Little Mishaps

We're fairly snowed in here so transportation is hard to get.  I managed to get a cab scheduled for yesterday morning at 6:45am to take Shayna and I to labs and clinic.  The driver called me @ 6:30 to see how to get to me without getting stuck on our street.  I said we'd meet him at the corner of the main road because it's fairly clear.  He decides to try to be a hero anyway and as I'm loading Shayna up in the entry I hear the "vvvvvvvvvvvvv" sound of tires with no traction.  I spent the next 30 minutes helping our driver try to dig out his cab before a truck from his company came to pull him our of the snow bank and back into the snow ruts on the road.  The rest of the drive was sloppy and skiddy but we made it there just before 8am.  Shayna was grumpy because she'd woken up at 5am and was still tired so she cried when they drew blood and was not interested in being bothered by anyone except Ima.  The talk with Dr. Sindhi finally helped me understand Shayna's EBV-PCR numbers.  It's basically a super sensitive test that looks for active virus in her blood before it infects the tissues.  Right now, Shayna has the active virus floating around her blood stream but it has not infected any tissues.  It could stay like this for a while and not cause any problems but there is no way to predict one way or the other.  However, problems it could cause are severe and difficult to treat so we stay put until nothing happens for a while and we go home or something happens and we go to the hospital.  On the bright side, we're down 3 more meds because of the high EBV (one of them was 5ml too) so only have 6 that we give her.

The good new was Shayna gained ~150g for a naked weight of 7.25kg.  She really likes to feed herself so I am continually challenged to find nutritious, delicious, and calorie dense food that she can pickup.  Babma has replaced rice/oatmeal baby cereal and the exersaucer from the Hertmans has become snack zone since it's the only thing we have with a tray around it.  We've also been successful with canned fruits (in pear juice not sugar added syrup).  She master sippy cup drinking this week.  She now knows which piece goes into her mouth and that she has to tip it up to get liquid out.

An interesting coincidence: both my computer and cell phone quit working on the same day 2 days ago. My cell is under manufacture's warranty so Verizon is sending a new one (yay!); however, the computer is 5 years old and has been giving me the blue screen of death almost everyday for the past month.  If I were home, I would have wiped it clean and started over with many phone calls to my dad and my software disks.  Now it simply won't turn on; however, there is a computer repair place around the corning with a sign saying if I bring my computer in they'll do a free diagnostic.  It's worth a try.  For now, I have Nahum's cell and laptop (he's got a real computer at the office so leaves it home anyway and they're gave him a phone a couple weeks ago).  It's nice having a husband that shares so well.  (I did save all my documents and pictures to dvds last week.)

Nahum has an infection at the surgery site again.  This time he's been given antibiotics for 2 weeks but they shouldn't knock him out like the last ones.  He's been on them for 2 days now and seems to be responding well and still able to function as he's still putting in long hours at the office and can play on the floor with Shayna in the evening.

We're both anxious to be home to find our new normal and quit living a life so up in the air but are thankful to be able to have such a wonderful life here.

Home Coming Postponed

We have to stay through next week because Shayna's EBV numbers have continued to climb.  We had both the prednisone and prograf lowered today and are looking at a possible liver biopsy if things don't improve by Thursday morning to see if anything more serious is happening.  Instead of the bottom of the 3rd tier, she's now 1/3 of the way through it.  If she hits tier IV, she'll be admitted to the hospital for IV anti-viral medications.  I've extended our lease and canceled our moving help.

She's officially switched from a 2-nap-a-day baby to a 1-nap 1-yr-old.  (My little girl's growing up!)  That should make planning outings so much easier and I'll be able to stop at the store now on the way home from labs.  She's getting much better at feeding herself (things in her fist were inaccessible, now she's gets them 1/2 the time) and climbing everything.  She enjoys her new found scooting freedom as she can get to toys w/i a 3' radius of where she's placed.  I've put a few outlet covers in the outlets she's discovered but she still can't get to much so I haven't really had to baby proof anything. 

Here's today's pic of the day: I was walking her to the table for a snack and she decided to take the abacus with her.

Gerry and Judy Our Heros

We had to get Shayna to labs today, our car surrounded by walls of snow, the plow had not gotten to our street, and we've got the worst tires possible for driving on snow.  I decided to take her in the afternoon (works better with our prograf dose schedule anyway) hoping the roads would be a little clearer and I could take a cab.  So at 3:30 I call Yellow Cab to see if they could get me to the hospital between 4:30-5pm.  No dice.  I then looked at the bus schedule.  It's a 2-bus, 1hr trip on a normal day.  So pulled out my last resort card and called Judy, my good friend's mother-in-law who has been helping us with everything from the very beginning.  She and Gerry were at the grocery stocking up for the next storm (current predict up to 10") and the store was very crowded.  None the less, they came to my rescue and picked Shayna and I up at 4:20 with a carseat already in the car.  The drive to was a little sketchy but not bad, lab took 25 minutes, but the drive home was another heroic effort of 60 minutes.  Without these labs results back by our Thursday Dr. apt, we won't know if we can go home so I had to get to the hospital for it today so Gerry and Judy saved the day again.

Shayna is her usual amazing self and has begun to listen to instructions (like "stay" when she wants to worm and squirm for a diaper change).  She goes through these intellectual and physical leaps from one day to the next and just blows us away.  When she stands in her crib, she's still scared to let go to sit again so needs rescuing when she's tired.  (When she just wants to play, she'll get up and down no problem.)  When she's tired she just gets overwhelmed and works herself into a fit.  Luckily she'll go straight down with a little calming.

Nahum and I are concerned the approaching storm may delay our home coming by a week.  And I have no idea how we're going to get to the hospital on Thursday if it really snows 10".  We'll figure something out.  What is life without a little excitement.  At least they plowed our street while I was out.  Now there's only 4" of packed snow.

 

Here the princess is at the bottom of our front steps on Saturday.