The Amazing Growing Baby

For all you chart and numbers people out there, here's Shayna's latest growth chart from 12-months to now.  The astounding thing is the 330g gain between this week and last week.  I wouldn't have believed it except we had a doc apt on Tuesday that show her at 9.8kg making the 9.91kg (21#13.5oz) today plausible.  (That's a jump from the 17%-ile to the 24%-ile.)  She doesn't show any obvious fat rolls from the gain and her belly actually has looked smaller this week (her large liver piece still makes her belly girth much larger than normal) so I'm wondering if she got taller too.  She's definitely getting stronger as her climbing skills and little shoulder muscles are much more evident.  My guess (from past experience) is she'll hold steady and take a couple weeks to actually reach the 10kg (22#) mark.

On the internal numbers side, things looked good this week.  We just checked liver numbers this week and they were holding steady with the last two weeks making both Shayna's doctors and parents happy.  If the numbers go up we're looking at another possible rejection episode and, with her immune suppressing drugs low, there's a distinct possibility of that.  Right now we're fighting the EBV (a virus that causes a harsh flu in normal people with the worst case leading to mono; in an immune suppressed person it can lead to EBV hepatitis where the virus attacks the liver and worst case leads to lymphoma (cancer)) so we've had to drop her immune suppressing drugs to try to get the active virus level in her blood stream down before it attacks organs/tissue.

On the fun side, we did a little family outing today of the Blacksburg Gardens Tour and saw some beautiful gardens that people have put tremendous work into.  My favorite was the yard with lots of curving beds with colorful, textureful plants that looked like wild organization.  Shayna liked that one too but for another reason; it had a water fountain.  Her second favorite was the one with rocks and dirt she could play in.  She likes to show us the rocks and sit in the dirt, picking up fistfuls to pour on her legs.  She also really started saying "Aba" and "Ima" today quite distinctly and in context.  She's been able to say both for a while but just didn't want to until today.  Nahum turns into a little puddle on the floor every time she says Aba.

Bubble beard baby from 6/25.

Ups and Downs

Labs are back at every week for a little as Shayna's EBV went from it's holding pattern in the mid 60,000s to 170,000.  We only check the EBV every other week but we have to watch the liver enzyme numbers weekly in case they start to elevate, which indicates damage is being done to the liver.  We're back on the Valcyte (yucky-tasting anti-viral) but totally off prednisone (the steroid that suppresses her immune system on top of the lifetime immunosuppressing Prograf).  That's the bad news.

The good news for all you Shayna fans is that I've got 5 new Shayna videos on my youtube channel http://www.youtube.com/mrsarava and my husband bought me a new car today.  We are now the proud owners of a 2011 Toyota Sienna XLE.  For all you non-facebook people I posted May pics last weekend and am working on sorting the June pics of the princess.

It's the baby's bath time so I better get going.

So Big

Happy 16-month Birthday Shayna!

We did her monthly measurements and boy did she grow.  She is 440g (15.5oz) heavier, 2.5cm (1") taller, and her head is 1/2cm larger since last month.

Ht = 73cm (28.75"), since it's height not length it doesn't work in the 0-36m growth chart
Wt = 9.50kg (20lb 15oz), 16%-ile
HC = 49cm (19.25"), about 98%-ile or off the chart as the chart only goes to 97%-ile

Her achievements for the week: She learned to kick her feet in the pool.  It took a month of working with her (only swim 1 or 2 times a week) but she finally understand the command, "kick your feet."  She does more of a dolphin than a flutter kick.  She signed, "potty" to me for the first time when she had to go and didn't know where it was (we were at a friend's).  While she'd started in her pants, she finished in the potty so I was still quite impressed.  She's done it once more but that's it.  Maybe another month and we'll be there.

Good News from Pittsburgh

We had our six-month clinic appointment in Pittsburgh Monday.  As usual, Gerry and Judy made Pittsburgh home by hosting us even though they just got back from 5 weeks over seas.  Since they've taken her as an honorary granddaughter, I think they enjoy our visits a little too.

Shayna's favorite thing about the visit was the stairs at Gerry and Judy's house as they have a 2nd floor so she got lots of stair practice and improved her down technique a lot.  There is also a 1/2" step into the kitchen that once she tripped on it and realized it was there became another favorite.  She practiced stepping into the kitchen and out of the kitchen.  It was so much fun to watch her walk back and forth and get better at handling the slight elevation change.  (When we get a chance to watch her discover things or practice skills without her seeing us, it is so amazing and fun to watch how much effort she puts into things and how quickly she learns and enjoys herself.)

Ima and Aba's favorite things were getting to talk to the doctor face-to-face, having 1/2 her meds dropped (especially that yucky anti-viral Valcyte), and having labs moved to every other week (from weekly).  It was nice to have the Dr. Sindhi give us such a thorough explanation of where he thought Shayna was and his opinion on our EBV issues.  Plus the fact that it was all positive; he thinks Shayna is doing great and he also stressed really treating her like a normal child with a little extra hand washing.  (It's nice to hear that what I do is good.)  Dropping so many meds just makes every day so much easier and the thought of any travel much less intimidating.  (I had no idea how we were going to get the Valcyte in her while camping this summer short of having my dad and uncle perform various skits for us every morning and evening.)  If the labs continue to be good, we could be moved to monthly by the end of the summer or sooner.  It is so wonderful to be within the normal range AND on the less complicated side of normal too.  It is also nice to see how happy the doctor and nurses are to see a happy, health, thriving toddler whose life they transformed.

Shayna's vocabulary is slowly expanding.  She says "eye".  She surprised me today by saying it and getting my attention to a picture in a book with lots of eyes (the bugs where hiding for miss spiders surprise birthday party).  Shayna wanted to make sure that she had identified the things on the page correctly and was very proud of herself when I agreed that they were indeed eyes.  She says both "hi" and "high".  While she says them in context (as a greeting and when I push her high on the swing), I really wonder how her little brain differentiates between the two.  I spotted her first little molar pointing its pointy head through her upper left gums last Tuesday.  It was nice to finally see progress after 2 months of chewing on fingers and drooling.  She has bumps on the bottom on both sides so she should be able to eat steaks soon.  She runs now.  Her upper body gets going a little faster than her legs so if she's not careful (eg we're playing and she's excited or she tries to run too far at one go) she does a face plant.  Her favorite place to practice is our closet (it's a big walk-through).  She goes over to the bathroom door, hoots at me to get my attention then runs through the closet to our bedroom, looks at me for praise and turns around to do it again.

Nahum and are doing well.  Nahum is currently trying to get though 80 proposals (like the ones he puts so much effort into himself) because he will be sitting on the panel judging proposals for NASA's Chandra X-Ray Satellite next week in Boston.  I joined the swim team last week at the B-burg Aquatics Center.  Since my friend is on a "competing" team, I am much more excited about actually practicing.  We're fairly evenly matched, but she's been doing a much better job than I at getting to the pool so I'm going to have to start working hard if I hope to beat her at anything.  I'm reading my first Danielle Steel novel.  It's low grade writing but the characters are all nice people so I think I'll finish it.

Pictures of the Princess:

6/2 Shayna plays with her toys in her beloved kiddie pool in the back yard.  That's my current favorite 4-5pm activity.  I moved to pool to the deck (gnats in the grass) so I can just sit in a deck chair and watch her play while I read.  She loves to climb in and out and fill and pour out her stacking cups.

6/5 Shayna enjoys an apricot on the kitchen counter.  She'll eat 1/2 of it then give it back to me.  I also have to be careful of the pits.  If she bites it before I take it out the apricot gets flung violently away from her.

6/5: Enjoying the hose since her pool got over run by older kids (2 1/2, 3, and 5-years).  She loved watching the water run down her arm or trying to drink from the hose.

6/11: Enjoying a snack while I get dressed after a play date swim at the Aquatics Center.  I had to fish her out of the water several times as usual as she still likes to walk in to her armpits but has trouble always staying on her feet.  At least she doesn't cry about it.  Just coughs a little, recovers for a few seconds on my lap, then goes to play again.

6 Month Anniversary

A lot happens in 6 months.  I handed a very sick baby over to a team of medical professionals for a life saving, 10-hour surgery.  Yet, only 6 months before that, Nahum and I had a healthy baby girl, for all we knew.  I was getting ready to go back to work and start Shayna in daycare.  6 months can sure be a long journey.  Thankfully these last six have been a beautiful journey with a vibrant, strong, independent little Shayna just bursting with life.

We had a magical water weekend over all 3 days.  It started with a little hike at Mountain Lake with friends down to the water (it’s a “little” low) where Shayna and I went swimming.  It was a bit chilly but Shayna loved splashing, stomping, and wading in to her chest.  Sunday I set up her kiddie pool which was shallower but colder.  She climbed in and out, stomped, splashed and laughed until I decided she was getting too cold.  Later that evening we had a thunderstorm pass over so I took Shayna out in the rain in just her little onesie.  She held her hands up as the rain hit her and just grinned at me then took off at a trot down the driveway pausing to look back to grin at me or stomp in the water.  Yesterday we met friends at Claytor Lake (a damn on the New River) for some swim beach action.  Shayna was so excited by the boys swimming around that she tried to join them.  (She thinks holding my hand will get her anywhere.)  She would shriek and splash whenever they got near.  Today we continued the swimming trend and met another friend and her 15-monther at the Blacksburg Aquatics Center for some play.  They’ve got a really wide ramp and shallow swim area leading to the lap pool where the kids can play.  Shayna loved walking up and down the ramp.  When she held the hand rail I didn’t mind so much as she could keep herself from going under, but she’d just head out down the middle of the ramp at times with no concern for the fact that at armpit depth she couldn’t keep her head up if she fell.  Needless to say, she did go under a few times.  She also fussed every single time we had to leave the water.

She has a couple other recent achievements that I’m quite proud of.  She can go down the little and big slides at the parks by herself.  She does it feet first on her belly.  This helps both in not losing control on the way down (she’s already laying down) and she can get off the bottom of the slide easily too.  The other amazing thing she did was say, “hep, hep,” without prompting this morning for me to come help her go peepee in the potty.  That's the first pre-pee, verbal communication I've ever gotten.

My fun was of course all those things with Shayna but I also had a swim lesson on Friday with a friend and a good coach.  It was wonderful to get some simple, helpful guidance on all 4 strokes.

Last Thursday, Shayna and Becca play in the rain.

Becca is teaching Shayna to stomp in the puddles. She caught on right away and has turned bath time into a little bathroom hurricane.

Shayna checks out the hail pieces we grabbed for her.  It was her first hail experience.  She melted them in her fist and ate other pieces.

Shayna, Patricia, Hannah and Fredrick splash around in Mountain Lake on Saturday.

Shayna's 2nd dip was al-natural with some swimming.  Here she is hiking back on the docks that used to float.  Check out her awesome new shoes.

Relaxing with Aba in the shade and watching the boys swim at Smith Mountain Lake.

"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.