Day 31: A Great Start

We've had a great start to our new life.  Shayna has done exceedingly well for her first month with her half of Aba's liver.  It's a great day to celebrate that monthaversery.  Shayna did it by playing with her box,

playing with Aba,

and playing with Kate while Ima and Aba went to a movie (photo by Kate).

No, she can't pull herself up yet but she's pretty stable if you position her well, until she gets tired or over excited anyway.  Nahum and I walked the block and a half to the Squirrel Hill Cinema to see Sherlock Holmes.  I never read any of the stories but Nahum had and we both liked the movie anyway.  It was harder for me to go out this time than the first time I ever left her with a sitter.  Kate had to do 3 different meds that require some time dancing too.  Everything was great.

Happy New Year!! 

Day 30: "warm" birthday

 Labs and clinic went well, but we still need snow tires.  Shayna's liver numbers continue to drop so the Prednisone (steroid used to combat rejection) was decreased again and I don't have to do any more sodium bicarbonate (liquid baking soda with cherry syrup) because her CO2 levels are at the low end of normal.  They're still struggling to find a solution to Shayna's high blood pressure and my in ability to check it, but at least they're working hard to get it solved.  I give meds for that in the morning only since it's high but we can't guarantee that it'll be high later and giving while low is really dangerous.  Once she's off the prednisone, we shouldn't have the high blood pressure issue.

It was relatively warm today (upper 30sF) so we enjoyed a slushy walk to Barns and Noble and the Kosher grocery for some unique items (more yummy Bamba).  Shayna continues to get more energetic, feisty and interactive with each day.  After another short jant to find a mailbox (just her and I) this evening, we settled in for some make Shayna giggle time.  It is so wonderful to have a healthy, happy baby.  We got 2 skype sessions in with the 2 sets of grandparents that have the capability (Colorado and Israel).  They all ooed and ahhed over her and Michael about cried again because he had to leave Shayna to go back to Melinda.

I turned 29 today also.  It's an anticlimactic number to the year we've had.  I feel much more like I've earned 30.  I guess that just means it won't be a big deal with it comes.  It was a good day and Shayna discovered snow.

Day 27: Shayna nafal

More of the same: good times with a baby and a little shopping by myself (for baby/kid stuff of course).  It was kinda of hard because I can't buy anymore cute baby clothes since I've already got her too much stuff.  We got out for a family walk to the grocery and fruit shops.  Nahum pushed the stroller the whole time so he is doing much better.  Shayna fell out of her stroller and cut her lip on the sidewalk due to a parental lapse in judgment by both of us but was smiling within 5 minutes.  Lesson: Always buckle your child in even when she's been stuffed into the stroller because of her ginormous snowsuit or she might just slip out when the stroller's not even moving.  Meds are getting easier.  She's even learning to take her jello shots without as much fuss.  It's freezing here with wind and snow still on the ground.  I like winter but I prefer the Colorado variety, a few cold days followed by some warm days.  This below freezing all the time is going to make me climb the walls.  At least next week the kids will be back in school so Shayna and I can venture out to the more attractive sites (like the aquarium).

I put 4 new pictures at the end of the December FB album.

Day 26: Shayna the Gerbil

Shayna loves most of her meds so much all I have to do is hold the syringe near her and she comes to it, I push some meds into her mouth, she sits back up, swallows, then leans in to put the syringe in her mouth to get more.  I made the mistake tonight of grabbing her meds while she was eating dinner (Aba was working the spoon).  She saw me and refused to take another bite of food (which happened to be a delicious Blacksburg special of Shlomo's sweet potatoes and the Kornbliths fried turkey pureed in the blender).

Our first day of labs and clinic was exciting as I was out scraping the ice off the car at 6:30 this morning just before I yanked a sleeping baby out of bed to stuff her in a cold car.  She was not to happy to start with but settled in for the ride.  We got there early enough that we were 2nd for draws this morning which got most of our labs back for our clinic appointment (usually doesn't happen) so I got to see them (and even get a copy).  All her liver numbers were still on the way down so I get to decrease her Prednisone (taken as "jello shots" because of the way it tastes with jello like too much vodka had been put in the jello shot).  Later we also got word that her FK/Prograf levels were at 13.7 and with the liver numbers down the goal is now 12 so we're at 1mg morning and night (down from 1.5mg in the morning).  Also, if the liver numbers continue down on Thursday, we'll go to once a week visits.  (If they don't, she'll need a blood transfusion because her little body can't handle 2 draws a week.)

We had some excitement after our 2nd Kornblith visit as cobblestone streets get very slick when it's freezing out and snow is covering the road.  Nick and I had to help Nahum's car uphill away from Judy's house by pushing.  After Nahum slid/crashed into the curb a block from our house while trying to park (only cracked the bumper) we backed into the alley where we have a garage to park in and got stuck again.  With one foot on a light post, since the ground provided no traction, I got to push Nahum's car again to get it into the alley.  We were so thankful we didn't slide into another car on those cobblestone roads and have a garage (albeit behind the house across the street) to park in as there was no way Nahum's gripless tires could have gotten us into a spot remotely near our house.  Snow tires here we come.

All in all it was a good day with Shayna laughing more and more.  She is such a fun baby.  She's back to the baby we brought home from the hospital that only complains for food, sleep or a diaper change and is happy the rest of the time (expect for jello shots).  She's getting so much stronger with each day that I bet she'll be crawling by the end of January.

Day 25: Good Friends

We got a wonderful tiny visit from the Alkahers yesterday.  They were on they're way through to visit family elsewhere but dropped off some of Shlomo's yummy food.  Now we can eat well again and I don't have to cook just yet.  Today we're going over to Judy's house to visit with the Kornbliths who are up from Blacksburg to spent a couple days with Grandma Judy.

I had help start today and finally got the Rondald McDonald room turned over.  I had gone over the clean yesterday but forgot all my keys.  Hopefully now I'll be able to start jogging again in the great parks near our house, explore the stores in the area for grocery deals, and cook fun, healthy meals for my family without time stress.  Shayna took to Kate right way.  She's such a happy baby these days that I think getting her to like any sitter will be easy.  She doesn't even scream at me when she hungry, unless I really let her go of course.

We're doing great right now.  Nahum is feeling better and started walking again yesterday.  He only walks for little distances and still naps a lot, but the fact that he wants to get out of the house is great improvement over the first couple days I was home.  Shayna's meds are getting easier.  The Hersey's only worked once.  Friday was a near Prednisone (anti-rejection, steriod) failure.  I was lucky if I got half of each dose in her so I spent some stressed time Saturday morning getting a suspension form and getting some advice from our post-transplant nurse coordinator Alice.  The pharmacist was amazing, staying open an extra 1/2 hour just to help me.  He got rid of 1/2 the horrible bitter after taste with his compounding pharmacist's recipe.  Alice actually had helpful advice: Jello.  I mixed the 1ml of Prednisone with .5ml water and 3/8tsp sugary, jello powder to get a jello-prednisone slug.  It halved the bitterness again so while Shayna still doesn't like it she does swallow more willingly and drools much less of it out.

Off to see the Kornbliths!