No Hemolyzing

Shayna is not destroying her red blood cells (phew!); her iron level is just low.  In a month or two we should see the red blood cells numbers reach the normal range based on the combination of iron vitamins but continued weekly blood draws.

We like to weigh her ever Saturday to make sure she's gaining well.  While last week was only a 30g increase this week we jumped 170g.  We all proceeded to do the happy dance around the scale with that number.  She's now at 7.87kg, or 17lb 5.5oz.  According to the Denver Children's Hospital this is only 80g (3oz) from being in the 2nd percentile (this a huge improvement over the 1kg it used to be).  Below is my Excel chart (download from the CDC website).

The other exciting development this shows is she is only 50g away from her previous all time high and this time it's all healthy Shayna weight.  (The two dips are from hospital visits that included albumin transfusions with a diuretic to get her to pee off some of the fluid that had collected in her belly (ascites).  The 2nd one was accentuate by the transplant 2 weeks later).

Today we take Shayna to her 2nd Easter egg hunt.  I got her her first basket, which she really enjoys playing with, so we can collect some plastic eggs with candy for Aba.

I posted Monica's birthday pictures from Shayna's birthday.  Enjoy.

Good Times

Nahum and I have been relishing having a health daughter for the past couple weeks and enjoying normal family time and outings with friends.  It feels so magical to be a "normal" family again.

Happenings since we've been back:

-Nahum went to the Netherlands 3/13-3/20 for a wonderful conference.  Shayna and I did great while he was gone with lots of play dates and even a bbq.

-I got a Burley D'Lite ST bike trailer that I'm in love with and Shayna is adjusting to.  The first ride to the store was a bit tough as she got tired and hungry before it was over and I didn't have the seat and straps adjusted quite right yet for her comfort.  This morning's tour of the neighborhood went much better.  Leslie came over with her 2 girls and their new trailer then the 5 of us did a loop around the neighborhood and ended at the playground.  I think this helped Shayna as she loves the swings.  She mildly protested when I first put her in at the house but after the park she actually seemed content in the trailer.  A few more little trips like that and hopefully we can use it to run errands.

-Labs continue to get better.  She sat on my lab for yesterday's and only fussed mildly when the needle went in and out but was great during the draw.  She even tried to grab to the tubes, to help I'm sure.  I don't know today's results but we did have to add some extra tests to see if she is hemolizing her blood (destroying her red blood cells) due to a possible autoimmune disorder because of the immunosuppression. 

-Shayna's scooting more and more on her own.  She continues to gain weight well.  She enjoys trying different foods but would happily eat cream cheese sandwiches and strawberries all day if I let her.  She takes her (cut up) generic Flinstones chewables with iron like a champ and feeds herself the medicine in her syringes.

-I went to master's swimming for the first time since Shayna got sick last night and Nahum took care of Shayna (dinner, play, and bedtime).  All three of us had a wonderful time.  Nahum loved walking Shayna all over the house and I enjoyed being rewarded by the Pittsburgh gym session with some good starting times in the pool and enjoy dinner and a beer with my friend Leslie afterward.

Each day continues to be a joy and a blessing with our health little girl.

Lab Fiascos and Trying to Exist without Katie

So I botched both lab attempts this week by not bringing the orders, instructions for the portion sent to Pittsburgh, and all the UPS stuff to send it.  Shayna had to get poked Tuesday and Wednesday and things still weren't straightened out since the prograf level test was canceled for some reason even though they kept the blood to run that test.  Luckily, there's next week. 

The house is 1/2 unpacked.  I miss all the nooks and cubbyholes of our Eldridge house.  I need to get some more pretty storage shelves and cubbies here to protect the table and counter spaces from ballagon.  This house is about 2.5 times the size of our Eldridge apt but there's 1/2 the space to put things.  I miss Katie the cleaning hurricane.  I have to do all the unpacking, Shayna care and regular house stuff myself plus I don't get any gym breaks.  Oh well, I guess it's just back to normal life and pushing the jogger.

Shayna's doing great for the most part.  She's perfected the pincher move so can now get all the little things on the carpet into her mouth (a week ago she could only pick them up but would miss her mouth).  We still have to coax her to scoot as she'd prefer it if we'd hand her what she wants.  She squeeled and hooted at some ducks and a bunny today.  We also visited Aba who showed her off to all his friends in the VT physics dept.

The "Aravs in Virginia" Again

We pulled into our garage about 1 1/2 hrs ago (from starting this post) and couldn't be more delighted to be home.  This homecoming was more meaningful and more wonderful than when we first brought Shayna home from the hospital at 3-days-old.  It was magical a year ago because of this beautiful, new, healthy life we had been blessed with but within 4 months of that first breath we learned something was trying to snuff that beautiful life out.  We took a dying child and a healthy man to Pittsburgh and have returned home with a thriving child full of life and a parent and child connected beyond comprehension.  Thanks to the wonders of modern medicine and the thousands of scientists that came before and are today, a healthy man was able to give part of his liver to a dying child and save his daughter's life.  We were given back our child and the possibility of a long, healthy, and full life for her.

Thank you so much for all your kind words, warm thoughts, and extraordinarily generous help through out this difficult journey.  I would like to recognize today's hero Yael who drove to Pittsburgh yesterday, helped us finish packing, loaded her car with most of our belongs, drove them back to Blacksburg today, and unloaded everything on her own so it was waiting for us in our garage when we pulled up.  A special thanks to her husband Frederick and daughter Hannah who went shopping for us today so we'd have some real food in the refrigerator (and he also shoveled our humongous driveway 3 weeks ago).

What a blessing to be home and have a chance at a normal life again!

Going Home!!!

I've got tons to do between now and Sunday morning when we pull out of here but we've been officially cleared to go home!!!!!!!!

Oh, and Shayna started crawling on hands and knees yesterday too.

The Zoo It Was

I spent the afternoon at the Pittsburgh Zoo and Aquarium with a 1-year-old and she was totally fascinated.

She giggled over the Lemurs like she does the cat out front.

She didn't know what to make of the water line in the glass so kept trying to grab it but the swimming penguins were fun.

Standing over one of the aquariums at the Aquarium building.  The fish swimming beneath her were really cool and there wasn't that stupid water line to confuse her.

I want to go back so we can spend more time at the Aquarium as we had to rush through since she was very tired.  We saw lions, a tiger, two polar bears, otters, a kodiak bear, a black bear, elephants of all ages, lots of monkey type creatures, sharks, penguins, bright fish, an octopus, eels, and lots more.  It's an amazing facility.

Training Aba

I wondered how Nahum would be involved in EC/TT because when I ask him to potty Shayna he moans about the "work".  I didn't ask much so last week Shayna took matters into her own hands.  She'll squawk when she wants something (nurse, sleep, potty, attention) so I've been making educated guesses for the last 2 months.  She's also only expected me to take her to the potty so hasn't asked others to do it, until last week that is when she started making Aba take her potty too.  Instead of Aba toilet training Shayna, Shayna is training Aba.

We're still on for going home this weekend.  I'd put it at about 85% chance as her liver numbers looked great and her prograf level was right where the doc's want it, but her EBV results aren't back yet.  We don't see the transplant doc's until summer but they still have me on bi-weekly labs.  The reason I think the chances are so good is that Shayna's coordinator sent discharge packets to her Blacksburg pediatrician Dr. Berry and Roanoke GI doc Dr. Hart yesterday for our appointments with them next week.  I stopped by clinic to get weight and height for her 1-year babybook entry and she's really grown.  She's gained 200g in the last 2 weeks to hit 7.446kg (16.4lb) and is 69cm (27.2in) so she's officially out grown her car seat.  (I've got her big girl car seat in Blacksburg waiting for us.)  She's got 585g (1lb4.5oz) to go before she doubles her birth weight (usually done around 4 months) but she's been eating like a horse recently so I'm hopeful it'll happen soon.

After a valiant 2 weeks of 10hr days every day, Nahum submitted the major proposal he'd been working on since January on Friday and a smaller one as well.  It was was wonderful to have him home all weekend for both Shayna and I.  We had a relaxed birthday morning then spent the afternoon with wonderful friends.  We relaxed more Sunday, went for a walk to watch the people sledding at the park (which has an amazing sledding hill), and I got an afternoon nap.  Nahum is just dealing with bureaucratic odds and ends this week so  he can hit the ground running next week with his new post doc in Blacksburg.

I'm debating whether to take Shayna to the Aquarium and Zoo today or start packing.