"Hiking"

Since Shayna loves being outside so much, Nahum and I decided to go on a little outing with Shayna last weekend.  We went a whole 0.4 mile to a beautiful overlook called Wind Rock.  Shayna walked about a quarter of it each way and loved scrambling around on the rocks, eating rocks and pulling up the grass.  We plan to explore Mountain Lake this weekend.  Hopefully it'll be sunny so Shayna can check out the water too (something else she loves).

Shayna and Patricia playing on the rocks and looking over the overlook.

Nahum helps Shayna with the uneven ground.

Shayna waffles between wanting to hold a hand and doing it on her own.

Shayna is adding to her vocabulary and can say duck along with hat.  She works on other words like on, off, down, help, and hand when I mention them first (eg I say, "do you want some help?" and she'll say, "hep, hep" if she does).  One of her favorite play areas in our shower where the drain cover comes up so she can stick her hand down the hole or try to stuff my shampoos down the drain.

Today I sanded the deck after power washing it last week in preparation for staining it tomorrow.  I finally got around to putting the insulation back in the basement ceiling last week (had been removed a year ago when M&M were here after Shayna's birth as Michael and I ran some new line for a new spigot outside).  I only got about 1/2 way done when I discovered the master shower had been leaking.  There's some cracks in the grout where the floor and walls meet.   I'm just waiting for it to finish drying so I can caulk it.  I fixed Shayna's door yesterday so the top doesn't stick on the jamb.  The house projects seem to be never ending but I guess that's just part of home ownership.

Labs were still the same last week (liver numbers stagnant and EBV down).  She was an angel again today and didn't cry at all when Misty took her blood.  I'll see those results probably Friday.

5 Months in 6 weeks

We had Shayna's 5th physical therapy session yesterday since her evaluation at 13-months-old.  At the evaluation, her gross motor skills we at a "solid 9-month-old's".  Yesterday, at 14-1/2-months-old, we were told she's closing in on 15-month skills.  Thanks to her physical therapy exercises, all the work her caretakers put into her, and Shayna's general enthusiasm for life, she has advanced 5 months in just 6 weeks.  She still has some core, hip and shoulder weakness that we're having to get more specific to target.  She has a crib mattress we support on a little stool next to the couch.  She has to crawl-climb the mattress ramp to get onto the couch and reach her toys that we put just out of reach.  She also has a large exercise ball which we bounce her on (to the wonderful music of Lady Gaga).  This challenges her balance and makes her work her trunk and pelvic muscles to stay up right.  Shayna loves both activities and will ask you to put the music on then goes over the her exercise ball and slaps it a few times to get your attention that she wants to bounce.  If the mattress/ramp isn't set up she'll go find it and shout and slap it to get our attention so we set it up for her.  She loves crawling up and down it on her own.  Stairs and little curbs (e.g. from playground to grass) are also strongly encouraged and a huge hit with Shayna.
Her liver numbers were stagnant last week so there were no medication changes.  Two of the numbers are in the 40s and need to be in the 30s for us to start prednisone (steroid) weaning.  EBV wasn't checked last week since it had been trending down.  We'll have it checked with tomorrow's labs.  I would imagine having to be off prednisone to be off the valcyte (antiviral) since the prednisone opens the door for the EBV.  (EBV reminder: 90%-95% of 40-year-olds have the antibodies, it causes a harsher flu when most people get it and is the cause of mono, in immunosuppressed people it can lead to lymphoma (cancer).)

Nahum and I are trucking along as usual.  I get out for bike rides with Shayna once a week with a friend who has 2 little girls and just happened to buy a bike trailer for them on the same day I got mine.  It's been a lot of fun doing little rides to parks and ponds with them; though, Shayna continues to have her reservations for the trailer.  My garden is 90% done.  I'd still like to get some strawberries in in one area.  Other than that, it's just a matter of watering, grabbing the weeds when they come up and watching things grow.  We had one of our best Virginia weekends last weekend as we had 2 sets of friends with kids over on Saturday and went to a potluck at another friend's house on Sunday.  It's the people in our life that really make it great.

Her are some pictures from our 2nd Saturday gathering. 

Here Shayna tries to get Avishi to climb the mattress with her.  The picture is from a video I just posted on youtube of them.

Avi, Jenny and Shayna play.

Sarai, Jenny and Shayna play.

FYI: EBV down too

Shayna's EBV-PCR level is down from 99,000 to 68,000 last Wednesday.  The docs are happy because this means the oral antiviral is working so we don't have to run that test this week, just all the others.

Shayna can now walk on grass.  I stuck her out in the middle of the yard so I could have some time to water my garden without her trying to play in the sprinkler or the mud.  Instead of the 15 minutes I got last week because she had to crawl and therefore noticed more grass, dandelions and clovers that needed sampling, I got 30 seconds as she toddled straight to me.  Luckily the back steps are just as fun as mud and water so I was able to find a good distraction for a little bit.

Super Low Numbers

Two of Shayna’s liver enzyme numbers that we watch are the lowest they’re been since transplant.  The other one wasn’t alarmingly high but is still dropping as well.  (Elevated numbers indicate liver damage as well as hint at probable causes depending on which ones are elevated.)  She also shows no signs of anemia yet, a common side effect of the antiviral drug Valcyte that she’s on.  I don’t have the results for the EBV numbers yet but we’ll probably be on the antiviral for a while (possibly 6 months).  Shayna’s getting sick of having all the medicine syringes in her face so I’m hoping we can start weaning the steroid Prednisone soon since I have to give 2 other meds with that.  I long for easy days of only 4 meds w/ 1 twice daily.  Now we’ve got 8 meds w/ 3 twice daily.

Shayna now walks where ever she pleases all over the house.  She took her first steps 3 weeks ago on accident.  6 days later she walked for her physical therapist Lynn and I but could only go 5-6 steps before falling.  When Melinda got here last Wednesday, Shayna could go in a straight line on a flat surface okay.  By the time Melinda left the following Wednesday, Shayna was freely navigating the whole house but still needed a wall or object to get her on her feet when she fell.  Friday she was able to squat to pick up small objects and stand again 1/2 the time.  Yesterday she started being able to stand on her own in the middle of the floor.  Nahum and I are just in awe of her development and skills.  It’s wonderful to see her just appear in a door way or disappear into another room.  She still has a lot of trouble on grass but she’ll just ask for a hand to help her so she can walk to what she wants.  Her stair climbing technique was finally perfected yesterday at our friend Yael’s house as she has a 2nd floor.  Shayna loves to walk back and forth between Nahum and I for hugs.  She also loves books.  She’ll sit by herself and flip through one book for 15 minutes and gets excited when we offer to read her a book.  She’s still only got the one constant word of “ha” for hat but is starting to mimic my cow and sheep sounds though it comes out “boooo” and “ahhh”.  She also has her own word for ball, kind of a combination of duck and ball that I can’t quite put my finger on.

Here are a couple pictures from Melinda’s awesome visit.  It was such a gift to have her here while Nahum was gone.  

Reading a book.

Hiking at the Cascades.

You'll also find two new videos on youtube.

Nahum is now back from Israel and doesn’t seem to be suffering any jet.  Shayna was ecstatic to see him and wouldn't let him leave her sight for the first hour.  She started crying when he left her for a minute to go to the bathroom.  Nahum gave me this morning off and took care of Shayna while I rested.  A nice Mother’s Day treat. 

EBV and Liver Numbers Down

For the 3 or 4 of you waiting with bated breath for my little updates, I thought you'd like to know that Shayna's EBV numbers went from 270,000 last Wednesday to 99,000 this Wednesday.  We only started the Valcyte (antiviral) Monday evening so I don't know if that's the reason it's down or if it's another reason.  I'm just very happy they're down and I hope they'll keep going that way.  On the other amazing side of having another person's liver, her liver numbers are down which hopefully means the rejection is also getting under control.  Since I've only seen the number and not actually talked with anyone, I'm hesitant to get too excited until I see what next Wednesday's lab results will be and have the verdict verbally confirmed by our nurse coordinator.

We are thoroughly enjoying Grandma Melinda's visit with lots of activities and a constant play buddy for the baby.  Shayna is taking longer and longer unassisted walks to wonderful things like hats and balls.  I even think she's starting to say ball.  Nahum probably cried himself to sleep in Israel because he misses Shayna so much.  He's visiting his family, and a couple colleagues, for a week and will be home Thursday.  I am doing well.  I got to swim with my friend Leslie today and do some plant/garden shopping with Melinda and Shayna.  

Strawberry-Valcyte Ice Cream

Shayna's EBV blood level jumped in the 5 days she was on the steroid Prenisone so our newest nasty tasting medicine is a last ditch effort to keep the EBV from attaching her liver since her body already is doing a little of that.  Valcyte is an antiviral drug typically used to fight CMV (another common virus that can cause some trouble with transplant patients) in some transplant patients; though, it is an off-label use for liver transplant patients.  Since we are currently dealing with a little Mild rejection so have to suppress her immune system, we also have to help her immune system deal with the EBV. While all this is a bit scary and overwhelming, it's nothing the Pittsburgh transplant team hasn't dealt with before.  It also strickly manifests itself on the lab level only so Shayna is still growing and developing with no signs of any issues.

In fact, we had a major development milestone yesterday.  Shayna strung several steps together a few times and even kicked her purple ball on one of her walks.  She was showing off for her physical therapist I think as she usually like to do firsts with an audience if she can get one.  She also discovered the joys of doors and draws Sunday (and I forgot to get cabinet locks on my shopping trip yesterday).  The only thing left is climbing and then nothing in the house will be safe.  It is truly a joy to be in this position with Shayna.  Watching her thrive and grow brings Nahum and I such pleasure that the extra work is actually fun.

With all her new talents, I don't think she's quite ready for a spoon.  I let her feed herself yogurt & kix Sunday.  The spoon was quickly abandoned; though, she did have fun trying a few times.

She weighed in at 8.46kg (18lb10.5oz) last Saturday.  That's a 140g gain in one week (5oz)!  Since today is her monthiversary, I'll check her height on the back of the door after her nap when I can get some help.  14-months-old today!

Crabby, Steroid Baby

We made it home safe and sound last Saturday.  Shayna is getting to be a much better road-tripper. She slept for a full hour in the car and didn't complain while falling asleep or waking up (a first for post-transplant trips).  We spent most of the drive home either playing "what's on your head" where Shayna puts various things on her head and hoots at me to wonder where they went (she can't see them) then show great enthusiasm when she pulls it off to show it to me in the review mirror or dancing to Lady Gaga or Miley Cyrus.  (We now listen to both daily as she likes to dance; though, I have order a couple new cds so we can have a little variety.)  She also chilled out and ate snacks I passed her.

We had labs in Pittsburgh last Friday that showed a slight decrease in liver numbers but they didn't change this week after 5 days of prednisone (steroid to suppress her immune system) and a slight Prograf in increase (normal/lifetime drug for suppressing the immune system) so we doubled the prednisone dose to 10mg a day.  She was already a bit crabby with the 5mg as she squawks in her high-pitched, ear-splitting screech much more readily these days.  We'll run labs again next Friday and start her prednisone wean too.  As long as the EBV doesn't skirocket, it'll probably be a 6-8 week weaning process.

Speaking of weaning, we're weaning from nursing.  Shayna is taking it much better than I am and we've only gone from 6 to 4 sessions a day so far (before and after each bed time).  She gets thawed breast milk in her sippy cup during the day so we might have room for food in the freezer again in a couple months.  (She also takes cow's milk and water.)

This week's milestones are first steps and climbing stairs.  She took her first unassisted steps on Tuesday April 20.  The most she's done to date is 3 before grabbing something or falling and she doesn't like walking on her own either.  She gets psyched out easily with both standing or walking alone so complains when we let go of her (unless she's playing "standing baby").  She finally figured out what to do with stairs so we use that for physical therapy.  Stair climbing combines coordination, balance and strength.

These are the back deck stairs and the rock works as motivation because she's climbing to reach a goal.

I've posted some new videos on youtube this week for Shayna's adoring fans.