Friday, April 19, 2013

The Mygo Kimba Leckey Ottobock chair became detached, son severely injured

This horribly heavy chair is a terrible choice. I hated it from the beginning. I should have fought harder to return it, but I was told it was "un-returnable". I caution you: Please do not EVER by a wheelchair for your child that has two pieces to it. If the seat part is not correctly locked in place to the base, your child will have a horrible accident like mine did.

I often have to take this horrid seat apart to get it in and out of my mini-van. I cannot lift it when it is all one piece. It is way too heavy. When I take it apart, it feels as though the chair weighs fifty pounds, and the stroller base weighs twenty pounds. The seat is heavier than my son.

I took this chair out of my trunk and assembled it for the 50th time probably. I hate this seat and I curse it every time I have to put it together. I thought Andy's seat was locked in place. I pushed him down the driveway to get on his school bus, nothing seemed off.

I get a phone call from the transportation office saying, "Your son's seat became detached, and you need to get to the next bus stop right away". They couldn't answer if he had been hurt they didn't know. I get there to find blood all over my son's face, and a horrible gash on his head. When the bus driver came to a stop, he and his seat went flying off the base, which was secure to the floor. It is so heavy, the seat belt going across his chest wasn't enough to keep them from slamming to the floor.

We went to the ER for facial X-rays and 6 stitches.

I cried all day long. I feel so horrible that this happened to my poor innocent and helpless son. He loves riding the bus, and now I don't know what he'll think of it. The bus driver and the mother at the next stop were great in caring for Andy until I got there. He was so upset, and I tried hard to contain myself all day. I had nightmares all night long.

Andy seemed happy after the incident, and was very playful. I'm still so sad, and blaming myself every second of the day. I would never buy a two piece chair again. NEVER.

Tuesday, April 16, 2013

Andy is doing a little better

Andy has been crying a bit less, which has been so great. He has been on Abilify and reflux meds for three weeks now. He has a runny nose right now, which I think is contributing to his minor fussiness. I feel like I've been in a dream, not having to hear non-stop crying every minute he is awake. I am scared that any minute it will come back, almost like a post-traumatic stress feeling.

Summer is approaching, and I am worried about how to keep Andy happy when he is not in school. He likes to swim, but the before and after with swimming usually don't go well. Especially when facilities don't have changing tables, or handicapped accessibility.

We now have a handicapped license plate. I don't tend to use it though, if I can get a spot that is pretty close to the entrance. It kills me when I see an elderly person that seems very capable of walking, pull into a "van accessible" spot, when ten other handicapped spots are open. I know so many people with vans for their children that need those spots. This makes me want to get a rear accessible van, instead of a side entry ramp. I don't want to be pissed at these people all the time.

I am so thankful that the weather has been nice. Andy loves getting outside. He likes being pushed around the block or on a swing. He also likes watching other kids play outside. It makes him squeal and clap. He's so cute when he's a happy camper.

Tuesday, April 9, 2013

Off Risperdal now onto Abilify

We were unable to live with Andy's behavior anymore. If he wasn't at school, he was miserable. I had checked every avenue of what might be causing him pain, and there was nothing. I decided it was time to wean him off the Risperdal, and get him onto something new.

The weaning was easy. I cut his doses in half until he got down to .25ml for three days straight once a day. Then I started the Abilify immediately the next day. Initially, doses of 3ml or even 2.5ml were too much for him. He would get very sleepy, and he'd be fighting through the sleepiness with crying. So, he was either sleeping or crying. Then I dropped down to .5ml, twice a day and I felt like I was just giving him water/nothing.

My husband hated it. He wanted to stop giving the new meds. But I knew that it would take a full two weeks to see what the results will be. The first week was hell. I waited until I knew the kids were going to be on spring break to start the new meds. The Abilify was started on Friday, then he was off school for the entire week, and he had the weekend.

I was in his physiatrists office crying to her about Andy's constant crying and telling her how I'll try anything. She suggested that we start an acid reflux medicine as well, just in case he might be feeling a burning in his chest from reflux, and can't tell us. Fine with me. I'm desperate.

It's been almost two weeks now. He takes the reflux meds twice a day, Miralax stool softener once a day, and Abilify twice a day. Right now he is getting 1.25ml in the morning and before dinner. I started out with 1ml twice a day, and am now inching it up slowly to try to get more improvement. When I tried 2ml twice a day, he was way too sleepy.

It does seem as they are on these meds for a few months, they start to need more of them in order to get the same effect. This is my opinion with my son anyway. It is like their body gets used to that dose and now they need more of it to have the same effect. He hasn't been gaining a whole lot of weight, but has been getting taller.

I pray for Andy's brain to develop, and for him to not cry as much. The nurse practitioner at Andy's office said she sees kids like Andy go through crying phases sometimes at age 3 or 4. She said the crying can go on for a year or more. Andy has already been crying a lot for the past two years. One of the moms in my support group said her daughter stopped her constant crying between 5 and 6 years old. She says she rarely hears her cry ever now. Her daughter is immobile/very limited physically and quite cognitively impaired. It helped me look forward to some time in our lives when Andy won't be constantly screaming.