Anniversary of sorts

Today I realized that it's been exactly one year since Zoe's diagnosis. A year ago, these very minutes I was writing my first blog post, reeling from the news we had just been handed hours before.

What a crazy, crazy year it's been since then.

And~

Zoe is here, she's alive, and she's thriving.

I had no sense of this outcome, no mother's intuition about how it would turn out. In the months after her diagnosis, but before her transplant, I would look at her sometimes and know that she was going to make it. But just as often I would look at her, heart aching, seeing the funeral with all her favorite music playing. Those visions just knocked me flat.

It was quite a head space to occupy for a good while there--we've only really became convinced of her sticking around with us for awhile yet in the last few months.

Jeff and I have grown and changed and stretched and broken and grown some more, but mostly we still feel like we're treading water (however, with less anxiety and thrashing about). I wish I could say that I've grown into a more spiritually advanced person, a more patient person, or a more gracious person for the experience, but mostly I just feel more tired and more easily irritated. I hope this won't always be the case though. I think that as Zoe progresses (and sleeps longer!) I may finally get back to my old, less irritated self.

Zoe continues to be the powerhouse of vitality and regeneration that she is. She had her Hickman line taken out on the 11th as scheduled, and it's been pretty smooth sailing since then. She's had a couple pokes for blood draws and only fussed a bit.

She seems so close to crawling finally--she's rolling from front to back, back to front, scooting on her back, reaching beyond her immediate circle of comfortable arm's reach. She finally seems motivated to explore beyond her immediate vicinity. As such, she's finally graduated from being able to lie on the couch without supervision, to having to be placed on the floor so that she won't roll off; a milestone most babies achieve by the 4th or 5th month. So, she's close to 20 months, but all good things..., right?

She's been strong enough for all of this physical work for a couple months now, but she didn't seem interested in moving beyond the comfort of lying on her back all day. I had started to describe her as "not gross motor skills delayed, but motivationally delayed". Motivation is finally kicking in in spades.

Yesterday we took her in for her check up with Dr. Carpenter at the SCCA. All was pleasure at her progress. There had been a concern arising last week as her lab reports had shown that one of her liver enzyme levels had shot up to quite high levels (not good). Only two things can make a post transplant's liver enzymes shoot up: adverse drug effects, or GVHD.

Her pediatrician had us hold one of her drugs for the week to see if this week's lab reports improved. They did, significantly (yay!)--but Carpenter said it could have been a coincidence, "hard to say." He didn't want to start any taper of her steroids or immunosuppression drugs even though she's been doing so well. His reasoning is that she had an unrelated donor's peripheral blood stem cell transplant--and the risk of GVHD is very significant with such.

Best not to rush to rock the boat.

The plan is to wait until Zoe stabilizes from the placement of her G-tube. G-tube? Newest development.

Currently Zoe has an NG-tube (nasal gastric) that goes through her nose, down her esophagus into her stomach for the purpose of feeding her and administering meds. A G-tube is simply a gastric tube that is surgically inserted through her abdominal wall directly to her stomach. A cap keeps it closed while not in use and the whole thing hides under her clothing. Without the NG tube there is no longer a risk to her pulling it out and aspirating the formula, there is no need for tape to be perpetually on her face, she no longer has a visible statement to all who look at her that something is "wrong" with her, and she will no longer have a tube dangling down her throat. This last part is possibly the best perk: without a tube in her throat she may feel more inclined to actually start swallowing food again.

It means surgery though, and another appliance sticking out of her, when we had just gotten rid of the central line. It does bring a greater risk of infection as well. However, the risk is not as strong as the Hickman risk was, and we did pretty well with that. I talked to a couple people who said that the G-Tube is great--one of them a mother of a small child who had one put in after a long time with an NG-tube. She said it was a God-send.

So, once the G-tube is placed and Zoe seems to be stable and business as usual after that, THEN Carpenter said he will look at tapering Zoe's meds.

Something out there is determined that I will learn patience. Eventually.

Zoe on the Main Line

Big exciting news in the ZEN universe is that Zoe's hickman line will be removed on August 11th.

I've been itching for it to come out; its usefulness has been waning with the growing gaps between blood draws. And when I think on it too much, I cringe with the thought that these dangling tubes Zoe constantly play with tap into a vein that goes directly to her heart.

I thought it was Dr. Carpenter's call to determine its removal date, but Zoe's pediatrician said that it was within her jurisdiction as well, and agreed that its removal would be a good thing since its benefits no longer outweighed the risks.

Zoe could have gotten it removed sooner than August 11th, but lines are only removed on Tuesdays--and only two per Tuesday at that. So, she's got the first available slot, which puts her on August 11th.

When her Hickman goes away, so will the daily line flushes, the twice daily blood thinner injections, the weekly dressing changes, and the line protection protocol prior to bath time (the inconvenience of which has unfortunately rendered Zoe rarely bathed).

Hot diggity dog.
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Zoe has started to try and imitate words said to her. It's a particularly interesting process since she can't watch us and see how we are forming the words with our mouths.

Her ability to imitate relies on her understanding how sounds we make relate to all of the various babbling sounds she makes on a regular basis. A plastic "pitcher" handed to her went through the rapid name evolution of "dada" to "dida" to "geetcha". It all happened through a quick succession of my stating the word and Zoe attempting to say it more correctly with each effort.

I remember as a child not hearing certain words in detail. I would call a signal a "sigunal" and not be able to understand why my mother kept telling me I was saying it wrong; I couldn't hear the difference between the two pronunciations. I think about this and imagine that Zoe has more of a limit to what she can do verbally since she can't see my mouth form the words. Mama is "Nana"--and no amount of prolonging the "m" gets her to understand that there is a difference between the two words.

Humorously enough, "nana" is also how she says "nose".

Yep, that's me--Nana with the nana. My nose follows me everywhere...
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This evening was quite the unique experience for us: we went to Seattle Children's Hospital as visitors for the very first time.

Yesterday afternoon I got a call from an old high school friend, Ryan, that I had reconnected with at the 10 year reunion. Ryan lives with his wife and 8 week old baby girl in Kalispell, Montana. The call yesterday was hurried and bewildered; Ryan's wife and daughter were to be flown ASAP to Seattle Children's as they had just ascertained that Ava, his daughter, had a rather serious heart defect that needed to be fixed right away.

Ryan called me within hours of the diagnosis and I was transported to that place, last August 26th, when our lives as parents got pushed over the precipice--just as theirs were in free fall at that very moment.

His voice, his shock and the sound of a psyche in overdrive were all too familiar. They were coming here--and by god, did we know how to support them!

All of the love and care that you all have shown us have been waiting for opportunities to be paid forward, and walking up to the Giraffe entrance with dinner for our friends felt like a sacred honor that you all have passed on through us.

Thank you.

P.Y.T.

According to Zoe's oncologist at SCCA, "she's ahead of the curve" as far as how well she's doing at this point past her transplant. She still seems to have no sign of chronic GVHD showing up--especially remarkable given that she had a peripheral blood stem cell transplant (which result in the highest rate of GVHD occurrence).

Our appointment--a monthly check-in--was three Tuesdays ago (see, my timeliness is definitely slipping) at SCCA.

It was so good to see the jaw drop of the PA Natalie when she walked in and saw Zoe for the first time since halfway through Zoe's hospital stay. Last Natalie had seen was Zoe with a distended abdomen, a refractory platelet problem, acute skin GVHD, and a swollen head. To say that Zoe was an altogether new baby in Natalie's eyes is an understatement; watching Natalie's face full of wonder as she gave a boisterous Zoe her exam was potent medicine for Jeff and I.

I guess we can really believe that we have a Wonder Baby.

As well as she is doing, Dr. Carpenter (the oncologist) declared that he didn't want to shake anything up by changing her meds. He did say that she's well enough to stretch her next check-in out to two months; he said he'd see about the appropriateness of backing her off the steroids then.

According to Dr. Carpenter, the steroids are at a minimal dose as it is. A good indicator of this is the fact that Zoe does not really have that steroidal puffiness that people get when they are on a larger dose. Certainly she is chunky, probably chunkier than she would be if she weren't on the steroids, but she doesn't have the jowls and the abdomen of people on higher doses.

That was good to hear.

We've been slowly introducing Zoe's gut to the concept of "bolus feeds" which is where we give her a "large" dose (70ml) of her formula and give her a break from her continuous feeds for an hour and a half afterward. The idea is to eventually get her able to take 120mls of formula four times throughout the day. At the point that this is possible, Zoe will not be needing to be on a continuous feed drip 24hrs a day.

Definitely a worthy thing to work towards, but until we get there this new regimen has us fiddling with either meds or a formula bolus every two hours from 8 am to 8pm (with another med push at midnight).

I'm used to it by now. On my days with Zoe I don't get out much since going anywhere means prepping for at least an hour (and whoops, gotta get another med push in--and, there goes her diaper!).

Jeff and I are nursing machines.

And hopefully soon we will be well toned (let alone honed) nursing machines. Jeff ordered a workout DVD series, advertised on late night infomercials, known as P90X. We have been doing push ups and chin ups and crazy-difficult exercises for the last two weeks that have made us extremely sore.

We figure, we're already exhausted--why not be exhausted for physical reasons? I don't think I've ever exercised at this intensity in my lifetime--but talk to me in a few more weeks; two weeks ain't long enough to brag about...

Here are a couple pics of Zoe working with her PT Sarah--who is helping Zoe become comfortable with putting weight on her feet.




Check YouTube in the next couple days to see some videos of Zoe working with her PT and life skills educator...

1.5 Birthday!

Short post--I have been working on a much longer one for what's been waaaaay too long. But my eyelids are slipping down on my efforts once again, so I wanted to get a quick one in to say:

Zoe's 18 months today!

What a love and joy she is --and such a little ham. Tonight I went into her room 20 minutes after I had put her down for bed to do some fiddling with her feed pump. She was lying quietly with eyes closed, blankie held next to her face, and breathing slowly and steadily.

Without warning she whipped the blankie down, opened her eyes and yelled, "Baaaaaahhh!" with a big grin on her face. It surprised me so much that I started to laugh hysterically (I know, I know--you're never supposed to laugh at behavior you don't want to encourage...). She was quite pleased with herself--and I was immensely impressed with this obvious comedic genius we are raising.

I uploaded a couple more videos to the YouTube channel--one of Zoe playing a piano duet with me, and the other of Zoe showing Jeff the proper way to follow an exercise video.

These two pics are of Zoe in her walker--we're trying to help her understand that standing is "fun"! She's not really buying it...

Day ????

My "weekly" posts are being stretched further apart with each posting now. I believe I have hit the two week mark for the first time in awhile. I've gone long enough that I've lost count of the days post transplant.

It's definitely a sign of good things: with less trauma and excitement I feel that I have less to report.

Zoe just thrives, that's the gist of it all.

She's massively delayed for her age, but for HER, for Zoe--she is amazing. She's a master at rolling over from front to back. She's an accomplished sitter, and she's slowly learning that supporting her body weight using her feet and legs while being held upright can be a fun thing. Zoe jabbers and laughs all day long--interspersed with healthy amounts of whining of course--filling our house with happy baby sounds.

We are blessed.

That isn't to say that we are not still suffering from too much sleep deprivation, nursing fatigue, doctor and therapy appointment overload, and accompanying mood challenges, because we are.

But, I'll take it all because it's all part of what has allowed us much more time with this amazing little girl.




This last photo is a picture of Zoe during one of her sessions with the speech therapist whose other specialty is helping kids learn how to eat. Although the photo makes it look promising with the scooper of food in her mouth, Zoe still refuses to have much to do with food.

Check YouTube for eating therapy vids...

Day 135: The Dark Side of the Coin

Zoe is doing great--just some issue with a diaper rash from hell and some accompanying diarrhea (aren't you glad you asked?). I placed her on her tummy today with her bottom bare to give it an airing--eventually I glanced over to find her on her back. That's the second time in a little over a week she's rolled over on her own. At seventeen months old it's not very precocious for her age, but for Zoe it's perfect--and we couldn't be more thrilled.
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I've been dragging my feet in writing about this next bit, but here it is:

Remember the UK family I once mentioned who has a girl, Alishba, just a few months older than Zoe with osteopetrosis as well? I don't know if I mentioned that within days of her diagnosis almost a year ago her mother found out that she was pregnant again.

That child, another girl, was diagnosed in utero with OP as well. Simrah was born March 10th this year, and started her transplant proceedings a month and a half later.

Simrah contracted an influenza virus a few weeks ago during her transplant process, was on a ventilator for several days, and so tragically and unfortunately was not able to handle the stress of it all and passed away on May 25th.

Her family, understandably, is in shock and grieving. I think of her mother and can barely hold the comprehension of her pain in losing a child so soon after giving birth it.

There it is. Right there. The other side of this crazy coin toss that we have experienced.

I am in communication with Alishba and Simrah's twin aunts, and to them I sent this email that better expresses what I can't seem to access now while I write of this:

Oh Loves,

I'm just sick for you. There is no getting around the pain you all have to go through.

I don't know if this brings any comfort at all, but when we were on the other side of the transplant process, being told that Zoe had a 50% chance of survival, we had a couple talks with a Zen Buddhist monk who counseled us.

He told us that this whole experience was about Life and Death. That there was no softening that fact.

Life.
Death.

He said that Zoe was still so close to her state of Being before Life, that if she had to go, it would be a familiar and comforting place for her. It would not be a scary Unknown--for her.

Does not really make it easier for us--for you, the family that is left grieving Simrah's retreat back to the Beyond she so recently emerged from. It's not fair, it is horribly painful and beyond ghastly and tragic to think of the path leading up to her departure.

It is a shock to see how horribly wrong this process can go. It does reduce me to tears whenever I think of your little angel--and it's nothing compared to what you all are going through. I know it brings home how easily I could have lost Zoe myself.

I am so grateful that Alishba and Zoe are both doing so well--what a healing salve of a girl your niece must be to you all! Just as I smother my girl in hugs and kisses --smother that little one of yours with the same!

I wish for you two love and comfort and healing for the pain of your loss of little Simrah. I don't know that I believe in a God, but I do believe in the primordial soup of Love that is the base of all Being--and know that Simrah is cradled tight in that Love that was, and is, her Birthright.

As it is for all of us.

xxoo Kellie

If any of you feel as though you would like to send your words or thoughts of comfort to their family through Shaheena, one of Simrah's aunts, you can contact her through her YouTube channel--and see videos of Simrah and Alishba as well.

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: