How much a year changes!

I honestly can't believe I'm sitting here looking back on 2015, where did that year go?!  This day last year I couldn't imagine being past it all and yet here we are.

I went back to read the post I wrote New Year's Eve 2014:

"2015 will be a year that brings new life in more ways than one, great fear, great joy, anxiety, prayer, faith, and trust.

My Timehop yesterday was 5 years of "What an amazing year we had, can't wait to see what the next brings!" I can honestly say that I have never wanted to be on the other side of a year more in my life. My hope is that NYE 2015 will be of our family of five, lighting sparklers, drinking sparkling cider and thanking God for a year that brought health, healing and joy."

2015 surely did bring all that we had imagined with the transplant, treatment, quarantine, and hospital visits, but it also brought so much more.  It brought love, support, family and friends. Joy, excitement, health and new life.

And here we stand, drinking our cider, setting off poppers, going to see Christmas lights with friends, as a happy family of five.

I know for certain we would not have sailed through this year without infinite love from all of you.  Thank you, from the bottoms of our hearts.  We appreciate everyone and look forward to celebrating a different 2016. Living life with thankful joy.

Here's to a beautiful and healthy 2016!!

Christmas!

When Ellen told me that we couldn't travel to Indiana I was devastated and didn't know how we could get through a year without going to visit.  But we made it and it was amazing.

I think my Dad was more excited that anyone. They were racing to get home from the grocery store as we arrived and he asked us not to go in so he could be there. His excitement is adorable.

We had an absolutely amazing Christmas and can't wait to go back to visit again!

Selene got her first salon hair cut, she felt really fancy.

Merry Christmas!!

"Perfect and Excellent"

Phew. November brings the most stressful event of the year. Renewing Selene's medical insurance. I'm a well educated, I'd like to think intelligent women. And it takes hours of reading fine print, re-reading vague requests.  Confusing language. And don't get me started on their own confusion over their programs. It's a medicare program but it isn't income based, it's "holy cow you are really sick and need expensive medicine to keep you alive" based. Last year they rejected us because of income, then fixed it when I called. "Oh yeah, they don't always look closely enough." Oh...ok, then. Don't be good at your job. They mailed me information to log into their website, which I have used in the past. Nope, the log in information didn't even fit in the boxes. Then it wouldn't load. We'll ignore the fact that they haven't taken care of bills because I didn't check a box...that either doesn't exist online or is really well hidden (I saw it for the first time in two years on this years' packet.)

I really don't know how people who don't have time to burn on the phone, or pouring over the papers do it. Or those who don't speak English (I can't imagine their translated documents are much better). I still haven't heard from them.  But here's to hoping they renew her coverage.

On to the best part of November so far, her 8 month studies ROCKED.

"Engraftment is perfect and her immune reconstitution is excellent!" The email I got from Ellen :-)

It was unlikely that her engraftment would regress but it was still a huge relief to see the list of 100%.

Almost all of her immune system results are within normal ranges. She's actually escaped illness that the rest of us had twice. I can see the light at the end of the tunnel!


Here's pure joy from yesterday afternoon.

And we had a fabulous week of my Mom staying with us and my Aunt visiting for the weekend!  Now on to the Holidays!

We started food! 

She's unimpressed.

Shopping at Trader Joe's

They love when Nana comes!

Selene didn't like Santa, so group shot!

My happy girl, sitting and crawling at 5.5 months

Lansdale Mardi Gras parade

This face :-)

Why did you leave me with this strange man!

Happier now

We wish everyone a lovely, warm, cozy, and delicious Thanksgiving!!!

Just because...

....the cuteness is too much.

Singing

Singing more 

I'm biased, but I love her. She sings all. day. long.

Look Who Is Three!!

I remember when they weighed Selene at 9lbs 1oz and handed her to me saying "What a beautiful, healthy girl!" It's overwhelming what can be hidden at birth.  I know I say this too often, but I feel so much guilt over not pushing harder, at missing the sunken look on Selene's face (I even noticed it on her First birthday photos). I just opened photos of her sores the other day and was like "How could I have left the hospital without further answers? What was wrong with me to put cream on those things each night and think that was doing anything to help my baby?"

Ugh. That's not what this post is for. It's to celebrate how beautiful, amazing, quirky, and delightful Selene is. She brings such joy to our lives and is the epitome of strength and happiness.  It's hard to believe that three years have gone by since we welcomed her. All that we've been through with her.  We wouldn't trade one moment of it.

Happy Halloween!!

The girls loved Trick or Treating! While I missed out on my pumpkin farms (we'll go every Saturday and Sunday next year!) we had a fun day carving our pumpkin and running around getting candy from our neighbors!

Happy Halloween!

Nothing I said could convince one of them to be Anna...or anything else.

Looking Good!

We get surveys from CHOP on the service we receive all the time. I filled out the most recent and one of the questions was "How do you rate the health of your child." I instinctively filled in the "Very good" option. Then I was like, what are you doing? Your kid had a bone marrow transplant, she isn't in perfect health. But, I think it says a lot about how well she is doing, and my mental state :-)

Today I took all three girls to clinic by myself. Ainsley didn't have school and I was feeling adventurous. My only concern was really the fact that I've been sleeping about 4 scattered hours at the moment because Kalina has stopped sleeping (Yes, Laura, you were right and I jinked myself). This also was our first time in the brand new Buerger Center. It just opened in October and Onco was moved there. It's a pretty amazing building, but it didn't change the fact that we were still there for 5 hours. But honestly, the girls were good, the staff is amazing, they loved the play rooms, the flat screens on the walls and all the snacks.

Selene never disappoints and had Ellen in stitches.  She got 10 kit kats and 10 nemnems (M&Ms) at Halloween and she is willing to share one kit kat with Mommy ;-)

Overall they were pleased with her health and think she is doing fabulously. Her anc was 7000, and since she has a cold it showed that once again she is mounting a response. She is slightly anemic, her hemoglobin had gone down a touch. So they'll do some tests next month to try and type it and find a cause. But it's nothing alarming right now. And her liver numbers are back to normal!!! Still a mystery with that one, but one I'm willing to let go for the time being.

They did send off for her 8month studies which will give us an idea of her immune system functioning, and will lead into the final decision at one year on when we can start vaccinating her again!

Everything was brand new!

Waiting for Dr. Olson and Ellen.

What I would rather be doing.

You can tell she is really upset when we go to Clinic.

"When do I get my snacks and a movie?"

Woody came and serenaded us with a version of Let It Go. It was actually great!