Thursday, December 31, 2015

The time is NOW! Join #Projectthankful today


I hope you all have recovered from the holidays. It seems like they go so fast and everyone is so busy. As soon as Halloween hits we are going non-stop with "stuff". Please tell me that I am not alone in this!
This is going to be a challenge. This may seem easy at first. Prepare yourself for days when it won't be. I encourage you stick with it, even in the hard days. Find one thing, everyday, to be thankful for.
I want to start it off with one thing I am thankful for... (FYI, I use a lot of pictures to tell my story)



These 2 guys right here, but mainly the one with glasses and the hat on. This is my husband. We were friends in high school and started dating after we both graduated and I was coming out of a very bad, 9 year, relationship. So many things along the way were saying that we were meant to be together, but we refused to see it. After just a few months of dating we were engaged and a few months after that, we were married. 
We have been through so much in our 12 years of marriage. He drives me crazy, but what best friend doesn't get on your nerves once in awhile? He is a great dad, and he works hard to support our family. He bears a heavy weight being the sole income provider and worries about everything. I am thankful for this.

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Wednesday, December 23, 2015

Our medically fragile child can't get sick until 2019!

My medically fragile child can't get sick until 2019!


It's complicated but let me try and explain.
(DISCLAIMER: I am only going off what I see in the news. I do not, and never have, worked at either place. This is my view as a mom with a special needs/medically fragile child) 

A partnership between a clinic and hospital
 For the past 80+ years Marshfield Clinic and St. Joseph Hospital have worked side by side in providing central Wisconsin some of the best care around. Their hallways are connected and it is hard to tell when one ends and the other begins. This is the same with the doctors. The 20+  clinic doctors that care for our son know every time he is in the hospital because they are the same doctors that see him while he is there. There is a coordination of care between the two, and it has been wonderful for our family! I love the fact that they all know our son and our family. I love the fact that I don't have to explain everything about our son 100 times, because that would take all day. They already know. And that is a very good, rare thing.
Things are changing 
Lately though, there is fighting between the clinic and hospital. I think it comes down to money and greed, although it is being sold to the public as "providing better care and more options."
It started with this announcement... MARSHFIELD CLINIC UNVEILS NEW ADDITION (This story covers a different location of the clinic, but they are doing the same thing to our local clinic) Sounds great right? I thought it was too at first. 
  Then this came... ST. JOSEPHS-NO PLANS TO END SERVICES Basically, they are trying to not upset the public. Most of the doctors that provide care in the hospital are actually employed by the clinic. SOOooo, when the clinic open a new facility, they will go over to the new place. The nurses that staff the hospital, are employed by the hospital, and have to apply to the new facility if they want to work there. This leaves a split in the workers. 
So St. Joseph decides that they need new doctors and does this... MINISTRY HEALTH SEEKS PARNERSHIP WITH UW and this... ST. JOSEPHS HOSPITAL TO BECOME A SMALLER FACILITY 
Meanwhile Marshfield clinc does this... MARSHFEILD CLINIC MOVES UP PLANS FOR HOSPITAL 
And the latest news is not any better... 3 HOSPITALS FINED FOR SAFETY PROBLEMS Not that this is a big surprise. With all of the back and forth bickering and drama, a lot of staff are leaving to find different places to work. What this means for us though, is that our son who is on medicaid because he is disabled, may not get all of his care covered by insurance. This is more money out of our pocket. I am not sure how that is going to happen with our one income household.
And then, what kind of feels like a stab in the back, this happens... FIRST LOOK AT THE PLANS FOR THE NEW HOSPITAL 
What this means to us
All of this drama. All of this uncertainty. It makes my heart hurt when I think about this situation that we are being forced into. I can't even imagine what it must be like to work at either place. 
Among all of this crap is another issue... St. Josephs is a Children's Miracle Network Hospital the new hospital is not, and probably won't ever be. If this goes away we can say good bye to our meal tickets when we are in doctor appointments all day. We can say good bye to the child life specialists that help calm our son during doctor visits, surgeries, and hospital stays. The community will suffer from the lack of support that the Children's Miracle Network provides.
Nothing has been said about this new hospital even accepting Medicare. If all of the doctors that know our son move to the new facility, and we can not go there because they don't accept his insurance, what will happen to the care that he gets? Will I have to explain everything to the new doctors? 
Any time a new place opens there are kinks and bumps that need to be worked out. The new facility is set to open in 2018. I don't want to even go there until it has been open for at least a year. This means OUR MEDICALLY FRAGILE CHILD CAN'T GET SICK UNTIL 2019! This is highly unlikely though. I pray every day that he doesn't get so sick that he has to be admitted into the hospital. Not that I don't want to see the doctors and nurses that work there, or that I think our care will be anything less then great, but I just don't want to have to deal with any of this. I don't want to think of life without Children's Miracle Network. I don't want to think about how much it is going to cost to get the care that our son needs. I don't want to choose. I don't want to explain everything about our son. I don't want to think that the new doctors don't know what they are doing and don't have our best interest in mind. I don't want to believe that it is all about money. I really want to believe that this will all work out, but I don't want to deal with it until it is over.
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Tuesday, December 15, 2015

We wish you a Merry Christmas and a Happy New Year!

 This is our favorite time of year! (and the only holiday that we really decorate for)
With the kids being so young, I am not sure if they really get it yet. I don't think they know the real reason why we are celebrating; or why there is a tree in our house; or if they even know that soon there will be presents under the tree for them. But that doesn't really matter. The adults of this family are excited for them.
We can't wait to start our traditions. We can't wait to see their faces when they open their gifts. We can't wait to tell them that a baby was born to save us from sin... and to have them know what that really means.
We have always liked to keep things simple, but this year we got a real tree! And had the kids help decorate it. 


Our tree!
 While putting the lights on I noticed a nest it the tree! I am not sure how it survived the cutting, getting stuffed in our van, and then shaken while being put up in our house, but it did. (there were no eggs in it and most birds have flown south already, so no birds were harmed or out of a home) This is amazing to me and I will be taking the nest out and preserving it for future decorating. I already put one real nest in our tree every year. That one is from our first year in our home (and our first year being married). It was found in a trailer hitch and it has bits and pieces from our yard woven in. So having a nest from our first real tree is something special too.

We hope you have a great holiday season and that you can find peace in your heart. We hope you are surrounded with loved ones, can make peace with your past, and remember those you have lost along the way. 
We wish you a Merry Christmas and a Happy New Year!

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Thursday, December 10, 2015

Start the New year off being thankful with #projectthankful

This is for EVERYONE! No matter how bad our day is, we can all find 1 thing to be thankful for.
To join the movement, and the Facebook group click on #projectthankful.   
I will be doing blog posts to go along with this movement and using the hashtag #projectthankful so we can find them across social media. I encourage you to you the hashtag too. Lets start something good! Instead of clouding our minds with all of the negative things going on in the world, lets start a movement. Lets start a wave of positive things!

Please feel free to add people to the group on Facebook. The goal is to post one thing everyday that you are thankful for, but don't feel pressured to. If you can't find one thing in your day (we all have days like that) then just scroll through other people's posts and maybe you will feel better. There are no rules, except that you are thankful for whatever you are posting about. It doesn't have to be anything big either. It can be words or pictures. It can be a long post or a short one. It can be as simple as waking up and breathing as something you are thankful for. (But let's keep this clean and G rated people)

I encourage you to start this on January 1st, maybe as a New Year's Resolution, but if you want to start sooner that is ok too. Give yourself some time to get through the holidays and enjoy this time of year. Prep yourself for 365 days of things you are thankful for.
Now get out there and spread the word! Add and share this with anyone you think may need it! Lets spread the word, and don't forget to use #projectthankful for all of your posts! :) 
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Wednesday, November 25, 2015

Happy Thankgiving!

I just wanted to take time and thank each and every one of you for supporting our family through this blog and the X Linked Facebook page!
Your love and support have given me strength to keep going and hope for the future. I know this time of year can be very hard for people with disabilities, those missing loved ones, and those dealing with everyday stress, but I want you to know that you are in my thoughts and prayers during this holiday season.

Our year has not been stress free, but we still have a lot to be thankful for. We have all been pretty healthy. We have a roof over our head and food in our belly's. We have toys all over the floor, and piles of laundry. Our house is rarely quite and we have beds to sleep in. Just recently, we finally have a really good set of nurses to help care for our oldest son. We have each other, and most of the time we even love each other!
Here is to all the things we can be thankful for... Happy Thanksgiving!
As always; if there is something you would like me to pray for, please let me know. I want to help ease any pain you may be feeling during this holiday. 

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Monday, November 16, 2015

What's the big deal about Starbucks red cup?

Normally I don't have the time or energy to post anything about what is going on in the news but this really bothered me.


OK people, look it's a cup! I am a Christian and I love God. I hope I am living a life that glorifies Him, but this is a cup...
I am not offended that they stopped putting snowflakes or trees or whatever else on this cup. I don't care what they have on the cups, and neither should you.
If you can afford one of these cups, consider yourself privileged. Some don't have enough money to buy a can of corn.
I personally chose to never buy from Starbucks anyway! Did you know that they contribute money to Planned Parenthood? (Is planned Parenthood doing good or harming babies should be a topic for a different day, but not today) As a Christian, I am more concerned with innocent babies being killed every day, then I am about a red cup.
As a Christian, I am more concerned about the thousands of people that go hungry every day, right here in the good old USA.
I am concerned about the billions of dollars being spent by our government. (Democrats and Republicans are equal in my book as far as that goes)
I am concerned about all of the violence that is happening all over the world. I am concerned about human trafficking and children being sold as sex slaves. I am concerned about 2 year old's that got on a shady boat in hopes for a better life and ended up loosing theirs.

I am concerned about the environment and what we are leaving the next generation.

I am concerned with what  is going to happen to my family when I am gone.


Why is there such an uproar about a cup? Why are we not trying to fix any number of other things? Why, as Christians, are we giving any attention to a cup when there are so many other things that need our help and our prayers.

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Thursday, November 12, 2015

Here is the equipment we love, and why you should too!

In the life a special needs, we get used to many different kinds of equipment. Monitors, feeding pumps, standers, gait trainers, AFO foot braces, hand splints, helmets, and special chairs.
I had NO IDEA that any of this stuff even existed until 3 1/2 years ago! I am always learning about new things and new companies...most from other parents. 
I thought I would share a few of our favorites and the reasons why we love them...
We use a wheelchair called a "Kid Cart"
  This can come with different colors and accessories. The seat lifts off and the frame folds down. Our biggest complaints are that we can't use the seat as a car seat which makes it bulky, and we were told that the 5 point harness is not crash tested therefore we can't transport him in the chair in a vehicle. This means we still have to transfer into a car seat and find room in the car if we want to go anywhere.
Otherwise we love it! It offers good support, has a few different harnesses to hold him in, and is fully adjustable so it can grow when he does. We got a bunch of accessories too. We got a canopy (like the one pictured), a lap tray, an attachable IV pole, and a rain cover that covers the whole chair with him sitting in it. 
We have also used it for other things, like floor time, and shopping...

And playing on the playground...
The seat is a bit heavy, even by itself, but he loves being able to go places and we love seeing him smile!
The newest addition to our "stuff" is a supportive bed called the Comfy-Lift bed.

We had tried rolling blankets, blocks under two of the bed feet, and different wedges to get him at the recommended angle for his night-time tube feedings and his Bi-pap. But nothing worked well. This has helped him sleep better and be ready to start his day. This also helps the taller nurses that care for him get him in and out of bed without straining their back. My only complaint is that I can't cuddle with him while laying in bed.
Insurance covered ours and may cover yours too! In their own words...
Does your child suffer from... 
Acid Reflux

Sleep Apnea
Cerbral Palsy
Sleep Breathing Disorders
Gastroesophageal Reflux
Choking or Gagging
Esinophilic Esophagitis
Aspiration Pneumonia
Acute/Chronic Respiratory Issues
G-Tube Feeding

Why chose us?
The Comfy-Lift™ Bed has a patented design that features an elevated head rest to lift the upper body of the sleeper. This elevation will keep stomach acid out of the esophagus, as well as assist in breathing. 

Since children tend to roll off the side of the bed during sleep, a side barrier has been strategically implemented on each side of the mattress to create a concave design that will cradle the child in the center of the bed.
The Comfy-Lift™ Bed is designed with the growing child in mind, using a foot-adjusting feature to account for growth of the child. This feature makes the Comfy-Lift™ Bed a long-term form of treatment for your child's sleep-related disorders. 

 Our mission here is to help the most helpless among us - the children, as well as adults who suffer from sleep breathing disorders. All children deserve the highest quality of life and healthcare possible.

If you would like to know more about the kid cart talk to your doctor or click HERE.
If you would like to learn more about the Comfy- Lift bed click HERE


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Sunday, November 8, 2015

So, this happened...

I could hardly believe my eyes! The occupational therapist came to our house (like every other week) and wanted to work on trying to get him to sit on his own.
Well he did!

For 3 minutes!
On his own!!!
Now for a boy who couldn't be carried like a normal child for over a year because he didn't have enough head control or trunk support, THIS is AMAZING!
For a long time we had to cradle him in both arms, or have him upright but have both arms on him to support his head. For a little bit, I grieved. I was envious of parents that could just carry their 8-10 month old into a store, on their hip, and plop them into a cart seat like it was no big deal. I didn't think I would ever be able to do that.
I still can't. He now weighs over 30 pounds and still doesn't have the endurance to last a whole shopping trip; but that's ok. I have learned to not compare our life, him, or myself to any other family, kid or mom that I see because I know that none of them have gone what we have gone through...(except for the other families with kiddos like him that I know through Facebook)
For him, at 3.5 years old, this is HUGE and I am so proud of him. He has come so far and we have seen him grow at an even faster rate now that he is in school. We love you buddy! 

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Thursday, November 5, 2015

To my baby that won't stop crying,


 To my baby that won’t stop crying, 

Me and you are not so different these days. I am not satisfied with my situation and cry a lot too. 

I look to someone else to fix my problems. When God gives me a solution that He thinks will do the trick and make me satisfied; it doesn’t work. I cry more. 

When I lose my faith and don’t trust him, I get scared and cry. When I can’t see the plan, and think that I know what is best, I end up crying because it’s not right.

 It is only when I completely surrender my own ways, and just be held tight, that I am truly comforted. When I am held close, and can feel His arms holding me tight, that is when I am calm. That is when I am at peace and can slowly drift off to sleep, knowing that everything will be ok. 

So go ahead baby and cry; I will cry with you. I will hold you tight knowing that I am also being held tight. Everything will be ok. Trust me; and I will trust Him.

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