Saturday – Sunday

I didn’t post at the end of the day yesterday because I was trying to get Daniel to go to bed at a relatively normal time in hopes of one of his typical seizures emerging. In order to make that happen I needed to be ready for bed as well, and keep the lights low. I also didn’t have any developments to share, and I was a little frustrated about that and didn’t want to write about it.

As you know, we were working with sleep deprivation Thursday and Friday nights. Thursday he slept from 12-6 and Friday he slept from 1:30-6:30. That hadn’t triggered seizures, and being deprived of sleep isn’t a guaranteed trigger for him anyway, so I asked if we could just try a normal night. Normal, however, doesn’t include having EEG leads stuck to one’s head for days on end. I’m just going to describe this for you, and I want you to try to imagine it happening on your own head if you haven’t had this done yourself before. eegelectrode

So, this is an EEG electrode. Before it gets stuck to your head, your head has to be prepared. Painstaking measuring and marking of your head is done, then each spot where one will be stuck is prepped with an alcohol wipe, then some abrasive creamy stuff is rubbed onto each spot to ensure a good connection. Then some goopy stuff is put in the cupped portion and the electrode is stuck to your head. To keep it in place, little pieces of gauze dipped in a terrible smelling glue are put on top of the electrode and some cold air is blown into that little hole on the top of the cupped portion of the electrode to harden the gauze and make sure it is not going to come off. (About that terrible smelling glue – when we got off the elevator on the epilepsy monitoring floor on Tuesday we immediately knew we were in the right place because we could smell the glue. It’s not a nice smell. Anytime someone new comes on the unit and gets hooked up we can smell it all over again.) boy-getting-an-eeg-KD8AYMThe process is repeated again and again until twenty-something of these electrodes have been pasted onto your head. It looks kind of like this boy from the stock photo. After that, gauze is wrapped around your head so you look like you’re wearing a white hat. Then, you wait, go about your activities, eat and sleep. One day goes by, then another, then another. You haven’t been able to wash your hair, or take a break from having these leads on. Imagine how your hair feels when you haven’t washed it for three days. Now imagine how your hair would feel after three days with gluey patches stuck on your head. The goopy stuff in the electrodes dries out after a while and the connection isn’t great, so the EEG technicians come around and stick a probe into the hold on the end of the electrode and squirt some lotion in there. That feels better for a little while. Sometimes the technician isn’t super careful and pokes you in the head with the probe and that doesn’t feel good at all. Has the word “itch” come to mind yet? After about three days the itching gets pretty bad, but you have to keep going. Day four. Day five. The itching is about driving you insane. And you are only eight years old. And you are supposed to be having seizures, and you aren’t, and you can’t make yourself, and your parents are telling you that you have to stay there until the seizures happen. It’s very hard. Such an understatement.

Anyway, that terrible itching was the death knell to my plan for him to get to sleep at a normal time and there was lots of frantic scratching and struggling and extra meds to deal with itching were brought on board. Eventually he got to sleep around 10:30. There were several interruptions throughout the night, including the night staff talking and laughing in normal tones at the nurse’s station which is right outside our door. That caused interrupted sleep, at least for me, numerous times during the night.

The good part is that Daniel is such a charmer and people are drawn to him. His nurses love him and even ask to have him as their patient. He has one nurse, Miss Jen, who he has connected with well, and thankfully she has been on four of the days so far. One of his doctors has been a third year resident doing his pediatric epilepsy rotation. His name is Dr. Mulphur. He’s really nice and Daniel likes him a lot and he likes Daniel too. On Friday he had worked 10 days in a row. He was here on Saturday doing research and he made a point of coming in to hang out with Daniel for a little bit. This doctor has been here for a couple of Daniel’s crying times, and Daniel has reached out to him for a hug and the doctor has been so sweet to try to help Daniel work through those moments. Sadly for us, Dr. Mulphur is moving to his next rotation on Monday, but he said he would still stop by to see Daniel. His visit yesterday was a highlight of the day. There were other people coming and going yesterday which was a nice diversion and helped the day go by.

This morning began with the food service worker waking us up by barging in with a breakfast tray demanding name and birth-date with no apology. Between that and the noisy night crew I did not wake up very cheery. Honestly, at this point I am upset, frustrated, extremely tired and feeling stressed. This is very challenging and we are not getting the answers that we thought we would be getting.

Yesterday morning I encouraged Daniel to take a little nap, and I snuggled with him in his bed to help him doze off. I held his left hand in my hand so I could feel it if he started to seize, and he settled down quite quickly and we both dozed off. Suddenly the lights came on and the nurses came flying through the door. Huh? What’s happening? There were no outward presentations of a seizure, but Daniel’s brain was showing seizure activity. Later the doctor showed me that the EEG showed clear consistent seizure activity for two minutes, but I never would have known. I guess this is sort of good, but this is not the seizure activity we need to see. So we are still waiting for a seizure like what he typically has.

So, that’s pretty much all I can share at this point. I’m pretty emotional today and struggling with how things are going here. I have a lot of questions without answers. We’re not having fun even though we are trying to do fun things to pass the time. I’m feeling pretty desperate at different moments.

Friday – Waiting and saying “Bye” to Dad

Today has been a lot of waiting. We are, at the moment of this writing, still waiting for a seizure. There is nothing we can do to MAKE it happen, though there are many things we are doing to try to make it more likely to happen. Daniel is now completely off his seizure meds. His head has started to itch, as it always does after a couple of days of the EEG leads stuck to his head. This time, he has been given Benadryl to help with the itching. Benadryl can lower the seizure threshold, so this time we are hoping it does. Generally we avoid Benadryl like the plague. Not this time! Bring it on!

Not very much happened today in terms of appointments. Dr. Lachhwani stopped by just to check in and to encourage us. He will not be on this weekend, and he has a trip the first two days of next week so we won’t see him for a little while. He said watching and waiting for the seizures can be a challenge, but it is really important. As we all know, Daniel’s situation with the brain bleed in utero complicates his situation, and raises questions that can only be answered with seizure data, so we must wait for the seizures to come. He said he wants me to know that they will not leave any stone unturned and they will pursue whatever is the best solution for Daniel. At the moment, we just have to wait for it.

Today was hard for Daniel, because he knew that David was going to be flying back home at the end of the day. He was weepy at different times anticipating this and it was hard for all of us, maybe hardest for David, when he headed for the airport. Poor Hannah had a bit of a meltdown tonight too and we spent a long time on a video call. She has been such a trooper at home and has had really a wonderful time with her grandmother (Dave’s mom), but she finally couldn’t take the missing us anymore. So understandable! Keep her in your prayers too, because tomorrow she and David will be preparing for her to go to stay with another family for the coming days. Grammy needs to go back to work, and David needs to fly to California for work. It is hard for her tender little heart which is already dealing with so much.

Tonight we have been instructed to restrict Daniel’s sleep to four hours. I am very, very hopeful that he will have a seizure as he starts to go off to sleep, as the transition to sleep is most frequently when his seizures happen. Then if he sleeps for a short time, is kept up and then sleeps again, maybe we can get two. We need data from at least three. It is critically important for making a solid decision on treatment. Let me just tell you, Daniel WITHOUT seizure meds is my sweet boy who is not irrational and hard to reason with. Seizure meds are a double-edged sword. In a lot of ways they are my enemy. They take away my son’s personality and make it near impossible for him to learn and process information. But, without them, he has terrible, potentially life-threatening seizures, which also do a number on his progress physically and academically. If there is a possible solution surgically which can stop the seizures we need to find it and of course that is why we are here.

Keep praying friends! We really, really need to be upheld in this time. Thank you so much!

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.

IMG_9407
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.

IMG_20181221_171529