2 year Rainbow day!!!!!

It's been a LONG time since I've posted, but I'm not sorry! We have been so caught up in crazy normal life the blog hasn't even been a thought.  It's amazing! The last two years have been an exciting roller coaster ride! B is now almost 4, and a big sister!  Life 2yrs post transplant is "beautifully boring!" We get to be worried about silly little things like a dentist visit. Even her broken arm was some what "nice" I guess you could say, because it's normal! And it means she is well enough to play and get a broken arm!

My thoughts, especially today, will be with the amazing people who turned their tragity into our miracle! It's hard for me to even talk about them because, thank you never seems enough.
There really are no words......

Thanks to all the family, friends and strangers who have helped in so many ways.
It's amazing to me how looking back at that time 2 years ago.  I was never really scared.  Concerned, mad, and worried about her being uncomfortable, worried we were making the right choices, but

never EVER was I scared that things would not be ok.

 It seems so crazy for me to say that now. Now I see how sick she was, how close things got, and how AMAZINGLY LUCKY we really are. Was I crazy!  Through it all I felt so much comfort. I honestly knew it would just be ok.  So thank you all for your prayers, they really were felt!

Today we are celebrating! Celebrating our beautifully boring life, that I am so very thankful.

                                      

                                   

                                         

                                                          Berkley and Harper

 

Rejection

We met with the Drs today and got all the results from yesterday. Bird has a moderate case of rejection. So we are staying for a few days of some high dose steroids. Everything else looks good though! Now what I thought was a busy girl is even busier and she has a serious case of roid rage... So that's fun! 

We've had a very busy day first we got reunited with birds best friend... THE BUBBLE GIRL!!! 

we played in the playroom...

Watched a lot of tinker bell....

Took a nap with dad...

It's been a Looooong day it's crazy it's been a few months since we have been here and it already feels like we never left. 

It's been a while

Bird has been doing amazing the last few months. We have gotten into the swing if normal life. Or as normal as life with a super busy two year old can be!

This week when we did her routine blood work, her liver numbers came back higher then we like them. So today we are back at PCMC. She got a liver biopsy today that will tell us how severe the rejection is, and how aggressively we treat it. So for the next few days I get to figure out how to keep this wild girl entertained...

( who by the way has no idea she's sick) 

Checking out her new outfit...

Waiting to go to the OR...

Posing...

 

Tube free

For the first time in the 23 of Berkley's 24 months alive she is tube free!!!!! We had a great visit with Dr J today! Her labs are totally normal! And we were able to take her PICC line out! She's doing so amazingly well! In a month we hope to have her off the steroids! 

Take a good look this is the last time she's rocking the Coban!!!!

It was so nice for this girl to have a NORMAL bath... And she LOVED it!!! 

And then my big grown up two year old PEED ON THE POTTY!!!

Yay!!!!!!!!!! Happy Monday!

A HEALTHY two year old is A LOT of work!

I've had a few people ask or an update honesty its been a crazy reality check with this wild TWO year old. It's amazing what working parts will do for you! I'm beyond ready for nap time about 2 hours after she wakes up! 

She just had her second birthday last week and had so much fun. It makes me so happy to see her be able to get down and play with the kids. She wants to be right there involved in everything! 

She's doing so great! Eating worlds better! Some days she's a bottomless pit! And It's taken a full two years for me to finally feel like I can feed my kid! She still has some room to improve but I get so excited each time she takes a bite!! It's so nice to have the tube gone, I love her little naked cheeks! 

This was the morning SHE pulled her tube out. She was so very proud! 

Her labs are doing great we are hoping to go to every other week and take out her PICC!!!!! I'm sooooo beyond excited to have that out its been a year and a half     Her poor little arms are ready for a break! I'm so excited to give her a bath and let her get all the way wet!!!! I'm a little nervous tho too! I HATE to be having to poke her so often. But I guess checking med levels is now our new reality so we best get used to it! 

That's about it as far as an update! Things are going  amazingly well! She has so much ENERGY! And QUITE the personality I really like hanging out with that little wild child! 

Goofball 

She loves to help! 

She has the tantrums figured out! Even passed out a couple times! Man was that fun! 

Playing with the kids 

Very Serious coloring !! 

One tube down!

We went up to PCMC to see the cardiologist and Dr J. Good news is we got rid of B's oxygen during the day. She only needs it at night now! Yay! This girl was WAY to busy to be held back by tubing. They said her heart is looking better.  As far as her liver goes things are awesome! Her levels are almost normal. 

Now a days this girl is a classic FEARLESS two year old! In fact Shays only question for the dr was "what can we do to calm her down?"  It's such a dramatic change.   

After we took her air off this "small wonder" was so happy! 

We had some time to kill between appointments so we went to check out the new playroom. 

Out of all the toys to pick it had to be a dinosaur! ? Seriously bird? 

Then she luckily found some less creepy toys. 

Over all it was a great trip full of good news! 

Home again, home again jiggity jig!

On Saturday Chris and Mary drove up. Bird was so excited to see them! That night we went with the Dalley's to park station for dinner! Such a fun place. Bird was in love with the fountains! 

Then next day we had a much needed lazy day. We took B in a wagon ride.  Not my smartest idea in the crazy heat. But she loved it. We constantly have to tell her that her "waddy" is sleeping because its all she wants to do! 

(Sorry about this soon to be picture overload, birds had it with the pictures too)

We went to the Dalley's for a goodbye BBQ! We all loved Amy's cooking, especially B she ate more that night the then she's ate all week ( or since for that matter) it's a good thing Amy's  been teaching me a bit because Berkley's mature palate does not care for my cooking. 

After dinner we went "home" to pack for the hopes we would be going HOME the next day. 

Bird was a huge help! 

The next morning Bird Chris and I went to the hospital for B to get an infusion and see the Dr. 

Finally after we saw Dr J we got some amazing news! We said our goodbyes, and we were OUTTA THERE! 

Bird was pretty good for the ride home. She was exhausted. It's. good thing she rested because we came home to a party!!!! 

The Cowans/Pettys threw us a welcome home party.  This girl was SOOOO VERY EXCITED to see everyone! 

                  Especially Stevie!!! 

Oh my! She was so excited she was Shaking! As soon as we walked in the door she was reaching out the window  for cash! They were both excited for kisses! 

Bubbles sure make this girl happy! 

       We had a very happy home day!!!

Thanks to everybody who's been such a help getting us to this day!!