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!