Busy (and Stressful) Week Ahead

We have lots going on this coming week. Tomorrow Jack has an appointment with the local ortho for an x-ray. I don't expect we'll see anything of concern, but it will be the first x-ray since we've had him up in his chair ... so, I'm a little nervous. Per the instructions of the St. Louis ortho - we still can't do anything with Jack that will flex his back (while I don't like the guy, I do heed his advice, as long as it makes sense to me). This means we can't put him in the sling for his lift system yet because that will clearly flex his back. The bummer about this is that Jack is a two person lift and unless there is someone at the house to help Kristi put him in his wheelchair (like a therapist), he is still spending the majority of his day in bed. The recovery period for a spinal fusion is one year - so it won't be until this summer until we can start using the lift system.

Speaking of his bed .... I decided it's time to get rid of the hospital bed. I like the fact that we can elevate Jack's head and move the bed around the room to give him different views, but I hate the fact that I can't lay in bed with him. Plus, it makes me nervous when we turn him on his side to change diapers, clothes, etc. that there is so little room between him and the edge of the bed. I have the fear of him falling off the bed. This week Jack will become the owner of a queen size sleep number bed from Select Comfort (they deliver it on Wed). It's got all the bells and whistles - we bought the adjustable frame so that we can still elevate his head and his feet too. It's got a built-in massager (I'll be checking that out!) and, of course, the ability to change the firmness of the mattress. I also feel like this is the best thing for managing the areas on his back that are susceptible to pressure sores. The added bonus is that it's a queen with dual controls, so Jack gets one side and I get the other! Just so you don't get weirded out with the thought of me sleeping with my kid ... I usually only sleep with him when he is sick ... much easier to suction 100x a night when you are right there as opposed to traveling up and down stairs as many times. It’s also nice to hang out with him in bed and watch T.V.

The stressful part of the week is that Jack will be getting a new nurse one day a week, starting this week. Kristi has always worked 4 days a week for us and we had a different nurse one day a week. Our one day a week nurse has been a revolving door the last 4+ years and we've had, at best, one or two nurses that I've been comfortable with. Due to Jack's fragile state following his surgery, we chose not to have any nurses in our home except Kristi. Since the agency won’t pay a nurse to work more than 50 hours a week, Kristi has been working 4 1/2 days during the week and Mark has worked from home one afternoon a week (Mark’s employer – Edward Jones has been very supportive of Jack’s situation - kuddos to them for being such a family friendly company). However, Kristi is getting burned out (understandably) and she needs to cut back her hours here. Jack is a helluva lot of work and he is still (in my opinion) very fragile. The nurse we have starting this week is someone who has been here before and someone who I am fairly comfortable with. I just hope she appreciates what Jack had done this summer and understands that she must be extremely careful when she moves him. I'm so incredibly protective of Jack since his surgery. That kid went through hell and he deserves to be treated like a king as far as I'm concerned. I only want nurses in my house who genuinely care about Jack, not nurses who are just here to collect a paycheck. Jack is too precious to settle for anything less. It is with great apprehension that we open our home to a new nurse. She orients with Kristi on Tuesday and she starts Friday. I am sick to my stomach nervous leaving Jack with someone other than Kristi. Wish us luck!

I also have an IEP meeting with the school district tomorrow (after the appointment with the ortho) . . . oh joy! These meetings are such a complete waste of time. Part of me wants to sever all ties with the school district and just take the position that Jack is home-schooled. I’m sure they wouldn’t mind … it would save them a lot of money. But, occasionally we get a good therapist and I don’t want to deprive Jack of the experience just because it’s easier on me. I’m not even at home when the therapists are here, but I have to sit through these meetings and listen to people who don’t have a clue as to who Jack is or what his potential is tell me what they think he can and can’t do or what he does or doesn’t need. Having already been through the “process” with Hilary, I’ve learned to take everything they say with a grain of salt. As I recently told a friend of mine, I’ve come to realize that if you randomly took people out of the general population and subjected them to the testing our kids have to undergo – a whole hell of a lot of the population would qualify for services. I don't really care what label the “professionals” attach to Jack . . . as far as I'm concerned . . . he is PERFECT!

Have a great week everyone.