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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!

The moment we admit our weakness and need for him God begins to move on our behalf by opening doors of hope. If we become fixated on our own feelings, then we are unable to comfort our children when they most need us. But, especially as Christians, we must get our eyes off of ourselves and onto God. Life’s sorrows and challenges always provide opportunities for us to grow and mature, not just emotionally, but spiritually as well.

John (9:3 2)   “Rabbi who sinned, this man or his parents, that he would be born blind? Jesus answered neither, but it was so that the works of God might be displayed in him.”

When we focus on Him instead of on our circumstances, He is glorified, and we are strengthened so we can endure the painful journey we have been called to bear. God has a plan for the adversity we face. He will carry us through this adversity or difficulty, and we do not have to be fearful. There are times that God will call on us to endure hardships beyond a point that we think is necessary or effective. He is the person who wants to accomplish in our lives. He calls us to trust him even if our circumstances do not make sense.

When Your Children Hurt

Charles Stanley



William is not a sickly child, but he got the virus that was going around last week and wouldn't eat or drink.  He had to get an IV at the hospital, but from there he recovered quickly.  He has had a "swallow test," and it showed he was swallowing normally - which was good.  However, he is a stubborn little bugger and will only eat and drink when it suits him.  You can't get it down him if he doesn't want it.

He finding life funny these days.  You just wonder what's going on in his head.  He will just be sitting down and will start laughing.  His laughter is very contagious and everyone laughs back.  You would think that was his motivation, but he finds things funny when he is alone too.  It's so good to hear him laugh! 

William attends ACCESS in Little Rock.  The facility and staff are excellent, and he LOVES it.   We are lucky to have him there.  For a child who doesn't talk, he sure can communicate.  He lets his wishes be known!  During the last week, he started climbing on things and taking an interest in things like he hasn't done in months.  Once he climbs up, he can't get down, so you have to stay diligent to keep him protected.

Just about time you think you have everything worked out, things change.  Just part of the game I guess.  His meds are always changing and being tweeked.  Seems like we are giving him something all the time.  As long the meds control his symptoms, we are OK.

An update on William and our family:

William is maintaining these days which is good news. Currently, his vision seems the worst impacted which we are getting tested later this month. Funny how things change: I am not concerned with William gaining skills anymore. Now I am concentrated on his not losing the skills he currently does have. We can still walk for which I am grateful.  He is unsteady and falls quite easily but still walks and usually wants to hold your hand when you are outside of the home. I am not sure if it is his vision, balance or both that cause him to feel unsure but it is a change from the child who would escape from the house every chance he got.

There are a lot of things swirling around this head of mine. God’s will has been a big one. I do not believe that God wishes evil to occur. God does not will the death of innocent children, but in a world where suffering and tragedy will occur, He uses these things when they are placed in His hands. “All things work together for good for those who love God, who are called according to his purpose.” (Romans 8:28)

God not only promises to walk with us, but God promises to walk through us to come to the aid of others in need. God uses people to accomplish his goal. We are his hands and feet. If we listen to the nudges of God’s spirit and pay attention, we will find others being used by God to answer our prayers. Maybe we will also become aware of the ways God seeks to use us to answer the prayers of others. The key is paying attention and listening. I pray that I will be aware of things and that this PAIN will not be wasted but will glorify his name.

Continuing with Batten

We enjoyed a family vacation last month.   It was William's first trip to the beach, and he enjoyed it.

The results of the his St. Louis eye exam (ERG) indicated moderate rod and cone dystrophy, a part of the Batten disorder. We were hoping that the sight loss would be mild, but I suppose moderate is better than severe.   

William has been accepted by Make a Wish Foundation for a trip to Disney World. We will be visited soon by the Little Rock representative.

Also, we are facing having to make a major decision, and need peace that we are making the “right” choice. We need your prayers! Thanks!!