Trips and More Equipment
There was once a time in which my family and I could just "up and go" anywhere at any time. Nowadays things need to be planned, thought out and calculated. Even a simple visit to the doctor or to the mall is something that is planned in advance.
The first thing is my special car seat. It has a reclining position so I can still sit at my 45 degree angle. It is somewhat big and takes up a lot of room. When we know we are going someplace (like a doctor's visit and it is only Aunt Kathy taking me) then we get the car seat into her van the night before so we get the positioning and angle just right.
I have also been given a "Kid Kart" to borrow. You might see some children in them when you are out at the mall or food shopping. It has padding and helps me sit upright. It has big wheels and is kind of bulky, but it allows me to sit correctly while I'm getting strolled around. So, my kid kart is taken apart and put into the van also for a trip or doctor visit.
Next are things that take place prior to me going into the van. Daddy bought me an "inverter" for the van. It is a small box that is plugged into the cigarette lighter and allows two items to be plugged into it. I normally take my pulse oxygen machine and my suction machine everywhere we go. So, prior to me going into the van, both my machines are carried out.
Next is also a backpack that Aunt Kathy and Mommy keep EVERYTHING in. From copies of all my doctors visits, and all information just on me. It goes everywhere I go. Saving the BEST for last is ME!!! I get carried out in a blanket so I am kept warm until I get into the van. I get strapped into my car seat, and hooked back up to my pulse oxygen machine. The suction machine is kept with us in case I get extra secretions from the van ride.
Feeding me while out is a little tricky. We try not to have my tummy full for the van rides, so the timing is very important while being out. I had my first "public feeding" at the mall a few weekends ago. I thought I would get many stares, but I didn't. Only one little girl at the next table was curious, but never said anything, she just watched. Anyway, when we plan on a "feeding while out" Aunt Kathy needs to remember my tube, syringe, and food. So, needless to say, it's sort of a project to go anywhere and plan for it.
In the future, we are planning on having more needed equipment for the house. Like a "stander" which does exactly as it says. It will help me stand, or rather put me at a vertical position while being strapped into it. I am told that it will give me a new "out look" on things. I'm very excited to get one.
I am also going to get something called AFO's which stand for Ankle Foot Orthosis. First I need to have my feet casted, and then they are made from the mold. From what we are told, they are small plastic supports for my feet and ankles. With having these as an aid, I will not develop something called "drop foot" which is commonly associated with not using my feet for walking.
We are also looking into a new seat for me while watching television. Something that will keep me at a 45 degree angle. I used to have a bouncy chair and a bean bag chair, but lately the positioning is all wrong and it sets off my machines because I can't breathe right and sit in a comfortable position.
Something I am anxiously awaiting is when we can get a generator. This will allow all my machines to continue to work incase the electric goes out. And let me tell you, just the other day we had a HUGE thunderstorm that made the house shake and the lights flicker. I saw the concern on everyone's face of "what will we do if the power goes out."