Monday's appointments

I'm going to be brief with this entry--I have really got to get myself in bed by ten these days. Later than that is just not working for me with this night waking baby of ours.

Monday was just mostly a whole lot of waiting around. We were schedule for 1.5 hours worth of meetings starting at 2pm, but we basically waited for 2 hours before our scheduled doctors could meet with us.

Cunningham was willing to meet with us, unscheduled, to answer a few of our burning questions regarding bone and marrow samples being sent to the right places. It was just a crazy day for him and everyone else at the clinic that day, but he was so good at being focused and present and not relaying the sense of needing to be so many other places while he was with us.

The social worker met with us to talk about how we were doing with the idea of the surgery, to give us basic info like where we would be waiting on Thursday, where the designated room for "pumping" is (they think of everything), where the computers are (I will be able to do blog updates as Thursday unfolds), etc. Tomorrow she will actually give us the guided tour.

We met with the plastic surgeon, who gave us the run-down for the surgery procedure (a lot of bone cutting and reshaping)--again, they have allotted 8 hours for it.

A couple of nurses met with us to get some details about Zoe. One of them showed us photos of other babies who had had surgery at Children's for craniosynostosis. The before and after pics are pretty astounding. The post-op photos are a little rough.

I will be taking pics of Zoe before and after --and during recovery. I know not everyone is up for seeing a post-op baby--so I'm going to figure out how to load the photos up on another website so that those who wish to see them can do so.

It was a bit of a grind being there for so long. Our friend Amy came to take notes again and remember the questions we forgot to ask.

Here's how we looked:













Feels like we're at the start of a verrrrrry loooonnnnnng marathon.


And, we haven't even trained.


Tomorrow, more meetings, more details about Thursday, and another blood draw. Poor girl, I'm surprised she has any blood left!

On the verge

A week of no posting; a blessed week of little news.

Of note, we were called last Wednesday morning by Seattle Cancer Care Alliance to bring Zoe in for more bloodletting, er, samples. Apparently they needed 15 more cc's worth to complete the typing process. 15cc's is a large amount for a baby of Zoe's size, but apparently not a prohibitive amount.

I am getting to be a very good advocate for my girl; I know to request the rooms that have the special pediatric chair for the blood taking. My genetically pushy nature is starting to come in handy.

Tomorrow we have some pre-operative appointments with the plastic surgeon and the social worker. Wednesday we meet with the neurology nurse and anesthesia.

Holy Moly, it's almost here.

-------------------------------------

I am starting to be convinced that Zoe must have an understanding that "Mama" is associated with me.

Not that she calls me that, or even deigns to say it during the day--absolutely not when I say it to her--

Mama, I tell her, when she does her dadadadadadadad run-on vocalizations.

She simply pauses and does a big, slow smile.

I'm your Maaaa Maaaa.....

Again, a mischievous big smile. But no such luck in getting her to say it back to me on demand.

But!

There have been four different nights now that, in our sleep deprived haze, when we have tried to get her to "cry it out" through one of the many wakings in the wee-sma's, she finally resorted to a Maaaaaaaa Maaaaaa! of the most pathetic proportions.

Of course, I went to her immediately then.

I must give her positive reinforcement for genius.

-------------------------------------------------

Okay, a topic that's been on my mind---

Let's just say that "How are you?" (and especially "How ARE you???") is off the table. No longer an allowed question.

Suffice it to say that the answer always lies within the range of "shattered, pissy, fucked up, terrified, hanging in there, intentially numbed out, morbidly depressed, sleep deprived, just this side of stark raving mad, etc."

"How are you?" is such a habit of all greetings (myself included), but I never know how to answer it these days. Because, frankly, I don't really want to go into it most times. But then, I don't really want to lie either. At least, not on the breezy greeting side of things (a meal, some wine and some good conversation already, and maybe it's a topic for later).

Accordingly, Jeff and I have decided it's no longer a greeting question that is allowed.

So! We have come up with some alternatives:

• Hi! Great to see you.

• Great to hear your voice

• What are you doing today?

• What's going on?

• Wow, have you lost weight?

• I'm just calling to say I love you.

• I'm just calling to check in.

• I just stopped by to give you a hug.

• I just wanted to connect.

• Hi, can I tell you about the funny thing that happened to me today?

• Can I tell you about this great, uplifting story?

• Are you up for some company?

• Are you up for some mindless chatter?

• I'm calling to see if you want a coffee and a danish.

My friend Mary just offered these two alternatives:

• Can I offer you some Prozac?

• Would you like some of the cabernet I just opened?

I'm sure there are some more brilliant ones out there--feel free to chime in.

I'll have to think of a prize for the best one ;-)

----------------------------

One more thing for tonight---look to the links on the right side of the top of the page: you can now watch Zoe on YouTube.

Love to all.

Reiki Treatment...

Risa, Brian and Marie came over to give us all Reiki treatments.
Zoe soaked up the good vibes.

Altar Blessings

It's been so amazing and humbling to feel the love coming from all quarters for Zoe and us. I wanted to share a few of the contributions to the altar that have shown up.

From my dear childhood friend Mikelle came a card with her finisher's medal and a picture of her wearing it after completing her first 10k run. She was inspired by an article she read about a doctor who gave his own running medal to a friend fighting cancer. His comment to his friend was "You are running a much more difficult marathon than the one I completed." Mikelle says in her note to Zoe "Please add this medal to your altar, but make sure to also wear it when necessary. I don't mind if you let your mom and dad wear it too."

From Jeff's old friend Sheryl came a little ceramic Angel of Hope carrying the flame of Hope and Courage.

Brooke brought a jade skull.

Marie brought a string of pearls, a beautiful photo of the sunset, a little angel pin, and a blue jay feather for the altar.

Piyale brought a little blue Turkish stone which wards off the evil eye.

The lovely folks at Stillpoint gave me a statue of a Jizo Bodhisattva in honor of my birthday. The card that came with the statue says this about Jizo:

"Jizo is a special protector of children, travelers and women. Jizo is also known to help those who are working with a life problem or physical affliction. Jizo is a powerful image of hope and solace. Jizo's qualities include unflagging optimism, fearlessness, and gentleness. A Bodhisattva is one who devotes his or her life to freeing others from suffering. Bodhisattvas are not worshipped, but are an inspiration to awaken to the qualities of an enlightened being that are inherent in everyone."



And just today, we received this note in the mail:

"When my sister, Helen, told us of your precious Zoe it was to tell our Zoe (my granddaughter turning 6 on the 29th) that there was a new little person with her name. Our Zoe said, 'Do you think she knows her name means "Life", Grandma?'

"Helen told us that your Zoe had some battles to fight, and I shared that she had been sick. While we don't know any details, that was enough for our Zoe to hear. She's decided that every time she writes her name at school, she'll tell your Zoe all the way from Maryland to Washington... 'Zoe, "Zoe" means Life!'

"She's enclosed a picture she drew as well. It's of 'Zoe and her mom sleeping up high close to God so He can sing to them.'

"Can you tell why our Zoe's middle name is Ann? It means...Grace."



Out of the mouth of babes.

Amen.

As we wait

This, from our dear friend Jon, who found it and sent it our way.

A poem by Rashani:

There is brokenness
out of which comes the unbroken,
a shatteredness out
of which blooms the unshatterable.

There is a sorrow
beyond all grief which leads to joy
and a fragility
out of whose depths emerges strength.

There is a hollow space
too vast for words
through which we pass with each loss,
out of whose darkness
we are sanctioned into being.

There is a cry deeper than all sound
whose serrated edges cut the heart
as we break open
to the place inside which is unbreakable
and whole,
while learning to sing.

Zoe's Favorite Toy

With all the intense medical information being posted, I wanted to share some of the magic of Zoe we experience daily. Enjoy!!

We Have Dates

Zoe's skull surgery has been moved from the 13th to the 9th of October. Not much of a jump up, but it will do. In light of the fact that I woke up with a wicked cold yesterday (no, my name is not Job, really)--having the surgery date be that far out allows time for Zoe to recover should she catch my cold. Thank goodness for small blessings.

Prior to the surgery we will be having two mornings worth of meetings on the 6th and the 8th to meet with the surgeons, anesthesiologist and the social worker.

Flipping through the little booklet they sent about our time in the ICU, among all the logistical information (like no flowers allowed in the ICU) was a paragraph that caught my eye--and made both of them well up:

"Share with the nurses special things about your child; what he or she likes to do, favorite friends and animals, or anything that will help us to see your child as the person he or she is when well."

Wow. For an institution to understand the power of positive visualization--makes me feel pretty good about Zoe getting treated there.

Dr. Cunningham called us yesterday with some more updates.

He had a long conversation with Dr. Key from the osteoclast group at MUSC. I had asked Cunningham to ask Dr. Key where the best place for Zoe to get a BMT for osteopetrosis is--and Key's response was that there were only two places he would recommend: Seattle and Minnesota. He went on further to say that while Minnesota (I'm not certain where--Mayo Clinic?) has done more of them, that it was in no way an indicator that they would be more successful should we go there. His opinion was that our already living in Seattle should have us doing the procedure here. As it will be a looooong haul, our comfort in being at home during all of it should be a big deciding factor.

Key said that he absolutely agreed that we should take care of the skull pressure first. Key also told Cunningham that Jeff and I are absolutely welcome to call him and talk to him ourselves.

Cunningham is still working with the results of the blood test. While the lab is not willing to say that the change they are seeing in one of the genes is responsible for the osteopetrosis, Cunningham's own expertise in molecular testing has him saying that it is. He says that the good news with this is that her form "tends to be transplant responsive."

Jeff and I need to undergo genetic testing ourselves to see if we each carry one of the two mutating genes, or if one of us is the carrier for both. It would be too heavy of a thing to bring in another baby with such a life threatening disorder.

And, I've just got to say this--dears, check your insurance policies. A bone marrow transplant costs $600,000. Our Regence plan puts the $$ cap for a BMT at $250,000.

Apparently, this is quite common.

The financial person we sat down with at SCCA when we were there a week ago talking BMT details said that for non-Washington, Oregon, and Idaho residents, they require a deposit in the form of the difference between the insurance cap and the $600,000 prior to treatment.

Holy crap. Can you imagine? Your loved one is on the verge of dying and you must find a way to put mortgage-amount of money down before they can get treated?

If this isn't an argument for universal healthcare, I don't know what is.

In the manual they sent us entitled "Preparing For Your Transplant" there is a section on raising money--press kits, how to host an auction, and the like. Again, it is just so wrong that this is a part of our healthcare system.

My rant.

As we mentioned before, we should be okay in terms of medical bills. As the BMT will be performed at Children's, our financial aid that they are providing us should pick up the difference between what our insurance does and doesn't pay. Halleluiah. I've never been so greatful for not making a lot of money. We only now have to focus on living expenses during the time that we cannot work.

Two days ago was my birthday. That evening we got to bask in the love of our amazing community as they came together to chant --and eat cupcakes-- at the beautiful house built by Arturo and Risa.

Thanks to all who came, and to all who ohm-ed at home. Your love keeps us strong, keeps us going.

Namaste.