Category: Victories

The State of the Union

by James, posted in Victories

Things have finally slowed down here. I finished my spring classes and decided not to take a summer class. I am going to enjoy the calm for the next week. Super D will be finished with Kindergarten on May 17th. Josh and Aaron will be out on the 26th. We will have a couple weeks before the extended school year starts for Daniel.

Over the last few months we have had some big changes for Super D. We had another EEG done at the end of March. The neurologist said it looked different than the one done a year before at the Cleveland Clinic, but the same as the last one we had done at KU Med. Basically, it didn’t tell us a thing. That is what we expected though. His EEG results have been pretty consistent.

We did start him on a new medicine. He has been on Felbamate for a month now. This is a drug none of the other doctors had mentioned. It is also the second medicine we have tried where we were required to sign a waiver before starting the meds.

When this medicine was in the trial stages, they suddenly had 18 people out of the 100,000 in the trial die. This prompted the lawyers to require a waiver, and likely why we have not heard of it before. Here’s the thing, most of the people who died were middle aged women with autoimmune disorder. The youngest death was 13. It is a nasty medicine, but that is where we are at with his treatment.

Now for the good news.

The Felbamate seems to be working! We are cautiously optimistic at this point. We have seen other medicine and supplements work at first, but then fail after a period of time. So far, we have been on this medicine about 5 weeks and we have not seen a major seizure in 5 or 6 days. Even the periods of “activity” that often lead to a seizure have been reduced dramatically.

I got to hear Daniel call me dada Saturday. It has been years sense the last time I heard that.

Hopefully this is the divine intervention we have been seeking.

For our heart is glad in him, because we trust in his holy name. Let your steadfast love, O Lord, be upon us, even as we hope in you. – Psalm 33:21-22

70 and Sunny

by James, posted in Victories

Last weekend was absolutely beautiful here in Kansas City. Darlene and Ben had been sick last week, and poor Super D was still not himself. So with the temperature around 70 Saturday, we decided to take advantage of it.

We loaded everyone up and headed out. What started as a simple trip to get some parts and groceries turned into an all day excursion. We ended up spending some time at the Mahaffie Stagecoach Stop and Farm in Olathe.

Super D was not really into it. He does not understand the history or seem to enjoy the exhibits. He watched the animals a little. As we were leaving, we let him out of the wheelchair to run a bit. He headed straight for the animal pens, but quickly took off in his normal game. For him, it is more fun to run from Dad.

This is a normal outing for the family. It makes going out a challenge, but we still do it. Life for many years has been all about Daniel, no matter how hard we try no to make it that way. And, as much as I hate to admit this, it is taking it’s toll on everyone.

So when days like Saturday pop up, we take them. Daniel might not have enjoyed the day, but the other boys certainly did. Aaron loves animals, so this was right up his alley. Ben was happy just to be outside and run. Even Josh seemed to enjoy it.

For me, it was a great day. Even though we have to adjust our trips slightly to accommodate Super D, it was a return to a certain degree of normal. It was a time to enjoy my family. Leaving Mahaffie, I was struck with the realization of how blessed I really am.

Sunday only strengthened this realization. During the prayer request time at church, Daniel was asked if he had any prayer requests. He said Dad. Sometimes that little boy surprises me.

We take things day by day, enjoying the good days like Saturday, struggling through the bad, but always thankful for the blessings we have.

Rejoice in the Lord always. I will say it again: Rejoice! – Philippians 4:4

Five Years

by James, posted in Stuggles, Victories

It was five years ago this week our great adventure that is Life with Super D began.

Yesterday a memory popped up in Facebook reminding me of that week. Five years ago we were visiting with neurologists and having numerous test done. Five years ago I posted this on Facebook:

“More tests today and another stay in the hospital tonight. The doc is sure it is epilepsy, but it is treatable”

I look back on this simple statement and thank God I did not know then what I know now. Five years ago this was a bump in the road, one we could throw some medicine at and everything would be back to normal. Little did we know fire years later we would still be attempting to treat something that is not treatable, or at least not yet. The go to seizure treatments did not work, so we moved on to things which had a greater risk of side affects. Still no treatment works for an extended period of time. Surgery is not an option as the seizures are not confined to one part of the brain. A neuro stimulator may work, but there are chances for serious complications.

Until we find the key to controlling Super D’s seizures, we will celebrate the good days and mourn the .facebook_1485954712572bad. Either way we will praise God.

Five years ago today I had posted this picture, taken in a hospital room at Children’s Mercy here in Kansas City. The caption said “SMILES ARE BACK!!!”. Five years ago we experienced a roller coaster of emotions, from the sorrow and pain of hearing Daniel has epilepsy to the joy of seeing something a simple as a smile. That is how the last five years have been. Sorrow and pain followed by great joy. Nothing on this earth says everything will be ok quicker than a smile from this sweet angel or a big hug from my super hero.

Through it all we have been forced to grow. This type of thing is not something which can be ignored. It is also not something mankind is able to endured alone. The last five years have tested our faith. God has continually given us more than we can handle so we could learn trust and to give our struggles over to Him. It is through those test and trials that we have grown stronger and closer to God. We are not special people. We are no different than anyone else. God has blessed us differently than others.

Yes, I see the last five years as a blessing. I have seen God do things and move in ways many will never have the chance to. That is a blessing. I also see the world differently than I did five years ago. Don’t get me wrong, if I had my way Daniel would not suffer for God to be glorified. My ways are sinful and taken from a finite view of things. God sees the beginning from the end and, even though it does not make sense to me, He has a great work that required the last five years and the years to come. Regardless of the outcome, He is in control, not me. There is great freedom that comes from that fact.

I remain confident of this: I will see the goodness of the Lord in the land of the living. Wait for the Lord; be strong and take heart and wait for the Lord. – Psalm 27:13-14

Christmas with Super D

by James, posted in Victories

Christmas has once again come and gone. It is always a struggle in our house. What do you get a child who does not play with toys like a “normal” kid? We have discussed not getting him anything and I have thought about getting practical things like clothes. However, this year like all those past, we did our best to find toys he might like.

But why wouldn’t we? To do any less would send a message we do not want to send to him.

We are still trying to figure out what to do with his gifts. The idea of tearing paper is extremely offensive for Daniel. He will not do it, no matter how hard we try. This year he even refused to stick his hand in a stocking.

Part of this was, I believe, was due to the rough start we had Christmas morning. He had a seizure before we got up and then a second big one while Aaron was passing out presents. This, combined with the overwhelming nature of opening gifts and the absolute chaos in the house, was too much for poor Daniel.

This year was a little different than others. As the day went on he played with a few things, especially Ben’s toys. We are thrilled to see progress like this.

On a side note, Super D’s progress left me with one of the best birthday presents ever. I asked him for a hug. He looked me in the eyes, threw his arms open and gave me the biggest hug I have gotten from him in some time.

But let all who take refuge in you be glad; let them ever sing for joy. Spread your protection over them, that those who love your name may rejoice in you. – Psalm 5:11

The Kindness of a Stranger

by James, posted in Victories

Christmas time means shopping, and shopping means lots and lots of people. This year we have done less online and more in stores, with Super D in tow. With all the people, this can be challenging to say the least. Often the wheelchair will not fit down crowded isles, and if it does, the hands and feet never stop moving. People tend to get cranky when he pulls their carts sideways as they go by.

Our last big shopping trip went about the same. We set out with Super D and Baby B to pick up a couple last minute items. What should have been a three hour trip ended up being close to five. Days like that are hard on the little ones, especially Daniel.

After the second stop, we slipped into Chick-Fil-A for lunch. Super D was struggling by then. Lunch was our normal outing event, with seizure activity followed by hyperactivity. Throw in a little throwing of food and some attempting to bolt and you have a normal restaurant experience for our family.

I normally watch people, this day was no different. However, it was different in the fact that no one was paying attention to Super D. Or at least I thought no one was.

As we were finishing up, a young lady in her 20’s appeared at our table. She had been sitting close by. To my surprise, she must have been watching us. She stopped to tell me one thing.

“Your doing a good job.”

By that time I was getting frustrated. God knew what I needed and sent this stranger to tell me.

Now, a lot of people tell me things like this. For it to come from a complete stranger is something entirely different.

I do not know who the young woman was. She will never know how much the simple comment meant to me. In a world filled with so much anger and hate, five simple words can make a huge difference.

Next time you see a family struggling with a special needs child, give in to the urge to encourage them. A simple word of kindness can mean so much to a stranger.

Let your gentleness be evident to all. The Lord is near. – Philippians 4:5

The Look of Knowledge

by James, posted in Victories

I took Super D with me Saturday to a farm auction. I hated to take him along, but Darlene was going shopping with the other boys, so Daniel tagged along with me. Aside from being a little chilly, it was a good day. Daniel really did well considering he spent the day in his wheelchair.

For me, outings with Daniel can be somewhat frustrating. Not because of him, but because of others. People like to stare and if he gets to hollering, they like to give disapproving looks. This is worse if it scares them, which, honestly, is sometimes quite funny for me.

I have often told myself I should take advantage of these stares. I should go introduce Daniel and explain what we are facing and the hope we have. What better way to share the Gospel than through this wonderful little boy.

Saturday, unfortunately, I was not in the mood to deal with people. Now that is not an excuse. My mood should not dictate if I visit with strangers, but it does.

I kick myself that I missed a great opportunity to visit with a young father and his two boys. The boys were watching Daniel, and imitating his excitement and flapping. I don’t believe these boys were being mean, I think they thought it was a game.

Their father was horrified. He tried to shut them down without looking. You could see it was a very awkward moment for him.

Perhaps I would have made it worse if I had talked to them. However, I will never know because I didn’t take the time to share Super D’s story.

I did have a conversation with a gentleman Saturday. Some people stare out of disgust and others out of curiosity. This gentleman watched Daniel because he knew. I can always tell those who are walking the same path we are. It might be a parent or, in this case, a grandparent. They always have a different look. It is one of compassion and grace.

This gentleman has a nine year old grandson who is autistic. I had a chance to have a good conversation with a concerned, loving grandfather. It is in those moments where we can all find strength. For me, it was the compassion of a stranger who is on the same journey as us. For him, I believe it was a chance to share a little hope they have found as his grandson has begun to speak.

Arrogant foes are attacking me, O God; ruthless people are trying to kill me—they have no regard for you.
But you, Lord, are a compassionate and gracious God, slow to anger, abounding in love and faithfulness.
Turn to me and have mercy on me; show your strength in behalf of your servant – Psalm 86: 14-16

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