Oh Oliver

We returned last week from a wonderful time away in Ohio and Michigan visiting family and friends. Oliver was a super traveler. He didn't mind being in the car and loved being able to sleep in a king size hotel bed between Matt & I. We took things slowly - more time spent inside with the air conditioning and minimizing activities. He does best with a more relaxed pace and we obliged.

We lounged by our friends' pool and Oliver even enjoyed some time in the water. It was truly a fantastic time away. A few weeks ago we weren't sure we would be making the trip. However, our confidence improved and we felt Oliver would benefit from seeing those who love him.

Returning home is never easy. The post vacation blues begin to set in. I miss my friends. We are in different states and countries, but manage a yearly get together each July. We look forward to it the entire year and saying goodbye is never easy. Watching them say goodbye to Oliver was especially painful this go around. The adults know.

Since we have been home, Oliver hasn't been himself. He isn't sleeping well, which is common among children with Sanfilippo. However he has actually never gone through a sleeplessness stage, so this all feels quite new. When we put him to bed, his brain kicks into high gear and his legs will not stop moving. Crossing over and over again for hours. Hours.

We met with his primary doctor Wednesday and consulted with some other members of his team. They recommended we try a new medication to help him fall asleep. We are on night three with very little improvement. Tonight I put lavender oil on his feet, warmed a lavender lovey to keep in his bed, a attached a small fan to keep both air moving and provide a comforting hum. The combination of things seemed to help a tiny bit, as it only took him three hours to fall asleep instead of the recent five.

I feared this would happen. Once seizures start, side effects pop up. New medications are added. And it feels like I can't get ahead of the disease. It reminds me of our final six months with Waverly.

For Wavey, it was her arms. They were in constant motion. For hours she would raise them up over the head and then bring them back to her torso. We would use weighted blankets and try to wrap her arms, but she always found a way to pry them loose. As I watched Oliver's wiggly legs, I was reminded of her arms. The movement was the sign that her brain was being fully overtaken by the disease. She was incapable of even stopping a limb. She was restless and utterly exhausted.

I remember feeling a shift. Something was changing and I didn't like it. Everything inside of me was screaming. I feel that way again. And it terrifies me.

I know.


Unknown said…
I hate this. And I love you all.
Anonymous said…
Reading this, breaks my heart . I’m so so sorry for the pain you feel, I wish I knew what to say.
Prayers come to you and your family from Switzerland
Crystal Hinman said…
Broken hearted for you and your family. We have lots of seizure meds on board and have always had problems with Moses specifically getting into deep sleep. Switching meds landed us on a med that made him have seizures only in his sleep and my eye rolling at that almost broke my glasses. We have been in a good zone for awhile now and recently he started having hallucinations which can happen in Tay Sachs and usually lead to meds with side effects and meds for those side effects. Messy. We are working around them for as long as we can and hoping they don’t start to scare him all day long. I know you know this but you all are doing a great job. Working with what you have and trying to maintain a level of comfort for O. It’s little comfort for you and your husband I am sure but good job nonetheless. It’s not fair that our children have to go through this.
Aubrey. said…
Shit, Shannon. I’m sorry.

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