Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Sunday, February 13, 2011

Thank you

I'd just like to thank everyone who has posted Axel's button on their blogs. The closer our visit to Shriner's gets, the more nervous I become. Reading the report from his MRI certainly doesn't help. (although looking up the meanings of all the big medical terms certainly gave me something to do!)

Axel seems to actually LIKE his neck brace, and is more than willing to put it back on after a bath or eating. This makes me think that he feels safer with it on, and clearly is comfortable. He still has just enough movement in this brace to worry me.  I'm hoping when we get to Shriner's he'll get a different brace.

Really, we can't get to Shriner's soon enough. I just want it done and over with. I don't even want to take Axel out in public right now for fear he will get bumped into or jostled. As it is he ran into one of the dogs the other day and got knocked over (they collided coming around a corner) and I about had a nervous breakdown right there on the spot. He wasn't hurt at all (that I could tell) and was more worried about why I jumped so quick to help him up, but then when I got to him decided I should let him get up on his I would an accident victim. I really didn't know what to do.

Checking on him at night, and seeing how he sleeps is no less worrisome. Even with his neck brace on he manages to contort himself into positions I can't imagine to be comfortable.

My prayers for now are that 1) we can keep him safe until he has surgery 2) that Thursday just hurries up and gets here already and 3) that he has surgery as soon as possible. The sooner the surgery, the sooner we can stop worrying every any time he's on his feet....or asleep....or eating....or in the car....Oh the car scares me to death. What if someone rear ends us or smucks us? Oh...that would be horrible for Axel. 4) that we can get everything arranged at home to keep the ship afloat!

Thank you again for praying for our little prince!


Ellen said...

Hi Leah,

I had some thoughts about your upcoming trip that you have probably thought of but in case not... You may have some significant emotional challenges with Axel on this trip. He has little abstract language still and has not been home long. The simple act of packing, getting on a plane with you alone (leaving behind Dean and Angela), checking into a hotel may trigger all kinds of fears about where you are taking him next, who he will live with next etc. You know him and will know whether there is any way to try and explain to him. Maybe using Skype while you are away to show him his room, his dogs, all waiting for him may help? I can remember travelling with my then newly adopted 4 year old. It took several trips, well over a year and the development of decent English before he was certain that he would be returning WITH me from any trip we took. I thought a little forewarning may help if he has any reaction to the fact of the trip itself. Good luck with all of it.

Leah S. said...

Ellen, thanks so much for this very useful comment. This is actually something that has been on my mind for several days. I'm very worried about this. The last time he got on a plane I took him away from everything he knew. I think I will write up a social story for him, with LOTS of pictures, including pictures that show us coming HOME. One problem is, we may end up staying out there for surgery, but if we do Dean and Angela will be joining us. My poor every confusing and scary for him. Makes me cry just typing this.

Ellen said...

Hi Leah,
Axel sounds like a terrific kid, bright, loving, flexible and up for an adventure. I know this is not what he has in mind (nor you) but from everything you have said about him he will do fine. The first few days will be rought, no way around that. Hopefully he will be drugged enough that he will not have great memories of it. He will adjust to the halo and life will go on. My son had a frame on his leg for 8 months. Not nearly as restrictive as a halo but still surgery, pin site cleaning, adjusting etc. Easier in that he is cognitively typical and had been home 2 years. I did do a book with the whole sequence of events which helped. He could also use it to explain to his class what would happen as he returned with the frame on. The photo board is a great idea. Bring along a version including surgery and halo just in case. I wonder if all things considered it would be better for him to go, return home even for a day or two and then have surgery (if this is a financial option?). Anyway, Axel is well loved, he has a family, he has a mom who things ahead as much as possible and he will get through it. And so will you. Although that first sight of him post surgery- man, you start to think "what have I done?" although you know it needed to be done. I remember how quickly it all became a fact of life, working around the frame, care, turning screws etc but now when I think about it my stomach turns. You will get trhough this too.