Wednesday, November 30, 2016

Summer to Fall

After several months without IGG she started to have terrible mood swings and anxiety. We chalked a lot of it up to her not feeling well without the IGG. It just kept getting worse and worse. Then we got a call in late August that her immunologist wasn't taking her insurance anymore, delaying the re-testing process. Since we couldn't count on IGG leveling Squeaker out we decided to have her see a therapist. We found a counselor that specializes in kids, and in a few weeks Squeaker was communicating her fears and needs to us better. Trey and I were better equipped to help her through her issues without constantly fighting. We still have have issues from time to time but we are much happier family by working together.

Fall started out pretty good. We celebrated Squeaker's 6th birthday. That was quite the event. It was the first time we invited friends. There ended up being 55 people that showed up!! A lot of that was adults but boy was it a party. At one point it got pretty noisy, common there was 55 people there, instead of melting down Squeaker grabbed her earmuffs to help block the sound. She kept them on for the rest of the party and had a grand old time. I was really impressed with her maturity to recognize the issue and cope with it all on her own.

A couple days later Squeaker had her 6 year check up. She weighed in at 41.5 lbs and measured 45.5 inches. Everything was looking good at the time, it was a nice easy visit. Next it was time to see the o the dentist. When I made the appointment the plan was to fix a cracked filling. It would probably be a soft filling since it was a baby tooth. When the dentist started to remove the old filling he saw a lot more damage than anticipated. A LOT more. Right then and there in the office Squeaker had a root canal and a crown put on. She was pretty miserable until
after she had a 3 hour nap. By the next day your would have never known she had a major dental procedure done. What a trooper.

There were a couple run in with sinus infections over the next month or so. In October we met with a Geneticist. And with the basic screening she is genetically fine. That doesn't mean there isn't an issue in her DNA somewhere but the most common chromosomes are in good shape. Which points to it being an immune system function issue. A few weeks later we met with the new immunologist and she sent out for a TON of new labs. She wasn't to figure out where the core issue is. We don't go back until mid January but that's okay. Having waited this long I'd rather see the testing process through before we go on IGG so that we don't have to but Squeaker through this ever again.

Why you may ask? Because it's sucked. Granted we've been blessed that Squeaker has been decently stable without IGG but right now we are back in the hospital. That's right we went 5.5 years without being admitted to the hospital due to illness and in 5 months we've done it twice. This time it looks like a respiratory virus is to blame. She's lost a lot of fluids in the last few days and it's taking a some larger doses of meds to keep the fever down. Given her history the doctors don't want to play around with it. Squeaker is currently here on a 23hr watch but if her fever won't stay down who knows what the will do. To top it off it's finals week for Trey. Thankfully his projects are team work and 99% done and I don't have to work right now. Still it stinks.

It Happened

The first part of July Squeaker was hospitalized due to an illness. It was the first time she had ever been put into the hospital strictly for an illness issue. As sad as it was to be there it was still a big win. We did 5.5 years without having to be held overnight, f due to illness, for an immune deficiency kid this is really big.

What happened was Squeaker had a wonderful (note the sarcasm) sinus infection for several weeks. She was on 2 rounds on antibiotics and on the last day, day 20, Squeaker was looking really well. No runny nose, no pain, and happy disposition. We thought we were in the clear. We were even on track to start the prophylactic antibiotic again later that week. That was a Thursday.

Friday morning she was fine. Then she went to lunch with Trey and didn't eat. When they got home Trey made sure she took a nap. A 5 hour nap later, Squeaker had a fever. 101 fever.... 20 minutes later it was 104. We gave her some meds and called the doc. Another 20 minutes her fever was down to 103. Finally talked to the doctor and it was agreed we had better head to the ER.

They thought about doing an abdominal ultra sound because she was complaining so much of stomach pain and just in tears. Not our normal Squeaker, even when she hurts. A chest x-ray, a bunch of labs, a dose of fever reducer, an IV and still having a 102 fever it was decided to keep Squeaker for a little while. While we were in the process of being admitted some lab results came back. She testing positive for Para-influenza 3. A human born flu for which there is no vaccine and the virus can live on hard surfaces for up to 10 hours. The biggest concern for Squeaker was that she seemed very dehydrated and that Para-influenza 3 commonly leads to pneumonia or bronchitis.Which Squeaker is pretty prone to get. If it hadn't been decided before Squeaker was most certainly staying in the hospital for a day or two. Alright so we are admitted and finally get settled into a room at 4am I think it was. I'm glad we all took naps that day. 

Wednesday, June 8, 2016

I Was Away, Overnight!

I was given an opportunity to go work an event in Indianapolis. Specifically the Indy 500. It would mean long days, short nights and being away from the family. It was the first time ever I spent the night away from Squeaker. Honestly the longest I had even been away from Squeaker before was about 12 hours. So to suddenly be gone for days at a time would be a huge change for all of us.

Guess what, we survived. It was hard, we had some challenges, and there were tears but we made it work. We learned that Squeaker wouldn't go into major meltdown mode. Which has been known to happen when mommy leaves.

Next step, Mommy and Daddy go somewhere together overnight. It will be quiet a while before we try that one but we see the light.

In other news, Squeaker is sick. Sadly being without infusion is taking a toll on her little body. We've
had GI issues come up we haven't seen in almost 2 years. Last week she started complaining of a sore throat, had cough, mild ear ache. Then Sunday mix in lethargy, vomiting and a slight fever we had a rough night. Monday we saw our family doctor she was hoping it viral but gave us a antibiotic if the fever went up, she was even more fatigued or symptoms worsened. The doctor was hopping we wouldn't need it but alas we did. Oh and Squeaker had lost weight just about 2lbs in one day. From vomiting and not eating I'm sure. Its just so hard to put on weight an loss is hard.

Hopefully she starts to feel better soon because next week we all head to Cub Camp. Squeaker is going to be attending their day Camp I'm working in the Kitchen and Trey is getting caught up on some school work. For us this is will be like her first day at Kindergarten. She will be on her own with kids her own age, but no family. Its a big deal, we are very excited

Monday, May 16, 2016

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.

Friday, April 8, 2016


(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!!!

Wednesday, March 23, 2016

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. 

Monday, February 29, 2016

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.

Sunday, February 28, 2016

Sunday, January 24, 2016

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.

Sunday, January 3, 2016

A Penny Saved

For a couple a years now Trey and I have wanted to do a "savings plan" that go around every year. Where you increase the amount you saved every, week, month or whatever. But each year we look at them and they just don't fit our budget. By the middle of the year at the latest we are cutting directly into gas and food money, having already lost our limited fun budget to the savings plan. This year we found one that will still require self control but we can do on our budget. It's the "Penny Saver Challenge"

You've probably seen it. For the day of the year, based on the Julian Calendar, you put in that many pennies. The logic is as follows; January 1st = 1 Penny, January 14th = 14 Pennies, May 7th= 128 Pennies, October 14= 248 Pennies. By the end of a leap year you have $671.19. For a non leap year it's $667.95. Now this idea sounds all well and good until you think about keeping that many pennies around. Not to mention remembering to count out that many pennies each day, ugh. For me I knew that was just setting myself up for failure. I really want to save up some money so I needed a new plan.

I made myself a chart. A chart that said each week what I needed to put in the jar with a little box for a check mark to track my progress. I found a large jar at Dollar Tree and taped my chart to it. I now have a savings jar. I'm thinking of doing it backwards so my highest amounts go in first. Don't we all seem to have more money at the beginning of the year? Or if I get a bonus pay a larger amount. Leaving the smaller ones for weeks with less money. I'm being pretty fluid now that I know what needs to be paid. I figure as long as I have a check mark for each week by the end of the year then I'm good.

You may wonder what am I using this money for? We are being practical. It's going to be our cash reserve fund. It won't go in the bank it will be cash we keep for emergency needs or emergent times. For instance when the power is out in most of the city and stores only accept cash. Or you are going to the fair and you don't have time to go to the bank and don't want to pay the ATM fee. We've never really had a cash reserve and it's time we got our act together. You can use it for whatever you want but that's our plan.

Here are the two charts I made.
Option 1- Download JPEG or PDF

Option 2- Download JPEG or PDF

They are pretty big they are 6.5in by 7.5in. You can try to shrink it but it gets harder to read. I like the larger size. If you are putting in on a bottle just make sure you get a bigger one.

If you are just moving the money from checking to savings in a bank account you may want to print the chart put it on the wall and mark it as you go.