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!

Marvelous-ness

The morning after our trip to Houston made that crummy day a distant memory!
The temperature outside was in the 70's for our morning walk!!!


And, because it has been SO incredibly nice out, we haven't come back inside- except to watch a little football! :)

This weekend marked the very first time in 15months that Chance and I have ever been able to leave Rowan (excluding hospital admissions) and spend the night away.

I thought she might have a few issues... We have a pretty strict routine :)

However, Rowan was a superstar! She didn't even care that we were gone! Gigi and Pops switched out with YaYa and everyone said she was perfect.
Even all of the medicine went well...

Pictures from the grandparents cam:





***it's not letting me post an adorable video... But just picture the most precious baby Ro pushing a car and mini grocery cart all over the living room.

here are a few from yesterday with some gifts from papaD:

Doozie of a Day

This day actually started last Friday. I called to confirm the appointments and times for this whopper.
Everyone was confused... And I was frustrated.

After a very blessed and wonderful labor day spent with daddy, we enjoyed our break!

Then, it was back to the grind on Tuesday. I called to again confirm and discuss details talking with at least three people.... ever knowing in the back of my mind this day would most likely be horrendous.

The trip down confirmed my fears. Rowan screamed forever and forced herself not to take a nap. The only thing that would get her quiet was Toy Story 3 (netflix + iphone). I took my case off to plug in the Aux cord so we could all hear Tom Hanks over the car speakers. It was a blissful 45 minutes.
We got out at the outlet malls for a stretch and some retail therapy. Empty= Perfect...
Until I dropped my phone (still without the case) and the screen shattered into a hundred pieces. Great.

When we were about 15 minutes away from the hotel, she finally went to sleep. Ha.

To comply with scheduled labs in the morning, we are supposed to give Ro her prograf at 9PM so her level can be checked at 8:30AM. (Thirty minutes before her next dose) Well, I just knew if we were supposed to check in at 8:15AM there was NO WAY she would get an IV started and labs drawn by that time. So I made an executive decision to give her the prograf at 9:30PM, hoping the IV would be started by 9. She was so tired, I was able to slip it in her mouth while she was still asleep. Amen!
On a side note, this exact same thing happened on the last trip with her lovenox level--- I adjusted when I gave that to her as well, for the same purposes...

***Spoiler Alert***
I was right. No IV by 8:30. Maybe I should go into the fortune telling business.

Today, Rowan woke up at 5:45AM.

Before we left the hotel she had a gigantic poop bomb and two baths. I was so optimistic that this day would go smoothly, but this should have tipped me off.

After we checked in and waited for 20 minutes, I informed the front desk that Ro had a timed lab they just missed. The desk clerk then informed me, that I should have notified them when we first arrived... OH MY. Momma was. not. happy. I have spent days on the phone with people, trying to organize these timed labs, trying the get the IV situated, trying to make sure everyone knew the plan. FAIL.

So, we were ushered back and the Vascular Access Team was called. (Even though I had asked for them to be notified the day before that this would happen...) We waited, and waited. Our beloved Scott was out of town, so we had a new person. Unfortunately, it was not a one stick day. He got the IV on the second try, but this was technically after four sticks. Two were lidocaine. And, I am thinking I may veto that next time... she screamed just as loud when he poked to start the IV and she was supposed to be numbed. One stick is always better than two... and two is better than four.

So labs were sent around 9:45AM. I could have given her the medicine at 10PM last night... but I was close.

We had an appointment to visit a hematologist. check.

We then left the 14th floor and headed to see Dr. Himes, our most favorite GI dr. ever.
After a good chat with him, it was clear to see Ro was fading.

Moving on, we headed back to the 14th floor, as ordered, even though I was pretty sure we were supposed to make a stop on 9 for her inhaled antibiotic treatment.

Got a little Good News when we arrived!!!
NO MORE LOVENOX INJECTIONS! We can stop poking poor Ro to death!
And, instead of being out in this large open space with tons of kids and tons of noise, we got a semi-private room for Rowan's infusion! Thank you Lord, because I might not have made it otherwise. And thank you God for iPad's and Toy Story 3. Rowan was so tired at this point (noon), she was in a zombie-like trance. Still no nap, but gosh nothing is better than chick-fil-a.

I talked to our nurse during the infusion about the inhaled antibiotic and she assured me, it was allll worked out. So after the infusion, which lasted 2 1/2 hours this time, we were ready. Not.

Apparently, I was right the first time and we were supposed to make that pit stop on the 9th floor. So we rushed over there at 3PM, only to find- they needed to fax the order to pharmacy to make the medication...30 minutes later we were finally ready to rock.
Rowan screamed bloody murder for the entire 20 minute treatment.

Then, we ran out of that hospital as fast as we could.

Rowan was literally asleep before we got out of the parking garage! She was completely exhausted.

After sleeping nearly the entire way home, she had a bath, and is now back in bed.
Ah, how good to be home! And so nice not to give my baby a shot tonight!!!

What a day... And supposedly the same thing next month?! Yeah, we may make that a two day adventure...

Thank goodness GiGi and Pops were able to come along for backup. This job is much too large without somebody there to help you.

Here are a few photos. Think of them as a prize for reading this lengthy post. Rowan is too precious even all zombie-like with food everywhere!  PS- Rowan did great for her treatment and her liver numbers look good.  Amen! 







exploring with her new shoes on...











all of the gear before we got the room...





chick-fil-a and a movie...






















funny faces.






yogurt covered pretzel...turned very gross.





your gonna do what?!

The Face of Mischieve...

Yes, I am aware that's not a real word... But it sounds like a combo of mischief and mischievous to me... I like it:)

This little munchkin is priceless!

Bzzzzzz

Not a lot has changed since the last post...

1. Rowan is still crazy. I can barely keep up with her.
She is now a super-duper fast crawler! You cannot take your eyes off of her- if you do, she's in to something.

The walking is about to drive us all crazy- just do it already! ;) She is still hesitant to let go of our hands. (But I'm really ok with that for now, since she is still on the lovenox... we don't want any unnecessary bleeding...)
However, if I don't rupture another disk in my back bending over all day, it will be a miracle. Plus Ro gets frustrated, because I am apparently not assisting her in walking to all of the places she would like to cause mischief.






Peeking underneath the door. As I mentioned in an earlier post, she loves to close doors.



Where's Rowan?

2. It's hot. Too hot. We can barely do anything outside.
We've read books: over and over, played with allllllllll the toys, of course walked, cruised in the push car, jumped in the door bouncer, and it all just gets so boring. TV break;)


Apparently she's going to be ready for the front row seats in a movie theater.

3. She still loves her fruit...


Shhhhh. Don't tell. We busted out of the house for lunch here.


Avocado is a fruit, right?! Check out her foot- it's like she has four hands...





Busted! But oh so sweet:)




Today we had our 3month check up with our Austin GI dr. Nothing outstanding to report.... Except she acted like a spider monkey during the appointment. Granted it was smack dab in the middle of nap time, but this child was EveRyWhErE! Even the dr exclaimed, I've never seen her so active before.... Oh just come on over to my house....

That all being said- we wouldn't trade this for the world!!! It's so remarkable to see a spunky and precious little angel doing regular baby things instead of be sick in the hospital.

Thank God for organ donors!