Things have slowed down quite a bit for us. Logan is now off of his FK! He no longer has a suppressed immune system. Since he is off his FK he also went off a couple of other meds, so now he only has to take 9 medications instead of 13! Logan is still doing amazing, he is a huge ball of energy. I am ready to go to bed as soon as I get the kids in bed at night.
Aiden started school about three weeks ago. He is doing great. The first week and half I had to fight him to get him on the bus, I literally had to pull him into the bus! But now he gets right on and isn't anxious anymore.
I am surprised at the amount of things they have to learn in Kindergarten now. His teacher said its the new first grade. Some of the things he is learning I was taught in second grade. He has homework every night, that he loves to do. Austin started speech therapy to work on, what I like to call his Boston mixed with German accent. He is doing very well with it, he corrects himself now without me telling him to. Austin is still getting used to Aiden not being home with him. He has Logan, but he can't really sit there and have a conversation with Logan. It brings tears to my eyes right now typing that. When they were babies I always pictured them doing everything together, but they can't even have a simple conversation. It really does break my heart. But enough of that! All I can do is do everytihng in my power to help find a cure for Sanfilippo Syndrome.
A couple of exciting things happened since the last time I wrote. News 8 Austin, now known as YNN came out and interviewed us. The story turned out amazing, I hope a lot of people got to see it and learn from it! Also, just today I got the opportunity to tell a group of PT students about Sanfilippo Syndrome. They got to meet Logan and play with him, Logan had them running all over the place!
It's amazing the difference Logan is making in so many lives without even realizing it. Yes, he has an awful disease. Yes, I wish he didn't have it. But the fact is he does, so we are making the best out of it. We are educating people, reaching out to people who would have never known about it. Logan brings so much joy into people's lives and all he has to do is laugh! Even though I may not have Logan for long, I am so lucky to have him in my life. He has taught Billy, his brothers and I so much. He is an amazing little boy, after everything he has gone through he is still so happy. And maybe we just might be able to find a cure in his lifetime, that would be the most wonderful thing ever. That's the good thing about having hope, it's what is keeps us moving forward.
"Hope is not a dream but a way of making dreams become reality"
~ L. J. Suenens
Logan with some of the PT students today.
Below is the link to the news interview.
http://austin.ynn.com/content/280075/family-hopes-to-bring-awareness-to-rare-genetic-disorder
