Comfort and Airplane Rides

This past week the kids and I went to see my family. We flew to my sister's house in Spokane, Washington. I had an idea what flying would be like as both Cope and I were life flighted from San Juan Regional Hospital to Albuquerque, but I'd never been through the ticket or security process.

It was a mostly fun experience. The kids liked the plane, especially the turbulance. They thought it was like "a ride at Disneyland!"  How unlike everyone else that was. Others were annoyed and some even slightly sickened by the plane movement.

The only real hiccup we had was coming back. We got to the Spokane airport and proceeded to go through the security line. Cope has a comfort toy that he likes to sleep with and occasionally carry around. It is a little Simba lion that is wrapped in a blanket and purrs. He got it while we were going to constraint therapy for two weeks and were away from Daddy. He clung to it then and hasn't let it go since. It has been so well loved that the back stitch came undone and I used thick thread to stitch it back up in hopes it wouldn't come undone again. So when I went to put it in the bin, he was a little upset that I had to take it away, but he just whined and let it go.

We went through the metal detector without an issue, and I started to put everything back in the bag and put our shoes back on. The lion came through last. I saw the person running the machine get a confused/curious/disgruntled look on her face. She reached around and took the lion out of the bin and looked it over. Finding the handstitched seam across the back she turned to the lady standing in the back and said, "can we hold a stuffed animal? Is that even in the protocol?"

The lady in the back was taking round paper looking circles and swiping them on random items that came through and then she'd put the circles in a different machine, wait for a minute, take the round paper out and throw it away and then get another paper and start again. She said, "we can hold anything, but what could possibly be wrong with a stuffed animal?"

At first that is what I wanted to know, what in the world could they possibly find wrong with my sons lion!  They turned away and started whispering though, so I couldn't hear the response. I said, "Please don't take his lion, it's his comfort toy!"

After standing there for a little while, I realized that the problem was probably that the machine showed the purring thing inside it, meaning she saw there was something inside the lion and then directly where there was something inside, there was a handstitched section. I could see how that looked really bad.

I tried to explain that to the ladies, but they just asked me to please go stand by the elevator. They would let me know what was going on once they had investigated further. We waited for a good ten minutes more at least. The lady who was in the back with the round circles finally brought me back Cope's lion. She said it came up clean, so we were free to go. I was so relieved they gave it back to us. Bed time would have been interesting had they chose not to.   

I thought how like everyday life this is. Sometimes we get the thing that gives us the most comfort taken from us. Sometimes we succeed in getting back and other times we have to find something new to give us the comfort we need. Sometimes we hit turbulance and sometimes it's a smooth ride. No matter how my life is I hope I can be like my kids and love the ride especially when turbulance hits; especially when things change and are no longer comfortable.

Raising a Stroke Survivor

During these two weeks of Constraint Induced Therapy I've learned many things about myself, about my son, and about life in general.

One lesson I learned is that one of the most important things we can do in life is to overcome our human tendency to take the path that seems the easiest at the time. The easiest path for both Cope and I would be to not do CI at all. He has one good hand, he could simply choose to not use the other one. He wishes I would let him do that. The problem is I see that life will be easier later in life with the use of both hands. Although that means more work now, that will save him trouble later. In most peoples life they have something like that. Something that were they to work harder now, would make life easier later.

With Constraint Therapy I've learned two important things: 1) The constraint is the most important aspect. There are many things about Constraint Therapy that are just like normal therapy. They play in much the same ways. There are slight differences, like they don't care about his feet at all, or what he is doing developmentally. All they care about is that affected hand. They do a rating scale to determine a starting place, and then at the end of the two weeks the goal is that he has moved up on that rating scale. 2) It really depends on the child what they will do. With Cope his range of motion is very good and muscle tone is fairly good as well. He simply has learned that he doesn't need to use that hand, so he doesn't. A practice he has taught himself is having to be changed.

That is true in all our lives. Each of us have bad habits that are hard to break. Our brain tells us it would be easier to just keep on living as we are rather then improve. In some ways it would be, but once we have use of our affected hand, once those bad habits are no longer holding us back, we can see why the work was so important.

Raising a stroke survivor has been equally the best and worst experience of my life. Although I would never wish a stroke on anyone's child, I am so greatful for my son and the lessons I have learned on our journey. I've learned to understand and love those with medical and mental issues more then I use to. I've learned to appreciate and empathize with their parents. I've learned that to have a child, no matter how damaged their brain or other parts of their body may be, is an amazing gift. I am so blessed to have my son. He is healthy and now we just have improvement to look forward to. One day at a time is still one day with him. One day to love, one day to laugh, and one day to grow together.

Constraint Induced Therapy

I know Cope has his own page, but I want to do an intro to all the details I will be posting on his page in the following few weeks.

Cope's stroke was massive, affecting a majority of the left side of his brain. Brains work opposite, so his right side is the "affected" side, and his left is the "unaffected." Right now, he rarely uses his affected side. I've been told it's disassociation, in which his hand doesn't feel like it belongs to his body, so he would prefer not to use it. This happens because the left side of his brain is not firing the way it should due to the damage. In order to get his hand to start feeling like it belongs to him, we force him to use it so that his brain will start functioning more. That is what therapy is all about. It helps tell his brain that his hand is still there. I found, after much study and reading on the internet, that there are things that can be done to "jump-start" this process. One of those things is Constraint Induced Therapy.

After several months of fighting with the insurance, and then trying to establish dates we could do it, we are finally starting Constraint Induced Therapy next week with Cope. I'll be in Albuquerque for two weeks. I'm excited for the improvement this will hopefully bring. For updates on exactly what is going on check out Cope's page by clicking on his picture below.

We will start Monday the 23rd. Cope will wear a constraint brace, on his unaffected arm, that runs from his shoulders down past his fingers. It will remain on for 14 consecutive days. (I'll post pictures on his page later so you can see.) During this time it will only be taken off for sleeping and bathing. Even eating he will be required to keep it on, forcing him to eat with his affected hand. The brace will inhibit his ability to use his unaffected hand, forcing him to use his affected one. During the two week period he will be receiving Physical and Occupational therapy. There will be two, two-hour sessions of therapy. They will be continued for five days after which he will get two days off, and then will have five days on. During his two days off he will still wear the brace to encourage continued usage of the affected hand. The hope is that such grueling amounts of therapy and lack of use of his unaffected hand, will jump start his brain and allow for continued progress once he is done with the therapy.

I will post pictures to his page and will notate any progress through-out the two weeks. They tell me it will be a grueling two weeks for both him and I as I will have to deal with his frustration and will have to take the time to help him feed himself with a hand he, as of now, has no control over. I know that, but if it improves his ussage of that hand then I say, "Let the fun begin!" :)

Before we head out we get to meet Madison Steiner, founder of Peaches Neet Feet http://www.peachsneetfeet.blogspot.com/.  Cope's Pediatrician, Dr. Nnebe, sponsored Cope, making it possible for Madison and her team to paint him a pair of their beautiful shoes. We are thrilled to get to meet her and be able to get Cope's shoes. My hope is that these will be the shoes he takes his first steps in, as he is not yet walking. I will post pictures and a post on his page after Friday.