EMG Testing

Yesterday was officially one of the worst days of my adult life! Yesterday was Maxwell's EMG test that we have been waiting for. The test was to check and see how his muscles are playing with his nerves. The first part Max was a little trooper. The doctor placed sticky tabs on his skin and and then clipped what looked like alligator clips to them. He then shocked him topically. Then came the horrible part. My mom went with us to help me with Max. At this point she was trying to let him watch Sesame Street on her phone and that worked for the first part. The second that was no help at all. Even "Steve" couldn't console him. I had to lay across his body while the doctor inserted needle after needle sending electric shock directly into his muscles. Several times the Doctor kept pulling out the needle and putting it back in over and over. It took me laying across his body and my mom holding his head and arms. I tried to console him but nothing worked. I felt helpless thinking that I only wanted to go through this once but was so tempted to yell at the Doctor to stop that it wasn't worth it. It was a physically, mentally and emotionally exhausting day for everyone. At the end I decided we all needed milkshakes to feel better. These pictures are from when we got home and he was trying to relax. I also gave Max some Tylenol when we got home to help with the soreness and the bruises that were starting to show up. Everything seemed okay when we got home other than that we were both beat! Jeff and I put him to bed at 8 and he fell right to sleep. I went to bed a few hours later and Jeff came in with Max. Apparently my poor little man was hurting. He didn't want me to touch the side that he was prodded on. Jeff gave him more medicine and a cuddle. That made me feel so bad for putting him through so much. What is the worst part of the entire day was that the doctor found nothing abnormal, NOTHING. I wanted the freak out! I put my son through this painful experience to come back with no answers.

I wonder when will all the testing stop. When will someone finally have some answers. And when will Max stop being a human pin cushion. At what point do Jeff and I decide enough is enough. I want so badly for people to understand. Know that Max is the best thing that has every happened to me. He truly is a smart child, and anyone that spends any time with him would see that. This week has been hard. This week someone referred to Max as "special needs." I know that it is just a word, but it means something to me. It makes me feel like they think my sweet precious child is somehow inferior. When I hung up the phone I began to cry because in this situation it was a place saying my son couldn't attend there. That they were not able to meet his needs. What needs, love, friendship and fun? It kills me to know that Max is reaching a point that he isn't welcome somewhere because we don't know what is going on with him. I hate that he is excluded because of something he cant help. I would give up everything I have for this child and will if that is what it comes down to. The next test is a biopsy of Maxwell's leg. They will make a small incision and cut out a piece of muscle to study the actual muscle and see if that is possibly where the problems lies. After that his neurologist here will send him to a specialized neurologist hopefully in Texas so we will not have to travel to far. There have also been talks about going to the east coast and going to a hospital there that is studying these kinds of muscle weakness in children. But that starts being experimental medicine and that does start to scare me. Thank you for the kind thoughts and prayers and please continue to think of us during this journey. I can not tell you how loved I felt yesterday. After a bad day to receive calls, texts and emails saying how much you care warmed my heart. I know someday that Max will be able to tell me how much he loves me. I want so badly to speak to my son and to walk with him and go to the park where he can run and play. And the day that happens I guarantee there will be tears of joy, thousands of pictures and all of you to thank for the support.