I haven't forgotten about this page. The last couple months have just been crazy! In good and bad ways, mostly good though. Squeaker had a particularly rough day today so I can't stay long. To anyone who actually follows this blog I haven't forgotten and I will be back soon. Oh and I have A LOT of pictures to share. They will be worth the wait. Monday, August 18, 2014
I Swear
I haven't forgotten about this page. The last couple months have just been crazy! In good and bad ways, mostly good though. Squeaker had a particularly rough day today so I can't stay long. To anyone who actually follows this blog I haven't forgotten and I will be back soon. Oh and I have A LOT of pictures to share. They will be worth the wait. 
Thursday, July 3, 2014
Oh Squeaker
Oh Sweet Squeaker,
As we read scriptures last night you asked to cuddle on the couch. Not all that unusual since it was late and you had taken your medicine. But what I wasn't expecting was for you to lay down on my chest. This is a position you haven't wanted to cuddle in for well about a year. I'm pretty okay with that because you are so tall it is a little awkward to have you lay on top of me. What was even more unexpected was that within two minutes of you laying on my chest you had fallen asleep. A deeper, calmer, and easier breathing sleep than I had heard out of you in nearly two months.
Once Daddy was done reading he turned off all the lights and let us just stay on the couch to rest. As I sat there in the dark I thought about all the nights we had spent in that position when you were younger. How for the first year of your life it was one of the few ways you would sleep. I thought about the fact that sleeping on an incline with you on top of me cause all sorts of problems with my back but it was worth it to let you get some solid sleep. Because I knew there was no way you would grow to your full potential if you didn't sleep.
In the quiet moments where I was trying to fall a sleep myself I would just listen to you breathe. Such clear, deep breaths, such a rarity theses days, especially while you sleep. Then it hit me, I had been wrong.
Wrong to force you to try to sleep laying flat. Wrong to not cuddle you all those times you begged for it and I just gave you a bottle so I could go back to sleep. Wrong to not realize that your hourly wake ups were accompanied by gasping for air. Wrong to put my desires before your needs. I'm so very sorry that I made those choices.
I resolved to do what you needed for sleep. I didn't expect it to be easy or even comfortable for me, but I was going to do it. I knew it may still take a while to find what worked best but I knew it would be worth it.
So there I sat in the dark starting to fall asleep with you on my chest. You woke about 2 hours later and I moved you to the bedroom. I stacked up pillow nice and high so your head would be elevated to help with your airway. And sure enough as you fell back asleep with those deep, even, calm, and clear breaths you had on the couch. Then I left you to go do a project. I came back 2 hours later when you woke again. This time I laid down for the night too. Snuggled right up next to you so that you would always have contact and know I was there.
The rest of the night continued with waking every 2 hours or so and me calming you back to sleep. I couldn't believe you were sleeping for 2 hours at a time. What progress! In the morning I did wake up extremely stiff and not wanting to move but you were happy and calm. Waking up wasn't stressful because you had slept. Which meant that you would be happier the rest of the day.
Here we are, I'm still stretching out the kinks in my back and you have been calm, happy, and using your words all morning. Fantastic! Not bad for a first night. We will get there my love, I won't give up, and I know you won't either.
Love,
Mommy
As we read scriptures last night you asked to cuddle on the couch. Not all that unusual since it was late and you had taken your medicine. But what I wasn't expecting was for you to lay down on my chest. This is a position you haven't wanted to cuddle in for well about a year. I'm pretty okay with that because you are so tall it is a little awkward to have you lay on top of me. What was even more unexpected was that within two minutes of you laying on my chest you had fallen asleep. A deeper, calmer, and easier breathing sleep than I had heard out of you in nearly two months.
Once Daddy was done reading he turned off all the lights and let us just stay on the couch to rest. As I sat there in the dark I thought about all the nights we had spent in that position when you were younger. How for the first year of your life it was one of the few ways you would sleep. I thought about the fact that sleeping on an incline with you on top of me cause all sorts of problems with my back but it was worth it to let you get some solid sleep. Because I knew there was no way you would grow to your full potential if you didn't sleep.
In the quiet moments where I was trying to fall a sleep myself I would just listen to you breathe. Such clear, deep breaths, such a rarity theses days, especially while you sleep. Then it hit me, I had been wrong.
Wrong to force you to try to sleep laying flat. Wrong to not cuddle you all those times you begged for it and I just gave you a bottle so I could go back to sleep. Wrong to not realize that your hourly wake ups were accompanied by gasping for air. Wrong to put my desires before your needs. I'm so very sorry that I made those choices. I resolved to do what you needed for sleep. I didn't expect it to be easy or even comfortable for me, but I was going to do it. I knew it may still take a while to find what worked best but I knew it would be worth it.
So there I sat in the dark starting to fall asleep with you on my chest. You woke about 2 hours later and I moved you to the bedroom. I stacked up pillow nice and high so your head would be elevated to help with your airway. And sure enough as you fell back asleep with those deep, even, calm, and clear breaths you had on the couch. Then I left you to go do a project. I came back 2 hours later when you woke again. This time I laid down for the night too. Snuggled right up next to you so that you would always have contact and know I was there.
The rest of the night continued with waking every 2 hours or so and me calming you back to sleep. I couldn't believe you were sleeping for 2 hours at a time. What progress! In the morning I did wake up extremely stiff and not wanting to move but you were happy and calm. Waking up wasn't stressful because you had slept. Which meant that you would be happier the rest of the day.
Here we are, I'm still stretching out the kinks in my back and you have been calm, happy, and using your words all morning. Fantastic! Not bad for a first night. We will get there my love, I won't give up, and I know you won't either.
Love,
Mommy
Saturday, June 28, 2014
I Don't Wanna!!!
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.
Sunday, June 22, 2014
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.
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.
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