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!

Today was a bad day for Masan! Our morning started by doing PT with his rice and beans tub to stimulate his nerves, but that just didn't ease the pain in his hands. He has been on vitamins with iron for a few weeks thinking that they may help, but unfortunately that isn't helping either. This child that used to be so happy and bubbly just doesn't have the energy to do the things that he once enjoyed. He loves playing video games but when his hands are hurting this bad he can't even enjoy that. I just wish I could take his pain from him, I would in a heart beat. If he is feeling better tomorrow we are going to go shopping for special school supplies cause he will be attending public school again come Thursday, hopefully this time it will be different than before. Wish us luck, talk to you again soon.

Masan's hands and feet

The CMT has really taken a toll on Masan's body. Pictured here are his hands and feet taken in Jan. 2008.

Masan and his buddy

The Unknown Road

It is hard as a parent to watch your children in any kind of pain, but to be a parent and know there is something wrong with your child but have everyone around you dismiss your thoughts well that is unbearable... I know because that is what happened to me. This is the story about our son Masan Robert Payne and the disease Charcot~ Marie Tooth that he was born with. To sum it up CMT patients slowly lose normal use of their feet/legs and hands/arms as nerves to the extremities degenerate and the muscles in the extremities become weakened because of the loss of stimulation by the affected nerves.
Here is how this long road began....
I think the first sign was the fact that he threw up a lot when he was a baby. The told us it was acid reflux and put him on medicine for it but, the medicine didn't help. Then when he was first learning to walk he was always on his toes and often complained that his calves hurt. His doctor said it was no big deal and he would grow out of it by the time he was 2. Age 2 came and went still walked on his toes, again the doctor said nothing to worry about but, this time sent him to PT.
In September of 2006 Masan started preschool and his teachers noticed he was falling a lot in a 4 hour period not as if he had tripped over something but, one minute he was up and the next he would drop. They also noticed his hands shaking while he was writing or cutting, Mrs. Myers expressed to me she was concerned. Finally after telling the doctor about what the teachers had observed he stepped up to the plate and scheduled us for an appointment with the Orthopedic surgeon. Again I was told he was fine and PT should cure things. PT didn't do anything actually it just seemed to make him hurt more, and to top it all off the Physical Therapist suggested that Masan be checked for Cerebral Palsy. At this point I felt helpless, why wouldn't the doctors just listen to me? I am his mother and I know him better then ANYONE! So I asked for a second opinion.....They sent us to a Neurologist at Children's Mercy Hospital in Kansas City, MO. Upon examination the neurologist noticed Masan had no reflexes in lower extremities. He requested more test to be ran. They did an EMG and noticed something very strange, so they sent him for a blood test to see if he had a disease the doctor called CMT. In October of 2007 we finally got the answers we had waited four years to hear. It was confirmed Masan suffered from an inherited disease called Charcot-Marie-Tooth. We were so happy to finally get answers, but then the doctors told us that Masan is loosing the use of his muscles very quickly and they don't understand why, so yet again we are left with no answers. We have always lived life one day at time, but once we were given Masan's diagnosis we were forced to face our fears and look them straight in the eye.
There are many people that got us where we are now, but there is one special lady that believed in me as a mother and helped me open the doctor's eyes. She was the only one who trusted me when I felt in my heart that something just wasn't right. This lady I am speaking of is Susan Myers, Masan’s preschool teacher. Not only did she keep me informed of any changes in Masan while he was at school, she let me know it was okay to fight for my child.
Since being diagnosed Masan has been put in 3 sets of Afo's, and is currently going through OT and PT. Although it is very rare Masan's vision has been affected, he has had his prescription changed twice over the last two years. Currently he uses a wheelchair for distance purposes. Masan attends school half days (due to fatigue) at Pickett Elementary an all level school that has fit Masan's needs perfectly. This child that at one time wouldn't unclench his arms from around my neck, has really blossomed into an amazing little man.

Will You for Give Me? Written by: April Payne for Masan Robert Payne

I only wanted my child to grow,
but there was something we didn't know
toe walking at four years old
not telling the difference between hot and cold
tripping and falling or passing out
did they know what they were talking about
everyone told me it couldn't be
no one would listen, no one could see
doctor after doctor, tests after tests
I knew my son deserved the best
they told us CP and then something new
I got on my knees and asked GOD what to do
finally they confirmed it is CMT
an inherited disease the naked eye don't see
It hides inside way down deep
attacks your nerves and never sleeps
there is no cure up to this date
for now our life is all up to fate
One day I hope you will understand why
I hold you close at night and cry
Will you ever forgive me for what I've done
I love you my angel, my heart, my son!