Gracie update

We made it through week one of steroids! And we are halfway through our week break.  Nothing like the first phase...but a bit of insomnia a couple days with little or no nap and some waking at night.  Eating super frequently but not as much as the first month...and very particular.  Seemed like she only ate cottage cheese, noodles, mac & cheese and rice.  Nothing else comes to mind but I may be missing some.  We have had a lot wetter diapers and wet through several including nighttime diapers at night.  We have had some meltdowns and I like to call them "steroid tantrums" but overall she has been much happier than expected so I can't complain.  And we eventually got a better system for getting her to take her meds.  Strawberry syrup instead of chocolate and distracting with a favorite movie...followed by an intense clapping session by everyone present...except Tyson. 

Tuesday Gracie and I went to clinic and Grandma B stayed with Tyson.  It was nice for me to have some one on one time with Gracie even though it was at clinic.  We got there and I was promptly reminded why holidays are no longer something to look forward to.  The waiting room was PACKED we could barely find anywhere to sit.  And since Todd still has to put in his hours for the day doesn't seem like much of a holiday...but I suppose we'll just appreciate holidays more in the future.  We waited for about 45 min in the waiting room and luckily she was more subdued and wanted to be held most the time since there wasn't much for her to do with all the kiddos in there.  She wouldn't be weighed without her blanket...so we weighed her with it and wasn't to thrilled about having them get her height.  And she did NOT want to be in her room at all.  So we walked around the hallways over and over (correction I walked and carried her...she did not want to walk-very out of character for her.  We finally found a little car that I could push her around in  and I have no clue how many laps we did while waiting for the nurse.  The crocodile tears were pouring when they accessed her port.  She was MAD...M-A-D.  We got it in and hooked her zofran up to the car and did a bunch more laps around the clinic.  Then she wanted to go in the room and we watched Nemo while sitting in the car for a while then resorted to sitting on my lap thankfully when she wanted to get out and I was tryign to hurry and unhook the meds while keeping her from deaccessing her port.  We got the meds and got deaccessed (which she was pretty mad about again) then came the meltdown.  The nurse trying to be helpful took the car out of the room along meds and she started screaming and crying and couldn't be consoled.  Finally I calmed her enough to change her soaking wet diaper and thought we would pack up and go home.  When I put her DVD player and nemo away...another meltdown.  The nurse Grace came in and brough stickers and got her some salty crackers and a big girl cup of water.  That did the trick and luckily we could go home after that as long as she had some crackers to eat. 

Clinic stats (somewhat decieving from the steroids)

Weight: 31 lbs 10 oz.

ANC: 5.7

WBC: 8.0

Hemoglobin: 12.7

Platelets: 468,000

Should  be a stark contrast this coming Tuesday when we go in...we anticipate her being neutropenic.  Actually she could be now we just don't have a test to prove it.  She has done really well with treatments over all.  But Tuesday night we proved once again that parents aren't perfect.  We forgot to redose her zofran and it ended up in a nice pukey mess.  Poor little sweetie.  And of course Tyson is screaming like crazy during this whole thing.  But I guess on the bright side its' the first time she has vomited from chemo.  Hope to not repeat next week.  So many things to remember and think about all the time...Yikes.  On a sad note...this morning is day 10 when the drs said she coudl start to lose her hair.  I found several hairs on her pajamas and in my hand this morning when she woke up after a LONG night of being awake.  She slept in til about 11...but kept Dad up quite a bit.  Who needs sleep anyway right?