Hooray! Hooray!

Hooray!  Hooray!  We go home TOMORROW!  I want to point out that Mike and I are very excited to go home.  Avery....not so much.  She says she does not want to leave the hocibal and wants to bring it home with her.  I tried to explain to her we cannot bring the hocibal home with us, but she doesn't understand.  She has said she wants to have a TV in her room like she does here (not happening). 

To rewind, we had a  rough morning on Friday with a poke and then changing her bandaging on her PICC line.  Once that was done we were okay.  Daddy came and has been with us since Friday night.  Uncle Jake, Jackson, and Auntie Cayee came to see us yesterday morning.  We went around the hocibal for a full tour.  Avery and Jackson had a great time playing at the indoor playground here.  Last night our sweet neighbor, Suzanne, brought us dinner.  We enjoyed having FRESH fruit and vegetables.  The canned fruit they have downstairs just gets old after awhile:)  This morning we are in good spirits and cannot wait to be discharged tomorrow!

Not much to say...

There is not much to say except Avery is having a great time.  She said she doesn't want to leave the hocibal!  She rides her bike through the halls like she owns the place.  The Ft worth zoo came and brought animals the other day.  Avery wouldn't pet the alligator, but had no problem with the snake.  They brought two penquins that ran around a bit.  We also got to play drums with a local muscian.  Avery's Nonie came in to surprise her yesterday.  Nonie stayed overnight so I could go home for a break.  I actually didn't sleep very well...my mind was at the hocibal.  Nonie left this morning and Avery was bummed.  But shortly after she left Julie came with Zoe and Lucy to do a bit of Smithey Science School.  She did two really cute germ activities.  Avery took them on a tour of the hocibal and loved every minute of their visit.  Tomorrow there are some craft activities. 

We will get out on MONDAY...YAY!  I can see the finish line!  We should get out early afternoon.  Here are a few reasons it will be good to be home:

1.  Hot Showers
2.  Making my own food, how and when I want it
3.  Not waiting on a nurse to get meds for us
4.  Not being a germ-a-phobe (or just not as much)
5.  No more POKES

Avery will miss:

1.  riding around EVERYWHERE on a trike
2.  My complete FULL attention
3.  presents that come with every visit...really guys if you visit she is just excited to have you here.  You do not have to buy her anything. 
4.  Rainbow popsicles...she LOVES them
5.  The performances (and I will miss them too!)

Happy...what day is it....Tuesday?

We are having a lot of fun here at the hocibal.  Yesterday we saw an elementary school choir perform.  In the afternoon we got to pet dogs.  Avery even got to brush one of them!  Last night a friend, Cheryl, brought her uncle Joe to help us decorate our room.  We now have a beautiful princess tree in our room!!!  He is so talented!  I could have never done what he did to this tree!!  Thank you so much for coming Joe and Cheryl.  It meant a lot to us. 

We are excited for a new day of activities and fun.  Today the Ft Worth Zoo is coming along with Mrs.  Tami!!  Yay!!  I need to go as we need to go ride our bike!

Ok...NOW we are settled in.

Last night we had the PICC line placed.  It didn't go as smoothly as we had hoped, but it is in.  Avery had two blood draws this morning and so we had a rough morning. 

Since she had such a rough couple of days we took her to Build a Bear and Jingle Bear was born.  Daddy rigged her tricycle with the box and now Jingle Bear goes where Avery goes.  They even did vitals on Jingle Bear tonight and she is doing very well, although her blood pressure is 0 over 0.

We got to see an orchestra play downstairs with beautiful Christmas music.  They let a little boy be the conductor at the end.  He was so weak that the conductor had to move his arm for him.  Tears. 

Nanie came today and helped Avery make a Christmas chain for her room.  Avery's face when Nanie came in was a breath of fresh air. 

After peaking in other rooms we are sadly behind on Christmas decorations.  We are going to step up our crafts to make it more homey.   So that will be our goal the next few days. 

We are doing shaky puff-puffs for the last time today and then lights off for bed.  We are going to bed in good spirits.  Thank you for all of the prayers and sweet words.  It lifts us up.

poop

Avery went in for a PICC line and came out with an IV in her leg.  They were unable to get a PICC line inserted and left the IV in her leg.  She woke up a VERY unhappy little lady.  A wonderful smooth day at the hospital is ruined.  She has finally calmed down with some tlc from mommy and daddy.  We will try for another PICC line (they will use a sonogram to help this time) tomorrow.  That will allow her to be active and happy. 

We have respitory coming now...got to go.

Settled in

We are in our room, unpacked, and waiting on anethesia for a PICC line. Avery gets very upset for each new person entering the room. She asks if she is going to get a shot. It takes a few minutes to convince her and then the tears finally stop. Word just came that she is scheduled for the PICC line at 5pm.

We are looking forward to a visit from Santa tomorrow as well as fireworks! The Dallas Cowboys came on Monday, but I heard the Rangers might be coming soon. There should be a lot of fun things to do. Once we get past the PICC line we are smooth sailing.

Funny storry: They have a Build a Bear shop as you walk to registration (very well planted Cooks). Avery was tired and grumpy so she threw a huge fit about not going to Build a Bear. As we are walking to her room she is crying and carrying on. The hallway is super busy (hospital is at full capacity) and people are passing by saying how cute she was and poor baby....this is as I am hauling our luggage and I have a crying three year old. They probably thought she was upset to be at the hospital..but no, she just didn't get her WAY. I wanted to correct her and tell her she was about to go to time out, but I would have looked like the most inconsiderate parent in the world. Yep that was MY THREE YEAR OLD.

We are packed...

Avery's cough isn't better...and is getting worse.  After talking with Mike, another CF mom (thank you Rebecca!) and much internal debate I called the CF clinic to let them know Avery's cough is getting worse and we are ready for a "tune up" if he thinks it is necessary.  We are scheduled tomorrow to see him at 9:30.  They asked us to pack our bags in case. 

If we are admitted we will be in for 10 days.  There will be a lot fun activities and performances at Cooks, so we will have fun with it.  Avery is excited and she is making sure she can bring all of her favorite things. 

Are we better?

Yesterday I called to let the dr know Avery was much better.  So we cancelled today's appointment.  Avery got to go to a make up ballet class.  She always has a great time dancing and was so excited to get out of the house.  On the way home she started sounding hoarse and coughy.  When we got home she sat on the couch and fell asleep.   She slept for a good three hours and woke up still hoarse. 

I called the dr and he wasn't too happy that I took her out in this weather.   He wants us to stay indoors and minimize activity.  So before we were staying home bound by choice, now it is official.  The rest of the week we will be indoors.  Yay. 

Good news is we are still not in the hospital for a tune up!!!

Much Better

Avery is doing much better!  Her cough is mainly in the morning and at night.  Also when she starts running and dancing around!  We are still keeping her home to make sure the weather doesn't cause a change in her coughing.  And I am trying to get her to rest....but the steroids are not helping me with that.  She has a lot of energy to burn....she keeps asking for friends to come over and play with her.  Poor baby!  As soon as we are in the clear, we are going to have a lot of playdates.