I don’t have any fun or exciting stories to tell, so I thought I’d just share what we’ve been up to lately. I’ve accomplished a lot. I applied for & got Brady accepted for Colorado Medicaid. The state of Colorado is amazing and they make it really easy to get without having to apply and be rejected over and over (Kansas). Epilepsy is considered a disability, so the state will kick in and cover any medical costs that my garbage insurance won’t. This includes prescription meds, hospital stays, therapy equipment, EEGs, doctor visits, and on & on. I don’t fully understand how it all works, but it’s on waivers, whatever that is. We got the letter the other day and it was a huge relief. This will be helpful since we just unexpectedly spent 3 days in the hospital.
We got the Red Card!! We had our appt in Denver with the 2 doctors we needed to see. The receipt of application counts as the card until it arrives in the mail in about a month. The whole thing was a real trip, but people were so nice and I made a great CBD caregiver connection in a guy who was renewing his card. People around here who home grow & make their own tinctures are called caregivers. I don’t know how they can legally sell it, so they basically donate it to people in need like Brady, and if it is a strain that works, we’ll continue to get it from them, but pay for it somehow. But, Colorado Springs just passed a no in-home ethanol law, so now lots of people can’t make their own oils because they were using alcohol for extraction. You can also use coconut/safflower/sunflower/etc oils, and that is totally organic, but I don’t think the removal of the cannibinoids is as strong as it is with alcohol. Again, I don’t really know all about it yet, but people are pissed. I digress.
We switched to a different oil and are no longer taking the Charlotte’s Web. We may have been hasty in our decision to switch, because we only gave it two weeks, but in that time we saw no developmental or cognitive changes in Brady, so we wanted to move on. We put him on Haleigh’s Hope CBD, which is all organic, and also got their THC, but we won’t use that regularly for a while, and only if need be. Today marks 1 full week on it, and we haven’t seen much of a change in him, but that could be because he’s been sick for weeks and we didn’t know it, until we landed in that hospital I had mentioned above.
Did you know that babies can get ulcers? Your baby probably won’t, but mine did, and it was bleeding and he lost about half his body count before we even knew about it. I was proud of myself for not rushing him to the ER for a simple fever and diarrhea, but after a few days of this and then lots of breakthrough seizures, I took him to the peds urgent care up the road on Sunday. He had a fever but everything else seemed fine, still the nurse did a CBC just in case there was an infection. There wasn’t, but his red blood count was nearly critically low, so they made us go via ambulance across town to the children’s hospital ER. They redid the CBC and his count was even lower, so they said he needed a transfusion. That was really scary, and we wanted to give him some of ours, but it doesn’t work that way and so we signed off on it. They admitted us for the night and after determining his stool had blood in it, we knew he had a GI bleed somewhere. The next day they did an endoscopy and found an ulcer just below his stomach. He’d been on a med that coats the gut since the night before in the ER, and the ulcer had already quit bleeding, and there was nothing else in there to see, so that was the culprit. Guess what the cause was…for my 26 month old little baby boy. You’ll probably be wrong. It was from ADVIL.
Kids with seizures have more seizures when they’re teething, because teething causes inflammation in the jaw & skull like any other head trauma does. What do babies do? They grow teeth. What helps teething pain, swelling & inflammation, and upset teething seizure baby? Advil does. Who let her ped & neuro back home know that Brady was getting buckets & buckets of Advil on the regular for the last year or so? I did. Who said it was OK? They did. Clearly they were wrong.
As one of my favorite people aptly described it, this was a “phew moment”. It could have been something more, something bigger or worse, but it wasn’t. He’s off all forms of ibuprofen and has to take 2 meds for the next 2-3 weeks to heal him up and we’ll move on. He only has his 2 year molars left anyway. Even though those are the worst, we’ll suck it up or give him some Children’s Tylenol and ruin his liver instead.
But guess what?! You know how Brady has been in super rough shape since landing in Denver over a month ago? The ulcer could explain all these extra seizures. The seizure threshold is lowered with illness. We assumed it was the altitude, and on the recommendation of the amazing Medicaid lady who also has a child with epilepsy, I had his ped order us home oxygen and we throw it on him when he would have a seizure. We think it’s worked a little bit, but it was no miracle remedy, and now that we are gaining control of the ulcer situation, I really hope to gain more seizure control too. And who knows, the new HH oil is only 1 week in, so maybe in another week or two, or after an increase or two, we’ll get even more control and we can get this kid back on track. I’m going to get very tiger mom on this kid and whoop him back into pre-E shape. Or try and try and try. I’ve got him hooked up with 3 different groups of therapy. That’s another major bonus of Medicaid.
There’s more. I’m starting my CNA course at the end of the month. It’s 3 weeks of class + 1 week of clinical. I’m doing this because the amazing state of Colorado pays parents to be their child’s caregiver. A few other states allow family caregivers, but Colorado is the only one who allows the parent to be the child’s caregiver. An added bonus is that the company I’m doing it through is sponsoring my class 100%, and once I finish the class I’ll be employed by them and will immediately start getting paid, and I don’t have to reimburse them whatsoever. They came out to interview us and determined how many hours per day Brady would qualify for, and that is how many hours per day I will get paid. It’s 7 days a week, to boot. About a month after I take the course I’ll take the state exam, and assuming I pass, they’ll give me a $1.00 raise. Yippie 🙂 I won’t exactly be rolling in it, but it’ll be a big help for our situation out here, and my daily wine requirements.