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.

Survival

I See Blessings Everywhere
It is the only way I can survive. Life is hard. In the best of times life is hard. But you have to find ways to enjoy it. I like to look for blessings.

It's been about 6 weeks since Squeaker has had her infusion. She is having a hard time sleeping, and is achy all the time. Even with pain relievers and sleeping medication Squeaker has a hard time falling asleep, staying asleep, and wake early in the morning. The blessing in all this? It didn't start until my shift at work moved from 7am to 9am. 2 hours may not seem like a lot but when you are up until 2am those extra hours are very helpful.

Trey was slowly running out of his medications because our insurance hasn't kicked in yet. Sadly just a few days without his medication and the vertigo and headaches were coming back and fast. We just decided to talk to the pharmacy and see what cash prices we could get. Our blessing? That day a new discount card came out and we were able to get both medications, 90 days supply for about $60. Not as cheap as a copay but do able. Very do able.

Sunday night I was on the brink of tears. Just worried, tired, and stressed about how I was going to keep being a working mom. All I wanted to do was stay home and take care of my little one. I feared I wouldn't be able to do the job. Then to come home and take care of everything I needed too. I was worried sick. What blessing did I find you may ask? I realized as much as this may suck I had a job. A job that was close to home, with decent entry level pay, and allowed me to be home during the evenings so that Trey can go to school.

Without the silver linings life is dull, irritating and a pain. I have found that if I can find a few happy things, or blessing everyday then I can make it through. Because life is hard. I can't state that enough. But it is also amazing and worth getting up for everyday.

A Perfect Moment

Life has been crazy. I'm back to work, Trey is a stay at home Dad. Family birthdays, family visits, merging into a new household. Today was crazy all by its self. We cleaned bathrooms, vacuumed, argued, played, did laundry, went grocery shopping and even put all the food away. Tonight though there was a perfect moment.

A moment where all was calm and everyone was happy, it was the dinner table. We were slurping our spaghetti and just enjoying the company, and I realized how blessed I was. Squeaker, as messy as it was, was slurping spaghetti. 2 years ago she couldn't even eat spaghetti. She would choke and gag on it. We'd have to use another type of pasta.Thin noodles would get caught in her airway, but not anymore. All I could do was smile.

I then looked at the other side of the table and there was Trey. My wonderful husband. Who had helped me make dinner, clean the house, and run errands. He worked all day and ya know what Trey didn't need his cane. He hasn't a vertigo day in a couple weeks. Trey still gets dizzy from time to time and he still tires pretty easily most days but in general he is getting better. Again all I could do was just smile.

There is was a perfect moment. Life is far from perfect but those moments make it all worth it.