The Blessing in the Thorn 

by James, posted in Stuggles

Here we are, the day before Thanksgiving. I was not planning on writing a post today, but we have a lot to be thankful for. 

First and foremost, we have all four boys with us. This may seem like a strange statement until you face a childhood thorn.

Many kids with epilepsy do not live to see six. so every Thanksgiving is a reason to celebrate.

That fact is forever in the back of my mind. Today is extra hard. 

All I can do is trust God and rejoice in many, many good things which come from life with Super D.
So tomorrow we will eat too much and then indulge in the American consumerism mentality Friday. All the while thanking God for another year with Super D.

What are you thankful for? 

Finding A Voice

by James, posted in Stuggles, Victories

The time between major seizures has been holding quite steady lately. We routinely make it 3-6 days between major seizures now. This has been a major blessing. However, it is not without some side effects.

As his mind clears up we see Super D get a little more chaotic. I often tell people it is likely scary for him. For us, it is a little unnerving when our mind gets cloudy. For Daniel, he has lived with a cloudy mind for most, if not all, of his life. So now, things are being turned upside down.

He now has to learn how to deal with it.

This clearing has brought on a lot of speech. He is starting to put words together. Just the other day I heard him tell someone “Thank You”. It was amazing!

There is downside to his new found voice.

He has began to scream. Not just any scream. This is a high pitched, ear piercing, blood curdling scream. It is the kind of scream that hits such a high note my brain cuts the sound off. For anyone who has fired a high powered rifle without hearing protection, you know what I am talking about. In the car it is brutal.

It also scares the crap out of bystanders. He almost gave a lady a heart attach Saturday when we were out. You should have seen the cop looking as we walked down the street behind him.

The scream is bothersome, but I will take it any day over no voice at all.

Some of the Pharisees in the crowd said to Jesus, “Teacher, rebuke your disciples!” “I tell you,” he replied, “if they keep quiet, the stones will cry out.” – Luke 19:39-40

The Fear of Water

by James, posted in Victories

Shortly after Super D turned two, we took a trip to a local indoor water park or Josh’s birthday. We thought this would be a great weekend trip. Daniel loved water just as much as the other boys. How could this turn out bad?

But, alas, it did.

Daniel was extremely excited when we got there. He ran straight for the water. We decided to get a life vest for him. You know, safety first. He was not happy, but at that point we could halfway reason with him.

Then it happened. The giant bucket dumped thousands of gallons of water from twenty feet up. That was the end of the fun.

I do not know if it was the noise, the water, or the children screaming. Whatever it was, it absolutely terrified Daniel.

This set into motion a couple of years where we avoided water if at all possible. The fear of water was so overwhelming for Super D that when we started at the Britain Center he would not go into the therapy pool. When I tried to carry him in, he screamed and braced a leg against each side of the doorway.

The ladies at the Britain Center are absolutely amazing. Within a year, they not only had him going in the pool, but he was actually enjoying it. By the time he graduated, he was blowing bubbles in the water, putting his head under and even floating on his back some.

To this day, I still have no idea what the exactly caused the fear response. I am just thankful it is gone. That is, until he jumps into a pool on his own. (Yes, he did this last year!)

Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me. – Psalm 23:4

 

Halloween

by James, posted in Stuggles, Victories

Monday was Halloween and beggar’s night here in Leavenworth County. Halloween is bittersweet in our house. Josh decided years ago he was to old to trick or treat. So for several years it has been just Aaron.

We tried a few years ago to take Super D out. The Britain Center loaned us the Big Mac they used for Daniel. No, not the artery clogging sandwich from the clown restaurant. This Big Mac is a button. Imagine the easy button on steroids. The great feature of it is the ability to record a voice and play it back when the button is pressed. They worked hard with Daniel, getting him to press the button and wait for the candy.

Armed with his “voice” we set off. Our trick or treat adventure lasted three houses. See, for Super D, the only reason to go to someone’s door is to go inside. Every house we went to, he would push the button and then try to push into the house. In reality, I can not blame him. Darlene commented this year about what a strange tradition it is to dresBatDaniels kids up and send them out to beg for candy. In Daniel’s world, I imagine the whole event seemed extremely absurd.

This year, as we do every year, we bought Super D a costume. This year was different. This year he picked it out himself. We have him three choices; Batman, Superman and Spider-Man. He chose to be Batman.

Monday we got dressed and headed out. We did not take Daniel door to door, but he went with us. We stole the straw bale from Darlene’s fall decorations to use on our little hayride. Daniel rode on the trailer in his wheelchair. He seemed to enjoy it and did not show any interest to trick or treating.

Overall, it was a good night. We all had fun. Maybe one day Super D will get into this crazy tradition.

Be patient, then, brothers, until the Lord’s coming. See how the farmer waits for the land to yield its valuable crop and how patient he is or the autumn and spring rains. You too, be patient and stand firm, because the Lord’s coming is near. James 5:7-8

To Die For Mac and Cheese

by James, posted in Stuggles, Victories

The last few weeks have been very good for Super D. His personality his back and we are having fewer seizures. Last week he had a major seizure on Monday and then one again on Friday! That is huge for a little boy who typically has one or two major seizures a day. We have a good idea what has brought this about, but more on that another day.

We have stopped the ADD medicine, although not by choice. The insurance will not pay for the extended release medicine the doctor prescribed.

I would be fine with not giving Daniel any more medicine. However, we have a few safety issues.

He does not understand danger. His ability to reason is not what a normal child’s is. The ability to understand cause and effect does not appear to exist. This seems to be particularly need bad when it comes to heat.

Sunday he burnt himself. He reached into the hot oven for a handful of homemade mac and cheese. Now, I don’t blame him, my homemade mac and cheese is good, but not risk bodily harm good! The scariest part of this was his reaction. He did not cry and scream. We did not know he had burnt himself until later when we noticed the blisters.

I hate to put him on more medicine which could destroy his personality again, but I can not have him getting hurt.

We are fairly certain a lot of this behavior is due to the depakote. We will be taking Super D off that medicine in the next month. I am hopeful some of this behavior will stop when it is gone.

In the meantime, we watch him like a hawk and enjoy having Daniel back.

I have seen the burden God has laid on the human race. He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end. Ecclesiastes 3:10-11

Return Of The Personality

by James, posted in Victories

After a long few weeks, we have had a bit of a breakthrough. Over the last week, Super D has only had two big seizures! That is huge progress. I wish I could say for sure what it is that caused this good turn.

The biggest win of the last week came on Saturday afternoon. We made the decision to skip Daniel’s ADD medicine. We really did not know what would happen, but we were 20161015_143957running low, so why not? This simple decision was a huge blessing.

Daniel started the day off a little chaotic. But, that is to be expected without the medicine. The real blessing came later in the day. Josh had a soccer game that afternoon. Daniel does not really enjoy sitting at the games, but this time was different. He was being very silly. He sat in his chair and poked me. Then, when I tickled him, he smiled and even had a little laugh!

Now, that may not seem like such a big deal. For Super D, it is huge. The medicine has destroyed his personality. He rarely smiles and I have not heard him laugh in two months. For a brief time, I had my little boy back.

Of course, the constant attempts to gag himself also returned. So, we went back to the medicine Sunday.

We are in the process of switching the ADD medicine. Hopefully we will be able to control the impulsivity, yet still retain his personality.

Days like Saturday give us hope. They provide a physical reminder that God is good and has not forsaken us. Days like that recharge the batteries, so to speak, making it easier to press on.

One day, we will have him back for good. Until then, we will persevere.

Don’t be deceived, my dear brothers and sisters. Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. He chose to give us birth through the word of truth, that we might be a kind of first fruits of all he created. – James 1:16-18

A Long Two Weeks

by James, posted in Stuggles

The last two weeks have been a little rough for Super D. We have had quite a few seizures recently. Friday, a week and a half ago, was really rough. Daniel had seven seizures in a matter of a few hours.

The next day was quite calm. Sunday, however, was a rough day. Daniel had his first colonic – tonic, or Grand Maul, seizure.

He ended up getting sic this past weekend. It could have been the illness that brought the increase in seizures. Or maybe it was the changing weather here in Kansas. Or it could have simply been the up and down cycle we have seen from the beginning. Or it could have been…

There is the problem. We never know what brings on a bad day or week. Being nonverbal, Super D can not tell us when he feels bad or what is wrong. All we can do is guess at what is going on.

We know some triggers. Constipation is the first thing we assume. It is the only thing we can guarantee will cause an increase in seizures. Sickness always brings some on. Lack of sleep is another.

This time we are trying to be more scientific. The neurologist has order some blood work to test Daniel’s Depakote levels. Will it tell us anything? Doubtful. But, it is better than guessing and wondering.

My son, if you accept my words and store up my commands within you, turning your ear to wisdom and applying your heart to understanding — indeed, if you call out for insight and cry aloud for understanding, and if you look for it as for silver and search for it as for hidden treasure, then you will understand the fear of the Lord and find the knowledge of God. For the Lord gives wisdom; from his mouth come knowledge and understanding. – Proverbs 2:1-6

The Drug Challenge

by James, posted in Stuggles

Super D is down to three different kinds of medicine.  Getting the needed medication multiple times a day has become a challenge in itself.

Daniel is on a medicine called Depakote. Depakote is a nasty, nasty drug that tastes absolutely terrible. The solution was to give him an extended release tablet.

There was just one problem. Super D can not swallow pills. So we dissolve the midday dose and crush the morning and evening pills so we can mix them with his Onfi.

From our standpoint, now we not only have to carry multiple medicines everywhere we go, but we also have to remember to find water to dissolve a pill. This takes at least 30 minutes, but could take as much as an hour. It is amazing how inconsistent the dissolve rate is on generic medicine.

So, when we travel we take two liquid medicines, pills, something to crush the pills, a cup to mix medicine in, and several syringes. Daniel’s medicine take up a bag off it’s own.

We have gotten good at mixing medicine in parking lots. I have learned the dash of the vehicle is a nice warm place to dissolve pills. The biggest challenge is remembering to bring his midday meds if there is any chance we will be out when he needs them. Evening excursions are just as challenging. We have to decide, do we give him his medicine early, or do we wait.

Who knew three medicines would require so much work.

Blessed are those who find wisdom, those who gain understanding, or she is more profitable than silver and yields better returns than gold. – Proverbs 3:14-15

Tips and Tricks: Limiting the Wandering – Part Three

by James, posted in Tips and Tricks

This is the third post in our Limiting the Wandering series. Be sure to check out Part One and Part Two!

Leaving the house without us is a big problem for Super D. He is very independent, yet not very safety conscious. Teaching him to respect the boundary of the street is not going to happen. So, we have an issue to solve.

The janitor closet lock set works great for non-essential doors. But securing main exit doors is another problem. Having to find a key is not an option.

I am not thrilled with the solution we found, but it serves the purpose.

The solution we settled on was to install a sliding bolt on the exit doors. We placed it high enough it is not a temptation, but low enough everyone else can reach it. If he really tried, Super D could reach it. On the front door I drilled into the jamb. This causes the lock to bind slightly unless a person pushes on the door. On the back door, the latch portion of the bolt is used.

During the day, when Daniel is home, the bolt is locked. At night I unlock these sliding bolts and lock the deadbolt.

If we planned on staying in this house, or knew we would need a permanent solution, I would have installed electric deadbolts in both doors. With the keypad on the inside of the door, the door could be secured but still allow you to enter into the house when it is locked. Programing a simple code using the same number would allow a quick escape when needed. However, for our current situation, I did not want to drill additional holes in the exterior doors.

How do you keep you children who are prone to wander safe and secure when the great outdoors calls?

Accepting the Unacceptable

by James, posted in Stuggles

We had a pastor who liked to ask, “Do we want a God we can control, or one who is in control?” For Christians, the answer should be simple. We want a God who is in control. Or do we really? Do we really understand what it means to have a Divine Being in control of all aspects of our life? That is something every person has to struggle with in life. That question is, at least on the surface, essential to coming to Christ. I did not really understand this until after Daniel was diagnosed.

For those who do not believe as I do, bear with me. This is about our life with Super D.

The first few weeks after after we realized something was wrong are a little bit of a blur. There was an ER visit and an appointment with a very old school neurologist. It all came to a terrible conclusion one Friday afternoon in the EEG wing at Children’s Mercy here in Kansas City. What should have been a hour long EEG ended up taking three hours.

At the end of it all the neurologist came into the waiting room to tell us how bad things were. The doctor stood in the door way of the waiting room. “Your son has a rare and very serious form of epilepsy. We can give him one of these three medicines,” he told us. All I remember from his talk is one was safer, one would only work for a while, and the third could cause permanent vision loss. His next statement shook me to the core. “There is a high risk of death by seizure with his condition.” And with that he left the room.

Yes, those were his exact words. This is bad. It was bad enough he wanted to hospitalize Super D over the weekend, even though they would not start treatment until Monday.

Talk about a stellar bedside manner!

This is something no parent wants to face. It is not fair. In fact, it is straight up crap. But that is life. We are not promised a life of ease or one without trials. Man screwed that up thousands of years ago. 

But, every day is a little easier than the one before.

There are moments of panic and days when it is not easy. Bad seizure days bring the reality that we may outlive Daniel back into my mind. We went through a period where Super D would stop breathing during seizures. Every seizure left me wondering, is this the one? The rare occasions where Super D sleeps in make me nervous, afraid of what I might find.

This is not something you come to terms with overnight. I struggled with the idea I could outlive my child for close to two years before I came to terms with it.

That brings us back to my opening paragraph. See, I wanted a God who was in control, until it came to Daniel’s life. Then I wanted to be in control. I wanted to fix it. The parent in me said it can not be this way, there must be some other solution.

Only, it is not in my control. There is absolutely nothing I can do to change the outcome.

It was only through Divine intervention that I came to terms with it. One day the LORD reminded me “He is more my son than yours and I will take him when I want”. I’ll admit, I still struggle with it. Some days are harder than others. Stories where children die are always brutal.

Regardless of how we view it, this trial is not in vain. God is in control. He knew Super D before he was born. As a good father, I want what is best for my kids. God, as a good father, wants the same thing for us. He is walking through this with us and is actively working on our behalf. He lifts us up during the bad times and celebrates with us during the good times. 

We may not understand it, for we are not meant to understand everything. We have hope and hope, at times, is all there is. 

Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes?  Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?  Can any one of you by worrying add a single hour to your life? But seek first his kingdom and his righteousness, and all these things will be given to you as well.  Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. – Matthew 6:25‭-‬27‭, ‬33‭-‬34