Pittsburgh: Part II

So, we obviously made it home; though, it was after 7pm by the time we pulled into the garage.  We bathed the kids and put them to bed.  Elijah and I promptly got colds from the endeavor but Shayna was her usual perky self.

We made it to her last day of swim class the next morning.  She did so well and we had so much fun that I signed us up for the second session.  She's getting more comfortable on her back and is getting more bold when picking stuff up off the bottom of the pool as she'll put her chin and mouth in the water now.  It's been great working with her in a learning with teacher introduced games environment.

The following Monday, we fed the ducks at the VT duck pond.  Nahum joined us from the office and we both marveled at Elijah's reaction to his first duck feeding session.  His eyes were glued to the 30 or so ducks bobbing in the water or waddling near by hoping to catch some crumbs.  For half an hour, his little brow was wrinkled and his eyes fixed in concentration.  I'm learning this is his usual reaction to new places and things.  I moved him from the living room to the breakfast nook so he could watch me make dinner.  He didn't touch his toys for 20 minutes while he took in everything from the new vantage point.  Today Nahum held him while I put toppings on the pizza and he was fascinated.  Life is such a puzzle but he's bound and determined to figure it out.

Elijah and I slept and recovered while I got back into the swing of regular life.  I got to the pool 4 times for some short but mentally refreshing workouts.  The only one I missed was Wednesday when I got two late message from Shayna's transplant coordinator just as I was driving to swimming.  I had to turn around in the parking lot and come home to administer some new meds for Shayna.  The final results of the liver biopsy had come in.  She's in rejection again.  It's extremely mild and only effecting bits of the liver, but nonetheless it is rejection.  She gets a small, daily dose of the steroid prednisone to fight the rejection with pecid and nystatin to keep some of the side effects in check.  I've finally introduced chocolate milk into her life to help her swallow two extremely bitter prednisone pills. (Michael, do you remember the battle we had to get her to take prednisone after she was first released from CHP?) The first two days she bit them a bit while I encouraged her to drink her juice and swallow not chew.  She did this little spastic quiver after each bite.  Yesterday I introduced chocolate milk hoping it would coat better.  Today I think she actually swallowed the pills without biting.  I'm still amazed she let me pop them in her mouth after the first time.  She just dutifully opens and tries to swallow as instructed.  She's also learned to swish the nystatin around in her mouth before she swallows, per the bottle's instructions.  It's pretty cute how into swishing she gets.

On our first stop of the drive home from Pittsburgh.  I bribed Shayna to sit still while nursed Elijah with a lolly pop.  I was going to the car to get the bobby to nurse under this tree when I looked back to check and saw how cute they were so grabbed the camera too.  You can see a bit of Elijah's furrowed brow look here as he tries to figure out what Shayna's eating and how he can best get some too.

Chilling out and watching the umpteenth episode of Curious George to survive the drive.  Her dog is under her foot in the cup holder.

Pittsburgh Mad Dash

Last week, the kids and I drove to Pittsburgh on Tuesday for a Wednesday biopsy then drove back home Thursday.  It was an emotionally and mentally draining experience (main reason I haven't written).  During medical things like that, I always live in this heighten state to that I can deal with and move smoothly through any situation that might arise.

Wednesday the 6th labs came back with another spike so Thursday afternoon at 10 minutes till 5pm (I was on my way to the swim meet) I got an email from Meredith, Shayna's transplant coordinator, that the doctors want her to have a liver biopsy.  I was proud of myself for not freaking out about having to wait until Friday to start making plans when all the offices opened again.  We initially tried to schedule it in Roanoke but never could get Interventional Radiology to answer the doctors questions so Monday we made plans for a mad dash trip to Pittsburgh.  A couple calls to friends there and we had a place to stay and someone to watch Elijah Wednesday.  Yet again, I went into something rough feeling blessed and fortunate.

We left just after 9am on Tuesday and got to the Hertzmans' just after 5pm.  (The Hertzmans' were the family that made Pittsburgh home-ish and Shayna's first birthday a party.)  Shayna took to Adam right away, following him around and playing with him on the play set in the back yard.  She loved all the new toys as Monica and Adam have two older boys, Noah who's 9 and Jonah who's 7.  Noah even let Shayna have his room for two nights while he bunked with his brother so I didn't have to share the guest room with both kids.

Wednesday morning, I had both kids at Children's Hospital of Pittsburgh (CHP) at 6:28am, a whole 2 minutes early and I have never even been on time with both kids in tow to anything before that.  Our friend from Blacksburg Katie, who moved to Pittsburgh a year ago, showed up at 7am to get Elijah.  Her two kids (5yrs and 3yrs) stayed home from summer camp to "help" her take care of "baby Elijah."  (It was fun to hear about their learning experiences afterward.  (They were shocked to see that Elijah mainly easts milk, where it comes from, and that they once nursed just as Elijah does.)

My time with Shayna went amazingly well.  She asked for water a couple times in the morning but didn't complain when I told her she could have any because "it would make it hard for the doctors to look at [her] liver."  She talked and played with everyone that came in our door and even got tossed in the air a bit by one of the doctors.  We were in the procedure room right on time (another first) and an 1 1/2 hours later I was sitting by her side as she slept in recovery.  She whimpered when she eventually woke, asked for milk but was happy to settle for juice, then she climbed into my arms.  She whimpered a little again, I said, "you feel weird don't you? It's okay because Ima is going to sit here and hold you until you feel better."  The after effects of anesthesia can be quite disorienting for kids which is why Shayna usually screams afterward, but that statement seemed to appease her.  For the next 1 1/2 hours, I held here while she drank juice and we watch a movie.  Then she was Hungry.  She ate French toast, a mango, and 1/2 a cup of blueberries that I had brought and 3 chicken tenders with ranch dressing from the cafeteria and drank lots of water.  At the end of our 4 hours of "laying still", Shayna went to the play room and happily played with a volunteer while I pumped.  Her friendliness and go-with-the-flow attitude amazed me all day.  We had another 2 1/2 hours of waiting around at the hospital before her ultrasound appointment that afternoon so we ran and shrieked and tickled and laughed all over.  She even made a little friend.  The ultra sound went smoothly and she happily walked out with 5 new stickers.  It was a 10 minute drive in but a 30 minute drive home since were were leaving just when rush hour was starting.

It felt so good to just lay in the grass for half an hour while Shayna played on the play set at the Hertzmans'.  After Katie brought me Elijah, we got to talk a bit while I flopped around getting the kids to bed.  It was wonderful to speak with a normal adult after spending all day with a 2 1/2-year-old and lots of medical staff.  I managed to finally get them to sleep late again then got ready for driving the 325 miles back home the next day after our morning clinic visit.  The thing that kept me from losing my mind: Adam washed all of our various plastic containers, sippy cups, and bottles.

The next morning we saw Dr. Sindhi who said the ultra sound looked great (no flow issues of bile or blood) and the early results for the biopsy showed no rejection; though, testing would continue for the next few days including looking for viral attacks.  We met our new transplant coordinator Meredith who is very nice and shaping up quite nicely to be a good transplant coordinator.  She doesn't answer questions as directly and concisely as Alice did but she shows promise there.  The other important thing is attitude when reacting to parents' questions, not reacting to our questions like they're silly and juvenile, and she has a Great attitude.

Here's some pictures but I'll have to finish the story another day.

Making friends: She and Ava played for 1/2 an hour while us moms got a break.

Sharing stickers.

Elijah became a sitting baby that week.  He was still tippy on Monday, could sit for 10-15 minutes when not tired on Tuesday, and could pick things up without falling over on Wednesday.  I was blown away by how quickly his skill improved.

Playing with Katie on the floor at the Hertzmans'.

Listening to Noah play.  She loved it.  I hope she remembers these things and wants to play a musical instrument some day.

Waiting Out the Storm

This was written last Thursday July 7^th.  I wanted to get it posted so it will be in the blog book I order.

Started: 5:20pm

It’s Thursday night again and I’m at another swim meet.  Unfortunately a thunderstorm is also at the meet so we’re on hold and hiding in our cars (it’s an outdoor pool).  We can swim in the rain but not the lightning.  Best case we’ll still swim but only do 2 events (50yd back and breast) and skip the 3^rd (100yd free).  I’m a little sad about it as I miss so much Shayna and Elijah time to come to the meets but I’m still hoping we swim as I’m curious what my times will be since I did both events at the first meet of the season.  Did I get any better?

Shayna went to the dentist today for another a-okay check up.  As a bonus,  she didn’t cry the whole time this time.  In fact there was only one moment of tears and a few moments of whimpering.  The chair laying back is what freaked her out the most.  We found out she’d cut her first two (lower) 2yr molars.  They’re each about 2/3 visible. 

I went with her to gymnastics class for the first time Saturday morning.  (Becca had gone with her twice before.)  The main thing she’s learning there is how to follow instructions.  There’s different obstacle or balance courses set up, the kids (and parents) have to sit and listen to the instructions, then we go through the assignment together.  We started out on the tumble track (a 4’x50’) trampoline that ends at the foam pit.  She had to hop down the track (not run like she knew how to do), hop (or get dropped for Shayna) into the foam pit, climb out, step onto a block-pad, hop off the other side (about 6”-8” drop), crawl through a tunnel, get boosted onto a 30” wedge mat, and do a summersault down.  I was most impressed with the jumping down as I hadn’t seen her do that before on her own and land on both feet without falling.  The summersault is assisted: “hands on the ground, look at your belly button, and over you go.” She seems to enjoy herself and practicing the new challenges so I think it’s okay to keep going.

Elijah celebrated 5 months of breathing air for himself yesterday by being extra cranky.  I think he’s finally (after 2 months of drooling) cutting his first teeth.  When I put orajel on his gums and give him a dose of acetamenophin, he’s back to my happy baby for the next 4-6 hours.  His daytime sleep is finally starting to level out as he’s been preferring to be away for 1 ½-2 hours at a time instead of the 1hr he’d been sticking with since birth.  He rolls over like a pro (both ways) these days.

5:40pm: It’s raining but not pouring yet and I can hear thunder.

We started late (6:30) with no warm ups and I only swam the 50 back and breast (there was a 100 free that I skipped).  It was fun as usual, both the people and the swimming; though, my times were only so-so.  The back was basically the same because I kept stroking under/running into the lane line.  The breast event felt good and improved a lot from the beginning of the season.

Elijah loves him some Sophie.  He gets so excited when we show him Sophie.  His hands and arms flap wildly as he tries to grab her as quickly as possible.

Shayna playing a favorite game: "Where's Shayna?"

Shayna helps Nahum cool off after a workout.

My Daughter the Swimmer

So that whole swim class thing is kind of fun.  We pay attention to the teacher about half the time and work with Shayna on my own or just let her do whatever she wants the other half.  We just keep it fun and so far that’s what she’s been having.  We received our halfway report cards and Shayna’s “mastered” all the “skills” our teacher Ms. Hannah has taught.  Hannah also said she’s going to start looking through the next class’s skills set to see what else we can teach Shayna.  We’ve been going back the last two mornings for free swim time after an hour at the park next to the pool.  It’s been a lot of fun to play with her in the water, pushing her to the ladder so she can climb out to jump in.  She squeals with delight when I push her and let go for half a second before she grabs the ladder, squeals with delight as she contemplates the jump to my arms, and squeals again after I catch her.  We do a lot of paddling, kicking, blowing bubbles and grabbing toys from the bottom too.  (Since it’s just her and I that’s the best I can do for pictures.)  Becca brought Elijah on Monday to join us for free swim.  Elijah “swam” for 45min kicking with the cutest little frog kick and hoot/cooing the whole time with pleasure.  I’m so happy to have two water babies.

I’ve been swimming a bit myself.  I joined the local summer swim league (same one I did last year) so I swim Mon, Tue, Wed & Fri and we have meets on Thursday.  Mon-Wed Elijah goes to sleep before I leave, Becca helps on Thursday and Friday, and Nahum puts Shanya to bed each night.  I’m pretty exhausted physically and my muscles are still sore everyday (it’s my third week) but it’s wonderful to be doing something again.  There is another month of swim team stuff.  By then, I hope to be in good enough shape to make doing stuff on my own pleasant.  Luckily, if it’s not, I can still do masters swim in the evenings.

Here’s this evening’s riddle: If all my 50yd individual stroke events (fly, free, back, breast) are 3-8 seconds slower than last year, why did I swim the 100IM 3 seconds faster today?

I posted some pictures of the kids on facebook today.  Here's my favorite.

Elijah's loves him some sweet potatoes.

He's on the Move...Kind of

Elijah is rolling back to belly and belly to back.  He likes being on both; though, he's been sleeping on his belly for quite some time (I put him there).  Here's a video of his latest effort.  We also started solids about 3 weeks ago.  He likes carrots, banana, prunes, and applesauce.  The fruits get him going, "hmmm mmm hmmmm," as he sucks the food into his mouth from the spoon.  He does not like green beans or herb chicken.  I think the herb was a little much so we're going to try some plain meat tomorrow.  

His eyes and actions show more understanding of lauguage because he seems to be responding to things I say like "do you want more?" he'll turn his head and open his mouth if he does.  He also knows his name.  We also had 3 peepees in the potty today.  Each time he got a little fussy so (knowing other things were good) I took his diaper off, popped him on the BBLP and he peed right away.  He even grinned at me as I made the cueing noise "psssss" while he went.  Most days I'm lucky to be aware enough for one pee so I'm actually proud of both of us.

Nahum is in Germany (Happy Father's Day) so I'm playing almost single mom (thank goodness for Becca).  Hannah and Yael came over for an hour this afternoon to help me keep my sanity.  Hannah and Shayna played with water both in and out of the pool while Yael and I chatted mom and grown up talk.

Shayna is continuing with her extra clinginess to Ima.  She's also playing more intensely with her own baby dolls.  We have one she can take in the pool so she's been washing, drying, feeding and hugging it.  My favorite though is when she throws the baby on the ground, says, "Oh, poor baby.  The baby bonked its head. Come here baby," and she gives it a hug and pat.  Here's a video of Shayna pumping milk.

I did today what I said I wouldn't do until she was 3 or 4 and signed Shayna up for a swim class.  I always said I thought it was best if they just got the feel of the water regularly and developed their own comfort and familiarity with the water.  It's a parent/child one so I'm not drifting too far from my statement.  I wanted something that would force us out of the house and this is at the closer pool that doesn't offer free swim till 11am (too late for my early napper).  Plus, I'm curious what a "class" like this is like.  We start tomorrow.  (Elijah will hang out with Becca.)

They both Enjoy watching PBS's Curious George shows.

Watching George together on the couch.  Elijah stays up right fairly well...

...but not perfectly.  Luckily his sister loves him.

"Where's my dinner, lady?"

Another Beautiful Day

We've been enjoying lots of kiddie pool time and friends in the week we've been back in Blacksburg.  Today was no exception.  Shayna, Elijah, and I went over the our friend's house this morning for some pool time.  Hannah (almost 4yrs) and Shayna splashed in Hannah's pool and watered all the trees in the front yard while Yael and I enjoyed enjoyed each other's company and baby boys (Noah is 2 weeks older than Elijah and just as cute).  We saw Hannah and her dad Fredrick again in the evening with our other good friends Lynn and Gray.  We were going to go to a local pond where there are some boat demos going on to take the kids out in the boats and enjoy a pot luck dinner.  The weather had other plans so we invited everyone to our house while the thunder crashed and the rain poured.  Hannah and Shayna chased each other around the house and jumped on every bed we have while Elijah entertained us with his stories of the day.  (That boy is turning into a little chatterbox.)

The trip back from Israel was long but uneventful.  The kids were again angels and slept 9hrs of the 11hr flight over the Atlantic.  It was a little rougher adjustment but within 3 nights Elijah was sleeping through the night again.  Nahum battled Shayna's virus so probably had the roughest time adjusting.

Next week we've got a visit from Grandpa Michael, 2 playdates, 2 doctor's appointments, and a free day I'm hoping Michael and I can use to take the kids to the zoo in Roanoke.  I've never been to that zoo and they have a train I think Shayna would get a kick out of.

Meeting up with some Israeli Blacksburg friends whom we miss a lot, the Alkahers.

Shayna manages to find dirt where ever we go.

Shai used to babysit Shayna when she was a couple months old.

Shayna in the midst of her cousins Dan-Dan, Ben, and Yalka.  (Shayna's the little green dress.)

Our last Shabat dinner in Israel.  Sofi bought all the kids their own little challahs.

Ben reading to Shayna before bed. Shayna wanted used to take Ben home with us.  She still talks about him going on the "big, big airplane to visit Shayna's house."

Nahum showing his kids Donald Duck on youtube.

At home, my incredibly talented son has learned to use his hands to get toys to his mouth.  I'm such a proud mother.

Enjoying each others company.

My Sweet Daughter

"It's time to go to the hospital so Monkey can listen to Elijah's vagina," said Shayna as we headed out the door Wednesday afternoon.  I love what 2-yr-olds put together.  1) We were going to the hospital and I had attached Monkey (Shayna's stuffed monkey and favorite toy) to the backpack as a comfort item.  2) We listen to Elijah's heart beat regularly as a precaution in case he has a tachycardia episode.  Shayna likes to help and listen as well.  3) We had to take Shayna to our local hospital at home for some unrinary tract tests involving a catheter and radioactive dye.  She remembers well the catheter and is still talking about "the lady looked at my vagina." (It was not a pleasant experience for the poor child.)

Nahum and Shayna finally got home just after 5pm after a very long, uneventful day at the hospital.  The ultrasound of her liver looked good and the liver numbers had gone down.  We'll repeat labs on Monday in Virginia and just enjoy the rest of our visit until then.

I was wrong about the spots on Shayna.  They've doubled since yesterday but I'm posting a little video of her in the bath post hospital to show you that she's still in good spirits (It's loading right now but if you go to my youtube channel in 15min it'll be there.  www.youtube.com/mrsarava. Just sort my videos by date to find it.).  She was quite a trouper today and didn't give her Aba any trouble, just the medical professionals.  She knew what was happening from the moment she woke up with, "remember we went to the hospital?  We have to go back to the hospital and do more labs."   She doesn't seem to let it affect the rest of her life as she enjoyed our evening visitors and their little dog then jumping around with me on the deck/patio like it was a normal, fun, toddler day.

Here some pictures of Shayna and Nahum from the beach trip with Yael and Kobi.