Very Tired

We are back to having nasty sleep anxiety issues. Most night I am up past 2 am. 3am is happening a lot too. I'm also still working which means no nap for me. A lot of nights I'm stuck under Squeaker. If I move just a little she wakes, and the process starts over. Thankfully I am blessed with a TV, laptop, tablet, and smart phone. Which means I have access to a lot of things, and I can get a fair deal done. I wish i had more time to sew or do other projects but oh well. She will only be little once. She will only want me around for so long. I'm going to try to enjoy it. 

Rare Disease 2016

 We greatly enjoyed it. I made new shirts for the whole family. Took treats into work and a sign to
help my co-workers know about the day. Once I came home we gave Squeaker her presents. Then off to dinner and bowling as a family.
We raised a little awareness about Rare Diseases and celebrated our
own little zebra. There was very little fighting, arguing or sadness. We just enjoyed our time as a family. It's days like today that make all the rough days. All the procedures, blood draws, and doctors appointments fade into the background. We understand that without all of that Squeaker wouldn't be healthy enough to leave the house but some-days it's just nice to not let the disease control our lives. It's just apart of it.

Rare Disease Day Sign

I made this sign to go with the treats I'm taking into work tomorrow.

Something Normal

   Once and a while something "normal" happens. This time it was lost teeth. Squeaker has now lost two teeth a completely normal way. They went loose and then came out.
   The first one was a big surprise. It was about a month ago and I was getting ready to leave for work

and Squeaker came down saying her mouth hurt and it was wet. I look at her mouth and a bottom tooth was gone. My response was "Oh my gosh you lost your tooth." I asked Squeaker what she did with it and she said I spit it out in my room. Sure enough we go in there and on the floor is her tooth.
   What made it even funnier was I had to look up what a normal lost tooth looked like. All of her other teeth were pulled. Leaving large holes in her gums and giant roots on the teeth. This looked very different. It was normal... so strange.
   Then it happened a couple again a couple of days ago. This time we were prepared. We watched the tooth as it progressed. Watched it loosen and move around in her gums. Then "pop" it came out. A lot less blood this time. Squeaker even called me at work to let me know it happened. She really is adorable.
   Our life usually anything but normal. Which makes us appreciate the little "normal" things that happen.