Tuesday, November 10, 2015

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.

Thursday, November 5, 2015

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.

Friday, October 9, 2015

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.

Thursday, September 10, 2015

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.

Tuesday, September 1, 2015

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.

Saturday, August 8, 2015

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.

Monday, July 13, 2015

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!


Tuesday, June 16, 2015

Time Flies

It's really late and I need to get to bed but I couldn't not post this.

I was making a collage of pictures for our Gastroenterologist. Tomorrow is our list time seeing him before the move. It's a little heartbreaking since he's the doctor we've had the longest. Not to mention how much of a driving force he has been in getting Squeaker the right treatment.

I decided I would make a card with pictures to remind him what much he has helped our Squeaker. As you can see she has grown up wonderfully. She is still skinny but puts on weight much easier than she used to. She sleeps better and the circles under her eyes are gone most days. I am continually amazed by her ability to love life one moment and the next be in full meltdown mode. I guess that comes with the 4 year old territory. oye...

Overall while sorting pictures and deciding what I wanted to use I couldn't help but be a little sad. Squeaker is growing up so fast. She always had a great personality but is now healthy enough to share it and tell us what she is thinking. Squeaker always wanted to be on the go and still does I don't know how she goes to far on so little sleep. Chemically I know it's the adrenaline in her system but I still think she is one of her super powers.

Mostly I was thinking about how much I love being her mom. Sure it's hard some days in general I love it. And honestly I love it more now than when she is an infant. Some of it I'm sure is there is less stress and more sleep. But I think a lot of it has to do with just getting to know her. The real Squeaker. Her thoughts, ideas, the stories she tells, and her laughter. What a sweet laugh to go with a sweet smile.

With all the crazy going on in our lives right now it was nice to take a few minutes and just remember how blessed we are. We have love, laughter, and a fantastic daughter.

Friday, June 5, 2015

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.

Monday, April 13, 2015

If Medical Issues Were College Professors

A few days ago I was thinking about how we just can't seem to get rid of the Reactive Airway Disease. For some reason my brain started comparing medical issues to college professors. This is the conversation I came up with. Yes I know, I'm a little strange. ENJOY!


Me: Well Hello Professor Reactive Airway Disease. RAD how are you doing?
RAD: Hello LR. I'm doing well. Glad to finally be here.
Me: Did you have a good winter holiday???
RAD: I did. It was nice to kick back and enjoy some family time.
Me: That's great.  Winter was pretty calm around here. Had to handle a few problems from the GI Department. Professor Gastroparesis decided to shut down the department without telling us. Caused some communication problems that set us back a few days. And of course Dr. Hizentra. For a Professor that only works one day a week she sure can cause a lot of problems. Two weeks ago she even had a breakdown. It's hard to lay the blame on her.  As I'm sure you remember that getting the Immune Department to do anything is nearly impossible; and she can only get in the lab once a week. I'm sure it's stressful. But honestly there wasn't much out of the ordinary around here.
RAD: Well I'm glad to hear your break was normal. But I'm ready to start the new semester. I have big things planed.
Me: You're ready to get back to work you say? Well... um... the Medical Board wants to close down your lab.
RAD: Why?
Me: Well with Professor Laryngomalacia gone we figured you'd want to move on to. He was your mentor. And a real force for disruption. From the very beginning he just kind of barged in and set up his lab. The Medical Board just figured we could close down the Disruption Lab and let the Respiratory Department run its self. After 4 years the Respiratory Department has a learned plenty about handling disruption and difficulty.
RAD: I think I have a lot to teach them without Dr. Laryngomalacia. He focused a lot on the upper airway. I want them to learn disruptions in the lower airway. Maybe even work more with the sinuses.
Me: We were hoping to let the athletics lab expand. And Lower Airway Disruption Lab will really slow down their work.
RAD: It's true that Athletics Labs and Disruptions Labs rarely get along. And Dr. Laryngomalacia was very hard for to work with. Especially for the Athletic Lab. Even the GI Department has issues with him. But I think, no, I know I can do better.
Me: I'm sure you can. Many places have dual Disruption/Athletic labs. But we aren't sure that we want to go that direction.
RAD: Well. I have a 5 year contract and I'm on track for tenure.
ME: That's true. We were thinking maybe you could take a paid sabbatical for the next year. Till your contract is out. The Medical Board is thinking that allergies maybe coming, and you could work in their lab. If we can get the Immune Department up and running properly I'm sure we will still need a consulting Airway Disruption Lab. It wouldn't be full time but it would be steady work.
RAD: You know as well as I do that Disruption Labs are getting harder and harder to find. Especially ones as active as this one. This Lab has slowed down some but there is still daily work to be done here. It is fantastic for training and research. In short I deny your offer. I will stay. I've made up my mind. I had all winter to think about it. I'm ready to take over the lab on my own.
Me: You know this will upset President Squeaker and the Medical Board. They had plans to spend more time with the other departments and working out their problems.
RAD: I know but I love it here. I think there is so much I can teach and do. I know I am probably your least favorite Professor but I am very good at what I do. And I want to keep doing it.
Me: Well. Okay. Then can ask a personal favor?
RAD: Sure you can ask.
Me: Please work with the athletic department.  President Squeaker was really looking forward to a full and active summer. And well, since she doesn't really understand your department I'm the one that gets yelled at. I know that the yelling can expedite your research it is hard on the rest of us. So please try to work with them.
RAD: I'll try. Promise.... now let me tell you about my plans for the up coming semesters.
ME: Ya know what. I think at this point I'd rather it be a surprise.
RAD: Okay. Fine by me. But it's going to be a great summer. I'll see you later.

Sunday, April 5, 2015

Best and Worst

     Sometimes just catches up to you. No matter how hard you try to be happy and see the good in the world. Every once and a while you just get hit with sorrow.
 
   Last Thursday was a girls night out. I love these. Usually we just meet up at a Laura's house, hang out in the basement, talk and eat food. And it not just chit-chat. We talk about our lives, tell hilarious stories, talk about our opinions, overall really get to know each other better. Seriously something we need to do more often than the every 7 months we are averaging right now.
     The night started out fantastic. We had a Usborne book party first, and books, hello, so much fun. After a couple hours of pouring over books we just switched into talking. It's what we are there to do. Large groups, small groups, back to one group it just flows as gentle river. And man do we laugh. I just can't explain how uplifting it is to hang out with these awesome woman. It is the best night I'd had in a long time. I was thinking about leaving because it was the time I told Trey I'd be home. I didn't want too, I was having so much fun. Then it hits...
     I get a text. From my best friend Spammers. Yes I call her Spammers. She has had to take her son to the hospital. With is severe allergies trips to the ER aren't uncommon but this wasn't the ER. This was being admitted. This was going to require blood work, a CT scan and maybe an MRI in the morning. My heart just sank. I shut down. He'd been having some health issues lately and it's just heart breaking for me to not be there for Spammers. But Colorado is just too far away....
     I get another text. This one is from Trey. Squeaker is having a hard time falling asleep. She is asking for mommy. Trey says they are fine but it makes me feel like a crummy mom. I'm not there when my baby wants be. Even though I know I need the night away, it still hurts. Now I'm really emotionally distraught. I don't want to leave because the idea of driving seems like too much. But I know I need to get home soon, mostly because morning comes way too fast. So I manage it sit up in the giant arm chair I'm lounging in. Laura has the best furniture.
     Others are starting to make like they are leaving, which in girl world means we will probably standing up talking in front of the door for another 30-45 minutes before we actually leave. Since everyone else is kind of moving I start to move a little more too. Amber notices I'm all of a sudden very down and asks me what's wrong. I tell her about the texts I got and for some reason I just start crying. Not like big ole sobs, but I'm weeping, I have tears coming out. It's making me feel really uncomfortable. I am not a big fan of crying. I don't care how I look, or what I sound like, I just don't like feeling out of control of my own  emotions when I cry.
   
So here I am telling my sad story, crying and just feeling miserable during what was 10 minutes ago the best night I had months. It went from best to worst that fast. Before I know it, it's going back to best again. Amber hops up from her sit and gives me a giant bear hug. Just wraps her arms around me and I feel loved. I feel safe. I feel that it's okay to hurt. Amber tell me it's all okay. That sometimes life is just hard.
      I pull myself together and stand up. Seriously I have to get home soon. I talk for a few more minutes with some others and just get back to being happy. Then I get a text from Trey than Squeaker is out and he asked me to be home before 2am, it's only 11 at this point. I start to feel better. After then end of a really funny story I see a few others leaving so I leave with them. As we round the corner of the house and head down the driveway Stacy comes up the driveway asking who's gold van is on the hill. I say mine and Stacy tells me that her sister Brooke is touching my van with hers.
     I just burst out laughing. I get on the road and sure enough there is Brooke standing on the brake in her van our bumpers touching every so slightly. In fairness Laura lives on a very steep hill. Brooke had just not given herself enough "roll space" for when she would change gears. And in Brooke's defense she had flown in from Denver that morning, and she is pregnant. Tired is an understatement in her case today.  I'm just laughing like crazy at this point. And I ask Stacy "Why are we letting the tired pregnant woman drive?" Both Stacy and Brooke start laughing. No one was hurt, the cars are fine and seriously it was the perfect ending to my up and down night. I get in my car and drive home.     
     It was up it was down, it was everywhere in between. It wasn't my best girls night out but it sure was a memorable one. 

Wednesday, April 1, 2015

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.

Wednesday, March 4, 2015

An Awesome Day

I have had an awesome today. Sure it had it's ups and downs, but as I sit down at the end of it I'm feeling great. What made it great? Well it's the little things.

1- A clean kitchen. I was able to get the dishwasher run and emptied. The kitchen cleaned, some beef cooked and frozen. Then I cooked dinner and cleaned the kitchen.

2- Laundry. I've been a little behind on laundry lately. I usually just do a load every day or two. So it never piles up. Well I feel behind. But with a day a of testing yesterday and doctors today I've just been focusing on getting the laundry clean. Once dry I'd just toss it in the tv room for folding later. Today I finished washing the laundry but getting it folded and put away!

3- Play time with Squeaker. The last few months with trying to take care of Trey and all his appointments I haven't had the energy to play with Squeaker as much as I used too. I feel pretty bad about it a lot of days. But I only have so much energy and when it comes to cooking dinner and playing I kind of need to make dinner. Today it was nice out I had decent energy so we opened the back door and played a game. 30 minutes of just her and me. No fussing, no meltdowns, just play. It was wonderful.

4- Picked up a book. There is a book series called Fablehaven. I have read the first two books, it's a five book series. When I was at the Library with Squeaker last week I saw the series on the shelves. And had the thought I should really finish it. Sadly Book 3 wasn't there, bummer. The librarians had it transferred and today I picked it up. Wahoo!!!

In all the craziness of the last few months I am so very glad to have and AWESOME DAY!!!

Monday, February 23, 2015

Hanging On

The nasty no sleep monster has decided to come back for a visit. He's been here almost 3 weeks and
his welcome is worn out. The biggest problem is the lack of cause. We know that Squeaker is un-well but poor sleep is pretty much the only symptom. Her nose has been a little runny but with no cough or serious congestion there isn't a lot we can do about it. We have the humidifier going, essential oils, upped her pain killers, not skipping inhalers, keeping the house cold. It is all helping some but not a lot. She is still waking every 45-90 minutes. There are times when she can get herself back to sleep but most of the time she needs some sort of attention.
So right now I'm in hanging on mode.

At this exact moment I'm in buried mode. I have Squeaker at my right, Zelda at my legs and Raek has plopped his 20lb self on my chest. I wish you could see it. Hahaha.

Monday, February 9, 2015

It's Just A Lot

Quick update and then I'm off to bed.

Trey has been in a specialized physical therapy program for 4 weeks now. And although he still feels like his brain is on the ocean he can walk in the house without a cane. Once out of the house he is supposed to use the cane because in less familiar surroundings you use more of your brain. We acquired a temporary Disabled Parking Permit for him. Especially when he has to drive himself to class. Yup Trey is still in grad school. We looked into pulling out for the semester but it was too late. It's been an adjustment in study habits but he is making it work. We have also started tracking calories, sodium, and sugar intake for the both of us. Not only is this helping us both stay on track about loosing weight but we can show all the doctors the sodium and sugar intake for Trey. Yes, they ask about that stuff.

Squeaker as you may have read is no longer squeaking. Looking back over that last few months though we have noticed she has been talking more. Sadly some of that talking is arguing and poor attitude. Hey she is 4 it was bound to happen. Sometimes it's kind of funny because she will try to take away our privileges when we don't do exactly as she asks. Sorry kiddo, that's just not how it works. Our biggest struggle has been when she gets hungry. Food can still be very painful for Squeaker so getting her to eat is a struggle. But if she doesn't eat oh my that's a horrible struggle. Trey and I have chosen our line in the sand and there were stay. We know it will get better and being a consistent parent is hard but we know it will pay off in the end.

As for me. Oh well I'm busy. If you didn't figure that out already. I am doing 99% of the driving, I try to entertain Squeaker daily so Trey can study. I try to keep laundry moving and cleaning done. I do the cooking, figure the calories, and pack up all the leftovers. I've also starting doing some testing site stuff to help earn a little extra money. Currently Trey is on short term disability insurance which is wonderful. But is getting to the point that it only pays 60% of his salary. I'm very happy it pays that, but it does leave us a little short every month. We have some savings but it won't last forever. I just figure if I can start now the longer the savings will last. I would love to pick up some work at home data entry. There are jobs out there but where Trey is not able to care for Squeaker, and do his rehab, I can only work during the night hours at home. In the future I may need to take a late night shift outside the home but we aren't there yet. Oh and to top it off I'm on day 3 of 5 of an antibiotic. I have a sinus and respiratory infection.

Which folks just proves how awesome my husband is. Trey has a lot going on. I know that chronic vertigo doesn't sound like much of a diagnosis but it is really hard to constantly feel like you are falling over. While I've been sick Trey has just been doing as much as he can. This weekend when he didn't have to study he's been letting me sleep. Since I still sit with Squeaker to put her to sleep he makes me warmed caramel milk and brings it to me. Then tells me "When she is asleep your bath will be ready." I mean honestly does a hubby get any better? He's just so awesome.

Well that's the update. I should get some shut eye. We see the Neurologist tomorrow afternoon. We aren't expecting much in the way of answers, but maybe a few ideas of what to do next or try would be nice.  So ya know, we'll see. :)

Wednesday, January 21, 2015

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.


Thursday, January 15, 2015

Toothless

Today Squeaker went to the dentist, Dr. Brandon. The dentist is never fun. Squeaker inherited my poor baby teeth. Combine that with teeth grinding, antibiotics, inhalers, nebulizer treatments and overnight drinking and well you have lots of teeth issues.

<--- This was while we were waiting for the medication to kick in.

This is how our day was supposed to go:
1) Stop liquids and food at midnight
2) Go to Dentist at 9am
3) Take the waking sedation medication
4) Wait and hour for Squeaker to get loopy
5) Get her in the procedure room
6) Start the nitrous oxide
7) Clean Squeaker's top incisors
8) Fit caps on incisors
9) Leave Dentist
10) Be home by 10:30-11 at the latest

     It was all great until Step 7. At that point the plan went out the window and we went down a rabbit hole.
     As Dr. Brandon trying to clean off the decay on Squeaker's teeth he started to worry about how much tooth would be left. He tried to figure out if he could even get a cap to fit. He went through what he had. I'm sure you have figured out that Squeaker is not happy about this. Poor Squeaker is being such a trooper. Even though she has been given a pain killer, nitrous oxide and Novocaine she was still uncomfortable and not afraid to let us know. Squeaker wasn't really kicking or wiggling but was pretty vocal that as she put it "I'm Done! I'm Done! I'm Done!". Poor Kid.
     After about 5 minutes of pushing and trying to get a cap to fit Dr. Brandon stopped and turned to me. He told me our options. We could try to glue the caps on but we would be replacing them in 3-4 months. We could try just cleaning and run the risk of further rotting, chipping, or abscess. Or we could pull the teeth. My heart sank. Dang it.... after a minute I just said, "Dr. Brandon I trust you. You do what you think is going to keep Squeaker's mouth healthy." I could see Dr. Brandon's wheels turning, then his shoulders dropped and his eyes got sad and he said "We should take the teeth. I don't want to but if we don't you're going to back here in two months doing something else to these teeth. Or worse we will have to go back to the hospital because it will be a more complicated procedure."
    That's what we did. The hygienist went and grabbed the tools needed. Dr. Brandon sat there with us and tried to soothe Squeaker while he waited for the tools. He was very sweet. Once we had the tools the teeth were out in less then 2 minutes. Squeaker was soooo not happy but the worst was over. After about 10 minutes of cool down time we were cleared to go pick out a toy and leave. We left at 11am.
     Stopped in at Kroger to buy ice cream, popcicles, and some other favorites for Squeaker. Then finally headed home. Gosh it was a long morning.When we got home Trey was a wreck over the news. Trey has naturally good teeth. I mean straight, clean, self healing. At 35 he's had all of 3 cavities I think. Watching his daughter have poor teeth has been hard for him. Feeling that he should have been able to prevent every filling, crown, and pulled tooth. He thought dental health was something that he could help control. He was terrified that at this rate she would lose all of her baby teeth long before her adult teeth came in. Once I reassured Trey that the rest of her teeth were healthy and that there was little or nothing we could have done he started to feel a little better. He really started to perk up once Squeaker started to eat 5 minutes later. She didn't eat a lot but Trey was happy to see that even with less teeth Squeaker wasn't going to change her life, so it shouldn't change his.
     The good news is with these teeth pulled all of the problem teeth are taken care of. She had 6 teeth pulled up top, and the top 4 molars have caps/crowns on them. Her bottom teeth and in perfect condition. Dr. Brandon said their isn't even plaque or tarter on them. He can tell we try our best but life and genetics were just against us. But by taking care of this now Squeaker's gums will be able to stay healthy and grow healthy adult teeth. And those teeth, my friends, are what she will have much longer. For now and the next few years Squeaker gets to be our Toothless wonder.

Monday, January 12, 2015

Another Challenge

Trey has been down and out, for about 3 months now. He will continue to be so for a quiet a while.
Through lots of doctors visits, testing, and resting we have learned that it is a neurological issue. Trey's brain is simply not dealing well with all the input the world gives it. He is suffering from
     For the last few months Trey has been stuck in a bed or in a recliner. He's played a lot of games, read books, and watched a lot of TV. He has started to walk with a cane and that has helped a lot. Which mean he isn't falling anymore and walking around the house isn't as tiring. He's still having to take it easy and limit his time out of the house or with certain activities. Right now the big energy suck is energy to go back to school this semester with two graduate classes. It's only been a week but so far so good. Since Trey hasn't been to work in a couple months I'm glad for him to have something to help test his limits without pushing too hard, since the classes are only a couple hours once a week. 
     As far as treatment goes week he starts a specialized physical therapy program for dizziness. Then in February he sees a neurologist. Hopefully by the time we see the neurologist we will have enough information from the therapist and from tracking daily activities that the doctor can help pin point issues. Or move directly in the testing and treatment phase instead of "try this" and "track this" phase.
     Gosh I'm tired....
headaches, fatigue, vertigo and dizziness. Yes vertigo and dizziness are two different symptoms, crazy the things you learn when you are at the doctors.