Wednesday, December 17, 2008

Boston and Blessings

The trip to Boston went well. Yep, Esra made it to the MRI! Oh, frabjous day! Calloo! Callay! They did diagnose her with Chiari (KEY-ar-ee) Malformation, Type II. We could only assume she had this condition, since many children with Spina Bifida do. But we needed the imagery to confirm it. The Neurosurgery Attending didn't feel that she needs surgical intervention now, but he said he wanted a second opinion from his colleague who oversees the Spina Bifida clinic. We'll be going back for clinic (and ENT, Pulmonology and, possibly G.I.) in February. Anyone want to come?

So, we decided to do things a bit differently this trip: we took the train and I played tourist, briefly. The girls were fantastic travel companions.






We traveled very light, only taking a suit case and the Phil and Ted stroller. We didn't even bring Esra's wheelchair.

It all worked...While Esra slept off the anesthesia in the ICU, Estelle and I explored the Freedom Trail and enjoyed the city and all the seasonal sights and sounds. We didn't savor too long though. The wind bit our noses and nipped at our heals all the way back to Children's.

Now, we are settling into a nice winter's rest, after ramping up for six weeks doing our most vigilant to keep Esra away from germs and foreign bodies. Staying sequestered at home was the best way to stay well, even though she still went to pre-school and we attended the Sacrament (Communion) portion of the Sunday Services. We even made a button for Esra to wear at church. It said "Please don't touch me. I'm feeling sensitive today." It wasn't very successful, as the only people who wanted to touch her and love her are the ones who can't read anything without reading glasses.

Our list of tender mercies is growing...First, there were the gymmats and corner seat. Then it was the tuition for preschool, Next, it was the wagon. Now, a group of three families is giving Esra a sand/water table for Christmas. And our application to a local non-profit to fund a hand-powered tricycle was approved yesterday. (There is even talk of acquiring a used power-chair from a little girl who has outgrown it. More to come on that soon...) Most of these items have come to us through a very intuitive and giving woman. She sees our need and helps us fill it. The other items have also come to us through equally hard-working, dedicated professionals and community memebers who care about Esra's well-being and success. We are blessed.

2 comments:

Krista said...

Sounds like things are looking up. So happy for that for you. Lots of love!!!

Mema said...

I'm glad to hear you are getting so much help from community. What a blessing for Esra. The girls are so sweet, really like the ones of Estelle doing her popeye look. So funny. Looks like the train is the way to go.