Infusion, Austin Style

Rowan had her IVIG infusion yesterday. The first two have been in Houston, this one was in Austin.
Lot of differences, lot of similarities...

Ro did some walking while we waited.


And waited...


And waited.


The IV team started her IV with no problems-YaY!

Rowan didn't even cry. This big girl is becoming immune to all these needles...

Afterwards, she was all smiles with daddy:





Practicing our "moo"



Before the IVIG, Rowan had a pentamidine treatment. This is a breathing treatment of antibiotic she takes monthly for a full year after transplant.... Only ONE left! (November 29th is Ro's transplantiversary!)

They had us sit in a big plastic tent... It was a little weird. We've never had to do that before.





The infusion started around 4pm-ish, so we finished up around 7pm. Rowan was a rock-star! The treatment went without a problem.

It was an extremely long day: Rowan didn't take her naps (because we weren't in her room/bed), and she's cutting more molars (ugh!).

But overall, her labs looked great, and we survived, yet again!

This morning baby girl took a 2 1/2 hr nap...

Then slept 2 hours for her afternoon nap...

And still went to bed at 7pm...

Talk about exhausted!

We sure feel super blessed-


Love this baby!

Happy Fall

Happy Fall, Y'all!!!

Visit from Tara!



At YaYa's house.








Yogurt is my new fav. But which spoon- blue or pink?

Life is Goooood

Wednesday night we got the medication taken care of...

So Thursday morning we woke up eeeeaaaarrrrrlllllyyyy to have Rowan's labs drawn.

Only, when I went to wake her up (yes- wake HER up, it was that early) she had throw up all over.
No time to bathe, so we just changed clothes and drove to Austin, smelly and all.


Here is some disgusting dried bit in her hair... Groooosss!

But labs went so well! One stick, and rowan didn't even cry!

When we got back home, a bath was the first thing we did.

So, for the great news:
•Ro's labs look wonderful!
•NO more prednisone, prevacid, or fluconizole!!!! (yes, folks, that's 3 gone)
•Blood pressure is not so high anymore- we are doing little to no medication for that
AND- She's walking!!!
Check it out:)

We have several videos now, and Rowan is so proud of herself!

We attempted a football game on Friday night, but 7oclock came, and Ro turned into a pumpkin. We had to leave by 7:05.


This morning we completed another 5K- Go Ro! :)

Girlfriend is so happy and energetic- what a wonderful squish ball of love we have!
Thank you God for our angel donor and a little bit cooler weather. (it's made our walks So much more enjoyable!)

Oooops!

I gave Rowan her medicine at 6:30pm tonight. I forgot we were supposed to have labs in the morning... She was supposed to get the medicine at 9pm for the lab to be accurate...
(but she goes to bed at 7)

Oh well. There's always another day...







Picking grapes with your hands is great...


But eating them right off the stem is even better!

Telefono

I am always on the phone... One of the "perks" to keeping everybody involved with Rowan's care on the same page.

I am genuinely a fairly easy going person. And I do not like confrontation. Just please don't make me call you more than THREE times.
One is ok. Two is typical. But if it's not taken care of after that third call- I get cranky.

Take for instance: this-





Rowan's blood pressure machine.
It's kinda important because we give Rowan medicine to decrease her blood pressure- unless it's already low enough. Thing is, you have to take the blood pressure to know. And you can't really do that with a cuff that won't work.
Long story short: ups lied and said it was delivered, Ro went 6 days without being able to check her bp, and I called guess how many times... It ended in a new cuff being overnighted.

(I would really like to post a clip of the movie office space here where they destroy the fax/copy machine...but I forgot there were a lot of expletives in the background song.)

Instead, I will post some really precious photos of Ro with the water hose. Girl loves no clothes and the outdoor water.




































She didn't really care about the chalk. But Chance and I had fun.

Some good news: because I didn't hear back from one of Ro's doctors after several calls, we get to forego labs this week!

When we finally got in contact, things on Rowan's lab end sounded pretty good. Her immunoglobulin levels are coming up. (As a result of the IVIG). Maybe only one more treatment will be needed- fingers crossed...

And, we were able to decrease her prednisone (steroids)! If everything looks good at the lab draw next week, we can kiss them goodbye! WoooHooo!


Chance and I both feel like we have been prepared for this challenge our whole lives. School, work, living apart, you name it- somehow it has helped to ready us for our day to day life now. I get irritated at times and want to office space that blood pressure machine, but I never ever forget that we have been blessed with an amazing gift. Rowan is our greatest joy, and we would do absolutely anything for her.







Look at this little ham:) She took these pictures herself!

On the road...

Well, not really the road...





Girlfriend loves to drive. So we run errands... At non-peak times of crowding :)











Brown socks= gross
Smile= adorable

Zoo!

Chance has been off of work for a good chunk of time, and we have really enjoyed it!

The only bad thing: 100+ degree heat has returned...

We decided to take Rowan to the zoo, but before it got too hot in the afternoon...This translates into during her morning nap time.

She had a great time, but did get sleepy. For some reason, we couldn't catch a good smile pic, but we will go back.












Her favorites were the meerkats and lions!





















Fish were a close 3rd place.



By this time, she was done! Ha

On Wednesday we drove to Austin for labs... We had to track down our very favorite phlebotomist at another location. It was worth it for another one stick adventure.


Thank you Lord for our angel donor. Without her, none of this would be possible!