New Date: Dec 1st

After much back-and-forth between doctors, coordinators, and us, we have a new LRD Transplant date of Dec. 1st.  (Right smack in the middle of expensive plane ticket time.)  Nahum's coordinator tried to get us to agree to the 10th so I called Shayna's surgeon's cell (yes, a doctor gave us his cell number) to find out exactly why we had to wait so long.  Just a miscomunication which we were able to straighten that out in an hour.

It's amazing how many big-wigs have to be on the same page for something to get on the board.  There's Nahum's surgeon Dr. Humar and Shayna's 2 surgeons Dr. (Kyle) Soltys and Dr. Mazareirgos.  There's the 2 nurse coordinators Nahum's Mimi and Shayna's Kim and the infectious disease expert Dr. Green.  There's Shayna's local GI doc Dr. Hart, Pittsburgh GI doc Dr. Shneider, and new pediatrician Dr. Berry whom we saw yesterday to determine Shayna's current health.  And those are just the people that I get to have contact with.  Then there's all the support staff for each person and facility plus the 2 ORs we'll be using.  Frankly, I'm astonished we got one date canceled and another one scheduled in less than 24 hours of each other.  It took a lot of stress out of the day to have a new day to focus on again.

I just posted some November pics on fb.

 

Cold = No Transplant (Updated)

I just wanted to let everyone know that Shayna has a cold.  As such, they can't do the transplant Thursday.  We'll reschedule for a week or two from now.  We spent all morning with her new pediatrician at his new B-burg office.  They took a few snot samples for cultures.  I talked a little with the Pittsburgh folks.  They'll let us know when they have some date options but we're looking at the beginning of December sometime.  I will post the new date when we know.

While we saw this coming with her cold symptoms starting Friday morning, it was still a hard morning to have it all confirmed.  We've got a lot of stuff up in Pittsburgh thanks to our friend's mother-in-law that waiting for our arrival and an apartment we've got to sign the lease on tomorrow if we want keep it.  We're set to go at any moment now we just have to hurry up and wait.

Our New Home

Everything seems to be falling into place.  Nahum’s massive grant proposal (due this Friday) is coming along nicely.  I found a beautiful 2-bedroom apartment in a lovely neighborhood (it’s the first floor of the house in the picture).  Our transplant assistants Michael and Hilary will be joining us for dinner on Tuesday the 17th and all appointments on the 18th.  I may have found a crib, mattress and bedding set all from the same person who’ll bring it to our home-away-from-home Tuesday evening.  My good friend’s mother-in-law will be in B-burg this weekend from Pittsburgh and has volunteered to drive a bunch of gear up for us so we’ll have everything we need for our Pittsburgh “winter vacation”.  My mom Melinda will be joining us for Thanksgiving (she does a great Thanksgiving spread so that’ll be a real treat).

Our Pittsburgh address will be:
2311 1/2 Eldridge St
 Pittsburgh, PA 15217

I’ve got a lot of packing to do this week (including unpacking some boxes of clothes because Shayna is back in 3-6 month clothing).  It’ll be interesting to see how I pack for 3 months away.  It’ll be a good lesson as we’d like to go to Israel for 3 months in the summer of 2011.  (Nahum would work at the Technion in Haifa.)

Shayna continues to get stronger.  Nahum found her sitting in her crib when he went to get her at 11pm last night (I’ve never seen her even try to pull herself up from any position).  Her legs can really support her whole weight now and when she’s sitting she tries to reach things that are so far away she follows over, a first step on the way to crawling.  She probably still won’t crawl, but it’s delightful seeing her feel so much more comfortable in her body and be so strong that she would even risk reaching that far.

I better get going so we can go for Shayna’s weekly blood draw and Dr. Hart can have some numbers for our last appointment tomorrow.

Game On!

Transplant Day: Thursday November 19, 2009

We are officially fully scheduled for our Living Related Donor Liver Transplant between Nahum and Shayna. We will go to Pittsburg on Tuesday the 17th to meet with my dad Michael and Nahum’s good friend Hillary. (Michael will be taking care of me so I can take care of Shayna and Hillary will take care of Nahum for the first 3 weeks we’re in Pittsburg.) We’ll meet with both Shayna and Nahum’s doctors & surgeons on Wednesday. We’ll say “see you later” to each other. Nahum will check into Montefiore and Shayna will check into Childrens for Wednesday night. Nahum will be opened around 6am Thursday for the beginning of his 6-8hr surgery. If all goes well, Shayna will be opened around 7am for the beginning her 8-12hr surgery.

Nahum is relieved and excited and I’m my usual nervous and anxious. It’s nice to finally have a date for our new beginning, but not knowing what we’ll get on the other side is nerve racking.

I’ll post more this weekend when my brain isn’t so tired and we’ve got more loose ends tied up.

First Halloween

We had a wonderful time on the town last night.  First downtown at a local church and the downtown merchants collecting some candy then to the BCC and the preschool room festivities.  Shayna absolutely loved watching all the kids and parents in costumes.  (Much better than just plain old people.)  She got into a shouting match with her friend Avi about candy and showed off her new muscles to friends by doing some moves I hadn't seen her do.  And she fellover face first from sitting and for the first time didn't cry about it.  Enjoy the pictures.

Cool Stuff on the Side

Check out the side bar.  There are links to one family's blogs about their life with Biliary Atresia.  Their son was transplanted Dec 2008 after 3 years on the waitlist in Atlanta.  So if you want to read about what we'll be going through soon start in Dec 2008.  They did excellent coverage of their lives and their son Ian is about as close to a best-case-senario as a person can get.

If you go down a little farther, you'll find videos of our princess.  If they show weird pictures just refresh so they show pictures of her.  (I think the blog must be pulling from a channel with a similar name.)

Shayna continues to make great strides in physical therapy.  She worked so hard this morning she slept from 10-12, 1-3, and 5-6.  She's getting so much stronger it's amazes me.  I don't think she'll crawl before tranplant but she is starting to catch up with her peers a bit with her core strength.  This allows her to reach much farther for toys and balance better in a bumpy stroller ride.  I guess she decided to be like Aba and train for her surgery as if it were a marathon.  She also put her foot in her mouth for the first time today.  That ginormous belly had been in the way before so she didn't even try before.  It's been a lot of fun reconnecting with the normal development milestones.

Nahum just put Shayna to bed so it's time to go relax with him and watch some more of the movie we've been working on for the last couple days.

We Still Don't Know

So I'm sure plenty of you are waiting.  Unfortunately, so are we.  Everything's been cleared except for Nahum's cholesterol levels, which is a concern for his health not Shayna.  It's also hereditary and seems to have no ill effect on the rest of his families' health so we're hopeful that whatever the results are of tomorrow's blood test, he'll be cleared for surgery.  Since we're so close, we do have a reserved date of Thursday, November 19.  Shayna's holding her own quite well too.  She hasn't lost any weight since all the water she shed, is getting stronger and more sure of herself, and her lab results (from blood draw Mondays) continue to hold steady. 

I've got some new pictures up on fb at October 2009.