A Very Emotional Week.
It's been a long hard week for us as reality is setting that we will most likely never have the same little boy even with meds. We had a great day on Tuesday, actually we haven't seen Vand'n that happy and himself in months. We took full advantage, dad took off work and we went St. George to the splash pad. I got my hopes up:(. Wednesday morning we woke up to his heavy eyes and angry heart. Everyone has to walk on egg shells around him and make sure everything is done and said perfectly to avoid his rage. I feel like our family is straining to just maintain survival.
If we go out people look at me like "control your child", Or we are packing a very big (70lb and really tall) 5 year old sleeping boy, along with our 2 year old and the 9 month old baby. Luckily we have Denim (our 11 yr old) to help with the younger ones. Easier to just stay home.
We did get in contact with another mom who has a son with very similar traits of narcolepsy. It was so great to hear from her and know that there is someone who knows what we r dealing with and that we can ask questions. We hope to find others. So please help us spread the word and if you know anyone who has young children with Narcolepsy please send them our way.
I would LOVE to visit with you! Our son was diagnosed in Sept. 2011. He too was also vaccinated for H1N1 and I believe it was the same situation that is was added in with the standard flu vaccine. We have been told that it was only the over seas H1N1 vaccine that seemed to be linked with N but we just found it too hard to believe! So many of your son's symptoms and your feelings are right on the money of what we have dealt with in the last 2 yrs. Like I said, we have been looking for other parents in situations similar to ours. My email address is lmljbmmeyer@gmail.com, I would love to hear from you to compare stories.
ReplyDelete