Playing in the sunshine

Jaxson is doing very well since his hospital stay. Our biggest thing is that he lost nearly 3 lbs during the whole ordeal. 3 lbs wouldn't be anything for you or me, but on a 25 lb almost 6 year old, its way too much. I about died when I saw the numbers on the scale, and my ped nearly died when she saw his little body. Because of his SVC syndrome making his face and neck puffy, its hard to see in pictures just how scrawny he is right now. He is tolerating the continuous peptiman jr in his J tube. We won't switch to G tube until we find out about fixing his nissen. The next aspiration episode may not be as easy for him to handle as this one was. Occasionally he will get cranky if his g-tube is clamped for too long, so I'll unclamp it and wrap a newborn diaper around the end to drain.

Its still really nice here, after a few days of rain, so I decided we needed a trip to the park. I was all excited to get Jax on their handicap swings. I had already decided that tubes can be taken off for a few minutes to get some sunshine and fun. I had plans to have Mondo take him down the slide, something he's never done before.

We waited patiently for the handicap swing to become available. People ignoring the handicap sign, and the obvious handicap child waiting.

I put him in and started pushing, and the little stinker does this.........


He was out cold! Without much swinging, and no trips down the slide! My plans were a bust!

Of course Arina had a grand ole time. This girl loves the swings!

Trying her hardest to get back up that slide, to no avail!

The buyers may close on the house on Thursday, which means we may close Friday or Monday. I'm getting that pit in my stomach. I'm not sure if its adventure, or fear. I've never in my life lived outside the Salt Lake valley. Its an adventure to me, but adventure has a different meaning with a child like Jax. My homecare company here wants me to find a nationwide homecare company that my new insurance covers, so I can leave their equipment here, and get equipment from the new company to take with us. The only company I can see that is nationwide is Apria, and I've had multiple people tell me not to use them. I'm not sure what to do. Not many companies I called do oxygen. CCS medical, and Edgepark, neither do oxygen. I don't want to get stuck with a company that is going to be hard to work with. I fight enough for the stuff Jax needs, I don't need any more.

My only reservation about moving was leaving my ped. And while its the only thing, its definitely one of the biggest! No one knows Jax like her, and it will take a while for anyone to learn him and how he ticks. And as much as I hate the hospital here, there are people that know Jax well. When we move, every hospital we go to will be brand new. No one will know Jax. No one will come in and say, "hey, there's my Jaxson". Oh man its a scary thing! Reassurance from people that have made a huge move with a medically fragile child is greatly appreciated!

I'm a nervous nelly right now!