Thursday, June 11, 2009

A Couple Updates

We went to the neurologist this week to talk about getting Botox injections for Gavin. There is so much conflicting information on getting this done. I went in not sure about the whole thing, but I left feeling fairly confident that it's something that we should at least try with Gavin.

I really trust his neurologist! I am confident that he would not steer us in a bad direction. He has done this for the last 5 years, for 100's of patients. He has had great success with it. He said that he only had 1 patient that had any adverse side effects, so I'm feeling pretty good about those results. Gavin's neurologist used to be an orthopedic surgeon, so he's a very smart guy. He said that he thinks that it could help Gavin a lot. Gavin has so much spasticity in his lower body and it makes it difficult to bend his hips, legs and ankles. The Botox would help to losen the muscles and allow us to do some really good therapy on Gavin while he is more loose. That is the biggest thing, after getting the shots, we would have to work his muscles hard to losen them up. The doctor said that sometimes you only need a couple of injections between 3-6 months apart and if therapy is done between times, some patients haven't needed to come back for more Botox because the therapy helped to losen the patient up enough. Right now, Gavin is too tight and spastic to do good therapy on him. So, as of today, I am planning on giving this a try soon. Hopefully this will benefit Gavin greatly!

Also, I wanted to update all of you on the "mall incident." I decided to call the management of the mall, instead of writing them a letter. This way I would know that something was done about the situation. I called them last week and this week a manager called me back. She was very nice and said that I was right in my thinking. She said that exceptions to their rule should be made for children with handicaps! She said that she would talk to the security guard about this. She also said that the general manager might be giving me a call to talk more about this with me. I hope that he does, because I really want this matter to be cleared up and I want to make sure that children with special needs or adults with special needs are able to do what everyone else gets to do! I told the lady that I wasn't upset with the guard, because he was just doing his job, but that I NEEDED to stand up and fight for my child and others like him. I believe that this is a great responsibility that I have now. Gavin and others like him deserve others fighting for their comforts and rights! And, this Momma is not sitting down without a fight, if that is what is needed! But, I will do it with a smile on my face and a good attitude. "The squeaky wheel may get the grease," but I also believe that one with a good attitude gets even more! :)

And, just because I think posts are better with pictures, here is one of my little guy! Isn't he precious?!

"Better is the poor who walks in his integrity, than one who is perverse in his lips, and is a fool." Proverbs 19:1


Jessica mommy to Alex/ RTS said...

Good idea to call instead of write! I hope you get a call from the manager too. Lte us know if you do! Good job mamma!
I hope the botox shows good results.

Michelle said...

Precious indeed! Glad you made the call. I really hope the general manager calls you back.

Lacey said...

You go girl. Way to stand up for our kids everywhere. The botox will be great, Arianna had great success with it.

Ali Rae said...

Regarding the "mall incident," you rock! I work with kids with disabilities and I make such a fuss when the doors are not wheelchair accessible. In a restaurant, one of my kids hit a garbage can with her power wheelchair when the door it was next to was a sharp turn and the poor thing was so embarrassed. I not so quietly whispered to her, that it wasn't her fault people didn't know how to create open environments for everyone. She smiled and agreed that they should fix it so she can be comfortable too. Don't even get me started on shopping racks, I shove them out of the way happily when the kids want to pick out new clothes since they don't realize everyone is 10 inches wide!

PS. I love your blog on "Everyone needs a Gavin." I cry whenever I read it. I agree that everyone should meet someone with Down's Syndrome, there are many that have changed my life.

PPS. Gavin's smile is priceless. Thank you for writing about your family, it is a blessing to others, including me.

Tamara said...

Whats that.. you catch more flies with honey... yeah well that's what ya did! I am happy that they felt responsible enough to call you and share in your fight. I hope this all works out the way it should and that maybe you have began to pave the road for others!

As far as the Botox, as parents of these precious little ones come heavy responsibility and tough choices. If you feel in your heart that this is right, then I think you can't go wrong. Gods good about giving us that right gut feeling and that not right gut feeling! I will be anxious to hear how it works on him and of course I will be praying he becomes a loosy goosey and therapy works wonders in the mean time.

Your photo is precious! Keep shooting away! Hey hows your garden coming along? Some pesty little bug is eating my shoots! Then we had a massive hail storm which tore them all up, so if we get anything from them I will be shocked!

O.K. I just read your scripture quote at the end of your post and got convicted! I'm a fool! Oh shoot, just something else to work on!

Inspired said...

I'm proud of the way you handled the mall situation. Way to go sticking up for what was right!!

Annette Gysen said...

How could you not fight for a sweet face like that? Way to go on the mall incident--that's how things get changed!

Praying that God will use the Botox to improve movement for Gavin!