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.