Karma

Karma

noun

(in Hinduism and Buddhism) the sum of a person's actions in this and previous states of existence, viewed as deciding their fate in future existences.

Over time people has restated this as "what goes around comes around". How ever you want to think of it or call it, it's real. This past week I have felt like a little good cosmic karma has come my way.

About three years ago I made an awesome Minecraft Theme BINGO game. You can find it here.  It is a very nice set with 20 cards, a master card, and covers. As of today it has been re-pinned 2500 times, viewed on the blog 37,673 times, used in no less than 6 different countries, and with 203 comments made. Most of the comments state how much they enjoy a free finished printable. We all know that can be hard to find. Well this week I found a free printable I needed.

I found Star Wars printables for movie night. On a wonderful little site called Sandy Toes and Popsicle.

Okay let me back up just a second. The reason I wanted Star Wars stuff was for our movie night. With Squeaker's issues it can be really hard to take her to a movie theater. Lots of people close by makes a momma nervous. Also because she is so small she has a hard time sitting in the seat comfortable. Meaning she won't sit well for long, and often can be disruptive to others around her. Combine that with the fact the Star Wars came out in the middle of winter and everyone was sharing germs, well Squeaker didn't get to see Star Wars in the theater. The rest of us took turns and did, she felt pretty left out. We started watching the other movies at home and then she pleaded for us to take her see the new one. It just wasn't happening.

Well here it is a few months later and the video is out. I got it in my head a few weeks ago we should do a viewing party for Rayne. Make it a big deal with snacks, and special stuff. So she can feel the excitement we did. I was trying to find Star Wars themed snack ideas and that's when I found the printables.

This lady is a genius! Instead of making whole new snack she just renamed them. Then she made the labels to share with everyone. That's my karma. I sent awesome into the world and it came back to me when I needed.

The only changes I made was the chip cans. In the original pattern you have to cut the cans down to size. Well the short stack Pringles cans are just about the right size. Not the super small ones, the ones that from a distance look like full size, but when you get close you realize they are smaller. Those ones are perfect, no resizing needed. I also bought a giant bag of Gummy bears and put them in sandwich bags instead of buying the pre-sized bags from the store. The other major change I made was I used Ginger-ale in bottles not the traditional cans. The labels didn't fit as well but they worked.

I hope everyone enjoys these as much as I do. Please leave her thank you notes too. These things are hard work and pats on the back are greatly appreciated by their creators.

May The Force Be With You!!!

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.

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.

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.

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.

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. 

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!!!

Assemble The....

MINIONS!!!!

Aren't they the cutest little Minions?! Squeaker loved having cousin Naomi around to go Trick or Treating with.

Universal Studios Orlando

Instead of trying to tell you about our great day at Universal Studios I'll let the pictures do the talking. Sadly the compression rate on the loader for blogger is really bad but you can still get the idea.

August 11, 2014

July

Alright here is the catch up. July was a fun even though Squeaker's breathing was anything but normal. We had lots of snoring, wheezing, and coughing. Squeaker spent the entire month on an extended course of steroids and anti-biotics. Some days were still pretty rough.

July 5th-- I took Squeaker to Home Depot for her usual Kids Class. Of course it was a lot of fun but it was also special. This one marked #12 in a row. That's right I managed to get Squeaker to an entire year of Home Depot's Kids Classes. Not only has it been great for Squeaker but I'm pretty proud I managed to never forget and keep going.

July 7th-- Our new diaper bag came in. It has Muppets on it, and Squeaker just loves it. Even though the bag is as big as she is, she still insists on carrying it around most of the time. I'm glad is has perfect size pockets to carry her epi pen.  It just happened to be a day we went black light mini golfing too. Another thing Squeaker just loves to do. I wish there was a more fans in that particular place but it works out okay.

July 16th and 17th-- Trey is finally feeling better at this point. For the two weeks before Trey had another round with Benign Paroxysmal Positional Vertigo (BPPV). So yup he had on going vertigo and nausea. It was rough for all but we made it work. Squeaker and I did out first Jamberry Pedi and Maicures. If you haven't heard of Jamberry yet I suggest you check it out. I'm not a super girly girl but from time to time I like having my nails done. The problem for me was the polish never seemed to hold very well. Jamberrys hold up to my crazy nails and they are much prettier than I could ever do on my own. Squeaker calls them "pretty nails." Squeaker was originally going to stay home from the party and I was going to get some mommy time but alas with Trey barely able to stand without falling over Squeaker went with me.

July 21st-25th-- INDIANA!!! Of course going to Indiana is always fun for us but this time was even
more so. Why? Because Nell, Bug, and Byrd were there too. Bug, Squeaker and Byrd all had a blast together. Blueberry picking, bowling, swimming, and learning to climb trees. Plus playing, running and doing what little girls do. I'll tell you all three of those
girls were tired at the end of each day. :) Sadly it was towards then end of the doses of steroids so they weren't as effective so Squeaker had some rough nights. It worked out okay. One morning after a particularly rough night I was trying to go rest my eyes and Squeaker asked if she could go get Grumpa. I could hear him upstairs working on breakfast so I said, "sure". Next thing I knew it was 2 hours later and I felt like I could leap tall buildings in a single bound. I was so grateful for the extra hands and entertainment for Squeaker.

July 29th-- Off to Birmingham we went. We saw the Pulmonologist and had to change one of
Squeakers inhalers since she still wasn't stable in her breathing. Also we had start doing albuterol before any "vigorous" activity lasting longer than 15 minutes. Especially the outdoors ones. This means I now carry and epi-pen and an inhaler with chamber and mask. I thought you were supposed to carry less as your kids got older? The big news of the day was Squeaker weighed in at 30lbs and measure 38 inches tall! Yes my dear friends my daughter can grow! Squeaker has also decided to start making silly faces half the time when I'm taking her picture. It's fun and frustrating. She tends to change her facial expression too quickly for me to catch good pictures.

Fake It Project- Sharpie Tie-Dye

This visit up north Squeaker was already on a strong antibiotic so I decided it was a great time see all the cousins. I know it sounds a little backwards but it does work for us. It turned out that only Lizzie, Brad and their kids were available. But with 5 kids 7 and under and all with special needs well it's not like we could just go to the park, or zoo, or whatever. It takes just a little more planning. We need some focus or a project to help in keeping the kids focused on positive things. That's how we keep the kids from getting into fights.

The plan was made to go out to Lizzie and Brad's house. With all the therapy stuff, play stuff, and a pool there was a lot to help keep the kids happy. And then I thought, what about a "Fake It" Project to help keep the kids focused. Something fun and enjoyable but super easy to put together.

Every so often I do what I call a "Fake It" Project. It's not a perfectly finished edges, the lines may not be straight, or it may just be unfinished. It may not be the best but it does the job. And then some day I may take the time to make it nice, pretty, and perfect. So it's Fake It until I Make it! :)

I found some light/heat blocking fabric at Joanns. Cut it up and hemmed it so it would hang on a curtain rod. But that wasn't very pretty, curtains in kids rooms should be fun. So I thought lets but something fun in front of the Light Blocking Fabric. Why not Sharpie Tie-Dye Curtains!!!


Materials Needed:
Cut, Washed, and Hemmed for Hanging Fabric
    ---We used White Muslin. I Zig-Zag stiched the edges to cut down on the raveling 
Sharpie Permeate Markers
    ---Sharpie brand work best. You can try fine and chisel tips. Extra fine point won't work.
91% Rubbing Alcohol
    ---We bought 3 32oz bottles and used 2 on about 8 yards if fabric
Spray Bottles
Cheap Shower Curtains
    ---Dollar Store ones work great
Masking Tape


Prep-
Clean off your table or work area. Outside works great since alcohol can be stinky. Lay down the shower curtains and tape them down. Then put your fabric down and tape down if you need too. Put the alcohol in the spray bottles.

Work-
Get out those sharpies out and start coloring! Big shapes and thick lines work best. And lots and lots of colors!!!
Once you are done coloring get ready to spray. You can spray in the same spot you colored or you can move it out to another table or grass. Just make sure it's a place you don't mind getting ink on, or cover it. We did it in the grass.
Now spray, spray, spray. You want to saturate the fabric with the alcohol. That will give the best run of the colors.
Then just leave it to dry.

To make sure the color is good and set toss it in the dryer for a few minutes. When you need to wash your project just wash on cold and dry.

It was a great project. All the kids (ranging from 7-2) enjoyed doing. The kids were super excited to have their own art work on the windows.

This style of Tie-Dye will work on pretty much any cotton fabric. Lizzie is planning on doing some t-shirts, and bags for the family. Last Christmas I did this treatment on homemade super hero capes, those were a hit too.

Details

As promised the details of our lives,

The last few weeks have just been a blast. With Squeaker healthy we have been able to do so much. We went cosmic golfing, bowling, a family reunion, and A LOT of playing Wii.

About a month ago Squeaker discovered she now had the muscle tone and control of her fingers to
play the Wii. Yup go ahead and judge us for being awful parents to let our 3 year old play the Wii for more than 15 minutes a day I don't care. It started as a nice indoor activity for what felt like two weeks of rain outside. (If you don't know the pressure changes that come with rainstorms make me hurt and pretty useless). Then we started to see her fine motor and hand eye coordination improving. After about two weeks I started to notice she was playing too much and didn't want to do anything else. So we took a break and showed Squeaker what else she could do with stronger hands. It's no longer and addiction. It's back to being something we use when Trey and I are both tired and need a break.

Cosmic golf is a blast with a 3 year old, provide you have patience. Squeaker loved the way the colors changed in the light. She also loved putting the ball about 8 inches away from the hole and hitting it in. I have to admit if she didn't make it from there she would go and try again from the same spot. She tried really hard to work on getting the ball to do what she wanted with the club. It was also the same day I got my new phone. A Samsung S5, yes I'm in phone heaven. :)

We went bowling about 4 times over the last couple months and countless games on the Wii. Squeaker is a natural at real bowling. With bumpers but no ramp she can score in the 40s no problem. She has even gotten a few spares and strikes all on her own by carefully planing where to puts the ball down and how to push it. We found out about Kids Bowl Free. Where you find the local bowling alley when their free kid bowl times are and register your kids 15 and under. Each week you will get and e-mail with your coupons for each child to have 2 games everyday! Then you can buy an adult pass that you can put 4 names on and for $25 each adult can bowl two games each day with the kids all summer long. You do still have to pay for shoes. But even if you go twice as a family the pass will have more than paid for it's self. I'm thinking of investing in shoes for our family since Squeaker loves it so much. Plus as in indoor activity I don't have to worry about her heat intolerance.

Right before we left of Kentucky Squeaker's heat intolerance showed up again. In the lovely Alabama

way we went from rainy and chilled to 80 degrees and humid. Poor Squeaker was squeaking and wheezing like crazy. So back on a controller medicine she went, and an oral steroid course to get her on track. Bummer... I thought we had beat this. Apparently it was just the cold giving me false hope. Oh well.

Trey's brother Lee recently returned from a 9 month deployment on a navy ship and for some R&R his family decided to head up to Kentucky and see the family. Trey took some time off work and so we had a little family reunion. I say little only for the sense that it was just a BBQ planned on short notice. When you get 6 siblings, 5 spouses, Trey's parents and grandmother, and then add in 18 kids... that is 32 people. Things are never small with a crowd like that. It has been 4 years since we were all together in one place. That was one marriage (Lee and Dee) and three kids (Squeaker, Naomi, McKinley) ago. It was a crazy few hours but man a lot of fun.

Sadly Squeaker took away a few more germs from the party than she could handle. With traveling her breathing still wasn't balance, even with a second run of oral steroids. But a day or so after she really started to show signs of not feeling well. She perked up just enough to pass her physical and have dental surgery. Then down hill it went and fast. Monday morning Squeaker actually asked me "Go bye byes, doctor, feel better?" Can you guess what we were doing a couple hours later?

At the doctors I had to twist the doc's arm to get Squeaker an antibiotic. I told her that Squeaker had had this junk for about a week and trouble breathing a week before that. So I tried to let her get rid of it but it's not happening. The doc (a random resident on the cough and cold call) kept nodding her head and saying "I understand" and I explained that with her immune deficiency she can't fight off things. I had her history binder there and showed her. Again "I understand, no problem. " The doctor looked at Squeaker and said, "Yup she has that sinus junk that is going around. Non allergy congestion usually takes about 3 weeks to clear. Since she is deficient she will need extra time. Come back in three weeks if she isn't better we will give her something." I about yelled at her to go get the attending. Instead I calmly said "She needs treatment now." It wasn't until I got the doctor to look at Squeaker's history and the fact that she takes a prophylactic antibiotic did she realize I knew what I was talking about. She started muttering something about if your on a prophylactic antibiotic you shouldn't get sick and if you do it's and issue. Gee ya' think?? We see the immunologist later this month. I plan on getting a letter from him stating the treatment procedure so I don't have to do so much fighting.

Thus ends 8 weeks of wonderful health. But on to summer we go head strong and full of hope. WAHOOO!!!!!!!

Upcycled Windbreaker

For most woman if you buy them expensive jewelry or clothes you win their hearts. Well for me that doesn't work. Most clothes cause me pain and I'm allergic to most metals so jewelry is a no go. Trey knows the true way to my heart, a tool or gadget of some kind this Christmas it was a new sewing machine! I've had a sewing machine for the last few years and it most certainly has been a blessing but just look at that picture. If you sew who wouldn't want a full computerized machine? And yes I'm a Project Runway fan to that just makes it even cooler.

Then for our 6th anniversary Trey watch Squeaker all day, cleaned

house and cooked all the meals so I could lock myself in the sewing room with a big project. I was making a new messenger bag for Infusion days. A bag to hold the laptop, a pocket for the tablet, space for a couple of water bottles, a few snacks, diapers, and a couple of small books. Our diaper bag is close to holding everything but the laptop. The new bag is just a little bigger and with pockets for the electronics.

Now money is tight right now, so I wasn't able to buy any fabric. It all had to come from my stores, which is mostly flannel. Then I found my old middle school color blocked windbreaker. (Sorry no before picture) I have been meaning to take it apart and use it in a quilt. I did a few measurements and realized I could use it for the bag. Which would give the bag great color and the windbreaker was nylon what an awesome fabric for a traveling.  Dug a little further in my tote and I found some good fabric for the lining. Don't ask me what it's made of, it was a remnant I picked up somewhere along the way.

After carefully seam ripping the jacket to pieces I cut it up according to my pattern. Then cut and

sewed the lining. Then I sewed the bag. Attached the two parts and Ta Da! The strap will probably get shortened but overall I'm in love.

Final measurements are about 17 inches wide not including side pockets. 3 inches deep and 12 inches tall.

The tablet pockets are the jacket pockets just put in the bag.
The side pockets were cut 8x10 rectangles (I think) and the elastic on the pockets is the elastic cuffs from the sleeves.

What a Month

 We fought and beat two rounds of bronchitis. More importantly we have had a few "healthy" days in there. Which we just went out and enjoyed greatly. We taught Squeaker how to gather pecans, do split jumps and to say "I love you more". Sure our month was a little hectic but a lot of fun.

In other news I talked to the Immunology Insurance Coordinator, Jan, today and well she wasn't happy. Apparently the doctor never told Jan Squeaker needed to put through for IVIG therapy. So the process was never started. Jan told me she would get on it today and put it through as a rush order so hopefully we can have our first infusion in the the next couple weeks :)

On Thursday we have a sleep study for Squeaker. I was hoping to do one at home but since we are

seeing a new doctor he wasn't to try the hospital first. Our new sleep doctor, Doctor Roy is a fun guy. Not only is he best friends with Squeaker's Pulmonologist but he is open to real life. He didn't care that Squeaker and I still co-slept, and that if I say Squeaker is having hard time sleeping then she is. So if the hospital sleep study comes back normal we will do other tests. Wahoo! I love doctors that believe me.

Um yup that's it... short and sweet because well I want to sleep :)

The Upside

With Squeaker's crazy sleep schedule I'm awake at odd hours and for long periods of time. A lot of times I'm too spaced out to do anything. But there are nights where I'm wide awake listening to Squeaker breathing or just waiting for a freak out of some kind. During that I'm I like to be productive. I'll research different school things, or understanding a diagnosis, this is when a lot of flash cards get made :)

This week is Retro's 14th Birthday and he is having a Minecraft party. He or my mom... not sure who decided that they should play Minecraft Bingo. I don't know if you have ever googled that but it comes up with the online Bingo game, or a Bingo card you can use while playing the regular game. Nothing for a group game. Mom was not excited to make a new game from scratch so I offered to do it. Especially since yesterday was a sick day and I knew I'd be up with Squeaker.

After spending no less than 10hrs on this project I figured I had better share it for several reasons. I want recognition. I'm really proud of this one and it was hard to figure out what to use since I know nothing about the game. So yup I looking for pats on the back. Secondly as the saying goes "If I can't find it online, then it must not exist." Online research is one of my super powers. And if I couldn't find a good Minecraft Bingo game it must not be out. Minecraft parties are growing in popularity and another activity for already stressed moms would appreciated. Bingo is a great activity for parties and play dates, it's simple straight forward and it doesn't take an adult to run it. A child/teen with and understanding of the game and some reading skills can run it. Giving the adults a chance to heaven forbid get something else done :)

It's in two files. The Master Sheets, and Bingo Cards. There are 20 Bingo Cards.
***Please make sure you click on the links to print the cards. Not just the pictures.***
Update 2024 *** The files should be available to view and print when you click on the link. I will not be granting admin access please do not request it. This account is currently no monitored frequently. Every year or so I have to update the security settings sorry if this causes any inconvenience for your party.***

Family Home Evening Charts

Family Home Evening (FHE) is a program in the LDS church to help strengthen families. You can read more about it here. But the basics are the family that prays together stays together. And to help make sure the whole family is involved we make these cute little boards or charts so we can keep track of who is supposed to do what.

Well Trey and I decided it was time for a FHE chart. I want a nice wooden one but I could find one I liked. Which means I'm going to be designing and making my own, with character meant for our family. Until then I needed something. I went searching for papers and found some adorable ones at MeinLilaPark. Then I whipped these up.

Frog FHE Chart

 

Stars and Stripes FHE Chart

Grey FHE Chart

They print out on a standard sheet of paper. My plan is to laminate the sheet and use wooden clothes pins with our names on them. I'll post pictures of those once they are done. I was just to excited to get these done that I had to share.

You could also use magnets or once laminated you can write on it with a dry erase markers.

Have any ideas for other themes or patterns??

Just A Day

  As I sat down to update about the most recent in Squeaker medical I couldn't figure out how to do it. I just didn't know where to start. Although nothing really has changed... I think... it just seemed depressing to write about it. For the moment I'm just going to post about daily life. I'll save all the medical stuff for another time.

  Most mornings she wakes up and she immediately wants to go "outside pool water" I could be 5:30 in the morning and that's what she asks to do. I'm not joking she's done it. About 50% ehhh maybe 40% of the time I manage to drag myself out of bed and go outside with her (It will be less an less as fall comes) I try really hard to get her to eat something or play a little before we go out. That way I have a chance to wake up and stretch. If I can do that I don't feel like death and can really enjoy being with her. The last few days me waking up and moving just hasn't happened. Which has a lot to do with Squeaker not sleeping well. I have no clue why but she has been in uber cuddle and I'm going to lay on mommy mode. Which means I end up contorted, laid on, and smacked more than usual.

   Once done with breakfast or pool or whatever we are watching the puzzles come out. Well the puzzles were probably already out but we go back to them. Squeaker loves her puzzles. She is doing 24 pcs puzzles by herself now. The ones with little pieces... it's one of the few fine motor activities Squeaker will do consistently. One of the other activities she loves is her Cheerio book. We do that a lot too, which I really like. 1) Because what I'm supposed to do is well defined. When playing puzzles or reading the rules change. With her Cheerio book it's the same. 2) It involves food. Cheerios may not be high calorie but it is calories. 3) Fine motor skill work out. Have you ever tried to pick up one Cheerio at a time? It's fine motor skills at their best. Squeaker's occupational therapist loves that we have the book. 4) It travels well. I try to keep a bag of Cheerios in the diaper bag and I just have to grab the

book and no matter where we end up I have an activity and food for Squeaker.


  About 9:30 Squeaker goes in a wakes up Trey. Trey works from 3pm- 12am at a call center. Which means he doesn't get home until 12:30 and often isn't asleep until 2am. So yes I am an awesome wife and let him sleep, most days. If I am sick or Squeaker is more than I can handle I will get him up earlier to help out or even take over so I can sleep. I try not to do it a lot because I can nap later but some days it's just what has to happen.

  Okay we get Trey up at 9:30. Squeaker will grab Trey's phone and climb into bed snuggle up close and play a game on the phone while he wakes up. Often I will go in too and we will snuggle as a family. Other times I'll start dishes, cleaning, laundry or just enjoy the few moments of quiet. By 10am we are now all up and moving, or in Squeaker's case jumping. I swear she never stops.

  The next few hours are filled with trains, books, movies, music, tickles, puzzles, jumping, running, catching you name it we probably do it. Somewhere around lunch time we try to do family scriptures and prayer. It doesn't always work out but we do try. Then it's time for Trey to shower, shave, and dress for work. He leaves at 2:30.

  Once we say "bye, byes I love you" Squeaker and I head off to the bedroom for nap. Naptime can be a great time as any mom will tell you. I especially love it because I get to sleep in the big bed. See at night Squeaker and I sleep in the TV room. Squeaker is on couch and I have twin bed pulled up right next to the couch. My bed is comfy enough and it's much better than the couch, which I slept on for 2 years. But for nap time we sleep in the master bedroom in the big bed. The bed that has the 3 inch memory foam topper on it. The bed that assures minimal sleep smacking from my toddler. I do not understand why this set up works but it does. Night time in the TV room and nap time in the master. We tried several other arrangements and they were giant flops. So for now this is the way.

  After nap which can last from 1hr-3hrs. It's time for more play. It's pretty much the same as before. Even the requested to go play in the pool. Not that I can blame Squeaker we do have a pretty nice set up. We have a slide that goes into a little plastic kiddie pool. Those sit right next to a 6ft wading pool, which she loves to crawl/swim in. Honestly it's like having a mini water park. When we do get outside I will do some work in the yard or just hang out with my feet in the wading pool. After pool is the same inside games we did in the morning.

  If we do have errands often we will do them in the evening. Just to break it up, and it gives me a break from entertaining a toddler. Oh and it cause lots of running on Squeaker's end so she gets good and worn out for bed.

  Ahh bed time. This tends to happen around 9pm. I know that "experts" will say that is too late for healthy sleep. I'm my expert opinion they can eat their own books. I have read so many articles and things about sleep training, no cry sleep, early to bed/late to rise toddlers. I've also tried most of it, it just doesn't work for Squeaker. For a while there this kid just didn't know how to sleep at all, naps or night time. Now that we have some sense of schedule that works for our family guess what I'm keeping it. If the experts don't like that my child naps later in the afternoon and I let my child stay up until 9-10pm then they can come and wrestle her to sleep, cause more anxiety, stress, and breathing distress. I will NOT do that to my child.

  Okay rant over... About 9pm I give Squeaker her "yuckies". This is her sleeping med, an antibiotic, and pain killers. Depending on the level or tiredness Squeaker maybe out in 15 minutes, like tonight, or it may take an other 1 and a half. Sometimes I will do treatment to help Squeaker fall asleep, and other times it happens after she is asleep. I kind of leave that up to Squeaker. If she wants treatment she gets it, if not I'll happily let her try to doze off on her own.

  I'm sure you have noticed I have a lot of pictures of Squeaker sleeping. I bet most parents do, I'm just willing to share them more often. Getting Squeaker to sleep used to be a nightmare. And then keeping her asleep could be just as hard. I'm not talking about once and a while I'm talking nightly. I would be up at 1am holding her, rocking her, praying she would go to sleep. Other nights she would fight. I'd have to keep her in a bear hug for 10-15 minutes while she screamed, tried to kick, and I sang to her to keep Squeaker calm enough to avoid breathing distress. Those where just the things needed to get her to sleep the first time. These techniques would have to be repeated during the night. When Squeaker is sleeping in total peace I can't help but share that wonderful moment.

  As of now with a sleeping medication Squeaker still wakes a couple times a night but because the stress and anxiety have been taken out of it she will fall sleep much better. Most of the time it's just a matter of grabbing a bottle and rolling over. I often don't even remember these encounters, or I can't tell them from the dreams. But it does still disrupt my sleep cycle. Of course there are still other nights where it's really rough but we've gone from nightly battles to ehh twice a month. I'll take it.

  So after some sleep, you never know what your going to get. Squeaker wakes up between 6:30am-8am. The process will start all over again.

Flash Cards III

Did you know that action words are important part of language and speech development? I never would have thought it. It makes sense, understanding that there aren't just objects but actions. That opens up a whole new line of clear communication. Of course the reason I know this is because Squeaker needs help in this area. Action words continue to elude her almost entirely.

In an attempt to help Squeaker I made flash cards! This set has 40 action words. There are many more action words of course but this seem like a good start. ENJOY!

Action Words 1

Our Quest

We had already completed several things today. The cars were registered, a new therapy ball bought, and speech therapy was done. It would have been fine to simply stay home, play in the pool and take a nap. But there was a tale told, a tale of snow cones. Snow cones to be sold by a friends sport team at the farmers market just a couple blocks away. It seemed simple enough............

Before I knew it 2:30pm rolled around. It was time for Trey to leave for work. A normal enough thing but today Squeaker really didn't want him to go. She hasn't seen much of Trey because he's not been feeling the greatest so I've been letting him sleep in the last couple days. Squeaker had a major melt down just by Trey putting on his jeans instead of PJ pants. As funny and cute as that is I started to worry. Would my plan of snow cones work out??

Trey left and Squeaker was not happy so I offered to take her on a walk. I figured we could walk to

Once outside it hit me how warm it was. Okay for August in Alabama it wasn't too bad. 86 degrees and 69% humidity. Which for just being outside playing or doing small things it fine. I was getting ready to wrangle a stroller and a dog. It was going to be hot.
the farmers market. Well I had forgot one precious rule, don't mention the "W" word unless you are willing to leave right then and there. Even stalling it took a grad total of 5 minutes to get Squeaker dressed, Zelda on a leash and all of us with a stroller out the door. The only problem was the market it didn't open until strictly 3pm.

I started to walk towards the farmers market. Hoping it would take longer than I imagined. I walked as slow as Zelda would let me. 7 minutes... that's all it took. I looked at the time 2:42... the market

1.5 Miles Total

was just across the street. There was no way Squeaker was just going to let me stand around for 18 minutes until everything opened. We needed to keep walking...

Since Squeaker knew the market and the church it is held at I figured it would be best to go up a few streets, cross and go around as to not pass the church. If Squeaker saw the church I knew she melt down, something I was not ready to handle. I turned right and head up the sidewalk.

Come to a great place to cross. It was on top of a little hill so I could see oncoming traffic on both sides. As safe as that maybe it freaked me out a little. Why on earth was I trying cross a busy 5 lane road with a stroller and a dog. With no light to help or even a cross walk. Then I remembered if I wanted those luxuries I would have walk no less than 1.5 miles up the road. And of course I would have to walk all the way back down. In the heat with a dog and a stroller. Okay so maybe the 5 lanes weren't the worst thing. I did pick a good spot.

I waited just a couple minutes for a break in the traffic on both sides. With Zelda close on her leash and a tight grip on the stroller we ran. Clearing all the lanes with no problem. Walking down that road taking a left and walking up the road the market was on. We had perfect timing. Just as we came up on the church it was 3pm. WAHOO!!! Not waiting.

Then another bump in our quest, a sign, "No Pets Please". This was not here the last time we came by. I knew we wouldn't be long but I had nothing to do with Zelda. We had walked it's not like I could open the windows and put her in the car for the 5 minutes we would be gone. Squeaker was begging to get out of the stroller, it hit me, put the Zelda in the stroller. People do it all the time, it will keep Zelda from sniffing people or food. Getting in the way or tripping someone. Just as I was settling Zelda into the stroller (she is not a fan), a volunteer came up and

offered to take her while I shopped. I asked if we could give the stroller a try first. The volunteer said it was perfectly fine.


I asked Squeaker to lead the way, just so see if she would want to look at anything and I could keep a hand on Zelda so she didn't jump out. Squeaker instinctively knew where to go for our Snow Cones. A short wait and 4 dollars later we had two large snow cones. We ran into a neighbor and talked for a couple minutes but we couldn't stay long. We had to get home for the precious window of nap time.

There was no going the long way on the way home. We came right out onto the street we needed the cross, 5 lanes again. And this time I didn't have the same vantage point. I found a spot and ran. It

Our worn out Zelda

wasn't as clean of a run this time. Thankfully the car in the last lane saw me and slowed down so I didn't have to worry about them. Another few minutes and we were home. VICTORY!!!

Soon after getting home we finished our treats and curled into bed for a nap with colored tongues. Some time you can just forget about the all the medicines, appointments, and illness and just do things like everyone else. What fun we had. :)