It is Karli this time....

this was yesterday's post bf computer died!!

Just wanted to know we are heading out for our 1st walk and playroom time. Josh is busy at work. Kylie and I will b playing. Today she goes out for 3 - 30 min times. We r missing Joshua so so much, Kylie said she is withdrawing from his laugh!!!! Along with the post from earlier yes she is one a different floor but it is password protected, so if u want to come please get a hold of us 1st. we would truly love the company but, like when u have a baby these nurse don't mess around they will run u out!

We just have over an hour meeting with neurosurgeon asst. we have came up with many questions to ask surgeon when he comes in. So please send me any questions u think of and i will b asking. Today is where the true testing begins....

Every time Kylie is getting up her pressure is dropping in the negatives, so this data shows her shunt needs to be adjusted. I know these #'s r confusing but to take off less fluid u up the shunt # she was at 140 now we r going to 160.

Durning the 3 hour adjustment, it took 4 PA's 2 nurse's and KYLIE'S DAD & one amazing iPhone to get it to take. we finally got it !! we don't understand why it would not adjust but finally we did! after that our goal was 30 min up 3 times today. we did it -

She is still in a lot of pain and having a hard time.

we had some great visitors last night first and most of all JOSHUA!!! then Jeannie, James, Dani, the awesome Hayes gang, Ms Kristi, and Ms ally. They all came and enjoy dinner at our lovely cafe here. i hear the pizza is great (LOL....NO REALLY I AM)once back in room we had an incident as ky says and a nurse pulled the icp tube hard thinking it was another monitor. OUCH!!

so in a nut shell Kylie's pressure has went as low as negative 27 all the way up to 69! she is on a roller coaster, the pa's don't really know what to say. just keep gathering data. The dr will b in this afternoon.

I want 2 take a minute and say thanks to all sending cards, and btw she can have anything you want to send! (hint 2 my little sister amy joe- m&m's) we r in room 211 - we can have visitors BUT call cause this ward is password protected and only so many at a time.

special thanks for all who r taking time to call and come see us and also send messages - it does feel very "out of the way"

Also, Amanda Hayes and all her very special friends, i could never thanks you enough! perfect strangers BUT sisters in Christ, you goodies r great, the $ for vending machine is charming, the dinner money was helpful! But more than anything the encouraging cards notes and the prayers i can feel in my soul. I cant wait to meet you amazing people.

we will continue on testing and cing where we are..

Blessings on each of you,
Karli Reagan