Thursday

Today has felt busy. We’ve seen a lot of people and I will explain what I can here while I can still remember it.

Last night was difficult for me. Daniel slept, but he was a bit restless and he ground his teeth like he was going to break them right out of his mouth. This was pretty constant most of the night. Also last evening, because of his fever and illness symptoms, we were put under restriction, which means no one can enter our room without a mask and being gowned and we have to keep the door shut, which is hard for our social guy (the little one, not the big one). They also ordered a nasal swab to see if he has something communicable. Between watching his fever more closely and someone not coming to do the nasal swab until about midnight there were loads of interruptions and I got very little sleep. We’ve been through these multiple day EEGs several times now, and I know this happens every time, but I still always find it difficult when I am so tired and my functional ability gets very low.

Early this morning, around 5:30 or so, an EEG technician came in to improve the connectivity on some of Daniel’s leads on his head. After that he was quite awake, and while we did get him to doze for a little while, it was still an early morning. Cleveland Clinic does a good job of whole-person care, which means we have seen multiple disciplines. Yesterday the social worker was in, today Psychiatry was in, and that was a lengthy meeting. Late morning the epilepsy team did their rounds, and this was a shorter visit than yesterday. Daniel has still not had any seizures, so they had similar data from the night before. It continues to show near-constant epileptic spikes on both sides of his brain throughout the night. Apparently his medication levels had gotten a little high, so they may still be providing good seizure protection. Tonight they will reduce them even more and Daniel is to be sleep-deprived. We are to be sure he only gets six hours of sleep tonight. Part of me wants to laugh out loud at that suggestion, part of me wants to cry. Daniel is excited! “Woohoo! I get to stay up til midnight?!” This is going to be … interesting for sure.

The doctor managing Daniels’ care on the EMU the last two days is Dr. Moosa and you can see a video about him here. He is not quite as warm as Dr. Lacchwani, but he is an expert and has devoted his professional life to this condition, so I trust his guidance. He is not giving me the news I want to hear, but that isn’t his job.

Daniel’s most recent MRI showed an area of the brain which his doctor in Charlotte thought might be the origin of the seizures, and I have been very hopeful that that would be the case and surgery could be done on that area. Dr. Moosa told me today that he did see that area on the MRI and the seizures we describe would not be coming from there. So, that was a disappointment for me.

Because of the ESES I mentioned yesterday, Dr. Moosa wants Daniel to have a genetics work-up and blood was drawn for that today. Also, the neuro-genetics team came to see us this afternoon. There are a couple of genetic conditions that cause ESES, and they need to explore if Daniel has one of them. If he does, there are not surgical options to correct the problem, but there are medications that are known to do better than others for genetic cases of ESES. Also, for one type of genetic ESES, kids tend to outgrow it around their teenage years. For another type, it progresses into adulthood and does not improve. Obviously it is important to know if we are dealing with one of these genetic types of ESES.

Now, here we have a boy with an obvious brain injury with which seizures are often associated, so the neuro-geneticist told us that initially he did not think it would be worthwhile to pursue genetic testing in Daniel’s case, but when Dr. Moosa described Daniel’s seizures to him, and Daniel’s specific profile in regard to learning challenges, etc., he became convinced that we need to pursue this route because Daniel’s profile is very similar to the ESES profile that aligns with these genetic types of ESES. So I asked, is there a correlation between this genetic ESES and having a brain bleed in utero, and he told me there is not. Could Daniel really have both a rare brain hemorrhage and a rare genetic condition? This doctor said yes. When pressed, he said it is not necessarily likely, but important enough to confirm one way or another.

This is complicated, for numerous reasons, but one of the reasons is that Daniel’s blood can’t be sent out for this genetic testing while Daniel is an inpatient, because insurance won’t cover the testing under those circumstances. (Don’t get me started.) So, after Daniel has been discharged, they will arm-wrestle with the insurance companies to get it approved and then have the testing done. So, final determination on Daniel’s treatment can’t be decided until after we go home.

But, we are still waiting to have a seizure, and we need several seizures to confirm that they are coming from the same area in Daniel’s brain. So it is also possible that Daniel has ESES along with different types of seizures resulting from his prenatal brain injury. So, there could be multiple ways the seizures could be treated. The seizures that present in the typical way could be coming from one area of Daniel’s brain and that area could be potentially identified and then a procedure done to address those seizures, and then specific medications given to address the ESES.

Honestly, it’s making my head spin.

We are heading into Friday, and it is still unclear how long we are staying. If Daniel has several seizures tonight and tomorrow, and they are not coming from a focal point, it is conceivable we could leave on Friday night or Saturday and all go home together in time for Dave to catch his flight on Sunday afternoon for his class next week. If Daniel doesn’t seize, I don’t know what they are going to do. Daniel has asked if they will keep us here forever, and we are trying to make that a funny scenario to lighten the mood. If he has a few seizures and there is an identifiable focal point, then I think they will possibly proceed to a surgical procedure early next week, and David will need to fly home tomorrow evening. It’s all so complex, and we are trying to just let it unfold, but for a planner like me and a worker like David it is hard to just wait it out and wonder how expensive a plane ticket is going to be when you buy it two hours before the flight. God knows. He’s got us. Things will become clear. We are where we need to be. That’s all good.

David has been staying at an AirBnB near the hospital and I have come over to it this afternoon to do laundry, rest and get a shower. I needed to get all of this out to settle my brain, and then I need to lay down and sleep. I would greatly appreciate prayer for a good rest time for a few hours before I go back to the hospital for the night shift. Pray too for David as he is with Daniel at the hospital. Pray for seizures, as weird and counter-intuitive as that feels. Pray for Daniel – this is so hard for an 8 year old boy. Pray for our emotions and our interactions as tensions can escalate in a situation like this.

Thank you so much to those of you who are praying and encouraging us. We are very grateful. Thank you for loving our boy!

Wednesday

Today has been okay. Daniel has gotten some sort of bug and has had vomiting, dinarena (as the kids say at our house), and a little fever today. His medications have been reduced today, and I am expecting to see seizures begin tonight. We will see.

He was monitored by EEG last night and we saw the EMU doctor this morning (not the doctor I shared about yesterday, but his colleague on the unit). He indicated that Daniel is having more sub-clinical seizure activity while he sleeps than we previously realized. He seemed to indicate that this is ESES (also called CSWS), which is a challenging form of epilepsy where there is almost continual spiking of electrical activity in his brain while he sleeps. You can read about ESES here, if you want to.  To be honest, I wasn’t expecting this. In the past ESES has been briefly mentioned by his doctor at home, and I think we read a little bit about it, got scared and moved on. So, it really hasn’t been in my thinking. It seems there may be a couple of different kinds or presentations of seizures, which is not at all uncommon. As we approached our visit here, in my mind I had reached some sort of conclusion and as we receive information here, my preconceived notions must be adjusted. This is, of course, the only realistic way this could go because I know so little about what is going on. However, it has thrown me a little and my fear-meter has been running a bit high today.

We continue to have wonderful nurses and good care. Daniel’s night nurse is named Alexa, poor girl, and Daniel immediately asked her to play a song, just like he does with our “Alexa” back home.

Our particular prayer requests for today are: 1) that David and I don’t get this bug that Daniel has. We really cannot afford to have one of us go down with that, so please pray for our health to be good. 2) that we will leave our anxieties with the Lord and just trust in Him and in the process here. We are in good hands all around. 3) that Daniel will have some typical seizures and that good data will be recorded that will allow the doctors to determine what course of action to take.

Your comments and little notes of encouragement and letting us know you are praying for us mean so very much to us. Thank you!

 

Tuesday – Admission Day

Today was a good day. This morning we had an appointment with the doctor following Daniel’s case. He’s a really nice, caring man. He told us, “You are in the office of someone who is passionate about helping children overcome epilepsy. You won’t ever be in the office of someone who is MORE passionate about it.” Here is a little video of him if you are interested in seeing it. It’s only a minute or so, and really shows his intelligence and caring heart. We feel comfortable in his oversight of Daniel’s care and that he will do whatever he can to get at the answers we all are after.

After our appointment we went to get lunch and wound our way to the cafeteria, which is more like the various restaurants at a large airport – including Panera, Starbucks, Moe’s, and I don’t even know how many more. We are definitely in awe of this huge complex. By the end of the week I hope I can find my way around without having to ask too many questions.

This afternoon Daniel got checked into his room, met his nurses and got hooked up to the EEG. The plan will be reevaluated every day. For the first 24 hours they will be monitoring him at baseline – with his current meds on board. Tomorrow they will begin adjusting the medications and prepare to see seizures. Please pray for this. If they can observe multiple seizures this week it will enable them to do different types of tests and also give more certainty about the origins of the seizures. We are very hopeful about this process.

That’s all for now. Thank you so much for caring about Daniel.

In Cleveland

So far our trip has mostly focused on fun time together. Last night we made it about half way and stayed in a hotel in Charleston, WV. Upon Daniel’s request we found a hotel with a pool and went swimming with him this morning. This afternoon we found a movie theater along the way and stopped and watched The Call of the Wild. It was a good movie and added a fun element to the trip.  We arrived in Cleveland this evening and settled into our hotel just down the street from Cleveland Clinic. Don’t let the word “clinic” fool you – the place is huge and goes for blocks!

We got Daniel into bed and I went down to the business center to try to print some documents for our appointment tomorrow. Shortly I got a one-word text from David –
“Seizure”, so I booked it back up to our room where Daniel was having a weird seizure episode, unlike anything we have seen before. The fun part of the trip is over, and we’re getting down to business. This is why we are here.

Tomorrow morning we have an appointment with an epileptologist here and then Daniel is scheduled to be admitted to the EMU – epilepsy monitoring unit. I have updated the “Join Daniel’s Prayer Team” page with prayer points for this week. Please check it out and be praying along with us.

Thank you, friends!

God’s Still Doing a New Thing

Ten years ago today, March 1, 2010, God used a church meeting to set us free from decades of spiritual abuse in a church-turned-cult situation. After the meeting we discovered the new calendar page for March was this:

Isaiah 43:19 “Behold, I am doing a new thing; now it springs forth; do you not perceive it?”

Indeed, we perceived it! This verse became the theme as David and I, now finally free to marry, began to plan our wedding. Not outside of God’s gracious sovereignty, but under the unbiblical leadership of David’s father, we had been waiting for eight years to be able to join our lives as we were convinced God was leading us to do.

Later, on April 25, 2010, we shared in an evening service about the history of our relationship and our new engagement and invited our church family to our wedding, set for July 30. As those eight years had passed by, so had my prime child-bearing years and we were unsure if we would be able to have children. At the end of that service, there was corporate prayer for us including specific prayer that God would give us a child. Daniel was born April 25, 2011, one year later – to the day.

He wasn’t due until mid-May, but he had had a brain hemorrhage in utero and the doctors wanted to get him out before I could go into labor. A strange coincidence in the midst of awful circumstances? No. Unbeknownst to each other, God had given both David and me Daniel’s name eight years earlier. God had strongly impressed on us the previous year that we needed to be married by the end of July, and God had brought Daniel into existence at the very first possibility after our wedding. When we learned about his brain bleed and were crying out to God, He spoke to my heart that nothing was “wrong”, but this would shape Daniel to be the person God intended him to be. Being born one year to the day from corporate prayer that God would give us a child was to us an underscoring that God was saying “This is my boy.” In the daily challenges we face because of Daniel’s cerebral palsy and epilepsy resulting from his prenatal brain injury, this gives us peace.

So today, on the tenth anniversary of the deliverance God brought which opened the way for Daniel to even exist, as we participated in corporate prayer for Daniel as we head to Cleveland Clinic, we stood with expectancy and confidence.

This is not confidence in a particular outcome, but confidence in a God who practically moved heaven and earth to give this precious boy his life; in a God who orchestrates dates and details to deepen our faith and encourage our hearts; in a God who is all-wise and all-knowing and has revealed medical mysteries and opened new medical methods to bring deliverance from things like epilepsy; in a God who is still doing a new thing!

Praise Him with us.

Beseech Him with us.

Uphold Daniel and us as we go through this next week or so of testing and, we hope, of a life for Daniel without the ravages of epilepsy. Now that would be an amazing new thing!

https://youtu.be/eF9pVCDHN_4

Ohio Bound (no, we’re not moving)

IMG_E3662Once again, a long overdue update.  Here is Daniel’s second grade school picture from Fall 2019. He is growing so much and is almost nine years old! He is just about 51″ tall. He is very concerned about how tall he is because he wants to get to 54″ as soon as he can. Why? Because that is the height limit for a lot of rides at Carowinds, the amusement park near our house. You might say he’s obsessed.

The reason for an update now is that we have quite a bit to share about what has been going on with Daniel, and we are about to take a trip to Cleveland Clinic Epilepsy Center (CCEC) the first week of March to have him evaluated by the specialists there. We have been pleased with our epilepsy specialist here in the Charlotte area, and she has expressed concern about Daniel’s condition and has a lot of confidence in the doctors at Cleveland Clinic, so she has referred us there and we are hoping and praying for this to be a helpful and possibly life-changing appointment.

Last June, Daniel had four seizures and he has really never been the same since. His medications were increased and the side effects have been pretty hard on him. We noticed decline in his motor skills, and less coordination when walking in his walker. We had more and more occasion for concern, and comments from school about how fatigued he was and how poorly he was doing using his walker. In the Fall, his epilepsy doctor began to suspect that one of his anti-seizure medications was causing these symptoms and she recommended changing his medications, which we proceeded to do. As is often the case with med changes, we have seen more seizures as we have been sorting out the right dosages. There have definitely been some benefits to reducing this one medication and Daniel has done better with his physical strength and coordination as well as attentiveness at school to some degree. However, he is on two additional anti-seizure drugs and those have their side effects as well. Daniel almost always appears tired and is having a hard time focusing. Academically, he is suffering considerably.

Last week, we had an IEP meeting at school where his team presented the results of his most recent evaluations. The results were not at all encouraging. Over the last few years there has been a steady decline in scores related to Daniel’s cognitive functioning. Daniel is making very little academic progress and is testing in the first percentile in standardized tests. At the end of the meeting, it was suggested that we begin to consider if Daniel needs a more specialized school setting. This was very hard news to receive and we have been reeling ever since.  Epilepsy has had a very hard impact on Daniel’s learning ability and his daily functioning as well as his emotional health. In retrospect, we can see that the very long seizures he has had have damaged him and we are gradually seeing our boy change and aspects of his personality seem to be slipping away. In addition, his seizures continue to be dangerous as they tend to be long and he at times has stopped breathing. They also often happen when he is asleep and his doctor is concerned that he could become a victim of SUDEP, which I think I have mentioned before in previous posts.

At this point, we feel this trip to Cleveland Clinic is really important and we are very hopeful that the testing that is done there may result in a treatment that might eliminate Daniels’ seizures. He had an MRI last month which for the first time showed an area of his brain where the seizures might be originating from. When he is admitted at Cleveland Clinic, his anti-seizure meds will be stopped and we are hopeful that he will have some seizures while he is hooked up on the EEG video monitoring unit. The testing that can be done at CCEC has the potential to pinpoint if Daniel’s seizures are originating from one or two particular spots in his brain and if they are, there are some surgical procedures that have shown promise for eliminating epilepsy. This would be huge, of course, and we are both very hopeful and somewhat terrified. Brain surgery is never something anyone wants for their child, but when it holds the potential to allow that child to learn, and to function physically in a way he hasn’t been able to before, it becomes a beacon of hope in a pretty dark place.

Right now it is hard to think of much else, and while we are trying to function and do our jobs and keep things moving at home, we are continually thinking about this trip and how things might go and how we don’t want to get our hopes up too high, but we also don’t want to miss any opportunity for help for Daniel. We covet your prayers in a way that feels almost desperate. As we deal with the emotions surrounding Daniel’s medical situation, we have not lost sight of our faith in a God who sees all, knows all and loves with depth and abandon. Our precious boy is not outside of God’s care. Reminding ourselves of this is important and necessary. We are His and our hope is in Him. Here are a few songs that are helping to ground us.

 

 

Not In A Box.

This morning Daniel had another seizure.

Our “no seizure” run since December 28th is over. We didn’t make it two months.

Not only that, he was awake. This is the first seizure he has had when he has been awake since Christmas day of 2017 – about 14 months.

As we were sitting on the floor in Daniel’s room waiting for the seizure to stop after we had given the rescue meds, David said, “You can’t put our situation in a box. Whenever we think we have things figured out, they change.”

It’s true. David and I went out yesterday afternoon, and friends watched the kids for us. We assured them it was extremely unlikely that Daniel would have a seizure because he hasn’t had one when awake for over a year, and even then it was only one in 28 months! That is now out the window. It is also out the window that we can leave Daniel alone in his room in the morning when he wakes up early or playing in the loft for a little while by himself. We can’t be lazy. Someone will need to be with him all the time.

This morning Daniel is a mess. The postictal phase (the time after a seizure) leaves him floppy, somewhat confused, irritable and generally difficult. So, we will all be home this morning, cuddling on the couch watching a movie, helping Daniel and helping each other.

Epilepsy takes the lead.

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First Day of School

As it has been over six months since I last wrote an update, I will try to summarize briefly what has been going on in Daniel’s life since last summer. As you most likely know, we moved back to Rock Hill, South Carolina in August. It was an unexpected move, but was clearly what God was directing us to do especially for provision of medical insurance for Daniel. In an environment where it had been forecast to take 4-6 months for Medicaid to be approved, Daniel was covered within three months, retroactive six months. Amazing!

Daniel began first grade at his new school at the end of August and has been blessed by a wonderful teacher and team of therapists and administrators. While they have missed their peeps from Missouri, both children have continued to prove their resilience and fortitude through yet another adjustment. We have enjoyed living back in the neighborhood we lived in when Hannah came home in 2014. It is a great neighborhood just a half-mile walk from the kids’ school and where the kids can play in the yard, ride bikes and reconnect with old friends and make new ones. We renewed our relationships at the church we used to attend, and have been very blessed by the care of the church family through the fall and winter.

Daniel happily reconnected with his physical therapist from when he was three years old and he has been working hard in PT.  We also reconnected with our former pediatrician and neurologist. Daniel enjoyed a break from seizures from June through mid-September, but then they began again and he was having them every 2 or 3 weeks. This was troubling, and definitely impacted him academically and physically. We have seen a decline in his academic performance over the last few months which has been discouraging.  His neurologist referred us to an epileptologist – a more specialized neurologist who deals much more in depth with epilepsy.

Daniel’s first appointment with the epileptologist was in mid-December.  Honestly, it was a very hard appointment – not for Daniel, as he got to play with a child life specialist, but for me as the doctor and I talked for almost two hours. She explained Daniel’s situation to me in great detail. She reviewed his last MRI, which was from after his first seizure in 2012 when he was 16 months old. Never before had anyone gone over it so carefully with me and I won’t lie, it was crushing.  I won’t get into the details, but it explained a lot about the struggles Daniel has.

She also explained epilepsy to me much more, and though Daniel was only officially diagnosed with epilepsy in early 2018, he has had epilepsy since that very first seizure. She explained how his seizures did not really meet the qualifications for complex febrile seizures, or even an amorphous “seizure disorder” as it had been referred to for a few years, but that he has structurally based epilepsy. She also broke the hard news that this kind of epilepsy does not get better, it gets worse. The length of Daniel’s seizures, the extended recovery time for him, and the increase in frequency we had been seeing all put Daniel at higher risk than average for SUDEP, or Sudden Unexplained Death in Epilepsy. She said that it is critically important that we get Daniel’s seizures under control, which means stopped. Coming to grips with the real possibility that Daniel could die in his sleep from a seizure has been a painful process for us. We have precious friends who have lost children, and it is a fearful path that we do not want to have to walk, or the sort of club no one wants to join. I can’t say we have fully come to grips with it yet, but we are moving from a place of abject fear, terror almost, to a perspective of receiving each day as a gift, being grateful for whatever time we have together (hopefully many years ahead of us) and working out our faith at a deeper level. The information gained from this appointment has shifted our focus from cerebral palsy as Daniel’s primary diagnosis, to epilepsy being the top concern. It is certainly the most dangerous of his issues it would seem.

Following the epileptologist appointment Daniel has had a number of tests, such as a sleep study, an overnight EEG, and an MRI. He has added a second seizure medication and we are extremely thankful that he has not had a typical seizure since December 28th. Going on two months without a seizure is wonderful, but there are a number of concerning issues for us. One is that there have been some other things that have been observed in Daniel which may be other kinds of seizure activity – possibly absence seizures and sudden jerks of his legs that he can’t control. Most nights lately we have been able to work out a system where Daniel is getting better sleep, and we think the new medication is helping with that as well. There are some other symptoms that we are pursuing further explanation for. All in all, the last few months have taken us to a new level of concern for Daniel’s well being and brought into question what kind of future he will have. His academic struggles are very frustrating for him and as a result he hates trying to do his reading and math homework. He just can’t seem to recollect words he has learned in isolation when they are in context of other words, and basic math concepts are just terribly difficult for him to recall.

Earlier this week we had a follow up appointment with the sleep medicine doctor and learned that Daniel also has obstructive sleep apnea, and even when we think we’ve gotten a decent night of sleep from him, he has still had multiple issues of breathing obstruction and is not getting sound, restorative sleep. For children this is typically caused by large tonsils, which Daniel clearly has, but cerebral palsy also can contribute to this because of poor muscle control in the throat. We expect he will be having a tonsillectomy sometime in the next couple of months and will hopefully start getting better sleep after that.

For those of you who have been touched by Daniel’s enthusiasm and joyful personality, we would just ask for your support and encouragement, and especially your prayers for him. We pray each night for God’s protection over him while he sleeps and for God to supernaturally not allow any seizure activity in his body. We also pray continually for healing in his brain and body. We know from the Bible that God numbers the hairs on our heads, and he knows where each person will live and the number of their days on this earth. No one is promised long life or complete health. We are promised salvation through faith in Jesus Christ, and I am abundantly grateful that even though 2018 was a terribly difficult year for our family it is also the year that both of our children sought to give Jesus their hearts and receive forgiveness for their sins and salvation through His death and resurrection.

These are hard days, and we find ourselves very sensitive to the pain we see in our world and to fearful valleys that other families are going through with their own sick or dying children, but we live in hope, even as we process fears and feelings and complex realities. Thank you for your loving support and care for our dear boy and for our family.

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June Update & Change Is Coming

It has been a busy and stressful six months since the last progress report on Daniel.

Daniel PT baseballHe has continued to work hard in therapy, and as we approach the one year anniversary of his SDR surgery, we are grateful to step down to a once-per-week physical therapy schedule.  He continues to improve, and we are pleased to see him gaining weight and building muscle in his legs. Right after his surgery we were given knee immobilizers for him to wear at night. When he got them they fit very well around his thigh. Now, we can still get them closed at night, but he has built up so much thigh muscle that we can just barely get enough velcro to adequately secure the top of the immobilizer. This is exciting! Muscle bulk means improved strength for Daniel’s legs, and he has worked hard for all of it.

We have not seen the degree of progress in walking that we had hoped to see by this time. This doesn’t mean it won’t come, but one huge hurdle for Daniel is fear. Please pray for him about this. We want him to be able to overcome his fear of falling so he can have confidence in standing strong. The other day he walked with me from the mailbox to the front door of our house. He did not have his walker with him and he just held on to my hand. Initially he was very fearful and didn’t believe he could do it. We had just come from Vacation Bible School where they had talked and sung about Jesus being our strength when we feel powerless. We talked about it, and prayed and Daniel walked really quite well holding only on to one hand all the way to the door. He was excited and proud of himself for this accomplishment. It showed that he CAN do it, but he needs to look beyond his fear in order to do it.

He finished up his second (and last!) year of Kindergarten in May. He has had wonderful support at Independence Elementary School. We are so thankful for the loving care and awesome helpers he has had there. He is still delayed academically, and we would ask for prayer for him in this area as well. He is bright, but he has a lot of trouble with putting letters together to make words, and remembering words he has learned. He seems to have a visual processing difficulty that we have not been able to get to the bottom of yet. He has some strength in the area of math and this is an encouragement.

We have continued to struggle with his seizures throughout the first half of 2018. We have been in the hospital four times dealing with seizure-related stuff this year, and frankly we’ve had enough of it! He has had three seizures in the last month, two while we were on vacation.  All of the seizures this calendar year have happened approximately ten minutes after he has fallen asleep. We feel somewhat relaxed during waking hours at this point, but try to never be without our seizure bag which has all we need to deal with any seizure that comes up anywhere we happen to be. We continue to be in close contact with Daniel’s neurologist and epileptologist and continue to work with his medications to try to reduce the number of seizures he has been having. The seizures are serious and potentially life-threatening as they are lengthy and he stops breathing during some of them. This has been very stressful for our family and very discouraging when he has another one.

 

Camp WeCanDu photo
Camp WeCanDu 2018

Daniel just finished up a week of camp at DASA’s (Disabled Athlete’s Sports Association) Camp WeCanDu. Those of you who follow us on Facebook have seen some pictures of a very happy boy doing some really fun stuff this week. We were so thankful that he had this experience. It was really amazing to observe this camp in motion. Daniel did not stay overnight, so each morning and evening we transported him, so we got to see more than just the initial drop-off and end of the week pick-up. Imagine a camp where the entire camp is handicap accessible. Cabins are all wheel-in, every building has no stairs, the pool has a wheel-in shallow end. Seriously,  I couldn’t have even imagined it before I saw it. Every camper has some sort of disability. Have you ever seen 80+ happy kids amongst a slew of artificial limbs, wheelchairs, various types of equipment to make activities accessible for them? It was img_8728.jpgamazing.

More amazing still were the camp counselors. You know what camp counselors are like. They are college age kids having a blast for the summer. Same here, except these young people spent their week carrying kids who couldn’t walk, dancing with kids in wheelchairs, helping kids without arms or legs to swim, dealing with their special needs, which includes things like feeding tubes, respirators, toileting issues, bowel and bladder routines that can take up to 90 minutes.

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Daniel and his counselor Katie, who worked with him most of the week

Can you imagine a group of young adults giving completely selflessly for an entire week – (round the clock we’re talking here!) – to enable children, who for 51 weeks of the year live in a world where they are different, to have a week of absolute fun with a whole bunch of kids who are all different, so they are all the same? I am brought to tears by this group of young adults. They all deserve much more than an enormous round of applause.

 

 

 

Change Is A’Comin’

Without taking the time to get into all the details, while we were on vacation God took us through a series of experiences that upset the apple cart, so to speak, and caused us to realize that He is taking us back to South Carolina. This was completely unexpected, as our plan was to stay in Missouri for some time to come, especially since Daniel’s school experience has been so very good. However, many of you know that our experience with Missouri Medicaid has been very difficult. By a providential error, Daniel received Medicaid for the first year we were here, and his SDR surgery and immediate follow-up were covered by the State of Missouri. This was a tremendous blessing. However, since October, we have not had Medicaid for Daniel, but have been put on a spend-down program where if our medical expenses exceed $3300 per month, Medicaid will kick in and cover the rest. Just before we left for vacation we learned they were bumping our spend-down amount up to $4700 monthly.  We have struggled a great deal with his medical expenses and with trying to satisfy the confusing paperwork procedures to meet the spend down requirements. We have not been able to have a personal care aide here, and this has taken its toll on David and me. Physically we are hurting. The amount of lifting and carrying and helping Daniel has been very hard, and we really need some  help at home.

South Carolina participates in a program called TEFRA/Katie Beckett Waiver, which is based entirely on the needs of the child and does not take into account the parents’ resources.  Missouri does not participate in this government program. We are on (or about to be put on) a waiting list for a waiver program here in Missouri which serves only 366 individuals in the State at a time. We would likely be waiting another year or two before Medicaid would come through for him. We would be able to have Medicaid and get an aide within 3-6 months in South Carolina. It is very interesting to see how God has worked on Daniel’s behalf through our various moves. When God took us to North Carolina, he used the waiver program (through which Daniel got NC Medicaid) to provide Daniel’s power wheelchair and our wheelchair accessible van. We would not have gotten these in either South Carolina or Missouri. When God brought us to Missouri, he completely covered Daniel’s surgery last year through the Medicaid mistake. Now, it seems he is taking us back to South Carolina and we trust that he knows what lies ahead and will continue to provide for our family.

Moving again is daunting, of course.  We have really liked living in Missouri, and are sad to leave friends and a church where we have been involved for the last two years. We are sad to leave the amazing school where Daniel has been so loved and cared for and where we expected Hannah to have the same teacher Daniel has had for those two years.  Leaving doctors and therapists who have walked with us through some challenging stuff is sad and a little threatening.  However, we have been praying for relief and it is our sense that God is answering that prayer through this move. We are planning to relocate before the middle of August for the kids to start school in South Carolina. Please be praying for us as we undergo this process. Please pray for the children as they undergo another transition. So far they are kind of sad about the prospect. It is a roller coaster of emotions for all of us. We have a lot to do, and we need all the help we can get. If you feel led to help us, please reach out. Thank you!

 

 

Daniel’s Seizures

Daniel’s seizures have been quite a distraction lately. They have been surprising, confusing, concerning and far too frequent. The game has definitely changed for us, and we are on high alert constantly, which is quite draining. I thought I would write about our experience with Daniel’s seizures to help others understand and to process and document for ourselves.

Daniel’s seizures have always been atypical. His first seizure was at 16 months of age, in August of 2012, when he was sick and had a very high fever. Febrile seizures in children are relatively common. (Febrile means having or showing symptoms of a fever. Here is a link with interesting information about febrile seizures.) These seizures are frightening, but they typically are fairly short and resolve on their own. Daniel’s seizure did not stop until we were in the ambulance on the way to the hospital after two doses of valium had been administered. The seizure lasted around 30 minutes. This is a very long seizure, and dangerous. Seizures are often described as the brain “resetting itself” and are not considered dangerous, because typically they stop within a few seconds or a minute or two. Seizures that go on for a long period of time can cause brain damage. At that time, Daniel’s seizure was described by some as a complex febrile seizure, but his neurologist felt that Daniel’s seizure was different and believed we would see more of them. She was concerned that Daniel’s seizure, though triggered by high fever, did not really fit the febrile seizure profile. It turns out she was right, but it has taken almost six years to reach certainty about it. (Here is a link to information about Types of Seizures.) We were given some basic seizure training, and Daniel was prescribed Diastat, an emergency seizure rescue medication, which we were to keep with us at all times.

Daniel’s next seizure was a year later, in July 2013, again during a time of sickness. Actually, we then learned that a seizure can be the first sign of sickness coming on. We used the Diastat, and the seizure did resolve over 10-15 minutes. Again a year went by between seizures, and then at the end of July 2014 he had seizures two days in a row, during a time of sickness with very high fever. During some of this time he was on a daily seizure medication called Keppra. We didn’t like the Keppra because it affected Daniel’s behavior, and it also didn’t prevent the seizures that came when he was sick. We decided to go without the Keppra since we didn’t want to medicate him daily for something that happened once a year and we didn’t like the behavioral effects. For over a year Daniel was not on a daily seizure medication and he did not have any seizures except when he was sick with a fever. However, in February 2016 he started having seizures monthly. He was in a preschool where kids often came in when they were sick, and he got sick over and over again. We attributed the seizures to his illnesses and continued to hope they were of the complex febrile variety. But in May he had a seizure while he was outside riding his tractor. His personal care aide was with him, thankfully, and the seizure responded to the Diastat. However, he was not sick and did not become sick. In July, he had a seizure during the opening exercises of Vacation Bible School. We administered the Diastat within two-three minutes of the start of the seizure, but the seizure did not respond well and when he was still seizing 25 minutes later the paramedics were called and we went to the hospital. Daniel did quite a bit of throwing up in the ER that evening and we ended up concluding that he was sick. However, by this time we had begun discussing the situation with his neurologist and Daniel was put back on Keppra. We moved to Missouri a month later in August 2016 while his Keppra dosage was still being regulated. We moved into a house with a pool which the kids were very excited about, but two days in a row Daniel had a seizure right after getting into the pool and we learned that a rapid drop in body temperature could trigger a seizure just like a rapid rise in temperature. We got in to see a new neurologist at St. Louis Children’s Hospital as quickly as we could and Daniel’s dosage of Keppra was increased. So did his behavior challenges, but we saw no seizure activity for 14 months until November, just two months ago.

This seizure in November really took us by surprise. I guess we had gotten complacent since we had been over a year without seizures and we hoped that Daniel had outgrown febrile seizures as many children do. As others had been, that seizure was associated with illness and fever spike as well, but because I was alone with Daniel at the time, was woken up by the seizure, and was being vomited on repeatedly, I did not get the Diastat into Daniel until after the seizure had been underway for several minutes. The seizure progressed instead of responding to the Diastat and after the paramedics arrived they administered two more doses of medication before the seizure stopped, then Daniel began to suffer respiratory distress. This whole experience was almost as scary as the first seizure he had ever had and led to further discussions with neurologists in the hospital and with Daniel’s own neurologist. We ended up deciding to change seizure medications from Keppra to Trileptal and then proceeded to make that transition over the next 9 weeks. During that time though, Daniel had another seizure which took place on Christmas Day. Daniel was not sick and did not become sick later. This was troubling. Seizures associated with illness/fever could be explained. Seizures that are not provoked or have no identifiable trigger do not support a diagnosis of  febrile seizures or an “unspecified seizure disorder”, as we had been referring to Daniel’s situation in recent years.

On January 9th, Daniel had another seizure which at the time seemed unprovoked, but the next day Daniel developed a high fever and ended up having the flu. Over a week later, after his fever had been gone for a couple of days and he had returned to school, he had another seizure the evening of January 17th. He was asleep in bed and had a new type of seizure that we had not observed before. In the past Daniel’s seizures have always been on the left side of his body and progress from the side of his mouth to his eyes, his head and neck, then his left arm and eventually left leg if the seizure is not stopped before then. This seizure seemed to involve both sides of his body and he seemed to be unable to breathe. This went on for about a minute and his face began to turn a bit grey in color. He was not vomiting, but copious amounts of saliva ran out of his mouth. His whole body was stiff and I struggled with getting his sleeper off to administer the Diastat. But then, suddenly, before the Diastat really had time to take effect, Daniel was alert and oriented and the seizure had stopped. However, Daniel could not speak normally. It seemed the left side of his tongue was paralyzed or something and his face was not symmetrical and the left side was drooping. The paramedics looked him over and we all discussed Daniel’s situation and presentation and all concurred that he needed to go to the hospital for assessment. We were all concerned that given the completely new presentation that perhaps Daniel was having some sort of stroke. Daniel was awake and conversant for the next three hours, with varying degrees of intelligibility and coherence. At some moments he could spell his name, at other moments he couldn’t. This was also very unusual for him. Typically the Diastat makes Daniel drowsy for quite a while after a seizure. This time it didn’t seem to affect him until about 10:30 or 10:45 p.m. when he finally fell asleep in the emergency room. It had already been decided that he would be admitted to the neurology floor overnight for observation and when they got us up there they tried to wake Daniel up to examine him. It took fifteen minutes to wake him up, calling his name, rubbing his limbs, pressing on his nail beds, roughly rubbing his chest. Finally he groggily came around enough to be examined. Even this was so different from what we had seen before.

Finally, late the next afternoon, two neurologists came to see us and to examine Daniel. They graciously stayed a long time, explaining things and answering our questions. They explained the nature of Daniel’s seizures, how they relate to his brain injury before birth, and how it is determined if a medication is effective or has failed. They also explained why Keppra is often the medication of choice in spite of the behavioral side effects, and how medications are selected for use then in order of their effectiveness and side effects, which can end up causing damage to other systems of the body.  This was all useful information and important for us to know though some of it was not terribly encouraging. They raised Daniel’s new seizure medication to the highest dose for his age/weight and said we’ll give it a few weeks at this level to see if it will be effective in preventing seizures for Daniel. They also explained that at this point, Daniel’s diagnosis is epilepsy. Epilepsy is diagnosed when a patient has two or more unprovoked seizures, which is the case now with Daniel. This makes us sad. We kept looking for the reason behind each seizure hoping that this would not be the case, hoping that Daniel would not be one of the children with cerebral palsy who would develop epilepsy. The diagnosis, however, really doesn’t change anything. It simply puts a name to what already is, and even though we are sad that it is the case, having the diagnosis gives us the ability to find out more information, to know what to look for, and of course, to ask more questions. We have already caught ourselves asking questions like “what does this mean for him?”, “will he not be able to drive?”, “what about his independence?”. This is natural I think, but not especially helpful at this point. Fear is crouching at my door, I can feel it, but I must not let it consume me. I believe in and serve an almighty God. A God who named Daniel eight years before he was born. A God who arranged Daniel’s birth exactly one year to the day from corporate prayer that God would give us a child. A God who made some seemingly impossible things to happen which allowed Daniel even to be conceived. A God who saves, heals, delivers and protects. I trust Him. I am anxious sometimes. I worry sometimes that we’ll miss a seizure while we are all sleeping, but ultimately I sleep at night because I entrust each of us to our loving God and I trust Him to wake us. We are careful – we use a video monitor whenever Daniel is sleeping, we train all of his babysitters before we go out, we check in with him often, maybe too often, but ultimately we know that we do not have control over this and we can live in fear and near panic, or we can be at peace trusting in God’s care. This is what we choose day by day.