Todays the day

You know I love having a blog! Its my diary, my place were I can scream and yell, and if you don't want to hear if, you can just click off! And when something exciting happens, I have so many friends to tell the good news to!
Things have been going so great lately. We had a great time with family and friends in California! And although the paperwork still makes me crazy, our adoption is moving along more smoothly than I could have ever imagined.
But today has been a rough day, and I'm ready to vent a little. So click off now if you don't want to hear it! (Of course there are cute pics of Jax at the bottom, I use those to soften up whiny posts like this!)
I really, really want our adoption paperwork submitted this week. I was hoping to have everything notarized today and be done, but of course that never happens. The lady who notarized today I didn't like at all. She whined about having to redo stuff that she messed up. I wanted to slap her. We've been signing and notarizing and redoing for two months! So don't even cry to me about it. Needless to say we still have a couple more things before we are totally done.
I've been so excited about how well Jax has been doing healthwise, until I realize that his healthy is still so sick! He did great on our trip, and thats because we made sure we had our meds on hand to keep us sane. Robinol came with us everywhere, and prevented him from needing suctioning constantly!
Tobi continues to be our saving grace as well. We started our round of that when we got home, and he's been doing better respiratory wise. But somedays at night I'm really tired of his "routine", and once again wonder why we don't get any nursing care when everyone else does! I would so love a break from especially his night routine, because its the longest, and I'm always tired already when I remember how much I still have to do for him.
21 meds, most of which have to be crushed because of his ketogenic diet. Shots, nebs, inhalers, setting up night feeds, suppositories, and switching him to his humidifier, which entails switching a bunch of tubing around! And like I said, his healthy is his bowels don't work, so liquid suppositories make him go. Night feeds consist of rigging up a 60cc syringe to his crib so his belly is always venting, because he swallows so much air with his trach. Me and Ray were just saying that going to get Makayla is going to be like a second honeymoon! Although I know after about a day I'll miss the boys terribly! But a little secret, I'm kind of glad I get to pass of Jaxson's cares to someone else for a while!
He had his monthly labs yesterday, and my ped called me last night because his sodium is dangerously low. As soon as she told me I remembered that we pulled his cecostomy out, and his sodium supplement was coming from those flushes of saline! We forgot to restart his sodium supplement when we pulled the cecostomy out. So we added that med to our regimen and avoided going to the ER for sodium levels. Its crazy, I never though calcium, sodium, and potassium could cause such problems, but man they do. Arrhythmia's and other crazy things have landed us in the ER from his electrolytes being out of whack! He gets all those supplements because he loses them in his high doses of diuretics that he's never been able to come off of. If we even try to wean his diuretics his lungs fill with fluid! Antiphospholipid antibody syndrome means a shot of lovenox twice a day he'll need for the rest of his life. So I get to stick my baby forever to prevent his blood from clotting off any more major viens. I'm so sick of calling on bills that are wrong. Why do they have to send out a statement, and EOB and then a bill, all from the same appointment. I get more mail for Jax every day than the whole family put together. I'm so sick of calling billing because they coded it under Down syndrome, and that diagnosis is NEVER covered. Why can't they get it right the first time so I don't waste my time calling everybody and their dog to make sure its taken care of?Of course I'm grateful every day that I have Jaxson, but sometimes its hard to think about how sick his little body will always be. And how much intervention it takes to keep him alive.

I can't wait to have a "normal" Down syndrome child! The girl that's helping me with my adoption paperwork from RR thinks that is hilarious. That I want a "normal" DS child, but you know what I mean. I want to sign with her and teach her to walk! To laugh when she uses those flexible legs to go from sitting to belly by means of the middle splits! You know, "normal" DS stuff!
Anyway, I feel much better now, and here's my sweet, miracle boy to soften the mood back up. I have an awful lot of pics of him sleeping. Probably because he sleeps so cute!