Saturday, April 23, 2011

Happy Easter~Someone Special 2011: Charlotte's Web



Every year, many of the local Lion’s Clubs in the surrounding area host an annual event called, “Someone Special” where they celebrate the mentally and physically challenged disabled children and adults in the area. The concept is that they are special and in turn, they deserve a “special afternoon where they are comfortable, happy and celebrated for who they are.”




Photo Credit: Drury Lane Theatre

This year, the event would be E.B. White's "Charlotte's Web". The Lions Club has hosted this event for many years now, although we were unable to attend the last few years since Dear Son was often sick. This year they hosted 750 people. I personally love this event for several reasons, the first of course, is the beautiful theatre. If there is one thing I love, it's a gorgeous chandelier.


You have to love such an elegant setting.


It's been a few years since we've been here, but I couldn't help but notice how much Dear Son has grown! Here is a photo from six years ago when he was only 13. He looks so young!




Here he is with the clowns! I don't think he was as impressed with them today.
I think he outgrew the clowns a while back; here he is in 2007, four years ago. He looks like he's ready to cry or something, lol.Even Dad tried to get him to enjoy the clown.
Our next step is off to get the tickets!
From there, we had to wait a bit so we took some pictures. Here I am with Dear Son.And a picture with Dad.

The program for today...Check in and meet the clowns. Check. Enjoy the play. Have lunch in the Grand Ballroom with a special appearance by Ronald McDonald.
Next is off to see the play. Pretty theatre. Of course I took more pictures of the chandeliers. You know I really like them.They cleared out a special section in the rear of the theatre, just for the wheelchair guests. It worked out great. Here is Dear Son waiting for the play to begin.I couldn't help but take a picture of this pretty little girl all dressed up for the event. She was sitting in front of us and when I asked if I could take her picture, she jumped up and twirled around. It was cute.More chandelier photos. Yes, I am obsessed. I love pretty, elegant things.More pics of the kids in wheelchairs in the back of the theatre.Another picture of Dear Son.

After the play, it was off to the Grand Ballroom for lunch. Dear Son really enjoys this part. He likes all of the balloons and all of the people. He liked his pink pig too. They gave all of the kids a pink pig Beanie Baby to go along with the event today.
Here he is at the event in 2005 admiring the balloons. They put a balloon on each chair and then the kids get to keep the balloon when they are done. You can see how much better Dear Son was back then. He looked heathier, was more animated and able to enjoy the day.Finally a little smile. He's looking up at the balloons.
He ended up falling asleep during the meal which was around 11: 20 a.m. or so. One of the men at our table asked why he was sleeping. I guess it's hard for people to understand when kids aren't well. Dear Son isn't able to stay awake for a full day or even half day at this point. He does all he can to be awake and present three mornings a week when he goes to school. He sleeps the entire day after that. Just disease progression.Here is another picture (above) after lunch. He is holding his little pig. If you look closely, you can see his yellow balloon in the mirror. I tied it around his wrist. He really loves playing with balloons. What a difference from four years ago where he was laughing all the time.






More laughter...
Playing with the balloon was short lived. Umm...Dad accidently let it go...
As we were leaving, Ronald McDonald walked by...I mentioned to Dear Son that he was probably going to McDonald's. He thought that was funny. Ah, I can still make him laugh.

A special thanks to the Lions Club for making it such a great day.



Happy Easter!

Thursday, April 21, 2011

Klonopin Manufacturing Issue?

Is anyone having an issue getting Klonopin filled? Our local Walgreen's filled a partial order last month and said they could not fill the remainder of the order due to a "manufacturing issue". They said the problem started with the 2 mg tablets and then patients taking the 2 mg tablets switched over to the 1 mg tablets and now those are gone. In addition, the product was on back order for months and now they will no longer accept Klonopin prescriptions. I contacted them again this month and was told there was a manufacturing issue and it could not be filled. I asked to speak with the pharmacist there and she did not have any other information other than the information from the wholesaler that said it was on backorder. I contacted Osco Drug and they mentioned the same thing.


I contacted our neurologist at Big Academic Medical Center and this is the first he's heard of this issue. (Big Academic Medical Center uses the generic Clonazepam in their formulary.)


I went to Roche and couldn't find any press releases on any issues so I sent them an email and left them a voice mail. I also went to FDA.gov to determine if there were any safety recalls or issues and couldn't find anything. I've done countless google searches and have not found any information.


Interestingly enough, I did find a post where someone mentioned that pharmacies were being pressured by insurance companies to only offer the generic drugs in an effort to reduce their costs.


I am aware that the Klonopin wafer was discontinued however these are Klonopin tablets. We have attempted the generic Clonazepam a few years ago and it was not very effective and Dear Son had an increase in seizures.


Thanks.

Sunday, April 03, 2011

Individual Education Plan Follow Up

Photo of Dear Son and Mr. H (his classroom aide) in the pool at summer school.

Several weeks ago I wrote a series of posts on, "How to Raise a Happy and Healthy Severely Disabled Child". As a follow up to that post, I thought I would share some of the comments that were included in the hard copy of Dear Son's Individual Education Plan (IEP) meeting that I received this week. Dear Son's IEP was in early March and is a meeting where a student's individual education goals are made and shared with the entire team. They also summarize the student's achievement in the past year in several key areas: academic achievement, social/emotional/behavioral functioning, cognitive functioning as well as several other areas. Many of the summaries demonstrate Dear Son's happiness and are a pleasure to read. Some of the comments that made me smile were:


-"He loves being part of the group and is always smiling when other are around."

-"He continues to track voices and activity and especially enjoys it when other students are misbehaving."

-"He enjoys being positioned where he can view the most activity."

-"He is very easy going and "goes with the flow" when the schedule is changed." (A change in routine or schedule is not easy for some disabled children.)


But my favorite comments were given by the Occupational Therapists when she had to list Dear Son's strengths. She wrote:


-"Very engaging and aware of others and his environment."

-"Gets excited about novel and preferred activities."

-"Laughs joyfully."

-"Has preferences and attempts to actively influence situations in the classroom."

-"Can really have a presence in the classroom."

His challenges were the things that he couldn't change such as being dependent for all self care and mobility and limited communication skills.


Overall, I have a nice young man who is happy and is a pleasure to be around. His teacher said that the students and staff really enjoy it when he comes to school and they all wish he could attend daily (he is only able to attend three days a week due to his endurance/medical issues). In addition, he is much like any other teenager, wanting to check out the action and laughing when things go wrong. I love the fact that he is an easygoing young man.

Photo of Dear Son at his classroom graduation party last year.

This IEP summary has been similar to nearly all of the rest of them over the past eighteen years (well, technically, he didn't start school until he was three, lol). While it may be true that some children have issues that even the best care and love can't resolve, I feel good that the hard work that Dad and I have done over the years has paid off. I tell Dear Son every day that I have the "greatest kid in the whole world" and I mean it. But to see things in print, still continues to make my day, even after all of these years.

Note: Dear Son is nineteen years old and attends a day program offered through the school district for developmentally delayed students 18 and older. Dear Son has intractable seizures, dystonia (movement disorder) and is severely developmentally delayed as a result of a random mutation of the ARX gene; he also has a progressive neurological disorder.

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