Thursday, January 28, 2016

Convaid EZ Rider stroller

We recently got the Convaid EZ Rider stroller for my son Andy. We really love it. It folds up to a very manageable size and it weighs half the amount that my previous Kymba Ottobock stroller did. It weighs around 22 pounds. Without the foot rests it is about 18 pounds , but we added the foot rests for my son. We did not add the armrests to keep it light. 

The old stroller that I had only folded in half and was so big and bulky when it was folded. It was like the size of a very large box and was so awkward for lifting that it was ridiculous. It was very difficult fit into the trunk of my van minivan, and I always had to have the rear seats fold flat down just to get it into my vehicle. Other people with regular cars could not even get it into their trunk without taking it apart. 

The new stroller by Convaid folds up very easily and is so easy to pick up even with one hand and put it in my trunk. I do not have to fold the seats down in my minivan, I can just place it in the trunk area in there still plenty of room for other things.Andy sits in it so nicely, and is quite comfy. I can tell he is relaxed and enjoys the ride.

Previously, when Andy was three years old and about to go to preschool, I was trying to find an ideal stroller for him. I needed one that he could use to ride the bus, and I needed one that he could use at school. At first, I was told by the preschool that he would need a sturdy chair to sit in. When I talked to another preschool, they told me that they would purchase a Rifton chair for him, and that I didn't have to get a heavy duty stroller. 

When talking to the medical supply company at that time, I was trying to weigh my options of getting a sturdy (heavy) chair, or getting a lightweight chair. I was told the Kimba Ottobock chair would weigh around 40 pounds but this was very wrong. When I got the Kimball Ottobock Lechey chair it was so extremely difficult to lift in and out of my vehicle that I hated it from the start. It weighed 55 pounds in total. You could take the two pieces apart but it was in extreme pain in the butt. Taking the pieces apart also meant that you had to make absolutey sure that the pieces were back together properly or the chair could fall apart very easily and it did. My son was injured on the bus ride when the chair fell apart on the school bus. So, for three long years I hated the Kimba seat that I had. I sprained my wrist several times lifting it in and out of my minivan and I cursed it every time I had to lift it. 

Blue Cross Blue Shield told me that I could get a new piece of equipment for my son after three years had passed. The old Kimba Ottobock stroller had wear and tear and it had been broken by an airline company previously and repaired. It tends to get very wobbly once a month and the screws have to be tightened with them Allen wrench. 

After the three years passed, I was so thrilled to contact a new medical equipment company. We worked with and NuMotion in Michigan and they were so great and helpful. They got this piece of equipment for us as fast as they could and I got it just in time before the heavy winter snow started. I dreaded any time that I had to drive my son to school due to cold weather with the old stroller, because it meant me lifting a 55 pound chair in and out of my van which I hated. Now that I have the lightweight stroller it is just a dream come true, and I wish I would have gotten this stroller to begin with.

Monday, January 11, 2016

Andy's waking up screaming

Andy has had a couple of times in the last few days were he wakes up in the night or after a nap and he is screaming out of control. I thought he was having a nightmare the first time, but then it happened after a nap also. He wakes up and his face is very red and he is screaming and hard to console. I don't know if he is having a muscle spasm or what the problem might be. Luckily, this morning he woke up OK, and didn't wake in the night last night. Hopefully, it has passed for now.

Thursday, January 7, 2016

If your guitar isn't connecting with your Rock Band 4 delete it and reinstall

We got Rock Band 4 for Christmas, and it is something fun that I can do with my daughter. Andy also likes to play the drums. I sit him on my lap and put my hands over his hands with the drumsticks and he enjoys banging on the drums with me.we connected the drums and the guitar and had no problems for two or three days playing the game. Soon after that we were trying to join the guitar in, and wasn't being recognized. We put new batteries in the guitar and that didn't work. We also restarted the game and restarted the PlayStation and neither one of these worked. Then we finally tried completely removing the guitar from the settings. We had to delete the guitar in the Bluetooth devices and we had to reinstall it as again. This worked and allowed the system to recognize the guitar again and we were able to connect and play the game. I can bond with my daughter while playing the game and Andy also has fun too. It's been a great investment for us we really love it. I can get a lot of frustration out just by singing into the microphone and so does my daughter. So I guess you can say it's been therapeutic for the family as well! 

Tuesday, December 22, 2015

Andy is teething

Andy had a few days last week at school where he wouldn't stop crying for over an hour. They called to have me come pick him up early. His second molars are coming in because he is over six years old. I give him Tylenol and put Orajel on his gums to numb them. This helps him to stop crying and feel better. The dentist confirmed that the teeth are breaking through the gums, and other teeth are about to erupt as seen on the X-rays. This will be a little rough patch for now. Sometimes he doesn't want to eat, so we wait until the Tylenol helps him to feel better.

Saturday, December 5, 2015

Working on holding markers and crayons

Andy's sister is suddenly loving being his teacher at home. She didn't want a whole lot to do with him before, but now she is finding it fun to show him how to hold markers and crayons. She is also trying to get him to point to colors in books. She told me she is going to make him a report card too. I'm glad she's finding this all fun, and he gets to interact with her more now.

Friday, December 4, 2015

Kylie Jenner posing in a wheelchair is sickening to me

Kylie Jenner, you don't get to choose to put yourself in a wheelchair. God didn't make that your fate.  These pictures are a tasteless disgrace. My son is in a wheelchair because his fate was to have missing genes from his DNA, making him severely impaired. Your fate was to be born into a rich and priveleged family, as an able-bodied person, unsure and clueless as to what to do with their privelege. Why can't you use your privelege and platform to make this world a better place? How about you spend a week in a wheelchair and see how difficult it is to get around town, go to appointments, and eat lunch with friends in restaurants. 

How about don't be offensive, and instead find a cause to help out with? I educate others on the hurdles of raising special needs kids, and provide information so others in my same shoes won't feel so alone. My husband is helping to design electric cars for other parts of the world where pollution is a huge problem. Please do something with your life that will help and uplift others, not just shock-value tactics to get more "unwanted attention".

If you don't like the fame and can't handle it, then get off of tv. Stop filming reality shows. Get out of the spotlight. People will forget about you.  I'm so sick of the famous crybabies of the world, "Oh poor me, I'm crippled by my fame and privelege". Get over yourself. 

Why don't you reinvent yourself to actually do some real good in this world and not just sit around taking pictures of yourself all day? Instead of being so offensive, how about being positive and impactful? 

These pictures make me so sick and angry, because no disabled person that is in a wheelchair chose that for themselves. You willingly choose to be on tv, do endless photoshoots so you'll be seen even more, and then you are going to complain about it. You are choosing your own crippling condition and you have the power to change it. No one chooses to be limited in what they can do and where they can go because of their wheelchair. Please stop comparing your fame to a person that has no choice but to be in a wheelchair, because it is highly offensive and outrageous. 

Friday, November 27, 2015

New glasses

Andy's new glasses are working out so far. He hasn't tried to bend them, and hasn't knocked a lens out. I think he looks cute in them. He is playing with a bead toy here on Thanksgiving. I don't notice his eyes crossing inward when he has them on either, which is great. He gets frustrated if his eyes cross repeatedly, and he will shake his head to try to get his eyes to go back. The glasses seem to help though. They are mostly for his astigmatism though, so things won't look distorted to him.

Friday, November 20, 2015

Circles of communication / PLAY project

We have a child psychologist that comes over once a month to observe Andy and give me suggestions on how to interact with him. He has told me about circles of communication. This is when Andy is doing something and I get his attention and then he interacts with me. He will then react to me, often by doing the same action again. Usually, one of our circles of communication is when Andy starts making noises by tapping his hand or fist on his mouth and then he looks at me. I then make the noises by tapping  my hand over my mouth and then when I stop he repeats this again. It's like I'm imitating him and then he repeats the action. He really enjoys this and we now will carry on this behavior for 10 to 15 minutes. At first, the circles of communication would only happen once or twice. Over time, Andy is seeking out more interaction with me, and is wanting to do it more often. We are interacting with each other every day for longer periods of time each day. This will ultimately help Andy to start learning. 

He first has to be comfortable interacting with me and regulating himself, so that he feels OK with his body and in his space. Once our interactions can be stretched out into longer periods of time, we might be more successful in helping him to start learning things. His needs have to be met first on much lower developmental levels before he can begin to learn academic things. These small steps are slowly building into larger interactions, and progress can be seen with him wanting to interact with us more often.

Wednesday, November 18, 2015

Our respite care worker quit

On Tuesday, I was patiently waiting for the respite care worker to arrive. She comes three times a week to watch Andy for four hours.  Once she was 30 minutes late, I texted her asking, "Are you coming today?" Then she replied, "Sorry, they didn't tell you? I quit on Friday." Nooooooo!  She says it wasn't about our family, she loved caring for Andy, it was about too many demands from the agency and not enough money. 

I am very thankful for the three months that we had her services. We really enjoyed all the time we got to spend with our daughter. I really enjoyed all the times I got to go to dinner with her, just the two of us, or sometimes my husband would join us too. I loved the sewing classes I got to attend with her, and the rollerskating nights, and the movie nights. It was good while it lasted. But just as I had feared, all good things must come to an end. Until we get a new worker...sigh.

Saturday, November 14, 2015

Had to return the Miraflex glasses

We had to return the Miraflex glasses because the lens kept popping out of the frames. Andy would fidget with the glasses and push the lens right out of the frame, and I am worried that he will choke on the lens if not being watched every minute. We are going to try some flexible wireframes. These might be better because the lens is held into the frame tightly with a screw.

We got outside today to enjoy some warmer weather. Andy's sister took him for a ride in the Barbie Jeep. He really enjoys it.