Continuing the festivities of the t-day holiday, we had tickets to Disney on Ice, in the new Wells Fargo Arena. [Quick Rant] The facility itself is great, nice building, I think nice restaurant in it, however the standard food service help, as well as standard concession select SUCKS EGGS, very dis-appointing each time. [rant off].
Daddy got to go this year, as momma was still trying to recover from surgery.
Also this year SHQ got to see another show in the Arena, first being Cirque REDux. Disney Ice was a great show, told the story of Lilo/Stitch, 101 Dalmations, Peter Pan, and The little Mermaid in huge 2+ hour show. Bubbles, fireworks, every sea creature imaginable, and lots and of skating. All the kids were pretty much mermerized, and didn't even break the bank with some pop, popcorn (we brought sandwich bags to give everyone a little bag of there own), and a little mini boxes of candy as well, since they don't have much a candy selection either there.
SHQ was introduced to Mickey, Minnie, Donald, Daisy, and of course Goofy as thei narrated the stories, and transitioned between as they went on their vacation going to exotic places.
This year there was a new mouth to feed at the feast tradition of Crackel Barrel Turkey dinner on T-day. Shae this was your First T-day since coming home! I hope that you have enjoyed the hawl-lee-day, as much as Aubree has that couple years as well.
We get up and out the door shortly after 10am each year so that we can be at the desk in CB restaurant and beat the rush to get our name in to be seated for the t-day dinner. It starts at 11am and gets crowded for the wait at the same time. We mull around the store side waiting to be seated and pray we get one of the round tables though any table will due. The adults get the dinner, and TQ, and SHQ get the kids dinner, the rest of the little girls get bits of everyone elses meal. Everyone gets plenty to eat, and barely have enough room for pie!
AFter are meal we need to walk it off, to then we walk down ever aisle of K-mart down the street, looking for everyone, and not usually much at all just looking and walking mostly. Then its off for home, and some naps, or rest, or possible movie for the rest of the afternoon.
The next day was also a bit special this year, because then there was a neat TOY exhibit at the local Iowa History Museum. They had a person that was stacking playing cards, using a deck every couple of minutes, and then the exhibits showed bunches of old toys though the years. I swear the adults got more of a kick out of seeing the toys then the kids did, though they did like they since they got hands on with a lot of them. They had lincoln logs, and tinker toys, erector sets, matchbox cars, even Rockem-Sockem Robots. All the kids got a little extra interaction with rubber ink and stamps, and coloring in the craft room.
B takes a nap after preschool. She...must...sleep or we have a little bear cat on our hands. Really not pretty to see such a tiny person meltdown because she's so freaking tire she can barely stand up.
That said... its not an easy thing to wake her up and get her down to supper. Sometimes I have to just sit on the bed and wait until she stops cranking and rolling around. Other times... she lets me hold her while she slowly wakes up.
Today I was blessed to be able to hold her. We sat in her rocking chair and I got to rub her back and pat her bum. Her legs are getting so long... she's not the little tiny bunny she use to be so she hangs over the arms of the chair. Buries her head in my chest and sighs her sweet sigh.
I loved each and every minute we sat and cuddled... these are the moments that make life worth living :)
There is nothing worse in this world than watching your child be in pain. It makes you die a little inside knowing that you are the cause of all of this pain and there's not a damn thing you can do about it. And then you die just a little bit more as you bravely try not to cry while your child is crying out in pain.
You can shout to God all you want to just give you the pain instead of making your child go through it... but the world does not work that way and you must suck it up no matter how much your child hurts so you can be there for them while they need you the most.
Ear tubes got nothing on eye surgery :(
The stand-by gods only blessed us once yesterday so we got home really
late last night. Shae's doing awesome! Now that she's opening her
eyes more, we can tell that her circular eye motion is much MUCH
better, her back/forth movement has been reduced significantly, she's
opening her eyes wider now instead of squinting, and her gaze is dead
on center! We are so excited with her results and the good care Dr
Hertle gave her!
She's still running around today with my sunglasses on and asking for
eye dabs every once in awhile. She said she's not going to wear her
own glasses until Monday because her eyes hurt, but when I ask her if
her eyes hurt she says 'no Mama... they no hurt!'.
I did get to talk to a mama on that flight as we were getting off in
Chicago who's daughter had nerve resection surgery in Pittsburgh at
Childrens. She said Dr Hertle didnt do the surgery but he was their
second opinion dr and she thought he was wonderful :)
I asked him about Drake when we went for Shae's follow and he explained
Shae had a chance of developing the same reaction to the sutures Drake
did. If she did, just send him a email/give him a call and he would Rx
us some additional drops. He said that it seems like his patients with
albinism are reacting differently to the nylon sutures than his
pigmented patients but he wants to several more surgeries before he
turns in his research findings on the subject. Heh - he asked me how I
knew about Drake already and I told him I was terribly well connected!
He said he'd hate to go back to using the cat gut sutures because they
dont last long enough before dissolving.
Oh! One other thing before I forget... only 2 bad things about the
trip - both on the way home. Dana and I got picked for additional
searches at the Pitts Airport. One of the agents told me that Shae
would have to stand off by herself while Dana and I were searched. I
told him over my dead body she would! Not only is she a small child
who barely spoke English (I am soooo going to go to Hell for lying!),
she just had eye surgery, was in terrible pain, and could barely see a
thing! He took one look at her eyes and said 'oh...my... god...okay
lady'. So... traveller beware! The other bad thing was the stewardess
on the Pittsburgh/Chicago flight... she said she had to give Shae a 3
point briefing about the exits and then proceeded to talk to her like
she was deaf or stupid. I said to her 'Shae is not blind, she has low
vision and she certainly isnt deaf or stupid'. Oye to the silly people!
Laurie
Its been an extremely long day :) I have to say, the Same Day
Surgery Staff is absolutely wonderful here in Pittsburgh!
Shae did extremely well this morning - she was such a brave .
Surgery took a little over an hour and Dr Hertle came to talk to us
afterwards. He said everything went great and she did a great
job :D She had a very hard time coming out of it afterwards... had
2 bouts of vomiting before we got her back to the hotel. Took a
HUGE nap and then insisted she have doritos, animal ers, and
apple juice... the recovery nurses are going to kill me if they find
out! She kept all of that down and then had another little rest.
She just finished up a nice bowl of chicken soup from Panera down
the street and was munching on apple slices when I came downstairs.
Shae's eyes are very sore, very red, and are tearing quite a bit.
She yells out every once in a while 'dab me mama!' and I run over
and dab her eyes with a cold wash cloth. She hasnt looked at a
whole lot of stuff yet, but her eye movement has slowed down
considerably from what I can tell. We go back to see Dr Hertle
tomorrow morning and he'll show us how to put the ointment in her
eyes... tonight there's nothing to do but dab and give tylenol!
I'll probably not post again until Thursday unless I can get our
flights changed for tomorrow.
Thanks for keeping us in your prayers!!
Hello!
They had to be at the hospital at 7:30am eastern time this morning
and didn't go into surgery until 9:30. As I post this, she's been in
surgery for 45 minutes. May HE guide Dr. Hertle's hands for my sweet,
precious niece. I will post more when I hear from Laurie. Thanks!
Lisa
We saw Dr Hertle this morning and he is just the nicest guy! He
said Shae was a wonderful canidate for surgery and we're scheduled
to be back at the hospital at 7:30am tomorrow morning. Dr. Yang was
also very nice and remembers Brooke fondly. He said that Shae and
Brooke look an awful lot alike and was glad to hear that Brooke is
doing better! :)
Roxanne at Dr. Hertle's office gave me a heart attack when we left
this morning because she said we'd have to go to Childrens North
Hospital tomorrow for surgery instead of the main Children's
hospital. North is 30 miles away from the main Children's hospital
and would be a $30 to $50 cab ride. Of course the airport is just
as far and cost us about $42 last night :D
The surgery schedule nurse told me that R must have been smoking
something this morning because Dr. Hertle was doing surgeries at the
main hospital tomorrow. So... those of you that havent travelled
yet, you may want to call up the office and make sure you know what
hospital you're scheduled to be at for surgery so you can either
plan to trek out that far or get your dates changed so you can be at
Main Hospital at Shadyside.
We're staying at the Courtyard Marriot thats 2 miles from the
hospital... its in a great neighborhood! We went on 2 mile walk
around the neighborhood this afternoon and it was lovely... great
weather, wonderful fall colors, and awesome victorian houses! The
hotel has a free shuttle to the hospital that runs every hour on the
hour starting at 7am. To get back, all we had to do is ask the
information desk ladies to call us a taxi and they were more than
happy to hit the yellow cab button on their phone! Be prepared to
wait quite a while for a taxi back but if you stay at the Courtyard
its only about $6 one-way.
The internet is free in the lobby so I'll hopefully be able to post
again tomorrow afternoon. If not, Lisa will post for me after we
get settled after surgery.
Thanks for keeping us in your prayers!
Hi!
We're off to Pittsburgh today for Shae's Dr Hertle visit. We're
traveling light this trip so we wont have the laptop... Lisa will post
updates as she can :)
Wish us good luck!
Laurie - watching Shae HongQi jump up and down chanting 'Go on
airplane! Go on airplane!'