Picture Bomb

Rowan is a busy woman. From the time she wakes up until the time she sleeps/naps, she is crazy.

We still haven't mastered the UNassisted walking, so mom and dad's backs are about to break, but at least she's still slightly wrangled.
Now I know why parents have those ridiculous back-pack leashes.

Ro will scale walls, furniture, big toys, and then do a little boot scoot to get to crazy places in our house. And she also likes to shut doors behind her- seriously... So you have to keep your eyes on her or the next thing you know she'll be eating dog food. (hasn't happened yet, but I'm waiting)

The above mentioned has kept me super busy.
Also we went to Austin on Tuesday for labs. One stick- didn't even cry!!! Such a big brave girl!

All of Ro's liver numbers are looking good- yay!

Here's a picture bomb of what's been going on:



Strawberries: 1 White Pants: 0












Kleenex...











Pigtails!!




















Waaaaay past bottles now...

Winking! So precious!!!

Plans are to get more IVIG on sept 7. We will continue with our isolation... The immune system is still not up to par. But obviously, that's not slowing her down!

Bye-Bye Baby!

It's a sad, but happy day... Our baby is growing up!
(But I'm still calling her baby, and she will always be our baby!) :)

•Ro has a self-imposed, strict bedtime of 7pm. And sleeps until 6-0630 AM. Hallelujah!

•she is walking (with help) all day long- Soon going to take off on her own...




































•Ro's schedule is two naps per day. When we put her down, she is sleepy, but awake... And just peacefully drifts off to to land of nod. No crying, whining, or bottle drinking. Just angelic sleeping. (of course in her OWN bed)

Yes, I said it. Perhaps the most big girl accomplishment to date:
•Rowan has been sans bottle for over 24 hours now.
I am so proud, but I could cry for these wonderful, normal-baby accomplishments instead of hospital/ sickness stuff...

If I've learned anything with this child: she will do things in her own time.

Less than two weeks ago we started "operation sleep" and not only has that goal been met, but the bottle is gone too?! What?!

Please skip this next book, unless you are really bored...
(for all of you so excited to know my magic;) I gave more than a "good college try" with the sippy. I decided if she was reeeeally thirsty, she would drink. This started with the sleeping op, so i had major motivation at the time I banned bottles until right before naps and bed. It probably helped to put fun things like sprite in the sippy since Ro doesn't like any of the fruit juices... I ignored any whining I heard and it made me laugh when she would guzzle 8ounces of milk before the nap/bed. Guess she was saving up because typically girlfriend only drinks about 4oz per bottle. Slowly she would drink more out of the sippy throughout the day. And then, wha-bam! I busted out the sippy before nap, and the world still turned! She didn't even put up a fuss or fight. And actually she didn't even really want that much. Now that she's drinking more during the day- the comfort of sucking a bottle was just that, comfort- not hungry. So off to sleep without a peep!)

Guess all those books worked because we are a solitary sleeping, no passy, no bottle, sleeping through the night BIG GIRL!

But I sure am going to miss that little baby...

























Turned our world upside down-
And we absolutely love her to the moon and back times infinity.

Thank you to our angel donor-
What amazing blessings our Lord has provided.

IVIG

Our trip to Houston got off to an early start. Then we made some stops...
First at a cefco for diaper changing and drinks- took literally 30 minutes.
Then food-


And Rowan decided to take the wheel.






Once we got to Houston, our hotel room was SO hot, we Chance had to pack us up and move to another.

Then the. Longest. night. ever...



Rowan did NOT sleep well. Up every 2-3 hours....
(when we got back home, she slept the entire night--- so a familiar cage bed must be the key to sleep)

We checked in at 9 am for Rowan's infusion of IVIG, but nothing started until about 11.

They didn't even attempt to try an IV, just called the vascular access team- Thank You!!!
Our friend, Scott, whom we have gotten to know well, came and started Ro's IV without problem on the first try! He. Is. Awesome.

We are hoping he will be around again next time! Scott really is the only one who can start iv's on our darling... Seriously. This is the 4th time he's been successful at TCH...
Even with the ultrasound machine in Austin, they miss.

So we sat around and played with Lots of toys (from home)!


Then, after the infusion finished, the IV was taken out and we went home! Hooray!

Ro slept the entire way!!! 3 1/2 hours... Baby was tired!
Then, took a bath and slept all night.

Back at home sure feels comfy...

Cookies and Rudy's

14 months and fabulous!

Just a few pictures:






This is Exactly how a cookie crumbles...







cleaning assistant.




"winking"






Rudy's- so brand new, we didn't even need a cover for the high chair... Well, almost that new!

Puzzle Pieces

Rowan's complicated medical history is like a puzzle with lot of little pieces. I'm going to try to explain what's going on as best I can...

B Cells make antibodies for your body.
The antibodies attack potentially dangerous viruses, other harmful pathogens, etc. to prevent you from getting sick.
The Rituximab treatment wiped out all of Rowan's B Cells. (She had antibodies that were attacking her own Red Blood Cells- and causing her to need tons of blood transfusions!)
So, now that the antibody that was doing the damage has been sent packing along with the B Cells that were making it, Ro is left with a very suppressed immune system.
(She also is immune suppressed from the steroids and the ProGraf.)

Now, Rowan has hypoimmunoglobulinemia. (Antigen and immunoglobulin are basically the same thing, just different word.)
This means that she has a very low amount of antigens/immunoglobulins in her body.... They "low" number on the lab work is 450. Rowan is 126.

Well, Duh- We just wiped all that stuff out!

In other children, they may watch levels and do nothing in hopes that everything would correct on it's own. But with Rowan, they don't want to take chances.

It's not good if Ro gets an infection, because that upsets her liver transplant, the medications, and we don't want rejection to start... yadda yadda yadda.

So!
We will be packing up and heading to Houston for an IVIG infusion on Wednesday.

The IVIG is IV immunoglobulin G. Basically, now Ro is going to get back some antibodies back that we killed off.


These are her "eyes" on her face.



Determined to get brodie's name tag.



JUMPING






Who knew diapers were so funny...









And I forgot to mention: the IVIG infusion should last anywhere from 3-6 hours... So NO admission! Yay!

Until then, we are staying self quarantined at the house! :)

PSS- Rowan has graduated to sleeping throughout the night!!! Amen!!! She. Is. Awesome.

TCH news!

Yesterday afternoon we made the trip to Houston for a check-up among other things.
Rowan did great in the car.

We opted for an off- hour lunch in Brenham.






Ro enjoyed the people watching... From a distance!






We packed up the Pack-n-Play because we are not the cosleeping type.
Ro slept from 9-4:30am. Annnnd, if it weren't for the hotel, we probably would have made it all night.

So:
Busiest. Day. Ever.

0830- labs
0945- our appointment with our favorite Dr. Himes. (GI/Liver)
1030- another round of labs
1100-pentamidine breathing treatment
1300 which turned into waiting until 1400- ultrasound of Rowan's arm where her clot was







Name band removal.






Elevator waiting...





More.





Even more. Three full elevators before we could squeeze into one.






Again- more waiting. Book reading.











The Results:
•Prograf level (anti-rejection) too high. We are decreasing her dose.
•ALT (one of your liver enzymes) a little high-120's. 30 would be better. Rowan has never had any problems or issues with thus before. Nothing major at this point, but something to watch on the radar. It could mean that she has some type of infection brewing, but so far we don't see it. We will just pray that it will be all back to normal at our next check!
•Hypoimmunoglobulinemia.... what?! Basically it's another kinda complicated term meaning Rowan is extremely immune suppressed. Our hematologist is discussing if Ro needs some IVIG treatments. She had this before the rituximab treatments... So it's different.
•The clot is gone! Maybe some small remnants left, but essentially free and clear. We are going to continue the lovenox shots for a full course of 3 months just to make sure there isn't any recurrence. (Math: 180 shots :( not including all of the lab draws and IV starts since June 1)
•No more folic acid!
•steroids are only once a day now!






puppet show in the lobby.





Sleepy!





So sleepy...


Rowan did remarkably well. She didn't really fuss or cry unless being poked.
SO proud of her!