Faith Restored!!!!

Not quiet a month ago Squeaker lost her iPad. I mean LOST her iPad. We were at Costco and she had been playing with her iPad for most of the ride over and in the store. As we are leaving Costco he iPad got left in the cart. We didn't notice until we made our next stop. It was only 10 minutes and we were back at Costco looking through carts for it. No luck. Talk to the guys taking the carts in, they hadn't seen it. They even radioed in to customer service to see if an iPad had been turned. No news. We went on our way. Ran our errands, saw the family, initiated a remote lock down on the iPad. The remote lock down would even flash a message saying "This iPad is lost please call ------". I Even called Costco a couple hours later and still no one had turned it in. Squeaker was heartbroken.

I spent the next 3 weeks trying to figure out if I could afford to replace the iPad. The new $50 Amazon tablet looked promising. But once you purchase a warranty and a case it is still just about $100. Which is almost my entire Christmas budget. I could make it work. We have most of Squeaker's presents already, and Trey and I don't need much. But I was hoping to do some fun things for us since it's been such a rough year, and clothes. I like to do clothes at Christmas. I thought about not getting a new tablet of any kind but Squeaker is far more likely to do her school activity apps on a tablet that is hers. When she asks for mommy or daddy's phones she usually like to play fun games or watch videos. That is what we taught her though. The iPad was for school and our devices were for play. I really wanted to get Squeaker a new tablet for Christmas but I wasn't sure I wanted to use the budget for it.

Then comes today. Squeaker, Gma and I went to Costco. The first time since she lost her iPad. Squeaker insisted that we ask if they had found her iPad. I tried to explain that the iPad was gone and that Costco probably didn't have it. She continued to insist that we ask, so we did. I made her actually ask the manager. All Squeaker said was "Do you have my tablet?" That's pretty good for her. I then explained what it looked like. The manager went and checked the lock up in the office. Guess what? It was there. I'll be honest I about cried and Squeaker jumped for joy. She even said that she would try her hardest to not loose it again. A pretty good promise for a 5 year old.

There are so many things in the world today that make you wonder where has humanity gone. Well today, with a little help from Squeaker, I was reminded that there are good and honest people in the world.

Throw Back Thursday

Facebook and Time Hop Apps like to remind you of the past. I think it's pretty cool to know the exact day something happened years ago, or to see trends over the past few years. Today I was reminded of a very important day in our past.

5 years ago today Squeaker was diagnosed with LM. She was 2 months old. Every breath she took she made noise. She couldn't keep food down. She didn't sleep for longer than 2 hours at a time, and would be up for an hour before going back to sleep. She wasn't putting on much weight less than 3 pounds since birth. We had seen her pediatrician almost constantly trying to figure out what was going on. Finally on this day we saw the Cardiologist and Pulmonologist. The Cardiologist did an Echo, and her heart was perfect. A few hours later we met with the Pulmonologist and withing a few minutes of walking in the room he had Squeaker diagnosed. A few minutes after that we had a treatment plan. For the first time I had a real answers. I knew it was far from over and done with but I felt like I could face it.

This memory is very important today. Today was the first time, the first November 5th that LM has not been a part of our lives. In January I wrote about the resolution of this condition. Need a refresher you can read about it here. I look at the picture of Squeaker when she was 2 months old and I see so much.

Her sweet little smile, and big brown eyes. Which reminds me how much I love her and although she struggled how sweet of a baby she was. I also see the swelling and darkness under her eyes, and it makes me sad. To think at a such a young age she was already sleep deprived and unwell. In my head I can still hear the gasping sound she would make while she slept. Maybe someday I will forget it. For now I am content that I don't have to listen to it in real life anymore.

As I type Squeaker is laying next to me in and out of sleep. Even though she is sick her breathing is quiet. Not just quiet but silent, I can't hear her breathe. I can see it. I can watch her chest and shoulders move but there is not real sound. Silence never felt more golden.

Wowza!

It has been 30 days since my last post and boy what a time we have had.

It started off with a miracle. We were told that Squeaker qualified for 1 free month of Infusion

 medication. We had applied a couple of months ago to the IGIQ program and we had received a letter saying that she wasn't approved. Then one day out of the blue we get a call asking us where they can send her medication. Trey spent two days and many hours figuring out where it could be sent and getting updated information to the company sending the medication. It was shipped to a local specialty pharmacy where all we had to do was walk in and pick it up. AMAZING!! We started to see improvement within a few days. Sadly we also saw it wear off early because it is still building in her system. But each week we get a little better. Squeaker's insurance also was approved a couple weeks later. The people at IGIQ are helping us get the medication with her insurance. Talking to the specialty pharmacy, and the doctor for us. Hours of work we don't have to do. It is wonderful.

We also had the big yard sale. The neighborhood has yard sales twice a year. And because it's the
whole area lots and lots of people come. Sold most of the stuff we don't need anymore and put a lot more out in the trash. Made some money and had a lot of fun. I'm just glad that all our stuff has gone to loving homes.

I had a grand adventure. I spent TWO whole days immersed in Harry Potter. The local Science Center had a Harry Potter movie marathon on their 4 story IMAX screen. Trey bought me tickets to go by myself. Saturday was movies 1-4. It was a lot of fun, but boy

at the end of the day was I mess. **Spoiler Alert** Cedric Diggory still dies. Every time I watch the movie or read the books some part of me hopes maybe this time he won't die. I know it's crazy but I just love the character so much. Sunday we watched movies 5-8. Yup. Not a dry eye in the place by the end of it. When the final movie ended you wanted start all over. Yes we were all that crazy. We also had costume contests, trivia, and general discussions about the books and movies. It was a lot of fun. I hope they do it again in a few years when maybe I can take Squeaker or a friend.

The other big thing was I made Squeaker's Halloween costume. It was much easier than I had anticipated. A LOT easier. It took only about 5 hours to lay out, cut, and sew. I keep thinking I missed something or it will fall apart. But so far so good.

Here's to continuing finding the good in the world.

I Almost Forgot

I almost forgot how rough life was before infusion. Okay so I didn't really forget. I remember being exhausted. I remember countless doctors visits, and driving a lot. I remember feeling like nothing and yet everything was happening. But what I did forget about was the fear.

Maybe I didn't realize it at the time. I was afraid all the time. Afraid of germs, afraid I could give the wrong dose, afraid I would miss a doctors appointment, I was even afraid I wasn't counting all the calories she was eating. You name it I probably was afraid of it. I've started to notice those feelings coming back. I'll tell you it's not helpful at all! I don't know how I lived like this for years I'm sure. Poor Trey what a mess he had to deal with.

After we started infusion these fears started to go away. Squeaker wasn't sick every single day. Which made me feel it was okay to go a day or two without waging war on every germ in my house. We weren't having to see a doctor every 2-3 weeks, which was very freeing. And then a few months in Squeaker started putting on weight, and I stopped counting calories.

Since it has been about 2 months without infusion slowly but surely the fears have been coming back. At work I constantly am cleaning my hands and my desk to make sure I don't bring any germs home. I worry about when I can get in to see the doctors, and I am paying very close attention to what and when she eats.

Thankfully this time around I'm recognizing the signs and how irrational it is. I can't make it all go away but this time, this time I will keep it in control. I will use everything I have to keep the fear at bay. I will rest, I will take time to relax, I will prayer for strength, I will voice my concerns to the family, and I will not let it run my life.