Our story of how an inherited disease called Charcot-Marie-Tooth has affected our lives and how we live with it.
Saturday, May 31
Oh, what a week!
OMG, what a week.... A week ago today I woke up about 2am and my left arm was numb and had a sharp pain in it. I sat up and watched TV for a bit thinking the numbness would go away and then I could get some sleep, unfortunately I started feeling worse. I had heartburn bad and it was starting to get hard to breathe. I took a HOT bath, (sometimes not being able to tell if the water is hot or cold is a good thing) I really just wanted to relax and wait for the heartburn to pass. Over the next several hours I tried everything from peppermints to baking soda in water, heck I even tried a heating pad! I talked to my mom on the phone and told her how bad I was feeling, she was worried and suggested I get to the ER asap she feared the same thing I did at that point....I was having a heart attack! Once I got to the ER and started telling them what had taken place that morning they got me into a room and did an EKG, it came back normal...What could be causing me this much pain if it wasn't a heart attack? They took me down for a sonogram and then it was confirmed I had gallstones and a very inflamed gallbladder, I needed emergency surgery to have it removed! Honestly it was the easiest surgery I have had to have done to date. By the next morning I was out of bed and even walking down the hall to get my own Sunday paper=) Walter brought the boys up to see me first thing Sunday morning and when I saw the scared look in Masan's eyes I knew that this was my second chance, I needed to start watching what I am eating and steer clear of all the fatty foods. I have never really sat and thought that I wouldn't be around to watch my babies grow into the respectful men I have taught them to be until that day! Don't get me wrong every parent believes that they will pass before their children, but not before they are grown! I got to go home Sunday evening with only mild restrictions. So far I am doing great my belly is finally going down from all the swelling and the incisions are healing great! The best thing is I have changed my eating habits for the better and have more energy that I have had in months. I actually went grocery shopping with Walt and the boys this past Thursday, but I think I may have walked a bit too much because I had to come home and take a nap. No matter what else I may have learned this week I can say I learned a very valuable lesson....Never take for granted that you can spent time with your family later instead of now, never go to bed mad and make sure the last thing you ever say to someone is how much you really love them! I have been blessed by God and the angels I have watching over me! I am going to use the time I have left on earth to bring a smile to the face of everyone I meet and hopefully make a difference in another person's life=) I hope that everyone who reads this chooses to do the same, miracles happen everyday all you have to do is take the time to notice them!
Monday, May 19
Well tonight was our "official" dinner from Dream Factory, where they announce that Masan has been selected to receive his dream! Masan picked Ryan's Steakhouse to eat at. We invited Grandma and Grandpa Clinton, Great-grandma Clinton, and Masan's cousins Meggin and Justin to come to celebrate this amazing news with us. Terry and Joann Parker (The Dream Factory representatives) met us there and welcomed us with open arms. We all ate and talked about what to expect while we are in Florida, then much to our surprise Ryan's manager walked up to Masan and handed him a dessert that was made just for him. It looked yummy! Nice, rich and full of chocolate=) Terry told us that from here on out Masan is a part of the Dream Factory family and they will follow him throughout his life. It is so amazing what these people do, I am so honored to be a part of it. The smiles on kid's faces once they have received their dreams is priceless. It is truly a dream come true that for one week we don't have any worries in our life just a chance to spend time together as a family having fun, how many people can say that? I know that we have never been able to do that before. I have to say that the highlight of the dinner was when Joann told Masan about the Indiana Jones 3D show and ride. His big brown eyes just lit up like no tomorrow, finally all his dreams will come true!
Sunday, May 11
It has been a very busy week for us. Masan was asked to be in the Apple Blossom parade which was held on Saturday May 3, 2008. We had a blast Masan, Prestan and myself all rode on the Dream Factory float and threw candy to all the kids and their families. Then on Tuesday we headed off to KU for the MDA clinic. On Wednesday we had a hearing test done because Masan has been complaining about his right ear. Sure enough the doctor said that there was some fluid in it and gave us a prescription for antibiotics, we have to go back in a month and see if that was the problem. Thursday and Friday seemed okay for Masan but then yesterday he started complaining about his hear hurting him, enough that he was in tears over it. I think maybe he is having problems with his allergies but only time will tell. I know he has been spending a lot more time outside lately and that mixed with all the rain we have had makes for a nasty combination=( Well we only have a few more weeks of school left and his teacher has been testing him to see how much he knows, so far she says he is right on track! Looks like he will be moving on to the first grade next year!


Friday, May 2
Dream Factory
We got some really good news yesterday that I wanted to share with you all. Masan has been selected by The Dream Factory Foundation to get his dream of going to Disney World=) We will be going in July and will get to stay for 6 days. This will be the very first vacation we have ever taken as a family. Actually this is the first time Masan or Prestan will be sleeping away from home. We are all very excited and to top it all off tomorrow we are going to be riding on the Dream Factory float during the Apple Blossom parade. I wanted to thank everyone for the prayers that we have received. I will keep you posted as I know more!
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