In addition to my caringbridge post from tonight~

http://www.caringbridge.org/visit/alexismeyer/journal

Tonight was a bad night. Once Alexis was in bed and my hubby was home from work, I had a chance to talk with him.
I broke down crying. I had a major moment of weakness. I broke down crying. I guess I had to get it all out.

I'm sad with all the health problems that Alexis faces on a daily basis. Today for example, she had a very busy day.

She had Art class today, and afterwards was invited over to a friends house for 3 hours. She needed some Tylenol before class, I didn't give her full strength, but she was still hurting after class, so she took one more.
We got home and Alexis wanted to play volleyball. So, we played for about an hour or 2. Then the neighbor boys came outside to play. They are 10 and 5 yrs old, did I mention boys. They are 100% boy, lots of energy!

Alexis likes to play with them. She was so happy to have 2 play dates today. But I could see she was exhausted.

She played until maybe 7pm. We played outside. And I might add it was only about 40 degrees, overcast, and quite windy outside.
I was wearing 2 warm coats and I was COLD. Alexis was wearing cotton pants, and a t-shirt and she was sweating. She even had to pull her hair up as she was so HOT.

They boys were having fun playing with her. And wanting to tackle and chase her. She was having fun...and I enjoyed seeing her playfulness.
Yet, the whole time, I was a bit nervous about her getting hurt.
I don't like to say anything and interrupt her play time unless there is a concern.

They came inside after playing for hours outside and played the Xbox with Kinect. The Kinect is more exercise.

Finally, we went to see Chris. On the way there we nearly missed hitting 3 deer running across the road. :( For some reason she started talking about children and animals in different country's, and was worried about the homeless. She was so concerned about the children and animals not having food or places to live or people to love them.

We came home about 8:30pm and Alexis said she was in so much pain. She had taken Tylenol several times throughout the day. So I gave her Motrin before bed.
She had used the heating pad for a couple hours to try to help her back and arms.

After reading the report from Seattle Children's. I felt devastated. I tried talking to Curt but he was busy and rarely understands any of the health stuff anyways.

Fortunately, my hubby is so sweet, kind and understanding. He can empathize with pain since he has been fighting cancer, surgery and Chemo.

I just wish I knew how to deal with this better.

The thing that bothers me is that she is only 9 yrs old. And to think of how her pain will be when she is my age & older.
And seeing her having so much pain right now.........I just hate it.

She is such an amazing little girl. Truly a blessing from God. I love her SO much.

Alexis is in pain all the time, and yet she is this strong soul & at such a young age, a little girl who looks at the bright side of everything, and is ALWAYS smiling. She has amazing strength. Her friends dad told me today that she is like a mini adult inside a little girls body and so mature for her age.

Her mind wants to Go Go Go, Play Play Play & have lots of fun! I want her to have all the fun she can!

But then I also get to see her hurting from this afterwards. And it breaks my heart. It just saddens me when she has to take pain medicine, and use heat pads, epsom salt baths or try anything for pain at the young age she is. :(

I couldn't sleep....and just wanted to get this out.

I keep praying for a Cure for Alexis.

HONORING ALEXIS' ART WORK AS IT IS SENT TO OLYMPIA!

Alexis' art work has been one of the chosen to be sent to Olympia for the Reflections contest.

I'm so proud of her. There were 4 people who entered from her classroom. And 2 were chosen.

She drew an OWL. And in many different colors. The title was, Diversity. And she wrote about all the different people in her life such as her step father is Filipino, her father is Caucasian, I'm Native American and she is half Native and half Caucasian.
She wrote about her friends, how many of them are Korean, Caucasian, or other races. And together they make great friends.
She also wrote about how some people are healthy, and some are not, but that won't prevent them from being friends.

She is such an amazing little girl. I love her with all my heart.