Oh Monday, Monday, Monday. I hated your guts this morning. You redeemed yourself around 11 and things turned around for the most part, but you still wear me out.

Yesterday I thought we were turning a corner. Grayson didn’t vomit at all, all day- the first vomit-free day since his surgery. But early this morning, I woke to the sounds of him retching in his crib. When I went to get him, the poor thing was staring aimlessly at the ceiling, his face, jammies and crib sheet covered in regurgitated Pediasure.

I stripped his soiled clothes and went to change his diaper- bone dry. Like clean and dry as a brand new diaper straight out of the box. And he’d had that diaper on 12 hours. Hmm. As I was making coffee, worrying about dehydration and the fact that I had hours before our doctors’ office opened, he er, definitely needed a new diaper. Along with that fun, he wet his diaper- a lot. So what did he do- hold it all night? This would be great if he was potty-training, but it was just another unnecessary thing for me to worry about right now!

A few hours later, while G was napping, I got on the phone to get information on a program we are trying to get G enrolled in (more about that later). After being on hold for 48 minutes, I was told I had called the wrong number for the program we want. Of course I had. So I called the right number (I think) and was on hold for 18 minutes before I got a voicemail. I left a message, but this is a government agency. I’m not holding my breath for a return phone call.

So then, after being on hold for over an hour with no results, I get a call from our medical supply company, who we have Grayson’s feeding tube supplies through. They are either a bunch of crooks or a bunch of idiots. For the past two months, they have called with an amount we supposedly owe them before they send Grayson’s feeding bags and tube extensions. And they refuse to send the supplies before we pay them (umm…don’t most companies send a bill?). Today they claimed we owed them an $84 copay because we “haven’t met our out of pocket max”. Which HELLO- since our insurance year started, G has had a 10 day hospital stay, an EEG, two surgeries, and almost 4 months of being on a feeding tube. We have paid every bill that’s come in. And you think we haven’t met our out of pocket responsibility?! I immediately called our insurance company who assured me we didn’t owe anything for the supplies, and there was no copay. Whew. And then my husband called the company back. I don’t want to know what he told them- ha! but our month’s supplies should be shipped tomorrow.

Ya’ll. Having a special needs kid is expensive. And before I get any further into that, and of course it goes without saying, but Grayson is totally, completely, 100% worth every. single. penny. And more. We would sell every material object we have and our kidneys too if we had to to get him the treatment he needed. Thankfully it hasn’t come to that. But dang, it’s expensive.

It’s both horrifying and incredible how fast thousands of dollars can be spent on medical needs. In addition to all the doctors and hospital bills, Grayson is on five prescription meds and four supplements, running us several hundred dollars a month. We spend another several hundred a month on formula. We average 2-3 specialist appointments a month with a $50 copay each, not to mention $8-$12 to park at each appointment. Our kid is also, as you know, an ER frequent flyer, which runs $350 a pop. And then there’s little things like laundry detergent. With a kid that throws up every single day, I do A LOT of laundry. And then of course there’s the wine I have to buy to keep me sane- just kidding (sort of).

We are abundantly blessed with the means for these expenses as well as things we don’t have to pay for. My husband has a good job with a reliable paycheck and full health insurance. We have amazing, wonderful, generous friends, family and a church who have helped us out financially. We don’t have to pay for Grayson’s therapy, and his therapists bring equipment and toys for us to use at home. And God provides, even in times where we don’t know where the money is going to come from.

But still. We need some relief. So we met with an attorney who pointed us in the direction we need to go to apply for some help (hence the hour I spent on hold this morning). I pray that this works out and we can get financial help as well as respite care. It will probably be a long, frustrating process, but if it happens it will be worth it. Just like this little munchkin is worth it…

We are working on the proper use of the straw!