Graduation

Today Shayna graduated from the Early Childhood Intervention physical therapy program as she has met all her goals and then some.  Post-transplant she went from being 13-months with the gross motor skill of a 9-month-old to 19-months with "advanced" gross motor skills (don't know what the "advanced" exactly means but I sure enjoyed hearing it from professionals about my daughter today).  The whole experience has been wonderful thanks to our great physical therapist Lynn who actually started with Shayna a couple months before transplant.  We will miss Lynn's visits a lot.  Shayna really enjoyed their play time and especially showing off how good she'd gotten with the tricks and games Lynn had previously taught her.

Shayna is also graduating to a toddler bed.  She did great at nap time yesterday and today but fell out of bed at 11pm both of the last 2 nights.  I finally have things pillowed properly to keep her from rolling out but allow her to climb out on her own should she choose to.  Yesterday's nap was the big deal for Shayna as I removed the side of her crib from her room totally so she couldn'y ask for it to be put back on anymore.  She asked about  it, "side, side?"  I told her it was gone because she was a big girl and didn't need it.  She was concerned about this but went along with it.  After Becca read her the last book in bed, we watched the monitor with baited breath.  While she tossed both monkey and lamby out, she never climbed out herself.  She did do a lot a talking about the situation before she finally drifted off.  "side, side," while shaking her head then, "big," etc  We're very proud of her.

Shayan likes to talk about her friends a lot these days.  She tells me that Lana (3-years) swims and plays with Shayna's ball that Shayna shares. ("Lana," "swim," "ball," "share.")  Hannah (also 3) ran around our house yelling. ("aaahhhh" while running then turns to me, "Hannah.")  Shayna took a bath with when his parents watched Shayna and swims with Sawyer.  ("bath," "Sawyer, Sawyer," while nodding her head, and "swim.")  There's a lot more to the conversations than that with my full sentences and talking about what we did or will do and Shayna repeating things.

We had a wonderful time at the Sinkland Farm's Pumpkin Festival this last Saturday with Sawyer, Serena, and their respective families.  I forgot my camera but luckily Sital has a great camera phone and got these shots of us.

Shayna loved the animals and even showed off her amazing strength by climbing the fencing you see, while I spotted her of course.  We saw horses, a cow, goats, turkeys, rabbits (which she reached through to pet), pygmy goats, grown chickens, and best of all baby ducks and chickens.

A much happier than last year Serena and Shayna posing in the same spot with the pumpkins.

Shayna and Nahum enjoy ice cream for lunch.

A year ago Nahum had just completed his living donor evaluation.  We revel each day in how far we've come.

Here are some of Shayna's latest activity videos: video1, video2, and video3.

My Amazing Water Baby

Fridays are my days with Shayna and away from the books so we met up with our usual swimming buddies at the new Christiansburg Aquatic Center.  It wasn't as quiet as we'd hoped as there were 3 buses worth of 4th & 5th graders.  Luckily, Shayna loves to watch other kids play as well as has great confidence in herself so will walk right up to them in the water to see what they're doing.  Her favorite was the kids laying under the bucks (see pic left) waiting for them to fill and dump water on them.  She thought that was hysterical.  Shayna also likes to go between the fun, regular pool and the warm therapy pool.  While were not really allowed to go in there, one of our friends is connected enough that the manager gave the lifeguard the okay for us (poor Shayna's lips were turning blue too).  The pic below shows the nice, gradual ramp the kids like to play on so we spent a lot of time walking up and down (or "in" and "out" as Shayna says).  Now this is the amazing part: She's gotten the concept of "under" (the ball rolled under the bed, the duck is under the water) so today she showed me she could do it to herself.  She would squat or lean forward usually just covering her mouth and/or nose but sometimes her whole face with water and hold her breath for at least 2 seconds at a time!  I've tried to teach her to blow bubbles, which she can more of less do, but holding her breath I didn't think she'd understand until much later.

I guess she just picked it up on her own.  This kid blows my mind every day.  The stronger she gets (and we're about to graduate from physical therapy), the more she experiments with her body and all objects and structures around her.  The more she talks, the more confident she is in herself.  She also must have this unflinching trust that we'll always be there to lend a hand or help when needed because she'll just wonder off on her own.  I guess that could be scary for some folks, but we keep an eye on her and take it all in with pleasure and pride.

Life continues to be good.  SJ's getting bigger and stronger and both Nahum and Shayna are noticing it.  Nahum and I got to feel him kick with our hands for the first time Tuesday night and Shayna seems to notice that my belly is getting bigger.  She also asks to see the baby since I say he's getting bigger.  I'm starting her on the word "huge" so I can keep saying "bigger" then add that he has to get "huge" before he can come out to see her.  Shayna also recognizes the letter A and 2 Hebrew letters.  She seems to understand the concept of 1 and 2 and has been working on 3 in the last couple days.  All I do is talk to her about what we do and she just picks things up or she'll ask about pictures (she's got a place mat with letters and pictures).  Shapes and colors seem to be coming along too.

Having Fun In September

Yay for Friday's and time with Shayna (and nap time after that).  I get to play with Shayna on Fridays instead of study for my upcoming engineering exam (only 5wks left).  Today we met friends at the park then went swimming.  Shayna did some great climbing, a bit of swinging and a little sliding.  We also found lamby in the car when we got to the park (tiny stuffed animal from Israeli family, been lost for a month, so small the head just sticks out of her hand when she carries him around) so he got to do everything with her with many a, "Shayna," and, "Lamby," said along the way.  At the pool, she insisted on going in the jacuzzi.  I got her to play in the regular pool for 1/2 an hour before she climbed out, turned to me, and announced, "all done, hot." As in, I'm all done swimming here and now I'm going to the hot pool.  I love how she knows what she wants and tells me.

Tonight we're trying something new too.  Shayna will be going to her friend Sawyer's house (he's out big swimming buddy and they like each other) while Nahum and I go to a retirement dinner for a colleague.  She's never stayed at another person's house w/o us so I'm curious to see what will happen but also excited to get an adult night out.

I posted some September pictures on facebook and some new videos on youtube (video1, video2, video3).  Enjoy.

Holding Steady and Being Amazing

Shayna's Tuesday labs were good again with just normal liver number fluctuations.  Her EBV load in her blood dropped even more, which was nice to see.  We're still struggling with a strange rash that started behind her right knee a month ago.  Initially it looked like poison ivy (we'd gone blackberry picking a couple hours before I noticed it so that made sense) but it didn't go away with steroid ointment.  I also noticed bumps on her palms and soles which the doc said was probably a virus but couldn't explain the spreading bumps on her body.  The back of the knee began to look fungus like so Pittsburgh said to stop the ointment and wash her in Selsum Blue (the selenium sulfide is an anti-fungal).  This dried her skin to the near cracking-bleeding point so we visited the pediatrician again and went back to steroid ointments Wednesday.  Ped thinks it's a virus like HFMD while Pittsburgh's new thought is it could be something to do with the preventative bacterium she's on, so we knocked one oral med off our list.  Two nights with just the ointment change and her skin was already looking much better.  The important thing through all this is that Shayna has been happy and unaffected except during the first week when she was fussier, had trouble sleeping and didn't eat much.  She has been engaging in many feats each day that show how amazing she is.

We had a precautionary ultrasound Friday for which she laid perfectly still while a stranger jellied and probed her belly.  Granted, I did feed her a light fruit breakfast when she was supposed to be on a 10hr fast (ridiculous on so many levels) and brought my computer with Finding Nemo.  I was blownaway by the fact that she just lay on the table perfectly still the whole time.  

She's also getting to be quite a good climber with the ability to coordinate her hands and feet on irregularly placed steps an other "odd" climbing surfaces.  She's started looking at where she should place her feet next instead of blindly reaching upward.

Her language understanding is increasing at an incredible pace.  One daily conversation usually goes:

Shayna: "Aba", Me: "what about Aba?", Shayna: "bye-bye", Me: "yes, Aba went bye-bye.  Aba went to work"  This is the typical conversation about most people and things Shayna mentions.

Today all 3 of us went on the deck to watch the Apache Helicopter fly over.  I'm holding Shayna and she says: "Aba", Me: "what about Aba?", Shayna looks at Aba furows her brow and thinks hard for a few seconds (you can see in her face she's really pondering how to answer this since the usual answer is not appropriate) "Watches" she declares to her parents' utter delight.  Needless to say, I thought my child was the most brilliant child on earth at that moment.  

In the Market for a Mohel!

For those of you not familiar with Jewish tradition, this means we're having a boy!  We were even able to tell on the ultrasound ourselves.  Shayna came and was fascinated by the pictures on the screen.  I wonder what her little brain thought of us, telling her we were taking pictures with a special camera of the baby inside Ima's belly.  She was also a little concerned about me as she had to be on the table with me the whole time she was in the room or she would cry.  SJ's estimated weight was 13oz +/- 0.9oz.  We're excited to know and I'm excited about the shopping I'll get to do (after I get all of Shayna's stuff packed away properly).

Shayna is doing great.  We had labs today and, while she wiggled much more than usual, she didn't let out a peep.  It was also teaching day for Nahum and Becca.  They each now know how to get Shayna's lab stuff together and where to take her for the blood draw.  Becca also got a tour of the birthing center (they're at the same hospital).  We're all ready for SJ and any issues along the way now.

Shayna's physical therapy is almost done.  The only thing she can't do is climb onto a straight-backed (dining room) chair so we're still doing a lot of climbing and crawling exercises in addition to the core strength bouncing and jumping.  She's well ahead of the curve as far as language goes with well over 50 words, some in both Hebrew and English.  She likes to tell us about everything she does and sees.  She'll even read some of her books to herself, pointing out the different animals (I heard her for the first time yesterday).  She loves books and loves to study each page of whatever the current favorite is (right now it's any monkey, dog, or new baby book; though, any animal book will do).  For those of you who aren't on FB, you should check out our latest youtube video at http://www.youtube.com/watch?v=OM-sXfguaUk. Shayna also likes to help me in the kitchen these days.  I measure the ingredients then she pours them in the bowl.  She's also good at handing me eggs but not so much the stirring.  Here's a picture of us with our Rosh Hashanah challah.

Half Liver Life

Shayna has now lived a day longer with her Aba's liver than she lived with her own.  She celebrated by throwing rocks with friends and swimming in a creek at our end of summer picnic.  Unfortunately I forgot to bring the camera to the picnic but I did get a nice shot of her with her friend Hannah at the neighborhood bbq.  (Shayna is always talking about Hannah.)

Just being cute with her balls.

Awesome Numbers (finally)

After 2-1/2 months of a gradual climb in all of Shayna's liver numbers, we saw a significant drop in them with Wednesday's labs.  While not alarmingly high, we would have had to do a biopsy if they had stayed in that slightly elevated state much longer.  She's also still growing quite well.  Her weight is about 25%-ile, height about 10%-ile, and her head circumference is off the chart (literary).

SJ is doing well.  I ask Shayna, "Where is Ima's baby?" and she pats me (she tries for the belly but any torso part she can get to works for her) and says, "Belly."  I feel stronger kicks all the time.  We will find out the gender some time in the 2nd half of September.