A mix tape! We're gonna need a mix tape!

We might even need two or three.  It's a long drive to Boston.

Yes, Boston.  Bean town.  The Hub.  That's where our little Zelie's adventure is taking us next.

You see, here at home there simply are no spina bifida specialists.   We've been in the the care of several, very competent and compassionate doctors.  We've met more who will be available to us here to help Zelie after she's born.  But while they have the right letters attached to their names and the basic training to manage what needs to be done, none of them specialize in Zelie's condition.  The more we thought about that, the more dissatisfied we became.

The truth is, the first week or two of her life is very crucial.  They will involve serious, complicated neurological surgery on both her spine and her brain.  A doctor who is "qualified" is not the same as one who specializes in and who has many decades of experience with exactly what we are facing.  We, like all parents, want Zelie to have the best start we can possibly provide for her.  What happens to her in those first days will set the tone for the rest of her life.  We feel entitled to be picky!  We also are greatly blessed to have really wonderful insurance that allows us to act on how we feel.  Boston Children's Hospital has the premier pediatric neurosurgeon specializing in spina bifida and the hydrocephalus that typically comes with it. So... its to Boston we go.

We expect to leave around November 8, and stay until she is born and released from the hospital.  Of course, we can't predict when that will be exactly.  We anticipate staying in Boston approximately a month.  Its a big undertaking.  There are a lot of logistics in setting up care for our house here in town as well as for Miss K, who will remain behind.  J will go with us, and so there is care for him that has to be secured and included.  Where to stay, how to get there and back again ... its a lot.  And I don't know if you've noticed, but November 8 is just around the corner.

Yikes!

So, first and foremost, we covet all your prayers and your love as we set out on the road.

Secondly, if you have questions about the trip or the procedures, feel free to ask them in the comments.  I'll do my best to answer them.

Last of all, several of you have asked us what we need for Zelie.  The truth is, as far as baby gear and supplies go, we need nothing.  But this trip, which we view as vital, is going to be a huge expense.  Insurance will cover the worst of it, but won't help with things like travel and lodging.  If you really would like to contribute to Zelie's beginnings you should know that we are going to start a little fund for her.  We very humbly ask you to consider placing your gift in her fund, rather than in a dress or a toy.    I'll have a button on the site before the weekend, to allow you to do that if you feel so inclined.

I have to admit, it is a little scary, but we are all also very excited.  Its good to have made the decision, to have work to do to put it into place and to be able to look at the calendar and see just how close we are at last.

Thank you for all your continued support.  We've simply been amazed and overwhelmed by everyone's generosity.   Know that we are grateful for all of you in our prayers each day.

The Sound of Silence

As I predicted it might be, things have been a bit quiet on here.   That's good!!  We are now at 32 weeks and counting.  We've been twice to the doctor since my last post and things are going along very normally.

Miss Zelie is up to approximately 4 1/2lbs, and continues to grow on track.  The ventricles in her brain have not become any more enlarged over these last few weeks.   That isn't an indicator of things to come, but it is comforting to know that, at least for now, she's not dealing with any increased pressure.  At our last visit she earned herself a "perfect score" on her biophysical profile.   We will be back there next Tuesday to see if she can repeat that performance.

We do have a couple of  possible plan changes in the works, but nothing definite yet.  Once we have some specifics, I'll certainly be posting them here, so don't forget to check back every once in awhile.

In the meantime, we continue to be overwhelmed by, and deeply grateful for, all the love and support that continues to come our way.  Thank you for being with us on this road.