Thursday, September 9, 2010

Red Dots

I believe I have previously stated my opinions about the Down Syndrome Clinic here, but just in case I haven’t…it is a waste of time.  I didn’t remember today’s appointment until it was too late to cancel it, so Averi and I went, sat around forever, and told them everything that we tell her pediatrician (very productive).
While there however, I asked them about the red dots that Averi has had all over her body for over a month.  They are not raised and don’t blanch when pressed on.  I thought it was another allergic reaction and have been waiting for them to go away.  Dr. Nash sent us to the lab to have blood work done because she thought it might be a response to low platelet counts.

I went down to the lab and the wait wasn’t too long so we signed in.  I totally forgot that Averi is a really hard stick.  Long story short, it took warming her arm, holding her down with three people, moving the needle around in her arm for quite a while, and letting blood drip down her arm because of a blown vein to get enough blood to run the tests.  I won’t even get started about the size of the bruise.

Then, at 5:00 tonight, I got a call from Averi’s pediatrician telling me that he knew Averi had had some blood work done to test her platelets.  He started telling me something about changing some appointment when I explained to him that I hadn’t talked to anyone about the results.  He took a breath and started to explain.

Averi does have a low platelet count.  It was looked into farther and they found a large amount of blasts (immature blood cells), which have essentially pushed the platelets out of the way.  The blasts are present in more than 10% of her blood and those levels are found in people with leukemia.

My world stopped and I broke down in tears.  The rest of what he said was a blur…more common in people with DS…admit to the ER tonight…bone marrow biopsy…can’t do the tests tonight…appointment in the morning with hematology/oncology…admitted to the hospital tomorrow.

I got off the phone, couldn’t get a hold of Dan, ran over and hugged and kissed Averi, and then announced to the girls that we were going for a walk because I couldn’t just sit in the house for another minute.  Then I took a bunch of pictures of her because I didn’t know when I would see her outside of a hospital setting again.
I am totally in denial until we get the results from the bone marrow biopsy (hopefully tomorrow).  The only thing I know for sure right now is that Averi must have one heck of an awesome spirit because there’s no way that what she has been given in this life is in any way fair.  Is it crazy for me to want her to have a somewhat happy and successful life?

She is a fighter and she will keep on fighting!

12 comments:

Stephanie said...

Oh Tiffany! I am saying some extra prayers for you today. Hang in there. You guys are both amazing!

Sara Emily said...

And YOU are a special spirit for having been entrusted with Avery's care!! You guys are all so amazing. I love you and my prayers are always with you!! Please let us know as soon as you hear anything and let me know if you need anything!!

Lauren in GA said...

Oh, Tiffany...I am so sorry. I really have no words...but I agree...it is not fair.

I cringed when I read about how hard it was to get the blood. We always have that problem, too.

I am praying for you. I love you.

Susan said...

You and Averi are both amazing! She's had more trials than most people in a lifetime, but you are right that she's a fighter! And you are the perfect cheerleader on her side. I'm praying and hoping for the best.

Brandy @ Gluesticks said...

We've been praying for Averi and you guys. You and Dan (and Kaili) are such an example to all of us on strength and faith. I don't think I've ever loved a little baby that wasn't related to me as much as I love that little gal. Averi is such a sweet spirit who touches everyone around her. We're here for you guys, Kaili is having fun playing with Kaylee right now and we are headed outside to collect rocks to bake and color :)

Tina said...

I just love you so much. If you need to call me PLEASE do. #1 and #2 have to keep in touch, you know?

Stephanie said...

Tiff, you and your family are in our prayers. My heart is breaking for you and I hope that everything will work out for the better no matter what. We love your family so much.

Vanessa said...

It makes me terribly sad, too, to think how much time she will spend in the hospital. I am so sorry this is happening to Averi, but I can't stress enough how strong I think you, Dan and Kaili are. You are an amazing family and Averi is more than lucky for that.

Lots of thoughts and prayers from SC coming your way.

Garn said...

I will keep you in my prayers. I am Spencer Luke's cousin, and he sent me your blog today. We had a little girl a month ago. She was born with Down syndrome, so we are relatively new to all of this. our blog is awalkwithourangel.blogspot.com if you are interested.

Garn said...

She is a doll by the way!!

Melinda said...

Prayers and thoughts are being sent your way! Love you much and know that even though I'm a "horrible friend" I think you are one of the most amazing women I know!!

Glenn and Melanie said...

We love you sooooo much. Hang in there. As you know, when the going gets tough - the tough get going. You must be steel! I wish I could hug my baby - give her a hug from Grandma D. You are always in my thoughts and prayers.