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...