Quick post

Quick post while the munchkins are in bed and before I hit Jax night routine and go to bed myself. Life is so crazy right now, I know that's how a lot of posts begin lately, but its true!
Moving a big family to another state is not easy, and we really need to find Ray an apartment. The few he looked at last weekend are either expensive, or in a dumpy area. His co-worker said to try a little farther south, so when he gets some free time, that's what he's going to do. He comes home Thursday night for the weekend, and I know he can't wait. Not only does he miss us terribly, but he's getting tired of living out of a suitcase. I know that would make me crazy!!

Tomorrow is Jax neuro appointment to discuss the VNS. I'm anxious to see if this would be a good thing for him, even though it does mean another surgery, and two new scars. He is having more seizures, and they are lasting longer, and I'm thinking it may be a good time to stock up on some diastat in case of an emergency. Its been a long time since we had to use it, but there was a time when we were going through it like candy! I wan't to get this VNS in, before we get to that point again!
The only problem is our Make a Wish trip is less than a month away. No way do I dare book a surgery right before a trip, because Lord knows how Jax handles surgery's! So we'll have to book it for right when we get back, which makes the trip all the more special!
I'm so excited for the trip, and for Jax. There is no way we would be able to get Jax to Florida without Make a Wish's help. I'm even getting nervous that its even going to work with their help. I'm starting to think that another adult coming with us may have been a smart thing! Jax needs his car seat for the plane. Thankfully Arina doesn't. We also have his special needs stroller, I'm worried about that being damaged on the plane. I just have to make sure they know to be careful, that's a four thousand dollar stroller! Along with a concentrator, feeding pump, suction, and the kids, its going to be interesting! Thankfully my home care company is shipping formula and supplies there, so we don't have to drag so much stuff. And there should be a vent and oxygen tanks waiting for us at Give Kids the World. I'm also just worried about the plane ride in general. You know how well I do on planes! The trip to Ukraine was not without Valium, and plenty of panic attacks! I hate planes, and I've never been on one with my kids before.
Yikes!
Wednesday I take Jax to his ped. The kid is making me crazy! We know something is going on, but so far he's not giving us any answers. He's super puffy, even in his hands and arms. His junk is not going away, even after starting Tobi. I know he's third spacing fluid, but why. He's just not getting sick like he should be if this is happening. It may sound like a good thing, but I'm worried he's going to tank all at once! I mean, even with all this extra fluid, so far his oxygen need hasn't changed, although he is working harder and breathing faster. So Wednesday she is going to give him a head to toe, and do lots of labs. We just need some answers!
To top it all off, I've got a sore throat tonight.
Fabulous!!