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.