Everything's up.

The results from Monday's EBV test and Thursday's regular prograf-dose-changed draw weren't so hot, but I don't know enough to understand the implications.  The 3 liver numbers we watch all jumped from Monday to Thursday indicating she's gone back into rejection and the EBV was slightly up too.  With Monday's prograf increase we're now dumping on a Prednisone increase.  No IV but we are going from 2.5mg/day to 10mg.  I've got a lot of questions for the doc on Monday.  Does this delay going home?  Do we have to start the Prednisone weaning process from the top?  When do the EBV levels get concerning enough to risk rejection by lowering the anti-rejection meds?  How long might we be on this teeter-tauter?  Luckily we've got an awesome doc at home who used to be the head of transplant in Atlanta so we probably can deal with a lot of this at home.  But do the local labs have the ability to run the tests Childrens run (they're pretty specialized tests)?  As Kate just pointed out, at least the prednisone will make her eat more (steroids increase your appetite).

Shayna's still being incredible.  She pulls herself up like a pro when you grab her hands.  In fact people have so much fun with that that she doesn't get as much tummy time as she should.  I was working on some tt yesterday and she can slither across the floor a few inches.  I set my cell phone about a foot from her so she spent some time with her head raise contemplating it.  She then lays her head down gives a push with one of her feet, lifts her head and reaches for the phone to see if she can get it yet.  She did this a few times, mixed with rolling to her back for a perspective change and to check out another toy within reach a couple times, before she finally reached the phone.  She reached a strength milestone yesterday too.  She can now be on her hands and knees at the same time; before, if one end was up the other went down.

Update: I just talked with Shayna's nurse coordinator and  she said we'll still be able to go home in 2 weeks because they can monitor everything from Roanoke.  Yay!!  (As long as things don't get worse that is.)

No tears!

Today's lab and clinic morning was monumental.  Shayna didn't scream, cry or protest when I laid her on the lab-draw bench, when the nurse put the tourniquet on, when Shayna watched the needle go in, or anytime during the whole 4-vial blood draw experience.  As her usual routine is to scream like a banshee the moment I set her down, this was phenomenal.  The meeting with the doctor and nurses was informative.  We were told we could go home in two weeks as long as Shayna gains weight and her liver numbers stay down.  Then I had a great talk with the dietitian who has instructed me to put butter or olive oil on just about everything Shayna eats to make sure every mouthful is packed with calories.  Now all I have to do is actually get her to eat the food.  Her belly continues to shrink and her legs and arms get bigger and stronger but they don't measure those things, only the number on the scale.  That number is getting bigger slowly, but they'd like to see more (and so would we); however, I think the bigger picture needs to be looked at with actual fat measurements being taken on legs, arms, etc since she's still working on getting rid of and not producing any more belly fluid.

The results of last Tuesday's EBV blood draw was good and bad.  Her EBV numbers went down but her liver numbers when up.  It's quite a delicate dance they have to do, giving Shayna's immune system enough leeway to keep the EBV in check but not too much to avoid rejection of Aba's liver.  The tentative good news this week is that, without any med manipulation last week, her liver numbers went back down.  We have to wait until Wed/Thur for the EBV results, but as they had dropped significantly last week and now changes were made, should be down still.

Carole (my birth mom) got to the apartment at 3:30am from Vegas (she lives in Death Valley).  She'll be staying for the week, helping out and just keeping us company.  Shayna is loving the extra person to dote on her and Carole inspired me to go for my first outdoor run today (I found a cool trail too; wish I were in better shape so I could explore more).  While I jogged, Carole walked so we both got out during the 1 hour of sunshine we got today (more snow for the rest of the week).   We went to Trader Joe's today.  A nice tourist destination but not a place I will shop frequently as there is much more prepared food than I need and not enough plain food.  (The cheese/dairy section was great though.)

 

Plans for the week include an adult dinner with Carole, Nahum, and I at a Thai place, walks with Grandma Carole and more jogs for me, begin collecting tax paper work (new baby and medical stuff this year), and make arrangements for getting us and all our gear back to Blacksburg the weekend of February 14th.

Thanks goodness for the JCC

That's one reason I'm enjoying Pittsburgh so much.  I've been working out regularly (those baby expelling stomach muscles still need work as they always seem to get sore) and finally took Shayna swimming for the first time since our stay in Boulder.  (Blacksburg just doesn't have good facilities.)

She LOVED the water (see more pictures at end of  fb album).  We also hung out there Sunday while it rained outside (after a short jaunt in the rain to get there) watching the kids play basketball in the gym then people walk through the main hall while I looked at the art exhibit.  Shayna got pretty excited about the kids playing basketball but then spotted all the extra balls in a corner of the gym and wanted to play herself.  Once she got more distracted by the stationary balls (which she would have promptly tried to eat) we left to watch people in the hall.

Even though we can't see a whole lot of people (as I would get smacked by Shayna's coordinator for exposing her to all those germs), it feels like we've got a community here.  We had a lovely dinner at some new friend's house on Friday.  Much more high class than I am used to with delicious custom martinis, but they're also grandparents so had a highchair and toys for Shayna (she even got to take some new things home).  There's a fruit stand/store around the corner whose owner I stop to chat with when I walk past with Shayna.  There's a park 10min walk from home with friendly parents I chatted with while pushing Shayna on the swing Saturday.  Yesterday we took a family day (since Nahum worked all weekend) and explored one of the little parks/trails along the Monongahela River.  It's been one of the snowiest winters but I can still easily picture myself living here.

Shayna responded great to our sleep training.  As long as I maintain a rigid nap and bedtime schedule, she only wakes once in the night now for feeding and goes right back to sleep.  It makes the day a little inflexible, but for a real night of sleep I'll take it.  I just have to prep for any outings I want to take her on (like grocery shopping or swimming) while she sleeps so we can get moving as soon as she wakes.  Having Kate helps a lot with this as I can run errands on my own, and Nahum and I can have date nights.  We saw Avatar in 3D at the IMAX  theater in Homestead (a borough of Pittsburgh just over the river from Squirrel Hill). Seeing a movie in 3D is AMAZING, plus it was a good movie.

Childrens was closed Monday (for MLK) so we did labs yesterday.  We won't know about the EBV levels until Thursday since the testing takes 2 days.  Our next clinic is this Monday (every other week) and that's when we'll know better about when we might get to come home.

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.