Revelations and EBV

Her EBV (Epstine Bar Virus) levels are up.  This is something 90% of adults have by the time they're 40 and in normal people it's usually just a rougher flu and can occassionally lead to mono but in an immunosupressed person there can be more severe complications.  Shayna's numbers are in tier II of a four tier system so, while her Predinose was lowered Monday from 7.5mg to 5mg as a natural wean, we lowered it again to 2.5mg on Wednesday (it takes 2 days for the EBV levels to come back) to give her immune system a chance to try to fight the EBV.  Right now we wait and see where the levels go over the next few weeks and we'll deal when anything else if and when it happens.

We continue to struggle with normal parenting things like sleep, or lack there of.  I finally moved to the master bedroom with Nahum on Monday and enlisted his help with night-time Shayna calming.  When she sees me, she expects to nurse for comfort and gets pissed if I don't so if it's been less than 3hrs we now send Nahum in to help her get back to sleep.  Last night all three of us finally had a decent night sleep and I got a full 4.5hrs of uninterupted sleep and Nahum only had to calm her once (though it was a rough one).  We're also working hard on a strict nap schedule and bedtime routine.  So far, she seems to be responding.

Speaking of napping, she just woke and is calling.  I'm going to take her swimming today so I better get going so we can work all of our stuff in before nap time #2.

No Prograf Change!

The good news today is that we don't have to adjust her Prograf dosage.  This means we don't have to go to lab on Thursday.  In another day of freezing temps, clouds, and wind, Shayna and I ventured out into Pittsburgh at 7am (the sun's not even up that early).  She was a trooper as usual and flirted with the doctor (who thought she was so cute that he took a couple pics with his phone).  They declared her fit and said we only  have to come to clinic every other week.  With the lab results in the afternoon, we found out we only have to do labs once a week now too.  Next time they'll talk about when we can go home, but it's looking like our lease, which ends on the 16th of February, is just about perfect.

Shayna is a goofy, energetic baby and I still think she'll be crawling, or at least scooting, before the end of the month.  When I listen, she tells me when she has to pee even with her diaper on.  Total victory is a long way off, but each pee-pee in the potty is a little victory that makes us both grin (she's so proud of herself when she goes).  We're also both loving the new baby food pureer I got as she can now eat anything we eat, like brisket by Leslie (yummy-yummy) and chicken mushroom stroganoff.  She can finally feed herself Cheerios, etc, which also means she can eat the piece of cheese or Bamba stuck in her palm.

Shayna sans diaper (part of EC) in the kitchen loving some Bamba.

Shayna enjoying her new beach ball.

We're official Sam's Club members.  I joined the one here as one is coming soon to the Blacksburg area.  (I still think Costco is better, but I'll take what I can get.)  I made my first trip while Shayna was with the sitter so I could wander the isles uninterupted.  Most of it is the basic highly processed food stuff, but there's enough other stuff (like diapers) to make it worth while.  I splurged by getting a jar of pesto and some blackberries (not to be eaten together).

Still at Twice a Week

With Prograf levels still fluctuating, we've had to stay at twice a week labs.  Alone that's fine, but the snow is making the morning drives (still w/o snow tires) a little sketchy.  We've had good road luck so far this week and it looks to continue (I was even able to get in a trip to the supermarket yesterday before the snow really started.)  Nahum made is first lab/clinic day yesterday, on 3 hours of sleep (his normal insomnia), and wound up getting poked too for one of the studies we entered (I think we're only in 2).  Her liver numbers are actually w/i the normal range, probably for the first time since she was born.  She's not gaining weight again so there's talk of supplementing her.  I'm trying to stuff her between now and Monday to get her to show some weight gain, and so she'll stop waking up so much at night.  (At this point, I'd love a consistent 2-3 times as she's settled into 3-5 times.)

Shayna doesn't like be wet or sitting in a poopy diaper so I've decided to try to EC her in the hopes that this will also help avoid what I've seen friends' toddlers do recently, throw fits about diapers changes.  We're just doing it part-time, but so far she love to pee-pee with Ima.  I've always taken her to the bathroom with me in the hopes that she would see it as a normal part of life and be more willing to potty train with the time came as her health issues before transplant made ECing daunting to me.    If I work with natural baby timing (after nap and during a nursing break), she pees about every time.  The no-diaper watching is a little harder she sits and her belly is a little bigger than most babies so it's hard for me to see when she starts peeing.  (Most people start EC when the baby can't sit and it's a lot easier to see a baby start to pee when it's laying down so the genitals are visible).  Yesterday I caught her signals 2 of 3 times (the miss was caught by towels and pads and didn't even reach her play blanket over the floor).  I ordered the book The Diaper Free Baby yesterday (along with 3 sleep books).  That'll get here Monday so I can stop winging it based on the website and my friend Yael's advice (and the little I did read in the book I borrowed from her before Shayna arrived).

I made it to the JCC gym twice this week!!  Since I'm so out of shape, I only do 40min workout +10min stretching to avoid burnout before I can even get started.  I jogged and biked the Tuesday and biked and lifted weights yesterday.  Their bikes, while being only recumbant or cruiser style and not like real workout bikes, are quite hightech.  Most have computer screens that show tv or a cycling route and half have handlebars that turn.  I picked "Evening Bliss" so the computer took me on a 2.5mi loop ride in a park like a video game race track except you can't crash (I tried runing into other cyclists and they just kind of disappear once I hit them and it also won't let me off road when I tried to ride into a ravine).  My goals are to making hiking with Shayna easy this summer and to do a 10k in 50mins before summer solstice (my current PR is like 50min40sec).

5 Weeks Out: "Normal" baby

I opened up my "what to expect the first year" again for the first time in months (for some reason it didn't help much with a dying baby who looked like she'd swallowed a water balloon).  I have to go back a few months since we lost all of December and lost ground as well. Plus, I'll have to combine months as some fine motor skills are where they should be.  Month 7 is a good place to start; though, she gets stronger every day so she might be in an accelerated program.   Her vocabulary jumped again.  She'd had 2 days where she used a lot of new sounds then went back to the repertoire she'd had for the past 4 months until Saturday.  She started babbling again with all kinds of noise mixes (must have been our visit to the Tower of Learning).  I swear she says "duck" now but half of that may be wishful thinking.  Anyway, it's fun being able to look through a normal baby book and think about what she can and can't do and to be asking normal questions about her development again.

We started our first week of once a week labs this morning and all her numbers continue down except Prograf which stay the same.  They lowered her Prograf dose to 1mg in AM and 0.5mg in PM.  The lower that is without rejection the better.  Just after transplant the goal is usually around 15.  At a month out they want her around 12.

I got a sweet 2 month membership at the JCC 6 blocks from here that is not only a community center and daycare but a workout gym WITH a pool.  It got a $4milion makeover 1 1/2 years ago so its got awesome workout facilities now plus a posh locker room.  It's FREEZING here (as it is most places I know) but now I've got a place to get regular hard excercise.  Shayna's got a sitter at the house so I don't have any excuses. 

Nahum started to go regularly to the univseristy again. He met with the computer guy there to get access while he's on campus and has an office in the Physics building.  It'll be nice for both of us to have him working outside the house again.

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.