Our story of how an inherited disease called Charcot-Marie-Tooth has affected our lives and how we live with it.
Thursday, April 10
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!
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