I cannot believe it is the end 2012.  This has been an eventful year.  It honestly feels like 5 years have passed since William’s diagnosis instead of 7 months.  

We had the time of our lives this month in Orlando for our Make-a-wish trip.  We flew and visited all parks including  Disney World, Sea World and Universal.  We were going non-stop, and William was such a trooper!  He was always ready to go and take everything in.  It was a great family bonding experience that we will never forget, and we have tons of pictures to remind us as well.

We had a great Christmas and went to Macon and Columbus to see family. We want to make use of every opportunity we have to visit with family and let everyone see William.

Christmas or any holiday/birthday is hard for us because even though we try, we can’t help but think about next year and how our family will be faring.  It is also hard because we don’t fit into the normal mold. William doesn’t play with toys or understand a lot, and when people haven’t seen him or don’t know the full situation, it is hard to see their expressions.  He changes so much if you haven’t seen him in a month, he has, more than likely, lost a skill.  I would describe it as he is returning to infancy.  A baby grows and develops so much during the first year and gains so many skills.  Well, William is losing his skills as quickly as most children gain them. This is the most painful part of the disease as those who love him have to sit by and watch our highly spirited boy lose parts of his personality and motor skills.  Every step down or every skill lost triggers a grieving response.

It is really hard for anyone to understand what our lives are like on a daily basis unless they are living it. With this disease, it strips the child of every motor skill they have until they are just living in a vegetative state.  We may not have a lot now, but things will get worse, and we need to be grateful that William is still able to see a little and is still trying to walk.  We are also grateful for every smile he gives.

This has given new meaning to the expression, “Live life one day at time for tomorrow has enough troubles of its own.”  It is our motto and our goal.

I didn’t want this post to be a depressing one, but an honest one, and wanted to let you in on a little of what we are dealing with in the physical and emotional realm of this disease.

Some of you have been asking how you can help. An account has been created to help with William's medical expenses, and this is an easy way to contribute using PayPal or credit card.

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.