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Mason..... condt

The three months with the bag were annoying, but definitely do-able.  It seemed that there was no rhyme or reason to when or how the bag would stick or fall off. We followed the same procedure every time, and sometimes it would stay for 3 days.  Others it would fall off after three hours. When we were out, it would leak and we'd have to rush home to change it.  He celebrated his first birthday with a bag, and it was a bittersweet party. We could not wait for the pull through surgery that would happen in just a few short weeks! 

Finally,mason hone 1 after three months, Mason's surgery was scheduled. On November 16th, 2010, He went into surgery as my younger sister and his godmother was having a c-section with Mason's first cousin, Avery.  The surgery lasted about 3 hours, and when he came out with the tube down his nose he looked terrible. He laid in the bed for three days and cried, watching his favorite show on repeat on the cheap hospital TV. I doubted our decision many times – he had been doing wonderfully with the bag. Why had we put him through this?  On the fourth day, things turned the corner.  Mason sat up, then stood up, and seemed back to normal within a matter of a few hours. This little boy always seemed to surprise me. When I anticipated the worst, he answered back with the best. He is such a little star! 

On the fourth day he had progressed so well that we were sent home. At first, we didn't have any issue with the rash, but 10 days post surgery he got the stomach bug!  My husband and I both got it as well, so we knew this was a virus and not enterocolitis. Unfortunately, his bowel was still sensitive from the surgery, so the diarrhoea lasted about a week. The rash got worse and worse, and we finally demanded answers from his surgeon, who prescribed Ilex paste. It worked wonders, and eventually we saw pink, healthy skin. 

About six weeks later, on Christmas,I looked at my little boy who was totally back to normal and healthy, into everything, and could not believe how far we had come! It has currently been nearly 5 months post-op, and we have had no problems. The colostomy bag seems like a bad dream, something I remember, but vaguely. The stooling has slowed down to about 3 to 4 times a day, and we anticipate that decreasing even more. manson 4He is a large, happy child who loves food; in fact, his NEW paediatrician encouraged us not to overfeed him because he has gained so much weight!  Last month he broke his leg. While most mothers might have been very upset at this accident, I had been through so much with the HD that a broken bone seemed easy!!  It has brought my husband and I much closer and made us a better team!  We can handle anything.  And Mason?  He has been through three hospital stays, many doctors offices, and he is still a happy, smiling boy. He doesn't dislike doctors, although the white coat does make him a little nervous.  I think he naturally had a great personality, but the HD has made him more adaptable to just about any situation! I am not happy that he was born with this problem, but I am at the point where I can see the positives of it happening in our family. 

Since Mason's diagnosis, we have learned of three other friends or friends of a friend who had HD as a child, and they are now normal adults. We know now that Mason will reach that point – in fact, he already has!  Besides being a little more aware of when and how he stools, we don't think about HD much at all anymore! 

My advice to parents who have children just diagnosed – take heart and be confident that you will eventually make it out of this dark place!  Keep asking questions. The doctors are good, but you know your child best. This experience is difficult, but you will see parts of yourself and your child that not many ever get to know about themselves!

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