When Christmas is around the corner and you think WTF?

These past couple of months have been a lot busier and more challenging that I would have wanted it to be, but it could always be worse. I could be bored.

Since my last post Seby has had a MAJOR regression in feeding. He has developed a psychological aversion to the spoon. It used to be the bottle, but now we have switched him to a hard spout sippy so there's no aversion to the bottle because, well, there isn't a bottle anymore.

So what do you do when your kid regresses 6 months? You get another therapist. One that specializes in feeding, and unknowingly makes you feel REALLY incapable as a parent. We haven't "fixed" his regression, but he will take food off his nubby stick which is at least a zillion times better than not taking anything, but unfortunately we are now in a position where we have to get Pediasure from Canada on our own dollar because we ran out of our Wic Supply. So he may not be gaining any weight but damn it if I'm going to let him lose any. Needless to say that has put a serious cramp on our Christmas budget, but you gotta do what you gotta go. Maybe I'll wrap up this shipment and put a bow on it so that he has something to open even if he really has no clue what Christmas is about.

I did really great this year for the most part. I kept myself from bursting into tears in the Target Toy aisle. His birthday wasn't that successful, but eh, baby steps. It's hard when you have a 2 year old that can really only play with infant toys, and even most of them are too difficult for him. His leg tone has improved slightly since getting the OT Jumper, but his arm resistance is still really REALLY low. He can't hold his bottle up, or bear weight on his arms without screaming. But he CAN hold is sippy while laying down by himself. And that is an AMAZING milestone, we take 6 steps back and 1 step forward in a completely opposite direction. That's just how Seby rolls. So trying to find any Christmas presents for him that aren't just stuffed animals or that has a weight limit of 20lbs is extremely difficult, so he got a lot of shoes from us this year, to fit over his AFO's since we really need to be much more diligent about him wearing them and keeping them on, he's great about kicking them off.


Medical Updates:

• hearing aids working well, he occasionally pulls them out but it's not as often thanks to The Hearing Halo Headband

• Endocrinology - same meds, no change. Possibly may go on growth hormones in February, but we'll hit that obstacle when we get to it, and pray it won't turn out to be a 5 car pileup in the process.

• Kidney - Scheduling testing in February to make sure his 1 kidney is functioning properly and there's no reflux happening, which I'm pretty sure there isn't but better safe then sorry

• We are trying to get medicaid to pay for diapers since he's on disability via SS, and with all the Pediasure he's drinking he's going through diapers, but we'll see. I think the age is 3 for Medicaid to pay for it, but I'm hoping they'll bend the rules a little for us.

• Medical Equipment - Should arrive sometime in February, and his Dynovox Maestro talker should be here in January sometime. This is all contingent on if Medicaid approves them (cross your fingers) but lord knows this will open Seby's world like nothing I could ever give him.

I've been in nesting mode for some god forsaken reason. I've done more house cleaning in the past 24 hours than I have in the past 24 months. I hate the idea of starting a new year with the house in as much of a shamble as your life is, haha. I mean everyone knows my life is a mess, no need to make everyone else SEE it. The house looks great though, and it helps keep me calm by having something to do that is in no direct relation to the kids. Some people work out, I attack the bathtub with a steel brillo pad. Plus if we DO get all this medical equipment for Seby we needed large areas of space so that he can actually USE it. So it was necessary.

Things I'm excited for:

• Christmas to be over! And for the kids to hopefully be happy on that day if nothing else.
• My birthday cake! Just cuz I like cake!
• Seeing my family for Christmas dinner.
• Repaving the front walkway. (yeah I'm serious) It's for Seby's benefit, no bumps for his wheelchair
• Having a week long vacation with the hubby and kids, baking, cooking and watching TONS of TV.
• Seby more than likely sleeping through the night since he'll be so exhausted

On the topic of Sleep, we were not approved for a medical bed for Seby. In the state of GA it's impossible to get approved a Sleep Safe bed or a bed of that variety, so we had to take it into our own hands. Mena got a new princess bed thanks to my Dad for Christmas, and we took her old bed and Rob added plexiglass panels to it. It's pretty friggin awesome. He's been sleeping 8 hours straight, and although 2 year olds should be sleeping more than that, since he's not mobile, that's as much as he's gonna get. It's been amazing to get that much solid sleep at a time. Down right miraculous. Also, Seby has mastered 2 signs. More and All Done. It's so friggin cute watching him try to communicate, as long as he's not frustrated, then it's just, well, frustrating. Hurry up Dynovox!

On that note, it's about time for me to do dishes, and then take a nap with my boy.

Merry Christmas everyone, and Happy Holidays!
Remember just how lucky you are, life can always be worse.

~The Cooks