Epilogue

 So, maybe waiting over two years to update the blog is a little extreme, but there you have it. Truthfully, I could have happily continued not updating the blog since most who know us and who are concerned with Zoe’s welfare know that she continues to thrive.  But, occasionally I find that strangers who stumble upon the blog looking to compare notes with their own process of ushering a child, often a child suffering the from the same genetic condition, through a transplant are curious to know what has happened since the last post.

Bottom line: Zoe is doing very well.  She’s a vibrant 4.5 year old with a huge personality. We’re all rather well recovered from that chapter in our lives, but the effects of it will always live with us.  Our focus has gone from managing a child with a life threatening condition, to learning how to usher a child with a disability of blindness, and some other less severe physical disabilities, through life as a well functioning individual.  As such, our lives encompass both the typical experiences of “normal” families (park play times, childish goofiness, tantrums) to the not so typical (the constant education of strangers about Zoe’s blindness, special services, Braille lessons).  We won’t ever really feel like we’re walking a typical path with Zoe, but where we are is so much more in that realm of “normal” than where we’ve been with her. 

That’s the short report.

But, if you want the longer story of how we got from there to where we are now…

 So, the med taper continued until the end of the Summer of 2010 when she was taken off of everything.  Things went along smoothly until sometime December that Fall when it suddenly dawned on me one morning while I was lounging with her that I hadn’t seen her clap with flat hands in quite awhile.

An odd thing to suddenly focus on, but my mind went there, and attempts to get Zoe to straighten her hands and fingers out fully were met with screams of pain.  Her hands were rigidly held in a cupped position. 

It was easy to miss since most people’s hands at rest are naturally cupped, but now that I was noticing it, I was perplexed at how I could have missed it.  Zoe’s hands were almost completely lacking in movement beyond the most basic and limited clutching function.  Further examination by Jeff revealed extremely rigid wrists, hands, feet and ankles, which was strange given the fact that Zoe was still really hypotonic in the rest of her body.

Holy crap.

As any terrified parent would do, I took to the internet with search words such as “joint contractures”, “hypotonicity”, “pediatric”—and I was regaled with all sorts of references to muscular dystrophy. (A reminder to not do medical research for your kid on the web when you’re freaked out—it’ll only mess you up.)

In a panic I contacted Dr. Manley and Dr. Carpenter.  Within days they saw her and confirmed the presence of GVHD.  According to Carpenter, muscle contractures such as hers were a rare form of GVHD, and the fact it was presenting in a child was even more rare, but here we were.

So, back on the immunosuppressants again!   This time, instead of tacrolimus she was put on very low dose of methotrexate.  We were told that while it’s used as a chemotherapy drug in high doses to combat cancer, in low doses it’s effective at treating autoimmune disorders.

To physically combat the contractures she was fitted with braces to wear on her hands at night, and ideally at times throughout the day.  That went over like a lead balloon, as they say.  She’d wake up screaming in the night until we took the things off, and when we tried to put them on during waking hours she’d scream just as hard.  Eventually she’d let us put them on her for novelty’s sake, but she’d want them off pretty quickly.  Made sense since, being blind, her hands were her eyes.  It seemed a cruel twist of fate for the GVHD to mess with her main vehicles of perception.  The braces didn’t last very long.

The contractures in her ankles inhibited her forward progress in gross motor skills development as well.  At almost 3 years of age Zoe could still not walk on her own, stand up by herself without the aid of something to hold onto, nor sit or squat down on the floor without aid.  Stiff ankles made her unsteady, and her blindness seemed to promote a lack of confidence in navigating spaces around her.

Some things were mercifully progressing: she did finally learn to eat by mouth just prior to discovering the GVHD. 

Up until that point, as you might recall, she was an entirely G-tube fed girl.  We made her whole food diet up from scratch every morning in the Vita-mix and fed it to her in measured doses throughout the day.  Every once in awhile we’d try to offer her something to taste, but she’d vehemently refuse it.  She was perfectly happy to be a tube-fed gal.

Earlier that year, my chiropractor mentioned that he had heard from another patient about a program at Seattle Children’s that was specifically designed to put tube-fed kids through an intensive training to get them back on oral feeds.  Apparently this wasn’t an advertised program since it was in high demand. 

Dr. Cunningham confirmed the existence of this sought-after program and referred Zoe.  In November for two weeks we took Zoe Monday through Friday to the Occupational Therapy department to work with Karen Quinn-Shea on eating skills.  Basically, the strategy was to reduce her tube feeds steadily and significantly enough for her to start to experience hunger.  And, while we did that she worked with us and Zoe for two meals and a snack time each day to introduce her to foods.  Basically, the idea was to keep her playing with applesauce, peanut butter, and crackers, and cajoling her to taste them constantly enough until she started to make the connection between consuming food and the satiation of hunger. 

It was an arduous and exhausting process.  Each morning we got there at 7:45 to get Zoe weighed in and then settled in for three eating sessions that were spaced out to take about 1 to 1.5 hours each session.  There wasn’t enough time between each session to really go anywhere, so we usually hung out in the play room at the hospital, and spent nap time in the chapel (quietest place I could find there).  Our daily sessions ended at 2pm, but we were expected to continued the routine at home for another snack time and dinner, all the while following the prescribed taper on her tube feeds.

By the end of the two weeks, Zoe was down from five tube feedings a day to only one, plus boluses of water throughout the day.  She ate the rest of her food by mouth, but it was difficult to watch her diet go from a richly balanced and supremely healthy whole food concoction we made for her daily in the Vitamix, to one that consisted of crackers, peanut butter, and maybe a little applesauce.  And now, instead of her meals taking about a minute to squirt into her G-tube, we were now spending over an hour five times a day trying to get her to eat.  I’m sure I don’t have much sympathy from anyone who’s been the parent of a young fussy eater, but this was weird new territory for us.

For the next year Zoe only ate food on crackers.  We expanded her diet to include squash, ricotta and bananas.  All tube feeds and water boluses were eventually stopped.  At the age of 3.5, a year ago, Zoe finally learned how to eat with a spoon.  Her diet is still limited compared to other kids her age, but she eats healthy Indian food that we make for her and eschews anything sweet, so I’m not really concerned about it.  She’s been completely off of food and water boluses through the G tube for a year now, and in April of this year—three months after we used the G tube for the last time for meds—she had it removed.

Zoe is still delayed in her gross motor skills abilities.  She’s coming along, but she only just a year ago—at 3.5 years of age—learned how to walk unassisted.  In addition to the feeding program, we were lucky enough to get PT for her through Seattle Children’s, and after a few weeks she finally felt confident enough to walk without assistance.  Months later we took advantage of PT yet again to teach Zoe how to stand up and sit down without holding onto anything.

I would say that at 4.5 she is still not a very confident walker.  Around the house she is most comfortable stepping out, but outside and in unfamiliar places she really insists on holding someone’s hand. 

She also does not have very good stamina.  She doesn’t run around like other kids do, as though they have limitless reserves; she prefers to sit on the couch or move within a rather limited and low key scope.  It’s hard to say whether it’s due to lowered energy from her medical history, or whether it’s from a self perpetuating cycle of lack of movement resulting in lack of stamina for movement.  We really are working on getting her to move more and more, but it’s somewhat of an excruciating endeavor.  We try to force her to walk longer and longer distances, but once she decides she’s done walking, it becomes an exercise in trying to get her not to scream so loudly that the surrounding neighborhood thinks I’m attempting to murder her.  She’s got a strong will, that one.

But!  I don’t want to paint a picture of a languid, listless girl, far from it.  She sings and talks non-stop, she plays her keyboard and makes up music and songs.  She loves to dance, and her new obsession is doing a conga line with Daddy or Mama around the living room (so, really, if I were willing to dance a conga line for hours on end, I might actually get her to exercise without any whining.)

Okay, back to the GVHD.

Zoe was on the methotrexate for just over year.  During that entire time, and for six weeks beyond it she was also on a broad spectrum antibiotic called Bactrim to protect her immunosuppressed system from getting pneumonia.  Her hands and feet gradually loosened up a bit, and when Carpenter was completely satisfied that the GVHD was not progressing and was in fact retreating, he took her off the drugs at the beginning of 2012.  So far no return of GVHD.

I wouldn’t say that her hands and feet are back to normal.  Her ankles can articulate a little more than a year ago, but they are still quite stiff.  Fortunately walking doesn’t really require full range of movement in the ankles.  If we ask her to stand on her tippy toes, she can only raise her heels about an inch or so off the ground.

The hands can straighten out completely now and feel loose in finger extension, but she really can’t close her hands into a fist hardly at all.  The fingers do not articulate at all at the joint that joins them with the hand, and her wrists do not flex forward, nor really do they extend backwards significantly.  When she wants to put her hand down to support her weight, the form is very much akin to a knuckle-walking primate.

And, as bad as this may sound, it’s so much better than it was!  We have been in the path of blessings in many ways throughout this process, and no less so in the treatment of this contracture issue.  Months ago we were made aware of an amazingly talented Rolfer (a person that does Rolfing, a specialized type of deep tissue massage) in town that does nerve release and mobilization.  When we contacted him about working on Zoe, he offered to work on her for free based on her age and situation.  The ongoing work he’s done on her has made all the difference in her mobility.  And, Zoe loves to see him.  She protested vociferously the first couple sessions, but now she receives it like a trooper and even looks forward to it.  Without his work so generously given she would not have nearly the range of motion recovered that she does.

We take her to a park most days to work on gross motor and play skills with her.  I’m trying to teach her how to “pump” on the swing, which is a challenge on a couple fronts:  her limited hands make it difficult to hold the chain tightly enough to support her weight, and it’s actually quite difficult to describe to a young blind kid the mechanics of pumping!  I obviously can’t model it for her, so I’m left with description and touching.  When the swing is moving in a limited fashion I can put her legs in the proper form, but incorporating the necessary leaning into the mix is challenging.  Instructions to “lean backwards while kicking and traveling forward” translates into some interesting moves on her part that are not really close to accomplishing what I’m describing, but she gets definite props for the gusto-filled attempts.

I left the blog in a bit of a cliffhanger state as far as what I learned from Zoe’s donor Elizabeth.  As I stated in the previous post, we established contact and exchanged several emails filling in the gaps for each other.

You may remember from a much older post that we had hoped for bone marrow in Zoe’s transplant, but were told that the donor was only willing to give stem cells.  I believe I indicated in that post that the doctors and donation coordinator on our side even reiterated to coordinators on the donor side that we really preferred bone marrow over stem cells, only to be told yet again that “absolutely not—the donor is only willing to give stem cells.”  It was a difficult experience at that time, but as you may also recall, stem cells ended up being a more perfect transplant source than marrow due its faster engraftment time.

When Elizabeth and I began emailing, I sent her the link to my blog along with a heads up about that particular topic and that, while I was voicing frustration at the time in the blog, I really was very grateful that things went exactly as they did.

Elizabeth’s response was very interesting: she said that her donation center told her that stem cell donation was the only option.  She told me, and I absolutely believe her, that she absolutely would have been happy to donate bone marrow as she was so thrilled to be called up to donate to someone in need.  The donation center she lived near was not set up for surgery.  She could have donated at a hospital near by, but was not told that this was an option.  Based on what she told me and what I told her, we both came to the unhappy conclusion that possibly her donation center was motivated by a drive for money and the need to keep her as a patient more than they were motivated by the desire to do the right thing.

It was a shock to us all to learn this bigger picture, and for awhile there we thought to take that donation center to task, but as everything had turned out so well, we dropped it.  The battle had already long been won; no need to seek out another war.

It was just so lovely to learn more about this amazing woman whose cells saved Zoe’s life.  I got permission from her to quote from an email she sent me, because I just love this story she told:

I lost my mom to cancer almost fourteen years ago.  (It was nothing to do with blood or heredity, so please don't worry.  It was adenocarcinoma of the lung caused by radon in the house and exacerbated by smoking in her teens through mid-thirties).  She was a huge part of my life and we were blessed to be able to share an incredible relationship.

Until she died, I thought little of spirituality.  I was twenty-seven, so really I thought little about death, loss, karma, etc.  But, after losing her, my eyes were open to possibility and I came to know in my heart that there is so much more to life than we can see.  

Through what seemed like coincidence, I met mediums who told me about my life and my mom's journey in rich detail that could not be fabricated. In all these cases, with at least three different mediums, a female spirit, a soul described as "special", "beautiful", "unique", "angelic" kept coming into their readings about my life.  

Now at this time, I had my two older boys and I wanted another child.  So, of course, I just KNEW that my third was going to be this special soul.  I had no doubt!  So when my amniocentesis said that I was going to be the mother of three boys, I doubted the results.  My husband, not as spiritual as me at the time, laughed and said, "I can't believe you doubt the doctors and trust the psychic!!!"  Ok, he had a point....

So then I raged at the medium.  "How can you lie?" I asked one. She said, "I am sorry if you are disappointed, but I still see a special female spirit.  Maybe you will have a fourth child."  When I assured her that was not an option.  She said, "Weirder things have happened".

Then, as I would meet other mediums, this "angelic", "special" spirit would continue to appear in readings.  I knew I was thrilled with my family.  I knew I was done having children.  Who was this spirit? Who was she to me?

Well, in the fall of 2008 when I was told I was a "perfect" match for a baby.  I looked and Daren and said, "it's the angel from the readings" (he rolled his eyes).  When we went to the meeting and they told me she was a girl, Daren stopped rolling his eyes.  He also knew that, no matter what, I was giving whatever I could give to this child.  Surgery, bone marrow, anything!  (I still would, by the way....)

Now, being the impatient person that I am, I could not wait a year to find out how "baby girl" was doing.  So, even though I no longer need to go to mediums to feel my mom's presence in the world and in my life, I went to my friend Galit.  She did not know about the donation.  Now, Galit is gifted but she is also newer at being open to her gift.  Unlike someone experienced who understands all of the symbols she is given, Galit sometimes doesn't understand the more abstract.  I went to her house for a reading simply to hear about Zoe and her progress.  

She asked me, "Which one of your sisters has a baby girl?"

 

None.  

"Who is this baby that you are connected to in your family?"

No baby girl.  

She kept insisting that someone close to me, in my life, had a baby or was "getting" a baby and this baby would be connected to me. This went on for two hours.  This baby girl image kept popping into our conversation.  I had no idea what she was talking about (in hindsight this seems daft) and frankly I was annoyed...

I said..."Galit, how is the baby doing, the one who received my stem cells?"

Galit just started to laugh...she kept seeing a baby girl whom I was connected to "like an adoption".  She had no idea what it meant or how to describe it.  

How can one describe a connection like we share?  

Then, she told me the news: "It will be a difficult year, but she is going to be fine!"  What a wonderful relief!

"Will I know her?" I asked.  

And then she said what you have solidified, "She will be a part of your life."  

Kellie, I couldn't be happier or more honored to be even a little part of Zoe's journey.  And, I have been told by many that it will be an incredible life.  She is special...but you know that already!

I really do know it.  It’s interesting to watch how people respond to Zoe who meet her for the first time.  She interacts with the world around her differently, and I think it causes people to step out of whatever auto-pilot they’ve developed around interactions with children, or even with any sort of typical person.  A friend with a bit of a psychic gift herself once told me that Zoe would help people learn to "really see”.  And, watching how people interact with her, how they become truly present and joyful in her presence, I can see how this might be true.

So, I think that’s about it for now.  I may update this blog again, but for now it’s at a better stopping place than where I left it a couple years ago.

Just a blurb about where Jeff and I are currently: we’re doing great.  We’ve continued with our daily yoga and meditation practice we learned three years ago that was so instrumental in pulling us out of our PTSD from the experience with Zoe.  It’s given both of us more of an experience of flexibility and resilience in every aspect of our lives. As such, I’ve actually been working on a career change in the last year and a half by taking math and science prerequisites for a Nurse Practitioner program I hope to be accepted into next June.  I’m also having fun learning to play the ukelele :-) 

When not doing all the wonderful things he does to support me in my schooling endeavors, Jeff has been keeping his mind and creativity active by becoming an impressively good blues and jazz piano player for someone who started in middle age, and by pursuing the crafting of the perfect ultralight alcohol burning camp stove. What a husband and daddy.  How did I get so lucky?

So, Life goes on.

What a crazy ride. 

Zoe's Donor

Meet Elizabeth and her sweet family! She and I have been having quite a correspondence--some interesting things have come up.

More about that soon.

And now, a word from our donor!

Dear ones~

It's been long since I've posted but, as I've said before--no news is great news. Zoe is just an amazing and thriving little light.

I sent her donor a thank you card about a month or so ago-- I wasn't allowed to provide any specific details about ourselves, including names and where we live. The marrow donation system requires anonymity until a year after the transplant, and then consent forms must be filled out indicating what information would be okay to share.

Here's my thank you note:

Dear Donor~

Across from me is a darling, vibrant, healthy, spirited, and very much alive little two year old. She is our only child-- and she is here today because you cared enough to sign up for the bone marrow registry and make your very cells available to save her.

How many people do you know who can say that they know they have personally saved a life?

Well, you can because you did.

My husband and I are so grateful to you and for you. Thank you, thank you. The words don't express the depth of our gratitude, but know that the sentiment is there.

Bless you!

Signed,
Very Grateful Parents

PS. We are sending in a form stating that we would be willing to let you know more about our daughter should you like to know more about the little person whose life you saved. Namaste!

Not 30 minutes ago I received a lovely, sob inducing email from our donor, who lives in Florida. I will post the picture of her and her family she sent me if she gives me permission to do so:

Dear Kellie and Zoe,

I received your email today and could not wait to respond to your beautiful letter. Your kind words and thrilling news of Zoe's health brought tears to my eyes (numerous times) and to everyone here in Florida. We have all been praying for and sending healing thoughts to Zoe since last January.

When I found out a year ago December that I was lucky enough to be a perfect match and possibly save someone's life I felt like I was given a gift. Your letter was another gift that I will treasure.

My boys and I love to watch the television program Extreme Makeover, Home Edition. Over tears, we talk of how lucky Ty and his crew are to be able to help families improve the quality of their lives by giving them safe homes, paying their bills, sending kids to college, etc. On the day that we found out that I was going to be able to donate my marrow to help Zoe, my middle son, Dustin, looked at me and said, "now you get to be "Ty Peddington" too". And with your news, I did feel a bit like Ty. Honored, and ecstatic, that I was able to help improve the quality of your family's life.

Kellie, I can't imagine the heartache you have all gone through over the past two years. You must be savoring everyday. I bet there will be no "terrible two's" in your home.

I don't believe in coincidences, so I find it interesting that you are from Seattle. I was born in Bellevue (many years ago) and my dearest friend is a pediatric cardiologist at Children's Hospital and at the University out there. Coincidentally, she had her first daughter about two weeks after Zoe had her bone marrow transplant and I was out visiting her last March.

Thank you so much for sending me the update of Zoe's health. It means the world to me.

Namaste,

Elizabeth

P.S. I have attached a picture of my family: my husband, Daren, and boys Jonah (13), Dustin (11) and Trey (7).

Wowie, wow. Ain't that just a jolt of joy for your day? It certainly is for mine.

Odds and Ends

Man, amazing how easy it is to get out of the habit of blogging. To think that I did it every night for months...

So, we did take Zoe in for her one-year-post-transplant meeting, and it was full of hopeful news. Prior to the meeting she had to have a major blood panel run, an x-ray to survey her bones and a dental exam.

The x-ray showed that her bones were no longer the characteristically too-thick bones of an osteopetrotic child, but rather that they were now on the thin side. There was now plenty of bone marrow space; the thinness was a result of prolonged steroid use for the treatment of GVHD.

Blood counts were all normal save for elevated eosinophils,a possible indicator of the presence of chronic GVHD. Of interesting note, her lymphocyte levels are completely normal for her age, which is pretty well unheard of for someone this point past a bone marrow transplant.

Given all of the test results, Dr. Carpenter decided that it's time to wean Zoe off the steroids and Tacrolimus (the major anti-GVHD drug) to see how she does. She's been completely off of the steroid for her gut since a week after the meeting and starts the Tacrolimus taper tomorrow. If she has a flare-up of GVHD as a result of the taper then they'll likely put her back on Tacrolimus as well giving her a brief burst of prednisone to deal with the flare-up.

Hopefully it won't come to that, but I have to constantly remind myself that GVHD is highly likely in Zoe's case due to her having a stem cell transplant (which comes with a high rate of GVHD--especially when from an unrelated donor).

But. I don't need to borrow trouble.

The super great news was that Zoe was given the all clear to go out in public and interact with the world! This has been such a great new experience for us all. To be sure she is still immunocompromised (due to the Tacrolimus), but the SCCA folks find that when the critical year of isolation after transplant is accomplished, it's more important for the person to be socialized and integrated into a more normal life than for them to be protected from all germs. Certainly we are to still keep her away from sick people if possible and continue to practice good hand washing practices while dealing with her.

I took her back to her PEPS group for the first time since we quit it almost 2 years ago now. What a trip. Zoe spent much of the evening fretting with her fingers in her ears as it was louder, with two-year-olds yammering and parents talking over them, than she was accustomed to experiencing. It's going to be a bit of work to push her comfort envelope to include more chaos and cacophony.

Among the new stuff she has been enjoying has been our sojourns to places where she can cruise around in the gait trainer that we've been borrowing for her. As she doesn't yet walk, the gait trainer gives her the ability to experience walking while being supported. She cruises around the park or the gym (depending where I take her) and pauses to do a little happy dance, stomping her feet and bouncing up and down.

The girl knows how to attract attention.

We try to take her out for physical activity like this every day; gradually our parental experience widens as her horizons broaden. Just as Zoe is delayed in many skills and abilities for her age, I feel like a remedial parent who is trying to figure out what to do with a 2 year old who is now allowed to go out into the world.

How, exactly, does one do this??

Zoe has two new obsessions (crackers, alas, have fallen by the wayside): chairs and the piano.

"Chair!" "Chayuh!" "Chaaaaaayuh!" She loves to be sat into one--especially with arms. I took her to a story telling evening for kids at the local library a couple weeks past, and she spent the entire time she was there saying "chair!" over and over again while she sat and seat-danced in the one she was sitting.

The piano is another love for her. While I or Jeff sit at the piano she sits on our laps and moves our hands like a puppeteer, providing the rhythm for the songs she knows while we supply the melody. Lately we've been sitting her to the side of us at the keyboard in her high chair and doing duets with her. She plunks away happily at the upper keys while one of us noodles at the lower keys--and it all sounds surprisingly nice. 'Course, we've got the biased ears of doting parents, but as we're not trying to sell tickets I think that's alright.


Check the Youtube link for more additions in the coming days--you'll get to see the duet above in action.

Day +365

It's been a year to the day since Zoe's transplant.

She's doing great, so great--but you've probably gotten that general idea from the last several, though infrequent posts.

Next week we go to SCCA on Monday and Wednesday for check-ups and conferences that constitute her one year anniversary check-in. Last time we saw Dr. Carpenter it sounded like he'd be starting her tacrolimus (anti-GVHD medication) taper at this one year mark. We'll have more news on that, as well as on other "next steps"after next week.

As I am short on time for words, here are a couple videos that show how far our little Z.E.N. girl has come. The first is of her taken one day before transplant. It was hard for me to watch again--she's so doped up and weak in the vid, but it shows her spirit shining through.

The second one was taken of Zoe just today.

Enjoy.

Happy 2nd Birthday, Zoe!!

We thought it only fitting her special cake would be made of crackers.

Piercing the Darkness: Developments in Optic Nerve Regeneration research

Today we leave the gathering darkness behind and welcome the return of the Light:

Happy Solstice, Beloveds!

Zoe is blind, that we know, and at any other time prior to this point it would be safe to say that she would be blind for life. But with technology and scientific advances happening almost as fast as they can imagine it, there is a chance that Zoe may get to see some day.

I had heard of people traveling to China to receive stem cell therapy for optic nerve regeneration, but not only are the treatments prohibitively expensive (at least $20K per treatment, and they recommend multiple treatments), but the results they have are limited. It all seems a bit too experimental and unregulated to me to even consider considering it.

Closer to home I discovered the Schepens Eye Research Institute online and made use of their "patient liaison", Richard Godfrey, to get educated on what they know about developments in optic nerve regeneration. The following is some text extracted from literature he sent me.

Regenerative Research:

As our knowledge of stem cells has expanded, so has the breadth of our research. A few short years ago, all the focus was on embryonic stem cells and research was limited by the ethical issues and related federal funding ban. Since then, we also have access to progenitor cells, adult stem cells that also have great potential without some of the limiting factors of embryonic stem cells mentioned above. Now, we have discovered that the human body has already existing, dormant stem cells in the central nervous system (CNS) which includes the spinal cord, brain, optic nerve and retina. With both embryonic stem cells and adult stem cells, additional research needs to be done to both develop consistent sources of stem cells and develop a surgical or other stem cell delivery technique. This new approach of activating already existing, dormant stem cells may eliminate the need for these added steps. In addition to knowing that these cells exist, we also now know the molecules that are responsible for that dormancy and we have identified the drug that can activate them. This drug then is likely to become the foundation of a new drug that will both activate and coax these cells to become the kind of cells needed in our goal to restore vision.

In optic nerve regeneration, we know that there are three barriers against regeneration we need to overcome in order to develop a therapy. We already know that the original drug will overcome the first barrier (dormancy) and the second barrier (scar), but the third barrier still must be overcome. This barrier comes from the proteins of the myelin (sheath covering the optic nerve) that send signals preventing regrowth. So the goal is, using the original drug as a foundation, build a new drug to overcome all the barriers safely and reliably.

At the Schepens Eye Research Institute, an affiliate of Harvard Medical School located in Boston, our regenerative center, The Ocular Regeneration Research Center, is made up of 3 separate laboratory teams exploring the great potential of stem cell and gene therapy technologies. The goal of all the labs is the repair/regeneration of the retina and optic nerve. Both are made up of nerve cells, which share the same barriers to regeneration that we are working to overcome. The real strength of Schepens' regenerative research is these 3 labs, 3 research teams, with varied approaches, working collaboratively, are making the idea of vision a reality in coming years. It is a very powerful combination.

Some of the group's individual accomplishments include:

• Dr.Feng Chen's first ever regeneration of the optic nerve in mice

• Dr. Michael Young's years of transplanting brain and retinal stems cells into mice and pigs in preparation for the next step, human retinal damage repair/regeneration

• Dr. Kameran Lashkari's novel, new discovery of adult progenitor cells from the retinas of premature babies that seem to migrate to damaged optic nerve and retina

• Dr. Chen's discovery of the mechanism to reawaken already existing, dormant stem cells in the retina, optic nerve and brain

• Dr. Young's discovery of the molecule in stem cells that is the key to integrating transplanted nerve cells into damaged tissue.

Well, that all sounds promising, eh? But it's not only optic nerve regeneration that might allow Zoe to see in the future. Technology may light up the darkness for her.

The Brainport Device is an amazing doo-dad in development that allows blind people to actually experience vision in the brain via the nerves on the tongue.

Say what?

The article (linked above) can explain the workings of the device better than I can, but remember that it's not really the eyes that see, it's the brain that sees--the eyes just give it the information it needs to experience vision. The Brainport device simply gives the brain the information it needs through different nerves. It's all very heady stuff, but I am just so impressed with the brain that thought of this whole concept in the first place.

For those of you who'd like to see the unit in action, check this video out:



(And, speaking of videos--check the YouTube link for about five recent video uploads of Zoe stuff.)

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On the home front, we're still all doing really well--so nice to be redundant on that subject!

We took Zoe in for a year-post-surgery-check-up with Michael Cunningham (always a pleasure to see him), and he was well satisfied with Zoe's progress. Recent CT scans showed definite signs of bone remodeling in her skull, as well as a gradual evening out of her bumpy-headed appearance. He felt like we shouldn't even consider the idea of a follow up surgery until Zoe's about 5 years old (as opposed to the usual 3 years of age for most craniosynostosis patients); he just felt like she's been through too much already and that another procedure so soon could 'break her".

We're fine with that approach.

Zoe also had a check-in with her transplant team at SCCA with accolades on that front as well. The extensive labs they drew showed that she "has an immune system" and that it is more robust than most patients this soon after transplant. To be sure, we still have to take care not to expose her to sickness as she is immunocompromised compared to the average person, but good news nonetheless!

Zoe is thriving on the whole food purees we are feeding her fresh from the Vitamix through her G tube. Although certain to be filed under "To Much Information", her poops are finally normal for the first time in a year, making it lovely for her not to have to suffer awful, chronic diaper rash (and for us not to have to deal with diarrhea all day long). Although concocted to meet supposedly all of her nutritional needs, the formula she was on for 9 months simply wasn't agreeing with her as much as this whole food mix we're making. Go figure.

Though she's entirely tube fed, Zoe's recently discovered that she absolutely LOVES crackers. Not to eat, but to suck and lick and taste. Her official first word is "Keh-Keh" (cracker) and she asks for them all the time. I mean, incessantly. First thing when she wakes up (at 5am) in the morning, and pretty much all day until she goes to bed. Crackers have supplanted the brief mommy obsession she had--which is both a relief and a "Hey.....! Really...?"


Really.

Jeff and I are good, so good. To be sure we're dealing a bit with cabin fever, but that's a sickness we are happy to manage. I'm back to learning Braille after a long hiatus; Jeff's teaching himself Beatles tunes on the piano. This Christmas is very low-key--no presents, no decorations, no fuss. We will spend time with family both from in and out of town, so the gathering of the Newton-Cormey-Rapp-Nielsen-Bell-Connor clans will be a good (and loud) time.

Zoe will add to it with her screams no doubt--she's been perfecting them and I'm looking forward to showing them off. Oh, and her cuteness, of course.

Abundant Gratitude

Wow. Here it is. The most meaningful Thanksgiving of my life thus far. My heart bursts with gratitude that this hell we have toured, this valley of shadow we've traversed has opened up to such a glorious mountain top.

Our girl lives! She thrives.

I'm grateful, so grateful.

Thank you for sharing this journey with us, for sending comforting and supportive emails and comments, for lifting us up, for visiting, for holding us as we cried, for rallying the troops, for bringing food, for grocery shopping, for sending money, for encouraging me to write when I've been silent---thank you for loving us.

I'm grateful for my rock of a husband who is the strongest man I know. Ever present, ever nurturing. What a lucky, lucky woman I am.

I'm grateful for SCCA, for Seattle Children's Hospital and all of the wonderful people who work there, for transplant technology, for modern medicine, for living in Seattle where we had access to world class health care, for chemotherapy (and I NEVER thought I'd say that), for very, very smart people.

And mostly, I am grateful, so deeply thankful for an anonymous woman who gave of her very genetic substance to an unknown baby girl in the knowledge that she could possibly save a life.

I'm grateful for her social conscience that had her sign up for the registry, for her sense of responsibility that had her step forward when identified as a match, and for her tenacity to follow through with a procedure that wasn't very pleasant--all in the spirit of possibly being able to make a difference.

My heart catches every time I think of it; the magnitude of her gift is so overwhelming.


Yippee! This crazy existence we call Life is such a ride--and it is far from over yet. But at this scenic overlook we've paused at to catch our breath and stretch our legs it's looking pretty damn gorgeous.

E ticket rides don't have nothin' on this.

Not GVHD!

Doctor check-in today gave us the good news that Zoe's rash was not GVHD. Its responsiveness (even though it took several days) to the Benadryl indicates that the rash was likely a delayed reaction to something--some medication probably--having to do with her G Tube surgery.

Hoo-ray!

Also in the Good News Department, Zoe's liver enzymes were normal for the first time since her transplant.

Yay!

She fell asleep on the couch tonight at 5pm, which means she'll likely be up at 3am.

Boo!

But I'm not the one who is on Zoe duty tomorrow morning--

Yipee! :-)




Look, Ma-- No Tube!

Rash?

Haven't posted an update about the rash because I don't really know what to say about it. It's diminished some--actually more than some, but she still scratches herself quite a bit. We'll know more on Wednesday when we go in for her regularly scheduled check-up.

Other than that, Zoe's doing well and pretty well recovered from the surgery. Tonight was a two barfer, so the bedding and jammies had to be changed twice, but in general it seems like maybe she's barfing less than with the NG tube.

I learned that Vita-Mix will sell discounted demo models (lightly used motor, new pitcher, full seven year warranty) to people with medical conditions that would benefit from the use of their blenders. G Tubes definitely apply.

Keep forgetting to take pictures of her without all the nasty tape on her face now that the NG tube's gone--will post some as soon as I coordinate memory with camera and kid. It's a challenging proposition as my brain just doesn't seem to want to do higher functioning these days.

In related news....what was I saying?

Back home

Zoe was discharged yesterday from the hospital--everything seemed to be back to normal with her.

This morning I arose at 5am to find an itchy red rash covering much of Zoe's torso.

Could this be it? The appearance of the dreaded GVHD?
(cue the villain entry theme)
Dum, da-dum, dum!

A visit to the doc today for labs and a skin scan. Manley (today's attending) thought that the skin rash did look similar to GVHD, but wanted to rule out a delayed reaction to the antibiotics administered during the G Tube placement surgery. He had us dose her with Benadryl with the intent of seeing if any improvement might happen. Marked improvement would mean the rash was likely not GVHD based.

So, there was some improvement over the next few hours, but some rash still remains. We check in with Manley tomorrow to find out whether her tacrolimus (immunosuppresent/anti-GVHD drug) levels are therapeutic and to discuss the state of her rash.

It's quite possible that, if it is GVHD, it was triggered by the inflammation response she had to the surgery. The fever she had was the first one she's gotten since her transplant. It very well may have gotten her new T cells hot and bothered and on a tear to attack. This is how GVHD can get going--and why they want us to keep Zoe from getting sick for at least the first year after transplant; her new T cells, when activated by inflammation or viruses, can get confused as to what is the enemy and decide that Zoe (or her skin, or liver, or GI tract, or any and all of it) must be attacked.

It must not be a common reaction to G Tube placement surgery, or else I'm sure they would have mentioned it.

If they determine it to be GVHD then Zoe would be put on a course of prednisone for treatment.

Ugh. Steroids. "Roid" rage. Weeee! Here we go again

--or, maybe not. We may not know for certain for a few more days.....but I tend to like to prepare myself.

By the way...

Finally posted a recent video of Zoe--check the YouTube link for a shot of Cute!

G Tube Placement

Zoe went in on Monday for her G Tube placement surgery. The procedure took only 15 minutes, but recovery is still ongoing.

We were only supposed to stay one night in the hospital with her, but due to her stronger-than-usual reaction she's there for a second night tonight.

She spiked a fever and had bad enough pain that oxycodone and Tylenol did not cut it for her; only morphine seemed to do anything. Her gut function appeared to just halt for a good 24 hours after the procedure in reaction, which made getting her back to her formula feeds impossible for longer than expected.

This all said, she's doing well.

Imaging showed that her G Tube was placed correctly and that the inside of her stomach looks pink and healthy. Tonight is my night to stay home--and Jeff just called to tell me that our energetic and happy girl has made a reappearance. Guts finally seem to be moving, meaning they can go forward with getting her back on her feed schedule.

Had a little feeling that it wasn't going to be quite as smooth as they said it would be. Zoe's just living up to her namesake and continuing to keep us in the here and now.

Blessed tyke.

General Update

Wow. Lookie at that--no posts for two months! As I've mentioned before, no posts undoubtedly mean good news maintains in ZENland. Of course there's plenty to talk about, but the longer I go without posting about it, the more I have to write, and then the less I'm motivated to blog it all out. Enough of you have sent me interweb pant kicks, so I guess I have to put down those bon-bons, roll off the couch, and get to work...

A month ago we took Zoe in for her 6 month check-up post-shunt placement for a CT scan to see how her brain was doing. Every CT image since her transplant has shown an alarmingly large right ventricle--even up to 3 months after the shunt was placed.

This time the CT revealed a very slimmed-down right ventricle to the relief of all. It got me wondering about the brain and developmental movement as it relates to Zoe's experience.

As you know, Zoe is quite delayed in her gross motor skills ability. At 21 months of age she is not yet crawling when most of her peers are accomplished runners, climbers and tumblers. When placed on the floor, for the longest time she would only lie mostly still, on her back, with her movements limited to kicking.

In the month leading up to the CT scan it seemed that all of the sudden Zoe was motivated to do more than just lie and kick. She started to get up on hands and knees for moments at a time, push her self backwards with her hands while on her stomach, and scoot herself forward with her legs while on her back.

With the news of her ventricle shrinking down to almost normal size I wondered if it correlated with Zoe's increased motor activity. The study of developmental movement in babies has shown connection between certain physical movements and the stimulation of brain development in infants. Did Zoe's increased activity help to heal her brain, or did the shrinking of her ventricle help promote her gross motor skills? Hard to say, but it's an interesting question.

As such, she's still just on the cusp of crawling. It's clear that she's muscularly not as strong as her compatriots, as she can only sustain weight on her arms in the crawl position for a few seconds at a time. She keeps trying though. Maybe by her second birthday she'll finally be a crawler. Then I suppose we really will have to baby-proof our house for the first time. Such a novelty!

Plans are in place to remove Zoe's NG tube and place a G tube directly through the abdominal wall into the stomach. We had a satisfying experience when Zoe had to go in for a torso X-Ray in the pre-G tube placement exam. The doc who came in to read her films looked a bit confused and asked, "What is your daughter's condition??" Jeff replied, "Osteopetrosis." The doctor said with further confusion, "But her bones look fine!" A light came on and he continued, "Ah! But she had a bone marrow transplant!"

Guess we know for certain now that it worked :-)

So the G tube gets placed this next Monday, October 26th. It will be a minimally invasive surgery that will require Zoe to stay only one night in the hospital. She'll overnight in the oncology unit where she resided during her BMT -- a precaution taken due to the fact that she is still immunocompromised. Apparently Seattle Children's is currently crawling with kids with H1N1 already, so I'm happy for the immunity-friendly accomodations. Also, it will feel like old home week getting to see all of our favorite nurses again (and yes, even some of the overly-perky ones).

Despite her delays, Zoe is doing her best to be a properly mischievous almost two year old. She's teething currently, so finds it endlessly entertaining to try and use my fingers as teething tools. When she manages to catch me unawares and bite me HARD, my yelp of pain only makes her chortle delightedly and try even harder to lead my fingers to her mouth. I've told her many times that she should bite her own fingers; she's game, but not quite as entertained by that prospect.

She's a dedicated escape artist; we've started to call her Zodini. She takes her right arm out of every outfit we put her in and shoots it out of the neck hole so that she sports the currently fashionable one shouldered look. Any pants that we put on her promptly come off (even the ones we put on her under the onsies eventually get taken off), and those that she can't take off soon have both of her legs in one pant leg, leaving her flopping her conjoined limbs like a little mermaid.

She would have us play her special Zoe music over the stereo all day long if we could stand it. I am chagrined to say that she's as opinionated about music as I am--anything that is not "her" music is marked by wails of protest. Introducing new songs to her is a process --but I'm determined because I have just about had it up to here with "Baby Beluga".

Zoe's been on a jaunt for the last couple months where she's decided that 3- 3:30 AM is a perfect time for getting up. Believe me, we've tried letting her stay in her crib, but an hour of her kicking the headboard and bellowing loudly just on the other side of the wall from us convinces us eventually that there's no going back to sleep. So, we've gotten into a routine of taking turns doing the early shift (the one who has to work the coming day gets to sleep in). On my mornings I take her to the living room, put her in her little room with plenty of toys, turn on her music, and doze fitfully on the couch. I think that's pretty much what Jeff does on his mornings too, but I've never gotten up to check.

Zoe's starting to show signs that she's cycling out of that monstrous phase--she's been waking up a little later: 5am two days ago, 6am yesterday, 4am today (my day to get up--dang!).

As for Jeff and I, I have to say that we are doing and feeling so much better. It's been quite a radical shift, actually. We've been exercising vigorously on an average of 5 days a week for the last 4 months. In addition to that we took a yoga/meditation class about a month ago that taught us a practice we are doing twice a day now. The class was just what we needed to help lift us out of our rut of feeling victimized by what we've been through with Zoe, and has given us a practice which helps us to center ourselves on a regular basis. I highly recommend the class to those of you drawn to this sort of thing--it's offered around the world in different cities, is not religion-based --and will inject some serious juice in your life.

We are getting ready to hunker down for the upcoming cold and flu season. My cousin Caren just called me today to tell me that 15% of her son's school is out with what looks like H1N1. It's not a virus that is looking as dangerous as they feared, but it's seriously unfriendly to young children, especially immunocompromised ones. This may be a long, lonely winter of Netflix and internet surfing for our little family as we try to avoid any of us getting sick.

Wish us luck.

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.
---------------------------------------

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.
----------------------------------------------------------

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.