Thursday, November 12, 2009

play time idea

We live in a very cold climate and I would have a hard time figuring out what I could do for playtime during the winter with a child who can't move. Really there is only so much TV that I want him to watch and only so many video games as well. We have our toys, but they can get old too. I came up with a way to totally rig up our basement so that Evan can motor around in his stander and have plenty to entertain him. (We are big into exercise=play) I will do a highlight of the whole basement when we manage to get it organized. In the meantime I wanted to share my idea of "the rice box".

Evan really enjoys the sand box that we have outside. In many ways it is really good exercise for him. We like to "cook" together and he has to muscle the sand around in his different size cups. I had the idea of making an indoor sand box and I do have to say it has been a major hit around our house. I bought a cheap blow up pool and filled it with rice. I chose the blow up pool because I know if Evan falls over he isn't going to hurt himself. I chose rice because it was cheaper than beans and easier to clean up than sand.

It has been so much fun since we set it up. The only thing that I recommend is for owners of cats. Remember to cover it up when it isn't being used, so it doesn't look like a big beautiful kitty litter box :-)

Wednesday, October 14, 2009

I know I don't lead a "normal" life, nobody who lives with a handicap does. I have never actually considered myself a "normal" girl. I was just at a function with a large group of women in the same stage of life as me. I was sitting alone most of the time and I realized that I am probably not always great company to be around. I really can't relate to their lives. The conversations mostly revolve around their children and pregnancy. The life I lead with my children is GREAT but it is very different than what most people experience as normal. I cannot contribute to most of the issues that they face. Maybe I will with Landon, but not Evan. Having a handicap child can be quite isolating. This is not the first time I have felt this isolation, and I know it won't be the last time either.

On the flip side, I took Evan to a "Music Makers" class today. He loved it and reveled in singing the songs and doing the actions. We sang, ran, danced, and jumped around together. The interaction with other kids his age is so beneficial and I love seeing him having "conversations" with his peers. Studies have shown that children with SMA are very bright. Evan proves this to me day in and day out. Often times he was the only one actually singing (or trying to sing) the songs in the class. At only 2 years old that is amazing. It is a major blessing to be able to communicate with my child on a fairly intelligent level. I am biased, but I do have to say that Evan was THE cutest kid in the class.

Tuesday, October 13, 2009

Bee Pollen

Evan gets sick quite frequently, especially during the winter time. Because his muscles are weak he cannot cough efficiently, so he stays sick for a long time. Last winter he was sick every other month and would stay sick for 3-4 weeks at a time, needing antibiotics to recover. We have been fortunate to have stayed out of the hospital ... hopefully it will stay that way.

We made a HUGE discovery this weekend!!! Bee Pollen!! It is a natural antibiotic. The bees coat their hive with it to protect themselves from illness. You can get the bee pollen in a solid or a liquid drop form, which is what we got for Evan.

Evan has been sick for about 2 weeks and after 2 days of bee pollen he was phlegm free! We can't believe it!! This is the first time in a year and a half that he has recovered on his own, sans medication. YAY!!!

Monday, October 12, 2009

Our lives changed in an instant

Come November 2008 we hadn't made any progress with an explanation of what was happening with our son. What had happened was a continued regression of Evan's physical skills. He was crawling less, and he had a difficult time sitting himself up. Between this, and the move to a new country, with no job, I fell into something that I now know was a pretty deep depression. My dear, sweet, wonderful husband could tell that I was struggling and sent me to Florida for 2 weeks to be with my friends. We decided that while we were there we would try and do as much testing as possible through Evan's former pediatrician. I contacted her before we arrived and she so graciously agreed to help us.

We were there for 2 full weeks and did soo much testing. My friends drove me everywhere and even stayed with me through all kinds of procedures. They served as a second set of ears to ask questions that I hadn't thought of. They even helped me interpret a doctor with a VERY heavy accent. They served as shoulders to cry on and the ears that I needed to vent to. They gave me the hands that I needed to hold.

One of our appointments was with a neurologist. He wrote down a list of 6 diseases, in order of severity, that he thought could be affecting our little guy. The interesting thing is that he made a very strong point to say that the 6th disease (SMA) was the least likely. I called my husband and together we started to do our own research, based on the list, of what might be going on with our son.

The second we read through the "official" tell tales of Spinal Muscular Atrophy we both KNEW that was what it was. Evan had all of the signs of Type 2 SMA, and we had a VERY strong feeling in our hearts that told us that is indeed what he had. My heart sunk!!!! I called his pediatrician in tears and begged that we jump right to the DNA testing for SMA. She tried to assure me that it did no good to jump to conclusions, but I KNEW!! At this point we only had a couple of days left, but she worked her magic and got us in for the testing. We did this blood test the night before we left to come back home to Daddy.

It was Thanksgiving during that trip and I remember talking to my friend, Lacy, about how I was feeling. We were together on Thanksgiving Day and I was watching Evan watch all of the kids literally running around the yard. He looked so sad! I just started to cry on her shoulder because I wanted so badly for Evan to have the same experience that most kids have. I told her that I felt like I could handle anything, I just needed to know what I was handling. BUT I really didn't want to handle this. I WANTED Evan to be able to enjoy movement like other children.

God Bless my friends who were an incredible support while I was going through a literal hell. God Bless the doctors who did so much for our son and eventually led us to a diagnosis, so we could move on with our lives.

Evan and I returned to Canada and painstakingly waited the 2 weeks for the dreaded phone call. I knew in my heart what I was going to hear, but I desperately hoped (harder than I have ever hoped for anything) that I was wrong. I wasn't wrong. On December 6, 2008 I was driving in the car when a phone call from Florida came informing me that my son, Evan, indeed had Spinal Muscular Atrophy Type 2. In an instant our lives changed FOREVER!

Saturday, October 10, 2009

The beginning was hard!

How do I begin??

10 months ago our son, Evan, was diagnosed with Spinal Muscular Atrophy type 2, but our story begins long before that.

As a baby Evan was always did what he was "supposed" to do when he was "supposed" to be doing it. He held up his head fairly early. He rolled over early. We didn't notice anything out of the ordinary until June 2008. Our family had a HUGE move coming up and at 11 months old Evan stopped bearing weight on his legs completely. We took him to his pediatrician and began some Physical Therapy thinking it was probably just stress from the house full of boxes. We were only able to get in a couple of sessions before we made our big move to Canada!

Once we were in Canada things only got worse for our angel. With the socialized health care it was next to impossible to find a doctor and we weren't getting anywhere with the walk-in clinics. We eventually got referred to an Early Intervention Program and all they ever told me was that there was "nothing wrong", Evan was just "a lazy kid", "don't stress out mom, you'll only make it worse!" BUT deep down I knew it was something more ... I KNEW it was something MUCH MORE. Truth be told this was a very dark time in my life. I was not adjusting well to the new move, and I was sooo concerned, worried, and scared for my child. There just aren't words to explain that feeling of being lost. I knew my child needed help and I didn't know how to help him.
Every time we go to the seating clinic, or have an orthotics appointment at the hospital we actually pass the office of the woman we worked with during that time. She stopped us in the hallway one time and tried to place where she knew me from. I have to admit that sometimes I am still a little bitter about their complete lack of help. Here they are trained to spot the rarities, trained to have a keen eye (and Evan had all the signs) and they still missed it. In fact, they had me do things to him (therapy) that for an SMA child are TORTURE!!! I still tear up when I think about it, now knowing what I know.