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.

Surgery Notes

I'm nearly flat on my back typing this--my lower back went out on me yesterday. I don't even know what to say about that. Sheesh! Thank heaven for chiropractors, ibuprofen, friends that come cook and garden, and mostly for devoted husbands....

Last Monday was a marathon of doctors' consultations. As noted before, our over educated friends Susanne and Amy were with us to take notes and to think of questions we were too stunned to ask.

Because I'm just too daunted at this point to try and turn the notes into a narrative, below is a large portion of Susanne's notes as she wrote them. Any of my additions or comments to her notes will be in purple. Any thing in brown will be additional points I've added from Amy's notes.

Team Zoe Meets with the Craniofacial Team
at Children’s Hospital

Monday, 9/8/2008

Impromptu mission statement:
Team Zoe is here to support her happy, healthy, long life!

Michael Cunninham, M.D., the primary craniofacial physician, meeting

• Cunningham is the lead physician and go to person for Zoe’s craniofacial concerns

• He reports that the test results are not back yet, but expects it to be here by Friday. The blood tests have come back, but there is still some investigating to be done. What's clear is that she does have osteopetrosis. What's still not clear is its treatability via bone marrow transplant (Cunningham is fairly certain it can be treated) and the exact genetic causes of her osteopetrosis. He wants to get more data from the lab so that we can know how likely this would show up again were Jeff and I to try for another child. There is a strong likelihood that we would have a 1 in 4 chance of this happening again as it looks like we both have a recessive gene for the condition. Ouch.
  

• Dr. Key in S. Carolina, who works exclusively with osteopetrosis, did not respond via e-mail, so Dr. C. will be calling him this week.

• Dr. C. recommends the cranial expansion surgery to relieve the pressure on Zoe’s brain.

• The surgery will be performed by both the neurosurgeon, Dr. Avelino, and the craniofacial surgeon, Dr. Hopper.
  

• The surgery does not go below the dura mater (the strong tissue that wraps the brain) so that the cerebrum (part of the brain) is not exposed.

• The optic canal (the holes that the optic nerves go through) enlargement is the most complicated part of the surgery since they have to work around the optic nerve.
  

• Dr. C. asks that they sign up for a “scales survey” (x-rays of the rest of the body) before leaving today. These x-rays were done this morning. Zoe was great--relaxed and happy. She continues to generate fans wherever she goes.
  

Then came the scheduled meeting with the neurosurgeon. First his "fellows" came in to review Zoe's chart:

• The growth of the brain usually directs the growth of the skull, with the sutures (the hairline cracks in our skulls) moving with the growth.

• Zoe’s CT scan shows early closure of ½ of the lambdoid (in the back of the skull) suture & both sides of the coronal (top/side) sutures, as well as significant opening of the anterior fontanelle (soft spot on top of head where she is bulging).
  

• Zoe’s skull bones appear much thicker and denser than they should be. The frontal (forehead) bone is 3/4 inches thick on Zoe. The standard thickness is 1/8th of an inch.
  

• The role of the neurosurgeon in the craniosynestosis surgery is to make the cuts and mobilize the bones so as to stay superficial to the duramater and to protect the brain.

• Because of the amount that bone bleeds, she will most likely require a blood transfusion during the surgery. The doctor said there is 100% chance that she will need a transfusion. I looked into being the one to donate blood to her. The nurse said this is certainly possible, but that it would make it impossible for me to be an organ or marrow donor for her as she builds antibodies to the blood given to her in transfusion. Interesting. In the off chance she needs one of my kidneys, I suppose I will let the blood bank do its job.
  

Meeting with neurosurgeon, Anthony Avelino, M.D.

• The anterior fontanelle usually closes around 18 months, and the posterior fontanelle around 3 months. Zoe’s fontanelles are too open at this stage.

• Dr. A. recommends expanding the skull and optic canal.

• He has performed the optic expansion 2x in his career; the last time was 8 years ago.

• Benefit of surgery: relieves pressure on the brain and optic nerve.

• Risks of surgery: general risks are infection and death. Specific risks are loss of blood (this is the highest risk) and neurologic damage. Three words: E Ticket Ride.
  

Meeting with nurse practitioner, Marsha

• One of her jobs is to find a surgery date. We are trying to get her scheduled in the next 2-4 weeks. We are having to bump some other children and make sure all the docs/surgeons can be here on the same day. Currently the surgery date is scheduled for October 13th. If they can swap that day with a child that is scheduled sooner--a day that has Hopper and Avelino working together, then they will do it. It is difficult when moving surgery up means postponing another kid's corrective surgery. They know that Zoe's case is more urgent than many, but other cases are pretty needy as well.
  

• She inquired about getting a coagulation screen (this was already done).

• Zoe will have a pre-operative appointment the Monday prior to the surgery

• After the surgery, Zoe will be taking pain medications every 4 hours for ~1 week (e.g., baby Tylenol).

• Zoe will stay at the hospital for 3-5 days post-op.

• She will be in the ICU for the 1st day or 2 (ratio of 2 patients to 1 nurse)

• Only one parent can stay overnight in the ICE

• She will later be transferred to the surgical unit – both parents can stay overnight (ratio of 4 patients to 1 nurse)

• Immediately after the surgery, water will be given to Zoe (in the event she were to aspirate into her lungs, water is much safer).

• Post-operatively, another CT scan will be taken.

• Zoe will not be her usual self the 1st 24 hours after the surgery.

Meeting with Dr. Hopper, craniofacial surgeon (& 3 fellow entourage)

• After Dr. A. takes the bone off, Dr. Hopper will reshape the bone and put it back on.

• After looking at the CT scan, he explained that the frontal lobe has the greatest pressure on it despite the enlarged appearance, since the frontal bone is actually 3/4” thick.

• The surgery involves removal of the “visor” – the lower frontal bone, the temporal bone, the sphenoid & zygomatic that shape the brow. For those of you unfamiliar with the skull bones, go here
  

• The surgery will have 3 phases

1. Bony reduction: this involves the removal of bone from the frontal bone (3/4” excess).
2. Bone repositioning: this is the reshaping and expanding of the bone, that will utilize some of the reduced bone to fill in any gaps or “soft spots” that result.
3. Optic canal expansion: since they’ll be going in through the front, they will be close to the optic canals so it would be best to have it done now to avoid revision later. There is no guarantee, however, that this will improve Zoe’s sight.
   

• The skull is usually designed to protect the eyes at the brow; Zoe’s skull, however, is narrow along the temple region and flat at the brow, which is part of the reason for the reshaping. Surgery will increase her brow, she may have a Schwarzenegger brow just post-surgery, but it will soften very quickly.
  

• The anterior fontanelle will flatten out as a result of the reshaping.

• A diagnosis of osteopetrosis would not change how or why they would do the surgery, since the mechanics are similar to craniosynestosis. Amy writes Hopper's response to my question of: How does Zoe having Osteopetrosis change how you approach this surgery? Overall it will be the same, but I will treat her bone more like that of a 5 year old- it will be stiffer. I have not done this surgery on kids with osteopetrosis. It is a very rare diagnosis. I have worked on kids with fibrous dysplasia which is also a genetic disorder with increased bone growth- actually more bone growth than osteopetrosis.
  

• The brain growth usually stops around the 1st year of life and the head growth usually stops around 7 or 8 years.

• Dr. H. has not worked on with osteopetrosis, although he has been involved in several surgeries that enlarged the optic canals. He says the surgical procedure for the optic canals is not unique.

1. We have decided that it may be the best time to do this aspect of the surgery as we don’t know if we will every be in this area of Zoe’s skull again. And in doing the Bone reshaping we will already be ¾ of the way into this surgery, so we see it best time to access this area.
2. Also called this decompressing the optic canal by “burring down” the bone
3. How do you protect the nerve in this surgery? The only way to do that is to go slowly using microscope and small tools.
4. Has assisted in 2 of these surgeries in his career. Both with the other Neurological surgeon at Children’s. one was 2 yr ago and one was 1 year ago. It is an uncommon surgery.
5. Kellie’s concern about Dr. Avalino having done them 8 years prior…. Dr. Hopper’s opinion: Dr. Avalino does a similar technique quite often in more dangerous/tricky areas of the body. I can understand why you are asking and I feel very confident in Dr. Avalino’s abilities.
   
   

• Zoe is at a good age to do this surgery. It’s his hope to avoid having to do a 2nd surgery.

• The surgery will take at least 8 hours.

So, that's most of what we know about the surgery. The last conversation I had with Dr. Cunningham made the issue of whether the surgeons were indeed going to enlarge the optic canals still a question. As of last Friday, when I had the last conversation with him, Cunningham planned to have a conversation with Dr. Weiss (the chief ophthalmologist) about whether there was any hope for the nerves to regenerate.

Cunningham said, I know Weiss. He will likely first say that the nerves are gone. But then, I will press him and say --- 'How about the plasticity of a baby's physiology?' I'm betting that he will then say ' Weeeelllll, it's possible...' If Weiss has that response, then absolutely I think we should go in there.

Tomorrow we'll bug Cunningham for the latest.

More info on donating bone marrow

I called up the National Marrow Donor Program to find out how long it takes for people's typing information to be included in the donor registry: 6 to 8 weeks. The search for a match can take awhile, so it still could conceivably be in time--but no guarantees.

Usually it costs $52 for your cheek swabbing kit that they use to type you, but if you sign up between now and September 22 using the NASCAR promotion, you can do it for free. I just did it myself--it took about 15 minutes of my time tops. Look for the link towards the bottom of the page that tells you to click there if you can't make it to a racetrack. If you are like me, you will never be making it to a racetrack!

If you would like to be tested only for Zoe's needs, I was told that people should contact Kashi Clinical Laboratories at 1-888-732-4018. However, the phone number listed on the website says the contact number as 1-877-527-4452.


xoxo

Bone Marrow Donation

On the subject of being tested for bone marrow donation, here is the website where any of you who is interested can start to do your research.

Be sure to read the FAQ's. There is a difference in process between adding your info to the database in general, and for Zoe's use alone. Being on the greater database roster allows you to be screened for anyone who needs a donation up until you are 61. You can always change your mind and take your name off the list at any time.

Tomorrow I will call to find out if anyone who sends in their testing kit now would be included in a timely enough matter to be screened for Zoe's needs. Stay tuned.

In the meantime, I thought I'd pass along the info so interested people can get up to speed on what donating means.

Being on this side of the experience, I can say that I am adding my name to the database.

******************************************************************

Also, a note to everyone in the Seattle area who has direct contact with Zoe:

We need to keep her virus free as much as possible through the next few months while waiting for surgery and the BMT. So, if you are planning on visiting with us or Zoe, please make sure you are not sick or fighting a cold or sniffles.

And, as always, please keep those hands washed :-)

Digesting

So many details to write from both Monday's and today's appointments.

This is the point, however that we are having to be present with:

Best case scenario, Zoe has a 50/50 chance of survival.

Yes, Zoe does have osteopetrosis. The Seattle Cancer Care Alliance doc, Dr. Thomas Manley, said that they used to not rely on blood tests for diagnoses.

Based on the fact that she has all of the symptoms of osteopetrosis, she has a "clinical diagnosis" for it. Also, we found out that her red blood cell count is a bit low, further symptom markers for osteopetrosis: her increasing bone density reduces the bone marrow space and therefore decreases the ability to produce red blood cells.

We now are only waiting to see if the blood test will indicate what type of osteopetrosis she has.

Dr. Manley said that it is quite possible that the results will come back without a definitive answer as to type. In that case, they will work with the experts at MUSC in determining whether what she has can be treated by a bone marrow transplant.

There are types that, although even more rare, cannot. With such a determination, the only possible focus for Zoe would be end of life care.

As Jeff said, leaving the SCCA today-- It feels so strange to hope that she has a diagnosis that will allow for a bone marrow transplant.

Bone marrow transplant.

So, back to the best case scenario. Providing that she has a treatable form of osteopetrosis--then it's on to finding a donor. Neither Jeff nor I can be donors as it increases the likelihood that there will be rejection--we are both, at most, only half matches for her. She has no twin, no sibling that can be tested. The best hope is for an unrelated donor to be a full match. As we are not obscure ethnicities, there is a good likelihood for one to be located.

Many of you have mentioned that you would like to be tested. Thank you.

At this point, they will be searching an already established global database of donors to see if there is a match. When/if a match is found, there needs to be more testing and coordinating and then donating. The entire process takes at least 2 months and up to 3 or 4 months.

We did not bank Zoe's cord blood, but even cord blood is not always the best option either.

The BMT process has us in Children's Hospital for at least 5 weeks--that's if everything goes well, there are no infections, no complications, and no rejection issues.

Zoe has the added stress of needing surgery before the BMT. She will have to heal from that; on the outside, full healing could take up to 2 months. There is more to be told on the surgery topic, but that can wait. Important points are that a date has still not been set and that Dr. Manley intends to add his weight to the message that it needs to happen ASAP.

As I said, the process for finding and lining up a donor takes time anyway, so that has been put in motion today. Both Jeff and I gave blood (they need to look at our typing to help with determining hers) and Zoe's mouth was swabbed. They were going to take her blood there, but I was not happy that they did not have a baby set up. Zoe will have her blood drawn at Children's tomorrow.

To top everything off--I will have to wean Zoe.

Mother's milk is a powerful immunity enhancer, and that's just not a good thing when wiping a baby's immune system out. Talk about punching someone when they're down. She gets so much comfort from nursing.

You mean to tell me she's going to feel like crap from all the chemo they're going to give her, all the poking and prodding they will do to her--and she won't get to nurse??!

I could try weaning her now, but we need to keep her healthy through the surgery and up to the BMT, so nursing until then is good for her immunity. But, it seems like it would be unusually cruel to wean her at the same time her BMT process starts. Can't win either way

So, back to the odds. The doc said, that with the best case scenario of a perfectly matched non-relative donor, success rate is 50%. I suppose that's better than 10%, but in my glassy-eyed state right now, it doesn't comfort me.

She could stay. She could go. 50/50.

oh my sweet Zoe girl. please stay.

Initial Update

Long morning of meetings over with-- quite a bit to assimilate. Will post specifics soon.

We had our dear friends Susanne and Amy with us to take notes and ask the questions we would forget--or not think of. They were the perfect people to have with us: Susanne has a doctorate in Physical Therapy, and Amy is a newly minted Naturopathic Physician.

And boy, did they perform their duties well! Their knowledge of anatomy and medicine kept them on top of the information gathering, while Jeff and I were free to digest the information on an emotional level.

Team Zoe, we called ourselves. So great to experience this day as a team.

Salient points that came out:

• Today dealt specifically with her needed cranial surgery.

• They want her to have surgery as soon as possible, so, as they are booked through the end of October, they will have to bump other surgery patients or cancel a clinic day.

• Her surgery will likely be 8 hours long as they will be also working on widening her optical foramen where the optic nerves go through.

• We are still awaiting the results of the blood test that confirms an osteopetrosis diagnosis.

• We will be still going to Seattle Cancer Care Alliance on Wednesday for the scheduled appointment, regardless of whether the blood test results come back in time.

More details about today will be posted when we get the notes back from Susanne and Amy. Again,so glad to have them there -- because I honestly can't remember much about today. Tilt!

Thanks and Praise

While still waiting for the next big wave of news and activity, I wanted to acknowledge and thank the many people who have brought help and blessings our way:


Martin, Marilyn, Isaac and Torin for the lovely flower arrangement and food,
John H. for feeding us and dropping off treats on our porch,
Gini for coming and giving us regular breaks every week and folding laundry,
Brooke for being our yard doctor powerhouse,
Helen for helping Brooke and making light work with many hands,
Monica and Tony for stopping in and bringing food,
Monica for brainstorming about help organization,
Caron and Joel for flowers and financial brainstorming,
Cat and Eric for the surprise this morning,
Mary and Jeff for the concert tickets to help us blow off steam,
Kim for babysitting,
Caren for picking me up, spending the day with Zoe and I, and helping me strategize,
Bonnie for the chocolate covered strawberry "flower arrangement",
Jens for the family photo session,
Jeff D. for the help with bamboo wrangling help,
Jack for the help with the truck (and lots of BBQ),
Cinny for regular Zoe help,
Heather, Eric and Mia for cooking for us and nurturing us,
Amy for medical advice and pep talks,
John W. for bon bons and sage,
Ed and Charlotte for help with plumbing solutions,
Arturo and Risa for cooking for us and nurturing us,
Jacklen and Andy for babysitting,
Lori for the amazing milagro,
Molly for shopping offers and check-ins,
Jane W. for her occupational therapy work with Zoe--and for doing things for us on her days off,
Wonderland for the Wingbo, Jane, and all their support,
Leslie for opportunities to vent,
Sharleen for babysitting and nurturing,
Wendy for homemade Chinese food and professional advice,
Penelope for financial advice,
Heidi for taking up the slack in our business dealings together.

And--to all of you who have called and emailed and hugged and loved us--and continue to do so. We are so blessed by all the support around us. We are so grateful--and need it all so much.

If I have forgotten to mention anyone--it's a total oversight fueled by frazzled brain and not enough sleep.

We love you all.

Still waiting.

No news, and some news.

Jeff talked to Dr. Cunningham today. As it turns out, the expert we posted about earlier is not the guy that Cunningham wanted to speak with. He went through his records and said that the man to talk to is a Dr. L. Lyndon Key, Jr. who is part of a crack research team specializing in osteopetrosis and osteoclast issues.

Cunningham has not yet spoken with Dr. Key or the team, but plans to in the next day or two. He mentioned that Zoe's pending skull surgery could provide some bone samples for the team, who would likely jump at the chance to study them, and consequently have a vested interest in participating in her treatment.

Again, extremely rare disease.

It's odd to think that Zoe's potential condition is one that would make her more than just a patient--she would be a research subject as well. Whatever gets the job done.

I don't believe we mentioned that Zoe's first consultation with Seattle Cancer Care Alliance is September 10th. They kind of hemmed and hawed when they heard that her diagnosis was not confirmed yet. But, they scheduled it anyway. If the blood test doesn't come back in time the story may change.

The weight of the situation hits us in waves. Many times I will just be stopped in my tracks by a wall of fear and anticipatory grief. I have to work hard not to focus on worst case scenarios.

And, what is up with so many things falling apart right now? Within the last two weeks, aside from the Zoe news, our phone lines got all crossed (Jeff had to spend much time under the house to figure that out), the shower self-destructed (we now can take only baths), the truck broke down in the middle of an intersection (it took some problem solving to figure out the issue--thank goodness my hubby is handy--the part is on the way), the garage door fasteners dissolved (can't open it now), and I have broken out with a mystery rash that has me looking like I have the measles on my upper body (allergic reaction, or hot tub infection?? The doc at least says it's not contagious). It's all hitting us so fast that it's actually become a bit comic.

This is not how we operate! We are not tragedy victims!

And I'd certainly like to think that we don't require the sledgehammer approach to learning whatever lessons we are supposed to be learning right now.

But, evidently, we do.

Okay, I surrender.

Can I please just stop itching?

Altar-ed State

No real news to tell--not much movement over the holiday weekend.

We thought we'd give Dr. Cunningham a day to get back to work after the long weekend before we start pestering him tomorrow about whether he's talked to the osteopetrosis specialist.

In the meantime we set up a little altar for Zoe. Before you start thinking that the skull looks morbid, remember that we are body workers and see the bones as living tissue that serve as our building blocks. As we are hoping for healthy functioning bones for Zoe, the skull seemed particularly appropriate. More has been added since the picture was taken--sage, a little madonna and child, a statue of an earth mother with a little bowl into which a little pebble found the week before I gave birth was placed.

Stuff and superstition? Perhaps. It gives comfort and is a physical representation for our hopes and prayers for her. If anyone wants to send a little something over to place on it, we will happily add it to the mix.