A PROUD mama's testimonial!!

I haven't been able to update the blog since Logan's birthday. It has just been total chaos. His party was on the 9th, and it couldn't have been more perfect. We had such a great turn out for his party, Mickey Mouse everywhere, great food, and great cake. It's amazing to see the amount of support that we have all in the same building. It was overwhelming, and beautiful. It's amazing that a one year old can inspire so many people. Not many parents can say that.
We had Logan's birthday party at the Greensboro Moose Lodge because we had a feeling it would be a big turnout. There were about 150 people in and out for the party. Logan loved all of the attention. He loved it so much, he took a nap in the middle of his party. Logan got to eat some icing off of a cupcake, which he LOVED! We were able to donate $500 to the Joshua Frase Foundation, plus other donations that were done over the internet and by mail. Helping the JFF fund research for a cure, is the best gift Logan could possibly have.

As Logan's parents, we want what any parent wants, and that's the best for their child. We have to fight with people sometimes to get what we know he needs. Once we get it, and Logan shows them what he IS capable of doing, they had wished they would have done it sooner. There are NO LIMITS with this boy. We took him to UNC today for a passy muir valve trial. For those of you who don't know what that is, it's a valve that is placed on the end of the trach that allows Logan to vocalize. They were very nervous about doing this, because they thought Logan was such a medically fragile child. Let's just say that Logan gave those speech pathologists, and RTs a run for their money. They first put the passy muir in line with the vent tubing. Logan immediately started smiling and kicking his feet. He vocalized a little bit, but they were worried his vent settings might change and he couldn't tolerate it. After being on it for 15 minutes and very impressed, they decided to try it without the vent. Logan is doing 2-3 hours off the vent during the day now, so it was no issue taking him off. Logan was on the passy muir for 20 minutes and still going strong. He had no tracheal secretions off of the vent, which was really surprising for Rene and myself! So noises won't be anything that's going to happen right away. It will happen more often as he gets use to it. RT said that the passy muir will not only help him come off of the vent much faster, but it would also help with swallowing. They are being very aggressive with Logan. A swallow study is in the very near future. At least once the swallow study is done, we will know what he is capable of doing, and what speech needs to work on.
Logan is getting noticeably strong to every one that sees him. He is able to make noises on the vent, without a passy muir, he can make a noise with his mouth and tongue, he has a very strong bite, he is attempting swallowing and sometimes completing a swallow, he can raise his arms up in the air, hold his head up unassisted for 60 seconds, sit up assisted for as long as you help him, he is starting to wiggle his butt, he can kick,  he can lift his legs in the air and grab them with his hands, he can clap, he can say "mama" and "dada", he's off of the vent 2-3 hours a day, and now we can say that he can tolerate the passy muir better than any of us thought he could. And to think, these are things we thought he might not ever do. The littlest things are a huge celebration to us.  The boy is full of endless possibilities!! Once gene therapy is in place, I cannot wait to see what he can do!
As first time parents, we don't ever think something like this could happen to your child. We never, in a million years would have imagined having Logan being this way. But this is Logan. He is his own, unique, individual, and we are VERY PROUD that he is our son. I use to say that Logan is disabled, but I have learned that he is not disabled, he is DIFFERENTLY abled.  I use to watch people as they would walk by us and see Logan and all of his equipment, but the more I think about it, I stopped caring. They are just curious, and you would be surprised how many people see through all of the equipment and see Logan for the sweet, determined little boy that he is. How could we not be proud?

Okay, okay, I'm done gloating! God bless!