Mr. Mr update

In the first few years of his life, I spent a lot of time blogging about Mr. Mr. I was a stay at home mom and trying to manage the complexities of life with a child with special needs. Being on line, saved me in some many ways. When people question the integrity of relationships built on line, I can only use the examples of so many of my closest friends whom I met via on line during this time. Blogging and chatting virtually saved me from going into a deep dark depression.


Life has moved on, and we have settled into a routine with Mr. Mr, and I returned back to work.


Days are still challenging... as a family we struggle to include him but also give attention to his siblings who are often set aside due to his constant care. Our own needs are set aside. Simple tasks like going grocery shopping are exhausting and there is no putting him in the child care at the Y while mommy runs on the treadmill.


Recently we have been on a roller coaster of sorts.... although Mr. Mr. is a very involved child, (non-ambulatory, non-verbal and a pureed diet)  for the most part he is healthy. He has never needed medication and is usually in a happy mood as long as his belly is full and pants are clean. But the last two weeks we have been experiencing him having seizures. At first I didn't believe that was what was happening, but as the week progressed the activity became more and more obvious. He was having these "episodes" 6 - 10 times a day. The validation for me was when his school also confirmed that they were seeing the same thing.




Today we went for an EEG...he hated it. He hates his head touched, he hates laying on his back and most importantly he hates me in his face holding down his arms. The technician said to sleep deprive him.... yeah right! This kid is the king of cat naps and never sleeps longer than 4 hours at a clip to begin with.  We managed to make it through with minimal melt downs for both of us!


the neurologist snuck us in after and confirmed that what we were seeing were in fact seizures. He acted like this was just another thing, prescribed some meds and sent us on our way. I realize that for him this is common... children with special needs often develop a seizure disorder. What was most upsetting for me are the side affects of the med which can cause anger. I can't have my little man pissed off all the time!  What I find solace in is that even though his life is limited in his reality life is great, silly noises are hilarious and bright lights are pretty cool to check out. If he becomes grumpy, angry or just irate that will be a hard pill to swallow!


so we will wait... wait to see if the seizures stop or slow down... wait to see if he has any behavior changes and wait.......


if my children are my lessons in life this kid is teaching me plenty!!