The Immunologist

Again... things have been so busy with little munchkin! Where does all of her energy come from?!

PROOF!!! Look at this running cutie!

So my blogging is lacking...  I think its safe to say now that Rowan is officially a wild woman,only a few posts here and there are going to make the cut!  I'll post some pictures first as a reward for reading :)

Happy 1 year Transplant Anniversary!

She LOVED riding the horse!

Helping Decorate

Noooot so excited....

Last week we visited a new dr. He is an immunologist in Austin.  Rowan has been receiving her IVIG treatments every month since July, but her numbers weren't improving, so they referred us to a new guy.  At first I was a little concerned Rowan had another "rare" something, but after the appointment, we all felt much better.

Here's the run down:
Rowan had to take the drug Rituximab to kill her immune system in June.  (This was because the autoimmune hemolytic anemia kept attacking and killing her red blood cells.  Killing her immune system was the only way to stop it) 
So, we were told her immune system would be dead for about three months.... it still hasn't "woken up".  The new immunologist said this was NOT uncommon at all for patients who received Rituximab and have had a transplant.  (Makes us feel better news) BUT the kinda bad news is her immune system might be "dead" or "asleep" for 1 to 2 years....
In the meantime Rowan has to get IVIG.  This is like a fake immune system, infused every month. 

Today we went for our first treatment at the new place... we've been doing this in Houston, but since we don't need to be seen by our liver folks anymore, it's more convenient to have this done in Austin.  Plus, it's done in the office of our new guy. 

It took 4 horrible pokes for the IV to get started.  In the past I have only allowed them to start the IV's with an ultrasound machine.... but one isn't available in the office. 

Because Ro has such crummy veins, and she is going to need these treatments for a while, we've discussed putting in a port.  Its a surgical procedure where they implant a device in the patient's chest.  Looks like a hump.  You stab a needle into the hump and it's only one stick.  Also, there is talk of doing the infusion through her thigh skin.  This would have to be done weekly, not monthly.  But she wouldn't receive a port if we went this route.  The only problem is she needs about 3 good IV treatments before we make a move one way or the other.... poor baby girl.  Today was rough, but she was a great big trooper!  I was very impressed. 

The advantage to the leg method every week is every week she would receive some immunity and have just a constant amount in her system.  The IV way she gets loaded up right after the treatment and it dies off before the next. 

On to other topics:
We visited Santa: not a fan.
We drove through the trail of lights near town: big fan of all the lights!
Potty: some days we are 2 for 3 on the pot, others 0 for 4.... we're working, she's still young
She's loving elmo and abby.

This Christmas season has been so fun for us all.  I can't wait for her to open gifts!  This is our first Christmas at home together and it has been magical-  All thanks to our Angel Donor and that Perfect LIVER!  (By the way it is still working like a champ!)

1 Year Transplant Update and So much more!

It has been forever since my last post-  I will credit that to a very active 17m old!  The past two weeks have literally been the fastest time has ever flown by.  We had the blood drive, Thanksgiving x3, Rowan's 1 yr Transplant Anniversary, and National Biliary Atresia Awareness Day!
(And I also haven't taken as many photos lately either... due to the fact we are constantly chasing her around!)

Rowan is doing remarkably well.  She is happy, healthy, and getting into lots of mischief.  If you're not careful dear things you love can end up in the toilet at our house...

We wanted to do something special for Rowan's one year transplant anniversary.  Something we felt like was giving back and raising awareness.  The Tuesday before Thanksgiving, we hosted a blood drive and had a great turn out!  A majority of the people who donated couldn't recall the last time they had done so, and we thought it was fabulous to get so many people out who don't typically do so!  We will have to make this an annual thing :)  Rowan has received so many gifts of life, we are excited to give some back!

For Thanksgiving we were able to participate in 3 family gatherings!  Rowan had a fabulous time running around everyone's homes.  It was an incredibly happy two days we were able to share. 

Last Year:

Thanksgiving we were in the hospital at Texas Children's.  Chance's mom and grandmother brought us a meal and we heated it up in the microwave.  My what a difference a year makes!  Rowan was so sick at that time.  She had been listed for transplant already.  Back then, she wasn't eating and had to receive IV nutrition... although I distinctly remember she actually ate some sweet potatoes.  It was a very surreal holiday to say the least.  My mom came in that weekend and we spent black Friday roaming the halls of the 12th floor. 
Chance worked on Monday and my mom planned on heading back home until the most amazing news ever.  We had been waiting 10 days for a phone call, and around 2pm the coordinator called to let me know, there was a possible liver on its way.  Tears.  Instantly. 
From the time of that call to Rowan receiving her transplant there were a myriad of people, tests, and logistics to figure out.  OH MY- we heard "no news is good news" 1000 times!  There would be no guarantees that this would be Rowan's liver, so it became a waiting/ preparing game.  Chance was supposed to work on Tuesday.... should we call the rest of our family to come down... what if this is a no go... The hours ticked by and around 9PM I told Chance to come! The night was sleepless.  Several physicians would come in to assess Rowan and talk to us.  Daylight came and we felt pretty confident the surgery was a go.  November 29 will forever be one of my most cherished days.  This was the day our daughter received her gift of life, a new liver.  Without it, she would not have made it much longer.  We cannot imagine the loss of a child, and thank our angel donor's family for making the choice to give our daughter life.  We ask God to hug our angel donor close until we are able to meet.  Rowan's gift is a miracle that we can never be more thankful for. 

This year November 29th was probably a very hard time for our angel donor's family as well.  We prayed for them.
We also celebrated Rowan's life.  She is an amazingly strong little girl with a very promising future.

Today we celebrate National Biliary Atresia Awareness Day.  Please check out this wonderful video.  Rowan and many other miracle babies are in it! 

http://video214.com/play/Pk1Qxv9T50ohovMb7gdSSA/s/dark


We could not be where we are today without the love and support of our family and friends.  Thank you so much for ALL of the "likes", messages, wall posts, food, free babysitting, etc.  We are truly, truly beyond blessed! 

Yay Yay Yay!

So I have really been slacking on my blogging since my phone app is still out... But this is a biggie!

Tonight Rowan pooped in her potty chair! :D

She's 17 months old, going on... Eh, who knows...

But, she's also got a slew of words: please, peas, keys, cheese, puppy, kitty, mom, dad, Gigi, YaYa, bubble, ball, Elmo, blue, you get the picture...

Tons of stuff to pick up now that she's in everything! I'll post some pictures soon.

Houston, we have liftoff!

No trip to Houston would be complete without a trip to the cheesecake factory...

Rowan must watch her father eat, because she actually dipped her veggies in sauce!!! And she was pretty good at it too.





Then she walked out!

Our appointment was fantastic! Labs looked perfect... See ya in 6months!!!! (with one lab check in 3months) wooooohooooo!

We celebrated with a trip to the zoo.





We didn't take too many pictures...

The IVIG infusion went very well once we got started... But we waited 6 hours for everything to get going.


Ro was perfect.

We are so excited that Rowan's 1yr transplant anniversary is coming up on November 29th!!!

In honor of this momentous occasion we are having a blood drive! If you are in the area November 22 from 1pm-6pm, please come donate!!!

Thank God for our angel donor- without her our RoBaby wouldn't be here.

Halloween!

My iPhone is now upgraded to the iOS 5, but the blogpress app I use to make posts on it is having some compatibility issues... Ugh! I've tried to make several posts, but none have worked. So, it's just going to be a picture bomb, because I can't go back and rewrite everything...

If you Click HERE you can read the update I made on the guest blog.


Check Up at the pediatricians:










Wiggly worm made it hard to take pictures...




Early morning breakfast!







Making more messes!


Birthday/Halloween Party!















We used an entire bottle of germ x afterwards in the car and took a bath when we got home:) mom's not paranoid or anything...








Happy Halloween from the cutest kitty I've ever seen!!!



























No trick-or-treaters came by while Ro was in costume... Turned into a picnic in the front yard!

Teeth and Tottering

Teething makes this princess grumpy:





Thank goodness for the beautiful weather outside!


We can get some walking in...


Look Mom, No Hands!




And speaking of T's we've got to throw a shout out to those Texas Tech Red Raiders for beating OU!
Also, rooting for those Texas Rangers!!!

Tomorrow Rowan has a check up with her pediatrician... Ht/wt stats to follow :)

Fall Festivities

We took Rowan to the same pumpkin patch as last year...





Look how much she grew :D









Such a big, beautiful, happy girl this year!








Self shot.


Rowan experienced her first fall festival:


The snow cone was great...


The people watching was even better! Our little nosey nancy...

We've also taken flight with the walking situation. Watch out world!


This child is on the move!

And with that mobility comes oh so much more mischief:






Yeah! We can open the storage cabinet and pull out all of the old medical supplies...

This girl is too much fun! We absolutely love every single second with her!!!

More Paparazzi

I just loooove taking pictures of this girl:


Monday we had labs drawn. It was SO early, as usual. We rode in pitch black until we were practically in Austin. Of course Rowan was awake and wanting to be entertained... She's so like me. I can rarely go back to sleep after I'm awake, and I can't sleep in the car.

We had a new guy draw labs. He passed with flying colors.
Rowan sat in my lap, like a big girl and watched the needle go in without a word. So well behaved- what a dream patient.

Our reward was going to meet baby Nathalee!


So beautiful and precious!


Later that night at dinner we were practicing our Halloween faces ;) Actually, she just didn't like the flash!


More disturbing flash:


This one, I have no excuse:


She's crazy:)


And just loooooves to make a mess!



For the past 4 days Rowan has only been taking prograf! Back to one medicine:) Her blood pressure is coming down on it's own after stopping the steroids.

Plan is no labs until November 9th! Amen! Another round of IVIG then too...