I love to write. I don’t write much anymore though, mostly because I homeschool our kids and I barely have time to watch a 30 second reel much less sit long enough to put my thoughts into words. However, since summer is here, it seems like a good time to update everyone on Gideon’s condition.

At his last appointment in April, Doctor G said that Gideon’s blood work and numbers all look great for someone with a peroxisomal disorder. He said Gideon even physically looks better. He asked if we were doing anything different at home. The only thing we’ve added to his regime are fulvic minerals and we increased his dose of Omega-3’s.

Over the years, Gideon has come off of pharmaceutical medications that were initially recommended. He takes Charlotte’s Web Hemp Oil for seizures and a few other natural things like liquid multivitamins and probiotics. Dr. G also has Gideon on alternating IV’s for detox and to support his liver and immune system. He gets one IV every 5 weeks.

Gideon’s condition is still degenerative. Over time, no amount IVs or supplements will stop his peroxisomal disorder from doing its worst. But from our experience, the things we have been doing for the past few years, have completely changed how this kid is able to function. I mean, the last time he was hospitalized was in May of 2018. And the last time he was on hospice was November of 2019. Since then, he’s still come down with different illnesses. But we’ve been able to manage them at home and with Dr. G…which is a huge win for us.

Another recent win is that Gideon slept 7 nights in a row without waking up once! I can’t remember the last time we got a full week of uninterrupted sleep!! (I think it’s because of the warmer weather; but no matter what has brought on this great sleep, I pray that he keeps it up!)

We are now getting ready to attend our annual Joni and Friends Family Retreat! So in about a month, I’ll be posting all the photos of our experience there. (I’m posting the link to our fundraising page below if anyone would like to help us financially get there!)

https://secured.joniandfriends.org/fundraiser/6157808

Thanks to everyone who keeps up with our family and the journey we are on. I try to post regularly on our social media sites because it’s easier than writing but I know some of our family and friends don’t always use those outlets. So for those that don’t, here’s a recent video of our sweet boy. Enjoy!

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I did all the things right tonight.

Gideon got his Charlotte’s Web Hemp Oil, he got his bath, his magnesium, his lympathic massage… I checked his 27 night-time-routnine-boxes. But it didn’t seem to matter. You see, Gideon was up Sunday night so I just knew he was gonna be tired and sleep all night Monday night ..

Boy was I wrong.

That stinker woke up in the middle of the night laughing and I was salty about it. Here’s a 4 minute video of Gideon’s Midnight Shenanigans. (He’s got a thing for my hair.)

Irregular sleep is just one not-so-cool part of Gideon’s diagnosis. He’s done SO much better in the past few years regarding sleep. Now, when he wakes up, he goes back to sleep within an hour or so. But on some rare occasions, he reverts back to his first 6 years of life (where being up for 3, 4 or 5 hours in the middle of night was a normal occurrence). 😭

I’m not as angry these days about him waking up. I know my days with him will be considerably shorter than they will be with my other kids. In times like these, I remember my friends who have already lost their children to horrible genetic conditions and diseases. I can only imagine what they would give for just one more sleep deprived night with their child.

So as I hold Gideon close, I thank God for these hard nights. And then I pray for my friends whose arms will never again hold their children this side of heaven. I can’t even fathom.. 💔

“Its hard to believe my baby is 12 years old.”

Lots of parents say that. In fact, turning 12 is a milestone that is typical for most of us, right? But for Gideon, he’s in a unique category. But it’s the kind of category that you don’t want to be in. You see for Gideon, every birthday is a miracle. And so we will never cease to celebrate.

I don’t blog much anymore, so if you’re new here, I’ll give you the quick backstory.

My pregnancy with Gideon was normal and there were zero concerns. However, from the moment he arrived every doctor suggested that something was wrong, but no one knew what was wrong. With the exception of him failing his hearing test, all the other tests came back normal. He just had several minor abnormalities that didn’t fit neatly into a diagnosis. So we took our boy home and prayed for the best.

Because Gideon was not meeting his milestones, we were referred to several specialists. He was 8 months old when he was finally diagnosed with something called Peroxisomal Biogenesis Disorder. This is a rare, degenerative disorder that so far has left our little man legally blind and profoundly deaf. He doesn’t walk or crawl, and we have been told that his life expectancy could range anywhere from 2-20 years.

Gideon is totally dependent on us to meet his every need. I like to say he’s my 12 year old infant. He will always need help with any and every task. He needs someone to feed him, change him, move him, bathe him….to be his eyes and ears.

So when I say, “Its hard to believe my baby is 12 years old,” I really do feel a rollercoaster of emotions around this day. I honestly never thought we’d make it this far. I can’t tell you how many times I’ve cried out to God for Gideon. I’ve cried for his shortened life expectancy, his health, his sight, his hearing, his seizures, his sleeplessness….I’ve shed more tears over this child, than anything else in my life.

And while I am beyond grateful for another year with him, my heart still hurts that his life isn’t just a little easier. Oh that he could just walk…or see…or communicate…or just feed himself…or sleep through the night consistently. Any ONE of those of those things would make such a difference in his life… and ours.

But that’s not the story that’s being written. Gideon was given a unique set of challenges and we were given the gift of caring for Gideon. And while we feel the weight of his daily needs, he seems pretty happy in spite of them. To him, it just means more time with the people he loves.

I tell him every day what a blessing he is to us and to the world, but I know he’ll never fully comprehend just how impactful his life has been on us and everyone he meets.

And since he’ll never fully understand, I’m going to write it here for y’all.