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Thursday, January 27, 2011

Living Life One (Play) Day At A Time (A visit with Darya and Abby)

It has been one month since Ella finished her last chemo treatment. This is a strange place we are in right now. We are beyond thrilled to be done and be able to be home but at the same time, we always worry about the leukemia coming back. It is as if I am afraid to get too comfortable or it just might rear its ugly head again. But then I remind myself that we can't worry about the what ifs, we just have to live in the day. Ella has been feeling great and just making gains daily in her activities and speech. That is what is so nice about being 2 years old. Ella NEVER thinks about "what if the cancer comes back." She just has fun every single day! She is happiest if she can get outside or if she has a little friend to play with. I am so enjoying seeing her learning to be social. We had her first transition meeting to talk about her going to school I can't believe that she will be going in just 2 months! She seems so little to me but yet, I think she will love having friends to play with all the time.

We finally received the insurance authorization to get her central line removed. Of course, now I have been waiting for the past 2 days for the hospital to call me back about getting it done. I will feel so much better and worry so much less if she were to get a fever once we get that line out.

Today, we got invited for a playdate sy Abby and Jocelyn's home. They live on a ranch and have the cutest little pony. Ella loved the pony until it was time to get on its back. She didn't really like that. Abby is typical and is a few months older than Ella. She has a baby sister who has Ds. It is so neat to watch Ella with Abby. They seem to really enjoy each other. Now, if only Abby could convince Ella how much fun it is to eat!!

Ella getting ready to go to Abby and Jocelyn's

Abby pushing Ella in the swing

Ella was enjoying the tricycle...if only her legs were just a little bit longer!

Ella won't eat food, but apparently she will eat dirt

Giving the pony a kiss

So not liking this pony riding thing!!

But it sure does feel good to run your hands in the dirt!

She really does like the pony from the ground level

Is he going to eat my flower, mom?

One more attempt to ride the pony

A couple of weeks ago we were blessed with a very special visitor. Little Miss Darya, another Ukranian Princess was in town visiting from Florida. We were fortunate enough to have them visit us. It was beyond delightful to get to meet this beautiful little girl and her amazing family. She and Ella were so cute together and she is just as adorable in person as you would think. I only wish I could have caught the cuteness on camera...they were always too busy moving around!!! Thank you so much Fick family for taking the time to stop by!!
Darya attempting to show Ella how this eating thing works

I had to squeeze in a quick moment of loving from the sweet one

Going for a quick drive around the neighborhood.

This is an wonderful keepsake that was brought back from the Ukraine.

Don't let these pictures fool you.....she wasn't really eating the chocolate cake. However, she did get a few bites near to her mouth so that is some progress. But this just goes to show you the uphill battle that we have. If she won't devour chocolate, what hope is there ;)

Wednesday, January 26, 2011

So Frustrating!!!

Just look at the great feeding skills that Ella has. Yep, she can hold the spoon nicely, and make it all the way to the mouth just fine. Unfortunately, it isn't HER mouth that it is going to. Nope, she is feeding Elmo beautifully but has absolutely no interest in feeding herself. Oh well, we will continue to wait...and hope....and pray!!

Monday, January 24, 2011

Ella Says Her Friends' Names

This is one of Ella's friend posters from the hospital. She looks at it all the time and has started to identify some of her friends. She now says "Oey" (Zoey) and "Asha" (Dasha). I love how excited she gets over seeing her friends.

Friday, January 14, 2011

Great News!!! And Picture Overload!!

I have been needing to do this post for quite some time but was kind of waiting for one final bit of information before writing it. As you know, Ella finished her last round of chemo on December 20th. Then the following week, she had one final bone marrow biopsy to make sure she was definitely in remission. Part of what they look at in the bone marrow biopsy is called Cytogenetics which basically is looking at the chromosome of the bone marrow cells at the molecular level. If there are still some chromosomal abnormalities at this level, then that can mean that the treatment didn't completely work. We got the primary results on the marrow back last week and everything was clear but we were still waiting to see if she was in remission at the molecular level as well. This would tell us if the treatment was successful. Well, I am happy to report that SHE IS IN REMISSION IN HER BONE MARROW AND THE MOLECULAR LEVEL!!!! I definitely breathed a big sigh of relief today followed by many Thank You God prayers!! I know that it is completely normal during this transition period to worry about the leukemia coming back and we will never be able to stop worrying about that as nothing in the world of cancer is certain, but for now, all is good and we are planning on settling in here at home. In my heart, I knew that Ella seemed so full of life and energy and looked better than ever. But then my mind takes over and you talk yourself out of feeling very confident. I pray that I will be optimistic more than not from now on but of course relapse will never be far from my mind as is the same with any parent of a child with cancer.

So now what? We are waiting for a referral from our insurance to get her central line taken out. This will be an outpatient procedure but she will need to be sedated. I am hoping that this will be able to take place in the next couple of weeks as the worry of a line infection is always present. How nice will it be not to have to flush her lines everyday, change the dressing once a week and worry about it getting wet in the bath. Without her central line, she will be able to enjoy the swimming pool and beach. Unfortunately for me, this means that I will have to put on a bathing suit this summer :( No more excuses!! Right now, Ella has three lines of tubing under her shirt. Two for her central line and one for her G-tube. It will be so nice to only have one to deal with and then hopefully, someday when she decides to eat, she will have none!!

Once again, I thank EVERYONE for all of your support, love and prayers through this whole process. We seriously couldn't have gotten through this without you. But please continue to keep Ella in your prayers as we need to fight against this nasty cancer forever!!!

Now on to a major overload of pictures to catch you up on the last couple of weeks. Hope you don't fall asleep by the end!!

I call this her "Staying Alive" pose

Ella has taken to feeding herself already :)

Don't you just love the true happiness on her
face in this photo?

Nothing beats riding on Daddy's shoulders!!

All snuggled up after a bath

My new outfit from our local Ds group.

Ella's nun pose

Ella delivering home improvement flyers door to door

Daddy and his mom who was visiting from Montana

Our three girls

The girls with Grandma Vollmer

Ella and Grandma...this was her first visit to meet Ella

The "OH MY GOSH" pose

We reorganized the living room and now Ella has a play area.

Sisters swinging!!

Ella had a playdate with her friend E-V who is a few months
younger and also has Ds. They were so cute together but were
very hard to photograph as they rarely stopped moving!!

Ella being silly for E-V's mom's camera.

Just barely sitting down on the couch...

Here E-V, would you like me to read this Elmo book to you?

No? Well then I guess I will read to Elmo instead.

Taking a stroll out front

Enjoying lunch at Applebees.

Boy, are we tired!!!

Ella giving her big sisters a big squeeze!!

Ella and "that thing" settling in on her new Dora couch/bed
(anyone know the name of that thing from Dr. Seuss?)

Ella really likes this "thing"

I mean, she REALLY likes this "thing"

These days at home sure do wear a girl out!!!

Tuesday, January 11, 2011

Speech Therapy Or A Translator?

Ella has definitely found her voice lately. Unfortunately, we aren't sure what language she is speaking. In this video she is "running" around trying to find her sister and yelling the whole time. But she will talk away like this in the car, the store, all day long. There are some English words thrown in there and there are definitely some consistencies in her other language words. I would just like to know who is teaching her this language....does anyone else's child speak this language :)

Saturday, January 1, 2011

Happy New Year!!!

To all our friends, near and far, we wish you a Happy New Year!! May 2011 be your best year yet!! Of course we are sure looking forward to a fresh start to our year, hopefully leukemia free!! If I haven't said it enough, we can't thank you all enough for all of your support during the last 8 months. We couldn't have made it through without you!!