I've kind of fallen off the face of the earth. In my writing and I feel like that in general. This journey is hard. It tests me every day.
As for Wesley, he started having 'absence seizures' about a month ago. That Saturday he had two, an hour apart. I didn't know they were seizures then, but knew something was wrong when he spaced (completely) out and his body became rigid. Eight hours in the ER and tons of blood work later we were told it was seizures and to get an EEG.
This hit us hard. We weren't ready for that. They said it could be a one time thing and I held onto that hope for awhile. For as long as I could. It lasted 4 days. Then he had another one. I knew it wasn't a one time thing and that was defeating. They aren't regular. He can go a week without one. A week and a half even. Then out of no where, it reminds me. We have not been able to be seen by the neurologist yet so we are just waiting. It seems like we are always waiting. My least favorite thing of all. It seems I get used to our routine and then life says "master this next" and tosses another lion in the arena.
This hit us hard. We weren't ready for that. They said it could be a one time thing and I held onto that hope for awhile. For as long as I could. It lasted 4 days. Then he had another one. I knew it wasn't a one time thing and that was defeating. They aren't regular. He can go a week without one. A week and a half even. Then out of no where, it reminds me. We have not been able to be seen by the neurologist yet so we are just waiting. It seems like we are always waiting. My least favorite thing of all. It seems I get used to our routine and then life says "master this next" and tosses another lion in the arena.
The National MPS Family Conference is in Ohio this year. We want to go! We were unable to attend last year but it is our goal this year. We NEED to meet more families like ours. I feel like we need to make those connections to feel more support and belonging. It is so lonely sometimes being the family with a child with a life limiting disease (Hunter Syndrome) because no one else truly understands.
I promise to start writing regularly again. We have a lot of new things in the works and I will tell them to you all a little later. I have to make lunch :)
An updated picture of Wesley :)!
Playing with his sisters balloons from her first birthday party.
