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.

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.

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.

She's Given Them Up

     Squeaker officially gave up her bottles today. Yeah, Yeah, Yeah.... a 4 year old has no need to use a bottle, I am destroying her teeth by letting her use a bottle, 4 years old is WAY to old for a bottle how did you let it go that long? So this isn't a big deal, she is 4. Well guess what this is a big deal for OUR 4 year old.
     What makes it even more awesome is it was her choice. We've been working for months on getting Squeaker to give up her bottles. But to her they aren't just bottles. They are security. Taking away her bottles is the same as taking away a child's toy or blanket that they sleep with all the time. We didn't want to just rip it away from Squeaker. We were trying to use less and less bottles. We'd make her wait certain times before giving her more. It's been a struggle. But little by little it's been getting better. The last month or so we've been offering to buy her a new a new cup or bottle for night time. We aren't opposed to letting her have something to drink during the night it was just time to move on from baby bottles. Well today she did it.
     We were at Wal-Mart and I decided to take her by the water bottle section. Just to see if there was something she wanted. As usual she found a bottle she liked. I told her the deal was I would buy her the new Elsa bottle she wanted but she would have to give up ALL her baby bottles. Usually at this point Squeaker gives back whatever she has picked out. Then tells us she will stick with her baby bottles. Today she didn't. I checked with her several times. Making sure she understood the commitment she was making. I even said we were going to go home and throw out all her baby bottles. There was no going back.     
     Once home Squeaker wanted to gather up all her bottles and throw them out. We did and as luck would have it is trash night. She even helped me take the bag to the curb. And when it came time for bed she wanted her new bottle and we snuggled up. No fuss, no fight. She has even had one wake up so far. She didn't ask for her baby bottles, she just wanted a quick drink, fussed for a few minutes, and then back to sleep.
    I'm still in a little shock and awe of how quickly this happened. I mean it shouldn't, Squeaker has always been one that once she decided she was going to do something she did it. Today was the day she gave up baby bottles.
   Time to get back to work. Moving day is in 5 days!

The Crazy Continues

I had very much intended to write a post in May. Sadly I missed that deadly. It feels as if May blew up in my face.
May 1st- My laptop died and we had to run out and by a new one. I am now using Windows 8. I am not a fan! Thankfully Windows 10 should be launching soon and I qualify for the free up grade.
May 2nd- The BAKE! The Baby And Kids Expo was my first time working the Juice Plus+ table. I spent all day talking to people about what Juice Plus+ is and how it can help the body. Squeaker stayed with Trey all day. A little scary for me but we all made it just fine.
May 5th- I finally breakdown and call the sleep doctor. For that 2-3 weeks prior Squeaker had been waking up at 12-1am and being awake for 2-3 hours. Yes folks that was as miserable as it sounds. We tried everything we could think of and it wasn't helping. Which meant it was time to call the doctor. The doctor thought about it for a day and then changed her Clonodine. It's now 1/2 Tab in the afternoon, 1 Tab at bed and 1/2 Tab 4-5 hours later. The goal being to get Squeaker back to sleep as quickly as possible. Not only does it get her more sleep but it helps re-train her brain. So far it's been going well. It's been a month and already she doesn't need that third dose every night.
May 7th- Left for Indiana. 7 HOUR DRIVE!!!! Stuck in traffic for 2.5 hours!!!
May 9th- The wedding! A sweet quiet little ceremony followed by a private luncheon. The full reception was planned for later when more of the family could come.
May 10th- Mother's Day. Drove to Nell and Jim's new house. It's wonderful to have them within 2
hours. We look forward to seeing them more often.
May 11th- Spent 3 hours re-writing my resume. And started applying for jobs close to my parents house. I'd already been applying in Alabama for 2 months with no luck. I figured it couldn't hurt.
May 15th- Started to get sick. Trey had already had flu symptoms for 2 days. Mine presented more as a sinus problem.
May 18th- Made it home in a normal 5 hours. Wahoo!
May 20th- Took Trey to get have some medical tests done. We've been waiting months for these tests.
May 21st- Full blown sinus infection and swollen lymph-nods, even took a nap by myself. What a gift.
May 22nd- I was notified of a job interview back in Indiana. For the following Thursday.
May 23rd- Very busy day and forgot it was my brother's birthday. #awfulsister
May 25th- Memorial Day. Our plumbing stopped working. The kitchen sick, the dishwasher, the laundry were all not draining properly. Just dandy. The day was so crazy we forgot to do Squeaker's infusion.
May 26th- Plumbing was fixed and I was able to start doing laundry so I could pack for Squeaker and I to go back up north. Trey was going to stay behind to take care of the animals.
May 27th- Took Trey to the doctor because he still wasn't better and his results were in. All normal... annoying. Had some lunch, drove Trey home and then Squeaker and I hit the road. 8 hours later we made it.
May 28th- Have my interview. It's actually a direct hire, so pretty much if you show up you are hired. So I have a job!!! Wahoo! Means we are moving. I don't know when the job starts yet so the moving plans are still up in the air.
May 31st- Drive around the area to see what places are safe to live.

Can you see why I feel like May blew up?? It's a little nuts.

As for June so far the crazy continues

June 1st- I was getting ready to go home when I get an e-mail to go interview for an even better job in Indiana. Wahoo! I decide to stay one more day.
June 2nd- Have the interview, pack the car, drive home, mow the lawn, pull some weeds, make dinner and do infusion for Squeaker.
June 3rd- Get an e-mail from job #1 that training starts June 10th. I have to option of waiting until the next training class but it's not scheduled yet. I became physically ill thinking about trying to move in a week. I passed on this training. 5 minutes after I decided to pass I get a phone call from job #2. This is a better job for our family. Better hours, more steady work, I wouldn't be on my feet all day. And it would allow me work around Squeaker's appointments. Well, I was offered the job. I do have to be up north to sign some
paperwork on June 10th, but the training doesn't start until July 26th. Plenty of time to pack and move.

Now we are busy packing the house, stripping wall paper, and making plans to move. Life is just a little nuts. But it's looking pretty good.

Pure Crazy

I have to say I'm pretty impressed that it's been less than 30 days since my last post. It has just been so very crazy around here. I kept meaning to sit down and post things. Then I would get distracted with life or doing things. Like sewing a new dress for Squeaker. That's right I made that dress!! I'm proud of it. It has appliques, trim, hand beading, binding, an invisible zipper and it is fully lined! Yes dear friends I move truly moved into the world of being a seamstress. I can't design or pattern very well, but I sure can cut read and alter a pattern if needed. Oh happy day!

Squeaker has been pretty healthy. Sleep has started to go back to normal, when we can stay on schedule. The last couple weeks between doctors and travel we have missed a lot of naps. And it has been rough for all of us. Squeaker has been a pretty good trooper about it all but it is rough. This last Monday the tubing broke on Squeaker's infusion. By the time I got the pump stopped almost 2/3rds of her dose was gone. I talked with the pharmacy and they talked to the doctor. We decided since Squeaker has been healthy that we will forgo and extra infusion and just wait until next week. This morning Squeaker woke up sick-ish. Groggy, didn't want to get up for over an hour. She was pretty happy during the day but a stuffy nose and easy meltdowns but we survived. Squeaker will probably get sicker as the week goes on. If she gets too bad we may have to move infusion for this week to Sunday.

Trey is more stable but in his head he is still very dizzy. He has been wearing glasses that help block

certain types of light and hats to minimize the light that gets into his eyes. It seems to be helping a lot keeping the brain in check. Trey still walks with a cane, but relies on it less. We were up in Indiana for Spring Break and had a chance to try some acupuncture. It seemed to help too. It will be a while before we can go back. Yes there are acupuncture clinics where we live but they are more expensive. While we were visiting family we found out that not only did the short term disability get denied but Trey lost his job. We are working on a plan to stay here and have Trey finish is MBA. There just need to be a few ducks that line up for that plan to work. We know if our plan is right the Lord will help guide us.

Today was a wonderful southern spring day. We cleaned up some brush in the back yard and I mowed the lawn. Hopefully in the next week we can clean up the garden patch and get a garden planted. I swear the best way to treat stress, anxiety, and depression is service for others and gardening.

Seriously, It's About Time

                                         It took 4 Years, 4 Months, and 17 Days think about that
                                                   4 YEARS, 4 MONTHS AND 17 DAYS!!!
     It took that long for Squeaker's Laryngomalacia to be resolved. That's right the LM is gone! GONE GONE GONE!!!! It is no longer swollen and it is no longer floppy. Squeaker was born with a moderate to severe case of LM. We chose not to do the surgery, okay I was scared out of it by a doctor. But any way she never had surgery, we treated with inhaled steroids and time. Knowing what

I know now I probably would have taken a different path but I can't change that now. It was hard a lot of days. REALLY HARD.
     It got very hard when at 12 months old when most kids with LM are just about out grown the issue and Squeaker was just as terrible as ever. We were still in the ER at least once a month breathing issues, its bad when the ER nurses know you by name. On top of that we were in the doctor's office about every 2 weeks too. We never had to be admitted for monitoring or spend time in the ICU. Thank-goodness Squeaker has my fantastic lung function and oxygenation.
    By the time Squeaker was 2 she was barley talking and having nebulizer treatments upwards of 10 times a day most of the time. It got a little easier when Squeaker was 26 months and started seriously talking. As she was able to start communicating more, which decreased the meltdowns. Which meant her breathing was more stable. Can you imagine being scared of your child having a tantrum because you fear they might stop breathing? How do you discipline a child that can't through a tantrum? I'll tell you it's rough and it takes a lot of patience. This year we did manage to have less ER visits.
     Just after Squeaker turned 3 we had hope again. Winter came and Squeaker stopped wheezing all the time. For 6 wonderful months there were no nebulizers, no inhalers, no ER and minimal doctors visits. It was blissful and we thought it was all done. Then summer hit. Ug we went from no inhalers to 10 times a day again. For Squeaker LM and Humidity never mixed well. We live in Alabama, you can guess that we have humidity in spades. We spent last summer inside. It was rough but breathing is more important. We even saw the ENT and he noted the LM was still present. Better but still there. uggg.

     It started to cool down for Squeaker's birthday and we were able to back off the inhalers. Breathing wise winter was just dandy. We kept up with the inhalers to help stave off infection and flu. It worked pretty well between the IGG therapy and inhalers we had very little illness. In the last couple of months I noticed that Squeaker stopped having stuttering breaths or stopping breathing while she slept. Of the years they had become less and less. When I thought out it I was hearing it maybe a couple times a month, and it was always when Squeaker was ill. Which every human does. Wahooo something normal. I also started to be able to use the humidifier in the house without Squeaker's breathing getting worse.
      Today. Today I took Squeaker to the ENT because she has been complaining for a sore throat for a long time. She also had a runny nose for a couple of months. It just didn't seem right to me. Well the ENT took a look with a rigid scope to see if Squeaker's vocal cords and airway were the issue. And they weren't they are perfectly normal. He thinks it's what is called an non allergen rhinitis. Which is a big way of saying her sinuses are reacting the pressure fronts and moisture changes. That means her poor nose is confused on if it is supposed to make mucus or not. He did suggest when we saw GI I next they may want to do a scope just to make sure their side of life is still in good order. Sometimes esophagus and swallowing pain can confused with throat pain. Especially when you have a little one who is still learning.
     So yup 4 years, 4 months, 17 days. Weighing it at 34 pounds and measuring 40.5 inches. That was when our first condition was resolved. My little Squeaker no longer Squeaks, and I couldn't be happier about it.

Blessed We Be

In general we live paycheck to paycheck. I have a chart that tells me exactly what day the bills get paid and with what paycheck they get paid with. I can also tell in each pay period if we are going to be tight on money or have some extra. Yes I am an organized geek. But for the last 4-5 years we have been living very tight, and this geekness has kept us in the black.

It was not uncommon for our finances to be so low that I would wait 3-6 days for payday to come around. Only then did I have enough money to go grocery shopping or put gas in a car. Anyone who lives like this will tell you it's not fun. It was life though, especially with all the financial demands of Squeaker's medical care we just didn't have much choice in the matter.

Over the last year as we have decreased our credit card debt through student loans and a refinance debt reduction loan. So yes we are still carrying debt but with lower monthly payments and much lower APRs. This has opened up our cash so we can stop using credit cards for gasoline and groceries. We don't use our Credit Cards of anything else anymore either. If we don't have the cash we don't buy it. (baring emergencies- Like new tires for the van when one blew out on the interstate)We are also to take some of our freed cash to "snowball" our debt.

Well we still live paycheck to paycheck with a small savings now. We most certainly we can't live a month without a job. Today though we hit a mile stone. We forgot it was payday. For years I looked forward to payday and had every dollar planned and prayed it would all work. Today I was half way through breakfast before I remembered. Trey forgot entirely until I told him I had paid the bills. It's not like there was a ton of money in bank account but there was enough to buy the basics and fill up my van. I didn't even have to think about it. WHAT A BLESSING!!

You may say well you worked hard for it and deserve it. That is true but I know Heavenly Father is looking out for us. He lead Trey to school as a certain time, and we tried several times to get a debt reduction loan until we found one that actually worked for us. It has also helped that Trey has been getting double bonuses from work as a retention bonus.

We still have a long way to go before we are truly debt free but what a relief it is not have make $5 last 6 days. We still have to watch our spending but to know the basics are covered, yeah I'll take it. :)

She's Normal!!

It is official Squeaker is normal... well partially. I was updating her binder because we have moved from liquid to all pill medicine. And let me tell you that is AWESOME!! The battle of the yuckies is not nearly the battle it was. Honestly it isn't even a battle more nights :) But I had to adjust the information in her binder and I decided to take a look at her height and growth chart.

I was making sure all of her percentiles were right on the chart. Mostly because I was interested to see how she has compared over the years. Well I reached the last entry which was just after Squeakers 4th birthday. She was 29lbs and 40 inches. As you can imagine 29lbs is pretty light for a 4 year old. She is in the 5% percentile for weight. Honestly that is where Squeaker has been most of her life. I remember doing a happy dance when we Squeaker moved up to 5%. She from 4 months to 2 years and 4 months old she was less than 3%. TWO YEARS! So the first time we hit 5% I did a happy dance. Then the next month when it stayed up I did another happy dance. Sure I'd love for her to have more weight but as long as we are on the chart and gaining I'm a pretty happy camper.

Okay so 40 inches tall. This girl just seems tall, especially with weighing so little. I was very interested in seeing her percentile. Drum-roll please....... 55%!!!! That's right baby my kid is in a normal percentile! And, and, and it's the second highest percentile she's ever hit. (Height wise she was 90% at birth) WAHOOO!!!

Now if you can do the math this means her BMI is 0, yes I mean 0. The envy of everyone super model and she eats frosting all day :) Of course her doctors are happy about it, well neither am I  honestly. I'm just going to ignore it for now and revel in the fact that for right now she is normal.