Gideon is having seizures.

They aren’t your typical seizures that you see in movies, where the person is shaking, with eyes rolled back. Gideon’s seizures look more like myoclonic seizures.

Like this…

https://www.youtube.com/watch?v=BAmq8KWZ_fg

Not all kids with Gideon’s disorder (PBD) have seizures, although many do. We were hoping we would be the “lucky ones” who didn’t have to deal with this especially since he hasn’t had any in the first 3 years of his life. However, after an EEG last week, the neurologist confirmed that what Gideon is experiencing are in fact seizures.

I’m still learning about this part of his disorder, along with something else called adrenal insufficiency (which apparently is also affecting my son right now). So as I explain all this with my limited knowledge, please forgive me if I sound stupid (especially to those of you who are much farther along/knowledgeable in this process).

I recorded that video of Gideon’s seizures about 2 weeks ago. For a couple of months now, Gideon would have these random moments in the morning where it looked like he was “falling.”  It reminded me of the moro-reflex. I didn’t think much of it at first because it only happened one or two times when he would wake up. I thought maybe it was low blood sugar (Gideon isn’t always the best eater). However, over the past few weeks we’ve noticed these episodes have been increasing and clustering in the mornings and upon waking from his nap. So we went to see the neurologist.

This was not a fun visit. We love our neurologist. Dr. So is the one who actually was able to diagnose Gideon, when all the other specialists were scratching their heads. We didn’t know this 3 years ago, but Dr. So apparently had a patient 6 years ago that was a true Zellweger baby and so he had a hunch as to what to test for with Gideon.

Our meeting with him was depressing. He gave us all our options for treatment of seizures. Unfortunately, all the treatments seem to have a negative impact on parts of Gideon’s body that are already compromised because of the PBD. For example, there are certain anticonvulsants Gideon cannot be on because it would further compromise his liver. Or if we tried a really high dose steroid, it would speed up Gideon’s osteoporosis and further compromise his already fragile/weakened immune system.

I’m not saying we don’t have any options, we do. But the more I look into each of these medications that will save his life one way, ultimately they will compromise his life in another. Basically I feel like everything comes down to this question:

How do I want to watch my son to die?

With the help of his endocrinologist and the approval of his neurologist, we’ve made the decision to try and treat Gideon’s adrenal insufficiency first with the hopes that the seizures will stop once that part of his disease is treated. It’s worked for some PBD kids, but not for all. To treat the adrenal insufficiency, they use a low dose steroid called sol-u-cortef. He’s been on it for a few days now and so far, we’ve seen a slight improvement.

If that fails, the neurologist is open to whatever we want to do. He told us we could try a specific anticonvulsant that I cannot remember the name of and he also gave us a website to look into called Realm of Caring.

This website is pretty interesting. From my limited understanding, to get CBD oil in Texas you have to be a part of a research study and for now, the wait list for those are a mile long. However, this website apparently helps parents like us get access to medicine like this for people it’s been proven to help. I realize this is highly controversial and I’m not looking to start a debate over it. I just want to look into all the options for my son. From what I’ve read so far, this seems to have the least amount of side effects and it’s been successful for some of the kids with PBD.

Overall, this is a new season of life for us and it couldn’t have come at a worse time. With baby number 3 on the way, I really don’t want to deal with this right now. I’ve spent the past week prayerfully in tears over what to do for my son. Because no matter how we treat this (and even if we didn’t treat this), the outcome for our son is the same…

Death.

So how do we move forward from here?

Kevin and I have decided to continue researching our options and making changes as necessary for Gideon’s seizures as well as any other problems that arise.

As for our self-care, we are weary and worn, but God’s grace continues to be sufficient. We have so much love and support around us. Our family, friends and community group have been nothing less than amazing. So even though we are tired and even though this sucks, God is working even this for good.

Thanks for your continued prayers for our son and growing family.

I’ll leave you with our family’s theme song.

Last November I came down with a cough that would not go away. After two weeks of consistent hacking, I decided to go to the doctor to get some meds. While the nurse was examining me, she asked, “Before we prescribe you anything, is it possible that you could be pregnant?” I replied, “Well, I’m happily married and we don’t use contraceptives, so there’s always a chance.”  After looking at my calendar I told her that I was one day late, but that isn’t unusual for me.

And with that, she sent me away to pee in a cup.

So on that Tuesday, November 17, 2015, I found out that I had a virus and that we are expecting. I was extremely excited yet surprised. Two years ago, my husband and I decided that we were not done having kids, so we have not been preventing pregnancy for quite some time. I think a small part of me thought that I might not be able to get pregnant again since so much time had passed.

I wanted to find some fun way to tell Kevin, but we had ReEngage that evening so I decided to wait for a day. Unfortunately, one day quickly turned into three days. Because we had something going on every evening, there was never a good time to tell him. By Friday morning I couldn’t wait any longer, and decided to tell him before he left for work.

I told him to sit down because I needed to call a home team moment. I should probably mention that “home team” is our code for “I’m about to tell you something that may be shocking to hear. Please don’t get defensive and remember that I love you and we are on the same team.”  Pregnancy is not a situation that I would typically call a home team moment for, but I wanted to make sure I had Kevin’s full attention.

As I pulled my pregnancy test strip from a bio-hazard plastic bag , Kevin’s face relaxed and he seemed relieved. “Oh, you’re just pregnant?!” he said. We laugh now because apparently the bio-hazard bag (which the doctor had given me to save my test strip) sent the wrong initial message.

So we are excited to announce that we are having a baby boy and he is due July 20^th! (Probably a bit later since my kids are typically in no hurry to be born). While we are not sure on a middle name just yet, we have decided that his first name will be Josiah, which means God supports, God heals.

If you are familiar with our story, then you probably have a few questions. So let me write a bit more and see if I can answer them. Since my husband and I both carry a recessive gene for what is called Peroxisomal Biogenesis Disorder, that means that this baby boy does have a 25% chance of being born with PBD, just like his big brother Gideon. But that also means that Josiah has a 75% chance of not being affected, like his big sister Laynie. In light of those odds, we decided not to do any prenatal testing to determine whether or not Josiah is affected. For us, that information would not change our decision to bring him into this world, so we opted out of any testing.

Since then some people have told us we are crazy. Some have lovingly told us we are wrong. Apparently there are many who can’t understand why we would “take such a risk.” The truth is, our perspective is just different and we don’t expect everyone to understand or share our perspective. We truly hope and pray that Josiah is born healthy and free of PBD; however, we believe that God’s grace is sufficient no matter the outcome.

But he said to me, “My grace is sufficient for you, my power is made perfect in weakness.” Therefore, I will boast all the more gladly about my weakness, so that Christ’s power may rest on me.    2 Corinthians 12:9

Looking back over the past three years, we have met some of the most amazing people and have been blessed in ways that we never could have imagined, all because of Gideon’s PBD diagnosis. Kevin and I have seen God do impossible things through our little boy’s life, and we believe that our lives are better, not worse, because of our mighty warrior and his struggles.

Being a mother to a child with special needs has been extremely challenging yet extremely rewarding. And no matter what happens regarding Josiah’s health, God is faithful and will continue to carry my family through every high and every low.

So stay tuned… our family’s journey will be interesting to say the least.