Yesterday was Gideon’s follow up appointment with the ENT. When we saw him three weeks ago, we discovered that Gideon had a chronic build up of fluid behind his ear drum. They prescribed him some meds and he was to be seen back in 3 weeks to discuss & schedule tubes.

Yesterday’s appointment was supposed to be just a formality- check the ears and schedule the ear tube surgery. However, we were unprepared for what the doctor had to say..

I think unpredictable is a great word to describe my son. In fact I think unpredictable is a great word to describe PBD…as well as life in general.

After looking into both ears the doctor was extremely surprised- one ear was 100% clear and the other was 80% clear. He said he was shocked because it’s very rare that a patient will surprise him. Yesterday, Gideon was that patient.

So we will go back to the ENT in 6 weeks just to make sure his ears haven’t filled back up.

My take away lesson from yesterday is that most things in life are unpredictable. I think that’s why Scripture teaches us not to worry about tomorrow. Often times we have no control over the circumstances that come our way- we CAN however control our response to them.

Philippians 4:4 says, “Rejoice in The Lord Always..” Hard truth, yet effective, appropriate, and necessary for all of life’s unpredictable circumstances…good and bad.

Thanks for taking time to ask me more questions!! I love talking about my little boy and family.

1) Did you know about Gideon’s condition when you were pregnant?

No. I opted out for all prenatal testing. My pregnancy with Laynie was completely healthy, so I saw no need to test when we were expecting Gideon. When he was finally diagnosed at 7 months, we were told prenatal genetic testing would not have done us any good because his disorder is so rare. A more specific test would have needed to be done.

2) Which parent is responsible for Gideon’s genetic mutation?

Both. There are so many different kinds of mutations within the peroxisomal disorder umbrella. Sometimes it could be one parent’s mutation passed on; however, in our case, Kevin and I are both carriers of a mutated recessive gene. If you remember 7th grade science, you’ll know that means Kevin and I have a 1 in 4 chance of having a child born with PBD with every pregnancy.

3) Is Laynie affected by PBD?

Maybe. She could be a carrier of the mutated gene. She has not been tested yet because she was 3 when we got G’s diagnosis. Since she’s not directly affected, we didn’t think Laynie needed her blood taken/tested right now. This will be something that she (and her future husband) may want to be tested for before having children of their own.

4) If you were to get pregnant again, what would you do?

 If/when that happens, then I’d be a mom to three blessings instead of just two.

5) How should I interact/play with Gideon? 

Just treat him like you would any other kid- talk to him, touch him, love him. If you have facial hair you’re already a shoe-in for his favorites list. I always tell people to place their hand under his so he knows for sure you’re there. Chances are, he’ll reach out and try to touch your face. (If he sticks his finger up your nose, just go with it. Lol)

6) Why does he rub his eyes all the time? Is he sleepy?

 If he’s actually rubbing his eyes then yes, he’s tired. However 90% of the time he’s just putting pressure on his eyes. Apparently kids with multiple sensory impairment do this. I like to joke that he’s just blocking me out so he can concentrate. 🙂 It also could be that the light is too

7) Which grandparents carry the mutation? 

We don’t know, they have not been tested. And to be honest, we don’t think they need to be tested. This mutation is no ones fault.

I really enjoy answering your questions. Please don’t be afraid to ask. All parents (special needs or not) would rather you ask than assume.

These are some questions I get a lot regarding our circumstances with Gideon. If you ever have any questions, please don’t hesitate to ask. You won’t offend or upset me. I love talking about my son, my family, my marriage.. I’m pretty transparent in all areas of my life.

1) What is Peroxisomal Biogenesis Disorder?
It’s a terminal genetic disorder. Basically every cell in the body has peroxisomes. They have a specific job- to oxidize long chain fatty acids. Gideon’s peroxisomes don’t do their job efficiently- causing developmental delay. It’s left him blind and severely deaf. All you science junkies- click Here to read more.

2) How long will he live?
2-20 years is what we were told once he made it to a year. (Although when he was originally diagnosed we were told he wouldn’t live to see his 1st birthday.) Doctors really can’t say an exact amount of years because it affects each kid so differently.

3) How much can he see and hear?
He has severe hearing loss in both ears. He hears low tones best- probably the reason why he loves his daddy’s voice. As far as they know right now, Gideon is legally blind with light perception. Meaning the only thing he looks towards is the light.

4) Do the hearing aids help?
Yes. But he hates them. Imagine your first year not hearing much. And then all of a sudden everything is amplified. (We’d probably hate them too.) I have not seen a huge improvement yet but you can tell he’s listening while they’re in…at least for the first 5 minutes. Then he rips them out.

5) Does he sleep through the night yet?
Sometimes. When the Grandmas occasionally stay overnight they say they can ear him talking between 2-4 am. Honestly I’m not sure how frequently he wakes up anymore. Back I’m December Kevin and I made the decision to shut the door and turn the monitor off. It was a decision that was necessary for my ability to function and to be a sane mom. Gideon does not have seizures so we’re not worried about him during the night. We’ve designated night time as his time with The Lord.

6) Will he ever walk?
I think so. Some kids with PBD start crawling around age 2 and walking around age 3. But because of osteoporosis and the digression of the disease, he may need a chair someday.

7) Is there any way to cure his disorder?
No. Every cell in his body (from head to toe) is affected. Currently no cure or treatment exists. Although thanks to the GFPD, research is now being done.

8) How does Laynie handle all this?
She’s the best and because she doesn’t know any different, she treats him so sweetly. Just like any other big sister would…but better. 🙂 She knows that someday he’ll go home to be with Jesus before we all do.

9) How are you and Kevin?
We are doing great given our circumstances. We live for today. We’re not in denial about what the future holds…but because we know Who holds the future, we don’t dwell there. I believe because we both have a relationship with Jesus Christ, Gideon’s disease has brought us closer together instead of ripping us apart.

10) Will you have more kids?
I don’t know. Kevin and I have a 25% chance of having another child with PBD with every birth. We are not actively trying to have a baby, but we realize we are not truly in control of that. (No matter how much we’d like to “think” we are.)

If you have any questions at all please feel free to leave them in the comment box below. I’d love to answer them as best I can!!

God bless!!