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.

 

 

3 thoughts on “Ohio Bound (no, we’re not moving)

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