School

We are doing fine; we have bad days but mostly good.  William’s seizures are getting under control with the increase in Onfi.  He is a happy child.  He knows he is loved as he feels it around everyone he knows.

We are going through a transition concerning school.  In August, William will be transferring to the special education class at Hill Farm Elementary, the same school Addie attends.  I am excited but nervous at the same time.  I will love having both kids in the same place and will actually have time to help more at the school.  We LOVE everyone at Access, William’s current school, and I cry every time I think about this transition.  I can take William to Access and know that Chelsea, Leslie and Stephanie, along with his therapists, love him; and that means everything to me.  They care for him on a level that is far more than just a student in a classroom, and that is what I want for William. I don’t have high aspirations of his learning the alphabet or numbers; all I want is for him to feel loved and wanted.
 
Addie gave me chills when I asked her about her feelings on the subject.   I know kids can be mean and wanted her to be honest with me about how she would feel about her brother going to the same school. She said, “I am excited.   Mom, I am proud of William.” It took everything in me not to cry, but I responded with, “I am proud of both of you!”

I know change can be difficult, but not all change is bad.  Everyone has an opinion on this matter, but it is a decision that we made prayerfully.  Circumstances may change and this option may not be available a little later, but for now,  William loves being around other children and that stimulates his senses in ways I could not do at home.  I have faith in the Hill Farm staff, because if I didn’t, William wouldn’t be going.  That’s for sure.  But with that being said, it is always a leap of faith to put your child in someone else’s care, especially a non-verbal child who is going blind in addition to other health issues.    It would be easy for me to keep him at home, but if I listen to my heart and do what I think is in William’s best interest not mine, school is where he needs to be.  

So, I ask for you to be in prayer for me.  William will be fine, and I have no doubt that he will capture the heart of everyone he meets.  It’s just hard for me to let go and trust another set of individuals with my son.

I have been putting off writing this blog until I could gather my thoughts.

William has been maintaining this past week which is amazing. We went a full week to school, which is great because it has been quite some time since we were able to go all week without sickness or doctor appointments. We have had a few non-stable weeks, and we are still struggling with seizures and playing with medications.

With this disease, your child can wake up without a skill that they had the day before. It is because of waste build up in the brain cells. That is why I cherish all of William’s smiles. Some children lose the ability to smile while others keep it until the end. Every day and every smile are cherished!

It also makes managing medicines and seizures extremely hard because, with this progressive disease, different areas of the brain are constantly being affected.  Medicine that worked last week will not be as effective now because the brain chemistry has changed. There is no rest in this area. William’s brain is constantly changing, and mine is always working trying to figure out what is going on, why this isn’t working, what changes we could make, and so on.  I am very grateful for my mom who is my sounding board, listening to me go over every scenario sometimes multiple times, knowing she has no clue what I am talking about but is just there to listen.

This might be a controversial topic, but I have had trouble lately understanding why God would want William to suffer so much.  I didn’t think I was angry with God, but I was, and in turn, I distanced myself from him. These were very hard weeks for me; without Him, darkness entered, and honestly, it was hard to function. It was when I reached my lowest that I cried out, “Why would you want this?” I felt his presence answer me, “Braley, I am hurting just as much as you are.  I didn’t want this to happen.  I have lost a son as well and weep for you. I am here to comfort you, please come to me.” This has helped me tremendously. There is darkness and suffering in this world, but we have a loving God that cares for us.

It warms my soul to know that others are reaching out and are concerned about our family. You will never know how much it means to someone until you are in a similar situation. God uses people to show us He cares; for that I am sure.

God bless,

Braley

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.

November has really been a trying month.  William IS sleeping better these days, and that’s a blessing.

 

William now has a g-tube (gastric tube).  He is still eating, but is getting his medications and extra nutrients through the tube.  It sure is convenient.  He underwent surgery on Monday and was out of the hospital Tuesday afternoon.  The doctor cleared us to travel “over the mountain and through the woods to Grandmother’s house” Wednesday.  William slept almost the entire time we were in Mississippi.  As he wasn’t getting up much, he became really congested.  We were concerned it might turn into pneumonia, but once he started sitting up, the congestion got better. 

The doctors told us that if he was weak going into the surgery, it would take longer to get back to normal afterwards.  I would say William was a little weak before surgery.  He had a virus which lasted 1 ½ weeks, then an ear infection, and was really shaky which we thought was increasing seizures.  He is getting better slowly.  He went to school today for the first time in about 2 weeks.  He is awake more and is smiling more and more.  His primary care physician gave him an all clear on his ear and the congestion, but he is still not walking.  The longer he is off his feet, the weaker his legs are getting.  We need to make sure he is feeling good for his upcoming trip to Florida.

William has been approved by Make a Wish, and our family will be going to Orlando in December.  We will be visiting Disney World, Sea World, Universal Studios and staying at Give Kids the World Village (http://www.gktw.org/).  I know we are going to have fun, but just getting everything together is going to be a job.  It will be William’s first flight, and I pray we won’t have a 5+ hour layover! 

In January, we will head back to St. Louis for another 48-hour videoed EEG.  We are hoping to get his seizures under control.  But, in the meantime, we will be trying different drugs and combinations.  Hopefully, something will work better than the others.

God has a plan and we are along for the ride. 

(Just an unrelated tidbit, William has been great at the doctor's offices and hospital lately.  He doesn't cry or throw a fit, etc.  He let the nurse take out his stiches and didn't even whimper.  This is a big departure from his behavior a couple of months ago.  I'm not sure if this is bad or good, but it sure is less stressful!)

 For the past week, William has been a little more unstable than usual, and it’s apparent that his seizure activity is increasing.  This was expected because, over time, his body becomes adjusted to one of his current medications.  His St. Louis neurologist prescribed a new drug that has been approved in the U.S. since January.  Evidently, the dosage prescribed was too high for him because it really knocked him for a loop.  Trying to get the right combinations and amounts is really tricky, especially on the phone, and William has been having a hard time adjusting (his parents too!).   He is doing better, we think, but still there is more tweaking to do.

William was scheduled for surgery today, but it was postponed because the surgeon had a family emergency.  We are getting a Mic-Key button, a low profile skin-level feeding tube inserted.   It’s mainly for active lifestyles allowing children to be more mobile while ensuring their nutritional health.  At this point, William can eat and swallow, but he isn’t getting the nutrition or fluids he needs.  With the tube, he will get what he needs in addition to eating what he wants.  Hopefully, he will gain some weight and strength.  The surgery is rescheduled for Monday, November 19. 

It’s funny how things work out.  William woke up today with sinus drainage and acted like he felt bad.  His primary care doctor diagnosed an ear infection and gave him antibiotics.  Now I’m glad he didn’t have surgery today.  Hopefully, he will be better by next week. 

All in all, this has been a week.  It’s been hard to see William not being able to walk at all on his own, but not wanting to slow down.  In that state, he requires 100% attention.   I’m ready for “normal,” whatever that is anymore.

Your concern, thoughts and prayers really do help.  Thank you!