Wednesday, November 25, 2015

Happy Thankgiving!

HAPPY THANKSGIVING! 
 
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.

YOU SHOULD BE TOO!

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...
equipment

And playing on the playground...
equipment
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.
equipment
Insurance covered ours and may cover yours too! In their own words...
 
Does your child suffer from... 
  
Acid Reflux

Sleep Apnea
Cerbral Palsy
EA/TEF TOF
Sleep Breathing Disorders
Gastroesophageal Reflux
Pain/Irritability
Choking or Gagging
Congestion
Hydrocephalus
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...

WHAT?!?!
 
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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