braille correspondence course offered for free by the Hadley School for family members of blind people. I figured I had better get started learning it now. Zoe will outstrip me regardless, but I don't want to be completely unprepared. My understanding is that sighted people actually learn Braille by visually reading it. Apparently it's a bit late for us to develop the needed tactile sensitivity to read it by touch.

We watched an amazing documentary on YouTube about a 14 year old blind boy who taught himself how to navigate through his world by using echo location. It's a truly inspiring piece done in five parts that you can watch by clicking on these links:

Part 1
Part 2
Part 3
Part 4
Part 5

I particularly was inspired by the mother's attitude, which was obviously a huge support and benefit for him.

I'm taking it in, this learning about being a mother to a special needs little girl. Some of it comes naturally, but I'm seeing that most of it is plain old going to be constantly-in-my-face opportunities for "personal growth experiences."

Already started really. And how.