Changing, Again...

I am well aware that life is perpetual change. Most changes are small, some are very large and then there are the in-betweens. Where at the moment seem huge but really it's not so big. Or as I like to say, "At first it was life changing, now it's just life."

Small changes:
The weather is nicer which means it's time to climb the trees. This makes Squeaker very happy. Grumpa now calls her stuck-monkey. As you an imagine from time to time she gets in a spot she can't figure out how to get down from.

Poor Squeaker was waking up a lot of days with neck pain. One Saturday we spent about an hour trying out new pillows. Found the perfect fluffy, but firm, memory foam pillow. Since then we've been having to see the chiropractor less often. I was very thankful for the sale at Kohls that week. Making it a $12 pillow instead of $30.

Big Changes:
My new job. I worked at Churchill Downs for the week of Kentucky Derby. My shortest day was 8hrs. My next shortest day was 14hrs, the rest were 18hrs- 20hrs. I missed home and I was missed by Trey and Squeaker. The restaurant took me on full time after the Derby. My days are much shorter now but it is still a big change.

We are taking a break from infusion. In order to get new lab work, and check titers we have to stop he IGG therapy. The stuff has a 21 day half life which means a minimum of three months off. It will probably be 4 months once its all said and done. There is a chance Squeaker won't need to go back on therapy. These could be some very big changes.

The In Betweens:
Lots of medications. We've had some adjustments to medications the last couple of months. Each time requiring a change in routine. We quickly found a new normal with all of it.

Chores, chores and more chores. We are trying to teach young Squeaker how to be fairly normal. So she has chores and responsibilities in the house. Most are brush your hair, brush your teeth, get dressed, things of the nature. She is also required to fold and put her laundry away, empty the dishwasher, and set the table. These are all unpaid responsibilities. There are a few other things on her list that are harder tasks that if she does them we pay her 25-50 cents. These include but not limited to, sleeping in her own bed, making her bed and emptying the trash each week. Squeaker has had to learn some things, and do things when she doesn't want too. Overall she is learning about contributing to the household.

Last on our list today is reading books. For ages Squeaker has had very little interest in books or stories. I think she didn't like them because in order to read you had to sit and slow down. Slowing down made her sleepy and sleep is a scary thing for her. Well in the last couple of months Squeaker has started to like reading and being read to. Much to my delight she enjoys listening to me read Harry Potter to her. Trey bought me the illustrated copy for Christmas and Squeaker likes to see the colorful pictures. The downside to her love of the story is we read very little at a time. Just before Squeaker falls asleep she likes me to stop reading, that way she doesn't miss any of the story.

Karma

Karma

noun

(in Hinduism and Buddhism) the sum of a person's actions in this and previous states of existence, viewed as deciding their fate in future existences.

Over time people has restated this as "what goes around comes around". How ever you want to think of it or call it, it's real. This past week I have felt like a little good cosmic karma has come my way.

About three years ago I made an awesome Minecraft Theme BINGO game. You can find it here.  It is a very nice set with 20 cards, a master card, and covers. As of today it has been re-pinned 2500 times, viewed on the blog 37,673 times, used in no less than 6 different countries, and with 203 comments made. Most of the comments state how much they enjoy a free finished printable. We all know that can be hard to find. Well this week I found a free printable I needed.

I found Star Wars printables for movie night. On a wonderful little site called Sandy Toes and Popsicle.

Okay let me back up just a second. The reason I wanted Star Wars stuff was for our movie night. With Squeaker's issues it can be really hard to take her to a movie theater. Lots of people close by makes a momma nervous. Also because she is so small she has a hard time sitting in the seat comfortable. Meaning she won't sit well for long, and often can be disruptive to others around her. Combine that with the fact the Star Wars came out in the middle of winter and everyone was sharing germs, well Squeaker didn't get to see Star Wars in the theater. The rest of us took turns and did, she felt pretty left out. We started watching the other movies at home and then she pleaded for us to take her see the new one. It just wasn't happening.

Well here it is a few months later and the video is out. I got it in my head a few weeks ago we should do a viewing party for Rayne. Make it a big deal with snacks, and special stuff. So she can feel the excitement we did. I was trying to find Star Wars themed snack ideas and that's when I found the printables.

This lady is a genius! Instead of making whole new snack she just renamed them. Then she made the labels to share with everyone. That's my karma. I sent awesome into the world and it came back to me when I needed.

The only changes I made was the chip cans. In the original pattern you have to cut the cans down to size. Well the short stack Pringles cans are just about the right size. Not the super small ones, the ones that from a distance look like full size, but when you get close you realize they are smaller. Those ones are perfect, no resizing needed. I also bought a giant bag of Gummy bears and put them in sandwich bags instead of buying the pre-sized bags from the store. The other major change I made was I used Ginger-ale in bottles not the traditional cans. The labels didn't fit as well but they worked.

I hope everyone enjoys these as much as I do. Please leave her thank you notes too. These things are hard work and pats on the back are greatly appreciated by their creators.

May The Force Be With You!!!

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.