Update from St. Louis

My emotions are raw right now so I probably shouldn’t be writing this.  We had our 48-hour EEG at St. Louis Children’s Hospital , but it was stopped at 30 hours. The doctors saw some break-through seizures, but they were not significant enough to keep us the entire 48 hours. The EEG showed William having seizures without any outward signs of distress.  Meaning he is having them without anyone knowing.

We were told that his vision has decline significantly.  He could lose his vision in three to six months.  We were also told that he may not regain his ability to walk. The progression of the disease is variable, and on average, children at this stage go down quickly with regards to mobility.  This was a very hard trip!!  

I went to St. Louis hoping the doctors would give us something to help the tremors and improve his mobility.  I was not prepared for the disease to be striking us so quickly.  William was just diagnosed in May.   Seven months later, he is growing immobile and losing his truck support, meaning he is losing the ability to sit up by himself.

I am glad we went ahead and placed the gastric tube.  At the time I thought we were being proactive, but probably, we would have to make that decision sooner rather than later.   The tube has simplified giving him his medications which before would have taken up the majority of the day.

I am very grateful that we are going to Disney next week, especially after hearing this news about William’s vision.  Time is not on our side.

We are gaining strength through all the prayers and concerns people have been sending.  They touch our hearts so much.  I also know that there are many other Batten parents out there doing the same thing, and if they can manage, so can I.

God will give me the strength to handle this situation.