I Don't Wanna!!!

I don't wanna, I don't, I don't, I don't *stamping feet*. 

Please, please don't make me do this.....I don't want to do inhalers 8 times a day, I don't want to worry about over heating, I don't want to have to tell my child not to laugh so hard, I don't want to worry about if my 3 year old is gagging on foods we mastered a year ago. I don't want to listen to my child sound horse, coughing, and high respiratory rates. I JUST DON'T WANT TO DO IT!!!!

In the last two months we have re-started inhaled daily steroids, Albuterol almost daily, gone through 4 rounds of oral steroids and 2 rounds of anti-biotics. With all of this Squeaker still sounds like she did at 18 months old. And of course with the sounds comes all the other issues. Squeaker is gagging on food which makes it hard to get her to eat. She overheats really fast because it takes extra to breathe. Plus her anxiety and emotions are all over the place.

Now had we not had 5 great months of very little breathing issues I probably wouldn't care. But to have that taste of freedom, and then to have to taken away. Oh it's heartbreaking.... down right heartbreaking.....

Anyway that is our life now. Inhalers, limited time outside, anxiety, and lots of loud breathing. Do I like this part of my life ABSOLUTELY NOT but I have to focus. Focus on the good things, the fact that Squeaker can bowl a 50. That Trey's summer semester is over and he will be home every night now.

Well it's almost midnight and time for another dose of Albuterol for Squeaker. Then I can finally go to sleep myself.

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!!!!!!!

BEST NEWS!!!

Squeaker had oral surgery today. Nothing too major just some caps, crowns, fillings, xrays and a full cleaning. Just much easier to do all of that when she is out. And I'll give a full details of our lives later. But right now I'm too excited about something we found out today.

Squeaker has GROWN!!!! I mean not just a little, A LOT!!!! In the last two months Squeaker has been the healthiest she has been in a long time. And 8 weeks is the longest stretch of healthy we've had in ohh.... ever I think. And guess what happens when Squeaker is healthy? Yep she grows! You ready for the numbers???

3/14/2014- 27lbs and 36inches
Today----
29lbs and 39inches!!!!!!

Yes you read that right. 2lbs and 3 inches!!! I knew she was a little heavier and most certainly taller but wow! This morning you could have knocked me over with a feather!

I know the infusion has been making a big difference, even if there are some side effects some days. But boy oh boy it is very much worth it to see growth like that.