A good day for KC!

by James, posted in Victories

Darlene and I had an opportunity to attend a groundbreaking ceremony yesterday. This was not ordinary ceremony. This ceremony opens the door more families with special needs to get the help they so desperately need. Yesterday Shawnee Mission Medical Center broke ground on the new B.E. Smith Children’s Pavilion.

This new facility will be the home to the Lee Ann Britain Infant Development Center. It will replace the aging former school they currently reside in. For those not familiar with the work of the Britain IDC, they provide therapies for children with special needs. They currently serve 200 families a week between the preschool, pathways autism program and the various therapy’s they offer. This new facility should provide the opportunity to serve more families in a state of the art facility.

For me, one of the most powerful times was when Doug Smith, whose father the center is named for, stood to speak. He had a short speech, but one that carried a powerful message. He took the crowd to Exodus 3: 1-5.

Meanwhile, Moses was shepherding the flock of his father-in-law Jethro, the priest of Midian. He led the flock to the far side of the wilderness and came to Horeb, the mountain of God. Then the angel of the Lord appeared to him in a flame of fire within a bush. As Moses looked, he saw that the bush was on fire but was not consumed. So Moses thought, “I must go over and look at this remarkable sight. Why isn’t the bush burning up?” When the Lord saw that he had gone over to look, God called out to him from the bush, “Moses, Moses!” “Here I am,” he answered. “Do not come closer,” he said. “Remove the sandals from your feet, for the place where you are standing is holy ground.” (Christian Standard Bible)

Mr. Smith told the crowd they were standing on holy ground. That really stuck with me. See, this was not simply another groundbreaking ceremony. This was a God moment. For me, it was a visual reminder that God is moving in mighty ways in the special needs community here in KC. A good vision combined with a hospital and donor who desire to honor God produced an amazing outpouring of love and support.

It caused me to stop and consider where God is calling me. A great dream of mine was rekindled yesterday. The dream had somewhat faded from the doubt the enemy casts. I had forgotten how big God is. Yesterday, He reminded me.

We have a great work still to do when it comes to reaching the special needs community with the gospel of Jesus Christ. It will not be easy or quick, but it is possible. May God use us in a mighty way.

The best candlestick maker Kansas has ever seen!

by James, posted in Victories

We had a first last week. We got to see Super D in his first music program! The first grade classes at Tonganoxie Elementary presented “Three of a Kind”. Daniel got to play the candlestick maker.

Daniel’s para had asked me if we were interested in having him participate. I was very interested, but somewhat apprehensive. After all, crowds tend to be overwhelming for him. I had the chance to meet with the music teacher beforehand. She had an excellent plan.

In order to get Super D to his place on stage, she assigned two boys to hold his hands and lead him to the “boat” for their part of the program. This two boys took their job very seriously, making sure Daniel go to where he needed to be and back safely. After his part was done, he did very well sitting in the chair they had provided for him.

We discovered a new talent during the show. Daniel has the ability to blow raspberries on his hand to the tune of a song There is nothing like hearing a loud fart sound coming from the stage in time with the song.

I would have been more proud if he would have busted it out in his armpit, but hey, we have to have goals.

It was a wonderful evening. I cannot say enough about the excellent staff at the Tonganoxie Elementary. They have been so good to use over the last two years. Mrs. Haney went above and beyond, in my opinion, to see that Daniel was included. All the staff there has been so good about that.

It was an emotional night for me. I’m tearing up while typing this. I never thought I would get to see Daniel in a school program. That was one of the many dreams that died for me years ago. But thanks to a first class school staff that really cares about the kids, that dream was brought back to life.

This was also another view into the changing world. See, Daniel is just one of the kids. Those two boys did not fear their job, they seemed honored by it. Daniel’s whole class loves him. When he is gone, they ask about him. They do not see my boy as an outsider. He is simply Daniel, one of the class. That warms my heart.

Change is possible in this world, if we would only take our cues from a first grade class.

Hello old friend

by James, posted in Uncategorized

It has been quite a while sense my last post. Life has gotten very busy here. Four boys will do that to a person! I really, really want to get back to writing on a regular basis, but I do not think it will happen. At least not on the set schedule I had previously. This will be a season of randomness, as I attempt to find some balance between all that competes for my my attention.

Baby B keeps me running most days now. I forgot what it was like to have a developmentally normal two year old in the house! This is my first go at the toddler years from a full time parent standpoint. I understand now why Darlene would often give me the “I’m done” look when I came home.

Super D has had a rough winter. The Felbamate had given us 5 months seizure free, then the flu season hit. Someone was sick in this house almost every week for the last four months. Baby B had influenza A, so in an attempt to keep Super D healthy, we got him a preventive dose of Tamiflu. We should have chanced the flu. It made him sick and we are pretty sure he was having hallucinations from it. The viruses took their toll on his seizure free record. For the first time sense being diagnosed, I thought I was going to have to use the rescue medicine. He had two seizures that lasted over 3 1/2 minutes. One was at school, one here at home. It was also the first time in years he has stopped breathing during a seizure. Thankfully that happened here when it was just me. It would have pushed the school nurse over the edge.

He is finally back on the mend. The last couple weeks have been good, other than the spring fever that is filling the house. I think Daniel and I have it the worst.

There are big things to come this year. Stay tuned!

Tips and Tricks: Freedom from the chair

by James, posted in Tips and Tricks

Going out in public is difficult for Daniel. He often gets overwhelmed with the people and the noise. When this happens, he tends to shut down and either run or flop down on the ground. In order to combat this, we got him a wheelchair last year. You can read about that in the post Tips and Tricks: Managing Crowds.

This has been an excellent way for us to manage everyday life and still do things the other boys want to do. Yet there are times when the wheelchair limits are ability to do and see things. In these cases, we would divide and conquer.

This method is manageable most of the time. We realized this would be a problem when we planned our vacation to Colorado Springs this year. We wanted to do several things that required Daniel to walk, and neither of us wanted to stay behind. Fortunately, we found Child Harnesses by Elaine, at www.childharness.ca. (This may sound like an commercial, but I love the product that much!)

I was not sure about the harness thing at first. It is a little strange to put your child in a harness. However, it was one of the best purchases we have ever made in terms of improving our quality of life.dscn1352.jpg

The harness is a simple strap setup that goes over the shoulders. There are two straps that wrap around under the arms and across the chest. I spent the extra money and had Elaine sew a handle on the back and put the two handed buckles on the harness. I also ordered two crotch straps and the parent to child tether. All total, with the upgrades, including shipping from Canada, the harness cost me $178.00.

This may seem like a lot, but it is a small price to pay for the piece of mind and the freedom we got. We 20170804_101511.jpgwere able to hike and take the Mollie Kathleen gold mine tour, which took us 1,000 feet underground. Both of these activities would not have been possible without the harness. With the parent to child tether on, Daniel can not get more than two feet from me. When he would try to flop down, instead of me attempting to manhandle him, I could grab the built in handle and lift him up. The combination of the crotch straps and strap under the arms make it uncomfortable enough he does not want to throw himself down. (The handle is not really intended for that purpose, but that is how I do it.)

If you have a child with special needs, or any child for that matter, that is prone to wander, one of Elaine’s harnesses can restore some freedom to life.

Have another way to keep your child safe in public? We would love to hear about it in the comments below. Please share this with other families.

Oral stemming and dental hygiene

by James, posted in Tips and Tricks, Victories

I took three of the four boys to the dentist a couple weeks ago. Trips to the dentist can be a challenge for any of the kids. We never know what to expect with Daniel.

I am usually prepared for the worst. Most of the time that comes from Josh and Aaron. They are both at the age where brushing teeth is not something they remember and when they do, the efforts are minimal. To make matters worse, Josh has braces. Our last orthodontist trip ended with me having a visit with the hygienist because he was not brushing well. The dentist visit ended with a similar scolding.

Super D is the wild card. So far he has done very well, aside from trying to bite fingers when she was attempting to get the x-rays. We managed to get pictures of the front teeth, but the backs were not happening. I don’t blame him, having that sensor shoved into the back of your throat is not fun for anyone.

Well, I take that back. I ran into a friend there with her two girls. The youngest was so excited to tell me how she was going to get x-rays!

Dental hygiene is another challenging area for Daniel. I’ll admit, he often only gets his teeth brushed once a week. We ended up buying him some DenTrust three sided toothbrushes. These are wonderful things for children with oral sensory issues. Daniel will still bite down on them, but we can usually get all the teeth brushed. The three sided design means one pass covers every surface.

He does better each time we go. This visit, he allowed them to brush his teeth and floss them. Letting the dentist examine his teeth was not as popular. The best part, listening to him giggle as the toothbrush tickled his gums.

The dentist asked if he had oral sensory issues. I expected her to tell me he had broken or chipped a tooth. Fortunately, this was not the case. She told me the oral sensory seeking actually helps keep his teeth healthy. The constant chewing and saliva clean plaque off the teeth and wash it away. Hopefully he continues to be blessed with good teeth.

The next checkup, Baby B gets his teeth check too. He loves to imitate Super D. Hopefully he will follow in Daniel’s footsteps when it comes to dental visits.

Lord, our Lord, how majestic is your name in all the earth! You have set your glory in the heavens. Through the praise of children and infants you have established a stronghold against your enemies, to silence the foe and the avenger. – Psalm 8:2

Divine intervention

by James, posted in Victories

The last time I wrote a blog post, I promised to get back into the swing of things. Well, life happened. Or maybe I should say I just got lazy! Either way, I have not written gotten back into the habit of posting every few weeks.

The last post, State of the Union, mentioned we had started a new medicine and had gone 5-6 days without a seizure. Well, now it has been about two months we have been on the Felbamate. We went 30 days without a seizure. When Super D finally had one last week, it was minor and only lasted 10-15 seconds. This is a huge blessing. To go from at least 3 big seizures a day to one every month has made such a big difference.

For the first time in years, Daniel has called us momma and dada. He is much more alert and responsive. We are seeing less behavior issues. He is beginning to follow simple one step commands again.

In the last week he has gotten all his shapes right at school. His IEP goal was 80%, if I remember correctly. 100% is not out of the question now.

Smiles and laughter are the norm now in our house. For so many years we longed to see the sparkle in his eyes again.

It is easy to take developmental milestones and normal child behavior for granted until it is not there.

Did we find the miracle drug? I don’t’ think so, but it is a miracle. I had settled in to the idea that it was not God’s will to heal him and any seizure control was going to be divine intervention. That is what we have experienced the last month.

I have a few ideas why God chose to wait this long to bring some seizure control to Daniel, but I do not know the exact reason. I am thankful for the wisdom he has provided over the last five years and the relieve Super D has now.

Does this mean he will be seizure free one day? I don’t know and I honestly do not want to know. I’m not sure I could handle knowing exactly what God has in store for the years to come.

Regardless of what is to come, we will rejoice in His grace and mercy, even if the outcome is not what I want or desire.

God is good, full of grace and mercy, even when things do not go as we want. He sees the beginning from the end, where I only see the here and now. What a great comfort it

The eyes of the Lord are everywhere, keeping watch on the wicked and the good. Proverbs 15:3

is to know Him.

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

Update

by James, posted in Uncategorized

So, it has been a while sense my last blog post. Things have been crazy here. I decided to take two classes the first eight weeks this semester and one the second eight weeks. This left very little free time. I have read seven books so far this year for school and am working on number eight. With the added school work, blogging has gone by the wayside. 

I planned on writing a proper post today, but life happened. I hope to be back on track in the future. 

Stay tuned, there is more life with Super D to come!

Dangerous Regression

by James, posted in Stuggles

It has been rough around here the last few months. We cannot seem to shake the sickness. On top of that, Super D has had very few good days. He has been regressing for several months now. I didn’t realize how bad it was until last week.

Wednesday morning started like most Wednesday mornings do. I was out of the house by 6:10, headed for the Men’s bible study at church. Darlene showed up at 7:30 to drop Baby B off on her way to work, and then I headed home because Aaron was sick again. An hour later I got a text from Daniel’s teacher.

That morning Darlene had cooked sausage for the boys. Daniel couldn’t wait and attempted to steal a piece while it was cooking. Darlene didn’t think he had gotten burnt and didn’t see any signs of it.

Only, he had burnt himself on the pan.

Unfortunately, this is not the first time we have had issues like this. Super D has lightning fast reflexes. The last time he got burnt, he reached into the oven to sample the casserole I was checking on. I had barely opened the oven door when I saw a little hand dart in. He wasn’t even in the kitchen when I started to open the door, I made sure of that.

Last week’s incident made me realize how far Super D has regressed in the last 6 months. There was a time when we could tell him something was hot and he would stop, give an approximate sign for hot and then move away. Not anymore.

It is a symptom of a much bigger issue. Suddenly, all cause and effect reasoning seems to be gone. He does not appear to understand the simple though process of “I did this and it hurt, so I shouldn’t do it again”. He will do the same things over and over.

It is aggravated by the fact that he does not seem to feel pain. If he does feel it, his pain threshold is so high he is seriously hurt before it registers. If I touch a hot pan, my brain pulls the hand away quick enough to only leave a little redness. I’m afraid a hot pan would end in blisters for Super D. As quick as he is to grab things, the brain is twice as slow to register pain, if it does at all.

It is a scary thing. It is nearly impossible to watch him every second of the day with three other boys in the house. So we have to adapt. This means posting a guard between the table and the counter so he can not enter the kitchen. Of course, then that person can not see if he is climbing the gate to go upstairs. If no one is available to help, I often resort to bringing the wheelchair inside. I hate to confine him, but I can not risk him getting hurt while I cook.

Hopefully, we will be able to find the cause of the regression and fix it. Until then, we will have to be on guard.

This is our crazy Life with Super D.

I will say to the Lord, “My refuge and my fortress, my God, in whom I trust.” – Psalm 91:2

Tests and more tests

by James, posted in Stuggles

Yesterday was a long day for Super D, and us for that matter. We had an appointment to have an MRI done. The last one we had done was over a year ago. It seems this is something we end up doing every couple years. They never find anything new, which is a good thing.

This time we had it done in another attempt to rule everything out. At the end of the month we are having another EEG done in this search for answers. I doubt either one will be helpful.

The MRI  is not as easy as it is for an adult. We can lay still. For Daniel, the procedure requires he be sedated. A 45 minute MRI turned into a four hour event, not counting the drive time to Topeka.

So why put him through this?

Because we are running out of options. We need to add a new medicine, but we need to make sure we have the latest and greatest information available.

His seizures have been getting worse again. He has had several big seizures each day for the last few days. Yesterday was one of the worst we have seen. The number of seizures was not as great as some days. It was the severity of the seizures today. He stopped breathing during one in the hospital, long enough for his face to turn blue. It was bad enough the nurse needed to give him some oxygen.

Something is going on in his brain. We desperately need to find out what. It may be the natural cycle he seems to be on, but these have been worse than any we have seen in the past. Nothing about epilepsy makes sense, but it is worse for Super D. He does not fit into any known category. The doctors do not know what to do with him. Hopefully these tests will shine a little light on the situation.

In the end I will not be surprised if we spend several grand to be told exactly what we already know. But, we will spend the money if there is even a slight chance we can find something new that might help treat him.

If only my anguish could be weighed and all my misery be placed on the scales! It would surely outweigh the sand of the seas… – Job 6:2-3