The signs that something wasn’t right…

When my son was born I already had an eleven month old daughter. So I kind of already knew about how many months old he was supposed to be to hold up his head and other infantile milestones he was supposed to be hitting. When he was four months old we would have to put him in a boppy with pillows all around him just to keep him propped up. After a while he would end up using his hand to help him keep his head up also.  His Favorite toy was the Johnny jump. This jumper would keep him and his sister playing all morning. As I would watch my beautiful children play, I noticed that when Jr would try to push off to jump he would only use his toes to do so.  I took him to his Primary care doctor and she would just tell me that he was a late bloomer. By six or seven months old he still was not able to go from a laying down position to sitting up. His PCP finally referred me to the MDA clinic in Tampa, FL. The doctors there set him up with a muscle biopsy but the results came back inconclusive because the surgeon was unable to get a big enough sample. After they informed me of the results, they never mentioned a plan on what they were going to do. They did give him a wheelchair though by the time he was two. Unfortunately, I had to find a new neurologist because the hospital in Tampa could not give me the answers I needed. This journey has taught me to always trust your gut instinct or your mother’s intuition (whatever you would like to call it). You are the voice of your children.  You have to speak up if you disagree with the doctors and get a second opinion.  I may have learned it a little late but now he has one of the best neurologists. Our first appointment with this new neurologist was great. He checked him over and we discussed why I felt something was not right. He agreed with me and said that he could do blood work to find out and that he wanted my daughter to also be tested. The results came back about two months later. FINALLY!!! After two years I found out that my son has Spinal Muscular Atrophy. Not only did he have SMA but so did my three year old daughter.

 

 

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