Good Morning, It has been a very busy week! I went to the MDA clinic last week to have the EMG done on myself, I must admit as I was laying there waiting for the doctors to begin the test my heart really started to race. As I looked over at Masan all the fear I had inside just disappeared, I knew I had to finish this test for him. Honestly it wasn't as bad as I thought....and then they shocked me behind my knee OMG I thought that I was going to die. Not only did they shock me there once, they did it 4 times in a row...OUCH!!! After that the doctor came in (with her bags and coat like she was ready to leave for the day)to preform the needle part of the EMG. She began telling me that the results were my nerve responce were a little on the slow side but she didn't think it was a big deal, however the ordering doctor may disagree with her and I will have to have this test redone. Then she asked me to stick my leg out so they could stick this needle in 6 different places and test the muscle. I am not an idiot, if I may have to redo this test why on earth would I have these needles stuck into me? I looked that doctor in the eyes and as nice as I could I told her "There is NO WAY in hell that I am going through that twice, so I am sorry but I am refusing to have the test done!" After that eventful day I felt like Masan needed a break from doctors and time to just be a kid, so I took him and Prestan to feed the ducks, and then go play at the park. Something that should be fun for a kid seemed to turn into a bad idea as Prestan showed off how well he could climb the rock wall, and then when Masan tried he didn't have the strength in his arms to pull himself up. I've never felt as bad as I did seeing Masan's face knowing that his baby brother could do something he couldn't. I tried to help him, but I think that just made things worse. For a parent you want to shield your child from any pain they may feel, but how do I shield him from this? He is a very smart kid and can feel that he is getting weaker, there are things that he used to be able to do that he can no longer. This whole thing is breaking my heart=( Here are pics I took at the duck pond and the park.

It is finally here, I am headed to MDA clinic to have my EMG done and see what the doctors can tell me. Masan is going with me and I have to say he is really happy about it, all the tests that he has had he thinks it is funny that it is mom's turn to be shocked and poked on=) Yesterday seemed like one of his worst days in awhile. We spent most of the day at Rob and Kim's house, at one point he was playing with Prestan and he fell down and hit the back of his head on the sidewalk. Bless his heart he didn't want Kim to see him cry so he buried his face into me and stayed there until he was done crying. Rob and Kim have a large yard with a pool and hot tub so of course just like the other kids Masan wanted to explore which was great to see him playing but every time I looked up he was either crying or on the ground cause he had just fell. We went to the neurologist on Thursday and he agrees that Masan is getting weaker, but said there is nothing that he can do other than to send him to the MDA clinic (we have already been there). At one point during the appointment he suggested Masan maybe suffering from something else as well, but in order to find out for sure they would have to run another series of tests. For being just 6 I think he has already had to endure enough pain, so for now we will just sit back and keep an eye on him and see if he continues to rapidly progress. I hope that this blog has been some kind of help or at least comfort for other parents that may be going through the same thing that we are. May God bless you all and you families!

Yesterday Masan had a real good day! He played during recess (not hard but at least he played). I think that he is used to going back to school and what a brave little boy he is for riding the bus. Up until last week he had never rode with anyone but his dad or me, watching him get on the bus and get buckled in you would think he has been riding it for years. I am inspired by the courage that he shows every single day. Tomorrow is our check up with the neurologist, I am hoping that it goes okay. Last week the doctor ordered lab work to be done on Masan, well the nurse called to let us know the results. Somehow Masan has elevated Calcium levels and lowered Potassium levels. I find these results amusing because he don't eat dairy and eats 2 bananas everyday. Please if anyone one is reading this that has CMT let me know if you are experiencing any of the same symptoms. Well I hope that you all have a blessed day and I will let you know what the neurologist has to say.

Well today could have gone a lot better. To start the day off, Masan woke up barking like a seal and had to take a breathing treatment before he got on the bus. (Not a fun way to start the day!) Then I picked him up from school at 11:30, and we headed to Heartland to get another round of blood tests done. Masan was so big and brave not wanting to cry, but once that needle stuck into his arm it was all over. I have no idea what they are testing him for this time, all I know is that they are trying to figure out why he is so tired and weak. I just can't imagine anything else going wrong for him, so lets hope that all these tests come back okay. After we left there we came home, Masan didn't even make it in the house before he was asking for his rice and beans therapy bowl. I think it is because it was raining and yucky outside, he tends to cramp a lot more when we have bad weather. Walt bought him a stability ball to do some of his PT exercises on, but he just wasn't up to par so I will wait until tomorrow to begin them. I must say no matter how bad he feels he always finds a way to make all of us smile, whether is be making funny faces or singing a silly song that he learned in school. It is hard to see him be in pain, but when he smiles up at you it melts all the bad feelings away and makes you fight twice as hard to find anything that will give him some relief. I hope if any of you are going through the same thing as Masan you know that you aren't alone. If you would like to talk to someone about it I am here, so feel free to drop me a comment. May you all have a blessed day!

Good Morning! Well yesterday was Masan's first day back at school, and I am happy to report that he loved it. We arrived at the school about 8:45 a.m., went in and met the teacher. I told her little things that she needed to know like how if she sees him pressing his hands up against his face it means they are cramping up. We took his tub of beans and rice, so if they did cramp up he could do his therapy. Then the other students started coming in and saying hello so he looked at me with a few tears in his eyes and shook his head up and down as if to tell me it was okay for me to leave. Masan has an Individual Education Plan and a 504 plan in effect, which means... He only goes 1/2 a day and he is transferred to and from other classes (lunch, art,music) by wheelchair. At 12:45p.m. I was standing outside waiting on his bus to bring him home, as I saw it round the corner my heart sank. I started to question if what I was doing was right, but just then the bus stopped and the doors opened and here came Masan standing there with a grin from ear to ear! He was so excited he told me all about how he made new friends and how his teacher pushed him in the wheelchair so he didn't have to worry about keeping up with the other kids. I knew at that moment that I WAS doing the right thing for him. He even got a "super"sticker for the coloring he did=) All in all it was a really good day!

Who has the answers?

It just don't seem like Thursday, I think it is cause I had so much that I needed to get done and usually we have all of our appointments on Monday and Tuesday. Why was today so different you ask? Well as of Monday April 7, 2008 Masan will be back in the St. Joseph School District, so today we had to go to the doctor and get all of his paper work signed and dated. We were given an order for a wheelchair so then he had to go get fitted for that also. I can't express how hard it was to see my angel sitting in this wheelchair, although he doesn't need to be in it full time right now he is to be in it if we are going any distance. Personally I think the doctors are trying to come up with ways to keep him from getting the leg cramps, I hate to burst their bubbles but so far nothing that they have suggested has helped. Dr. Kosse said that they have filled out Masan's referral from Dream Factory and his nurse was getting ready to send it as we were leaving. It is so funny to see these people, who have watched Masan grow over the last six years, they are so concerned and sympathetic now. But at times you feel like asking "Where the hell was all that concern and sympathy when I first stated that there was something wrong?" Now they are all baffled with no answers and the only words they can bring themselves to say is they will help in any way they can....Okay then help I WANT ANSWERS!!!!!! I want to know why? why him? why now? why is it so freaking severe? What do I tell my six year old when he asks me if he will ever be able to run and play like his brothers? What do I tell him when he asks why he can't play outside in the snow? Why are there so many question and no one has any answers for me? Okay well I hope you all have a very beautiful day filled with happiness. God Bless!