Tuesday, February 5, 2013
Hello Friends, There is so much I need to blog about! I hate that I have not had a lot of time to keep the blog updated like I would have liked. First of all, on January 11th West Marion Elementary School held a benefit for Cutter and his medical expenses. We could not believe the turnout that we had. The benefit raised over $10,000! There are no words to describe that gratitude that we feel. What a blessing! God definitely has provided. The benefit was wonderful, and seeing our community come together for our son was a feeling like no other. The love we felt that night was overpowering. We are so blessed to have so much support from our friends, family and our entire community. You wouldn't believe the way West Marion swooped in and made the benefit the success that it was. All of those people working so hard for my family's benefit was humbling. We will forever be in debt to all of those that have raised money for Cutter. When we started this journey with this disorder we had no idea how expensive the medical bills and medications would be. Even with insurance we pay A LOT of out of pocket expenses. These benefits have helped tremendously, and we will never be able to thank everyone enough. We just hope that in the future we are able to provide someone with the same love, compassion, and financial help that everyone has provided us with. Cutter is able to go back to preschool for now (until the surgery date gets closer). He is going twice a week for a few hours each time. This has been wonderful for him. The teachers are all so helpful, caring and understanding. They handle him very well, even through his fits of excitement and reluctance. The patience that they with him makes sending him to school very easy. He got his first IEP progress report, and it looks like he is doing great! Right now he is getting speech and physical therapy services at school once a week each. On Thursdays we have an occupational therapist that comes to the home to do OT with him. She is seeing good progress, and she does a great job on giving us ideas about how to work with him at home. Cutter will be in this same preschool class until he starts kindergarten, so three years total. I think this is exactly what he needs to help with the delays that his disorder has caused. As far as his seizures go he is having between 2-5 a day. There have been a few days where he did not have any. The episodes are still brief, but they do make him a little tired still. His medications are all the same. They do not want to change his meds until after the surgery. His two surgeries are scheduled for March 13 and March 20. We have to go down on March 12 for his Pre-op and CT scan. They are going to try to do the CT scan without sedation. We are nervous about this. Cutter was only 3 months old the last time they did a scan without sedation. We are unsure of how he will handle this process. Hopefully, it will be quick and painless. I am sure there will be lots of Hershey kisses and Toy Story goodies given afterwards! Hey, we will give him whatever he wants. Poor little guy, he has been through enough! We continue to see great things happening developmentally. He absolutely loves his brother, and Maverick copies everything Cutter does! Maverick has been really good for Cutter, and vice versa. I am so thankful that they have each other. They love to sing and dance and pretend. Cutter has a wonderful imagination, and he is teaching Maverick how to "make believe" now, too. Though he still struggles with communicating all of his needs, and potty training is not going as we had hoped, we feel he is making good gains. We are learning that patience is the key, and we don't always have as much as we should! However, with lots of prayer, and lots of support and encouragement, we will get through this! God will keep us safe through this storm! We appreciate all of the prayers! We will update again soon!