Wednesday, May 26, 2010

my wheelchair nightmare goes on :(

I have decided to use Christopher's nickname Cj on my post.
The moment they put Cj in the chair he hyper extended and was miserable! He looked at me with a pout and told me with his eyes this is not the one! He started bawling his eyes out! I could not even take a picture he was so sad!

The chair was light weight but it moved too much for my liking. All the parts rattled...? He moved too much in the chair and was not positioned well! I really needed to try this chair because so many Moms have told me they have liked it for many reasons.

I think Cj would of broken this chair in one week with his strength. It had alot of PLASTIC components on it!

I thanked the rep for all his hard work. He could tell he was a little irritated. I felt horrible because I made such a stink to get this chair to trial! I told Tracey his pt that I was going to go up and down the hallways once again to look at the other children's chairs. Quickies, quickies everywhere!

Bob my other rep just happened to come around the corner and we have decided to try the Quickie Iris in June.

I am kind of a perfectionist and I want the best for my kiddos!

Am I being too picky or maybe deep down I just do not want a wheelchair even though I know he needs one.

Monday, May 24, 2010


Christopher decided on a pirate theme last minute! We had a crowd of 35 friends and family! He and all the kids had a blast!

We had a barbecue and lots of cake and ice cream!

Christopher was very spoiled and it was well deserved with everything he is going through!

He enjoyed the cake as you can see!

Lots of cute little girls and boys!

I can not believe he is seven!

This is his original crown from better than normal!

I have 3 boys (including hubby) so figured if they are good for a day they can wear the king for the day crown and get a surprise or on their B-Day!

I made the pirate logo and put it on the reversed side to go with the party! They are great gifts!

Thursday, May 20, 2010

The Chair!

I thought this chair would be here earlier!

Next Wednesday it will be here!

Of course I had to order some extras they forgot to make it work.

They may want to hire me to be a rep!

Cross your fingers.... it will work!

and a prayer!

PLEASE!!!... :0)

Monday, May 17, 2010

A Day At the Beach.....Finally!

We have been to the beach a few times this year but the weather has been sooo lousy lately we have been waiting for a day like today. I found this amazing piece or drift wood! Very small but it had beautiful colors!

Ryan and I had fun at the our favorite little beach. He made a great crab habitat! We had the whole beach to ourselves for a couple hours. Picture perfect day with my little guy!

Thursday, May 13, 2010

A New Form Of Communication!

As many of you know I am training Christopher to use an eye gaze communication device. I have the Tobii C12 or Dynavox in mind. They may have some different ideas. I will try them all!

We are going to Children's Hospital to their communication center. They have all the newest equipment and they will work with us to see if he qualifies for one of them. Just to let you know I was told Easter seals is a great source for communication needs! There are many other organizations for funding as well. I will post a list soon as I have a great connection!

Well I am pleased to announce he can shut his eyes now for a couple of seconds to say YES! I have only worked with him for a few days and HE GOT IT! We also use our hands to make choices. I make him stare at the proper choice twice and he must stare for at least a couple seconds to get what he wants. I will say apple for right hand and banana for left. He has perfected this when making food choices. I will test him sometimes to make sure he is making the appropriate choice. They are also training him at school with pictures and multiple choices.

Still waiting for the chair to arrive!!! I will keep you posted!

Thursday, May 6, 2010

The Real Deal

I understand the concept and self confidence our children can benefit from using a manual chair. My son has dystonic movements and splints on his arms that make it almost impossible for him to self propel.

I am going to suggest at Christopher's school to try the standard wheelchair to see what happens down the road. He is not ready yet. They are fantastic and will try anything we suggest!

I am so lucky to have such a great support team! They all love Chris and will do anything to make him happy and be as independent as he can be!

Wednesday, May 5, 2010

I would not take no for an answer.......

I have wanted to demo the Thevo Twist chair the first time I saw it.

After having called Exomotion in Seattle WA at least 5 times over two years and begging local medical supply companies to get this chair for me to demo I gave up. It is not Exomotion! They were great! It is of course the money factor between the insurance companies and the supply companies.

We have tried over six other chairs and they just were not right. Too heavy, robotic looking or just plain old ugly and uncomfortable for my son. So frustrating.

Well...a friend from ABR told me she received this chair a couple months ago and LOVES it! Another contact from Germany told me she knows of families with children with LND that are VERY happy with this chair.

So I told myself I am going to make this work. Having been in sales for many years I have no problems talking to anyone, including the president of ANY company!

I called a major medical supply company in MA that is all over the states and told them I have a contact number and a name at the their corporate office. I told them I will call them myself. They told me they have never heard of the chair or the company. The chair is only two years old and is very popular out in the western sates and in Europe.

Well guess what! I got a call back two hours later from a rep who contacted Exomotion and I have a demo coming next Tuesday to his school!

I am so excited because now other children with LND, CP and many other conditions may benefit from this chair in the New England area. It has a new dynamic back like no other chair. It calms the child with sensory input. It weighs only 42lbs, comes with lots of options and has a high low base for home and school.

.......So it looks like a stroller. He is seven and I do not want him to feel like he is a toddler so this was a big issue with me. Christopher can not propel himself period. This does not bother me anymore. Some people even suggested we get a chair with the big wheels to make him look more independent. A regular wheelchair.

Most do not have the options he needs. He is who he is. My happy blued eyed Christopher who brightens every waking day of many peoples lives.

I think it is a cool looking chair and I hope this demo is a done deal!!!

I just wish things were easier for the kids and parents who need it most.