Tuesday, January 29, 2008

Just Another Update (and some pictures - of course!)

Cold, warm, snow, cold, rain, warm. We can't figure out what the weather is doing here in Tulsa!! Nathan is doing pretty good. We had a scare last week with his leg. The strap from the sling for the lift got caught on a part in his stander and pulled on his leg pretty badly. It was swollen and he cried and cried, even if you acted like you were going to touch it. We had an x-ray taken and, fortunately, no break! But we had to keep him in bed for two days to let it heal. It was hard just to turn him, poor guy! It seems to be doing much better the last few days and he's able to get up without any pain or problem. Now, however, he's fighting a sinus thing. We don't think it's an infection because he hasn't really run a high fever on a consistent basis. His lungs sound fine, just lots of secretions coming from the head and scabbing in the nose. We are being extra cautious right now as far as getting him out of the house and having people over. Our nurses, therapists, teachers - everybody - has been sick with one thing or another. LOTS of SMA kiddos have been sick and, unfortunately, a few have passed away. We continue to pray for all of the SMA children and their families as well. For healing and a CURE! I never thought I would be so scared of germs or getting sick, but it could be a matter of life and death for Nathan. So being OVERLY cautious is something that has become a part of our daily life. Thankfully, Nathan has made it this far into "Sick Season" without a major illness so we're keeping our fingers crossed he can make it to Spring. And then we'll go crazy with fun! Needless to say, we haven't made it to the Veggie Tales movie yet since I want to make sure he has absolutely no problems before we take him out in public.

Although we aren't getting out much, Nathan is very busy. We are still meeting with our physical therapist and the rep from Majors Medical Supply to get his power chair completely adjusted. We are hoping to meet with the speech therapist again soon about 1) the eye gaze communication device and 2) using some switches for his computer games (which he already does sometimes). He doesn't seem that interested in the computer stuff with switches - maybe he just needs some guidance and tweaking as far as the right kind of switch to use??? The teacher is still coming once a week and he loves these sessions! There will be a rep coming by either this week or next about a portable lift, which we need desperately. The ceiling lift in his room can only get him into/out of the tub, his stander, his Kid Kart and his Power Chair. We need a portable lift to take him out in the living room to lay on the floor or on the couch and to go outside to get into his swing or the pool. He's gotten way too big for us to try and lift him!

We had our meeting/tour of the PICU at St. Francis Hospital and it went very well. The PICU Clinical Manager showed us around, introduced us to some respiratory therapists, nurses, doctors and answered/asked us lots of questions. We got a good feeling about it and she said they would definitely listen to us as far as Nathan's care. Of course, until Nathan is actually hospitalized (which we hope never happens again!), we won't really know the level of care and exactly how things operate. Regardless, it really helped ease our minds and at least we know what we will be walking into. Becky, the PICU Clinical Manager, was also very helpful and said she would make sure she would assist us in any way she can with the concerns we have about Nate's care. On Sat., Feb. 2nd, Trey and I will be attending a Community Tour for the brand new PICU, which is part of the new Children's Hospital at St. Francis. We were told the rooms are huge with a bed and bathroom in each room and it is much more "parent friendly". That all sounds great, but our main concern is Nathan's medical care and luckily, we feel much better about that also.

Here's a few pics. A couple of Owen where he actually looks small (only because he's in a big chair) and a couple of Nate (one with his Vest on).

Thanks for checking in !