So, I have to say that once again I've been slacking on the posting, but so much is going on that I don't feel like I ever have time for anything other than work, Quentin and work or Quentin!
I am so excited to report that Quentin got his new wheelchair and it's wonderful. There are three minor issues with it, but most are easily remedied with a visit to Target or "The W Store" as we say in my family (for anyone that doesn't know, my dad is a union man to the core and Walmart is the enemy)! The chair doesn't have any shade or cover to keep Quentin protected against the elements here in Tucson, but they told me that I could get a clip on umbrella that has a flexible hose to help keep him covered up (not a bad idea). Second, no storage underneath the chair. That was great on his old chair because instead of having to grab one of those hand baskets I could just stick the few items that I needed under the chair and run around the store easily. The biggest and saddest thing is that it doesn't have a cup holder!!! "WHAT?" you say. I know, no cup holder. How do they expect mom's to push their children around without having a cup holder to keep their coffee, energy drink, or diet soda. A real absurdity, if you ask me, but then...no one really asked me, did they? Anywho, we are very happy to have the new chair (which I forgot to mention, folds up all pretty like and neat, but weighs a million pounds) and thankful that the State of Arizona picked up the huge bill that came along with it!
I hate to post this, but this is a post about Quentin and I want you all to be able to follow EVERYTHING that is happening with him. We have seen a an increase in the amount and length of seizures. The neurologist had switched his medication to the generic brand some time ago and then the pharmacy switched manufacturers, so we had hoped that it was only an issue with the medication, but unfortunately it doesn't seem to have made a difference even with switching back to the name brand. I am working on getting him into see the neurologist sooner than he is scheduled, but it is a little bit different than our private insurance and it takes just a bit longer sometimes. I have to say that the seizures, although I hate to see him going through them, don't really seem to be having any effect on him physically, which is great. He has had seizures at school though and because they last longer than the time that the school district has set as a guideline they have almost had the ambulance called to school. So, we absolutely need to get in to see the neurologist and get a new plan in action! I don't know exactly what will happen, but I know that sometimes it gets to a point where the medication doesn't work or they just can't give him anymore because of his weight and so we might find that they aren't able to control the seizures with medication any longer or for the time being and we'll have to look into alternatives at that point.
A little bit about Quentin at school. The teacher and her aides take the kids to a theraputic swimming pool once a month and I told them "Quentin doesn't really care for water". So, they took him a week ago and the reports were that he did wonderfully, he really enjoyed himself and that he relaxed just great! So, I guess the point of that story was to let you all know that I have no idea what I'm talking about...EVER! I was happy to hear that he enjoyed himself and I plan on going with them on their next trip so that I can see him in action!
One last thing before I go, my bff Kellie told me about this webiste called Meetup.com, because she just recently moved to the state of WA and is looking to make new friends, and she thought that I should give it a try. Well, I went on actually hoping to find a group that is focused on mom's of children with special needs. I did find such a group, but of course, like most anything it was basically mom's of children with Autism, ADD or ADHD. I wrote the creator of the group and she sent me an interesting email. Here is how she began, "Our group is mainly composed of kids on the autistic spectrum. There are some moms with kids of different disabilities such as blindness and sadly major trauma to the brain." and maybe I'm just being sensitive, but it's weird that she used the word "sadly" when speaking of children with major brain trauma and not of any of the other children. I guess what I mean to ask is, isn't it sad that any of our children have disabilities? Maybe someone that doesn't have a child with special needs or even people that have special needs children might not think anything of that statement, but it's me so of course I have to read into it and analyze the crap out of it. Needless to say, I won't be joining the group. Not because of what I thought of her email, but because it's not a good fit for us. It's a bit of a lonely feeling when even the special needs support groups don't really have much of an understanding or don't have parents with kids that have CP. Where do these parents go? Do none of them need support? Maybe they are just to busy with their children that they don't have time to "hang out" with other people. But on a positive note, I found a group of 20's and 30's that like wine and cheese, so I might have to do a meet up with their group very, very soon!!!
Until the next time folks...all our love! :)
