Life in the dark

Apparently, I still have a lot to learn about dependece on God. You'd think I'd be further along in this area by now, and goodness knows, I've had "opportunity" after opportunity to practice. Yet, everytime another "opportunity" arises, I flub it up. argh. So, this weeks "opportunity" was this: AnnaLyn's neurologist wants her to have a spinal tap so they can analyze her spinal fluid and determine exactly which neurotransmitter, if any, she is deficient in and how deficient she is. He believes she has TH (tyrosine hydroxylase) deficiency, however, she did not respond to the treatment as he had expected. He ordered the test in November, around the time she started her decline. It was scheduled for January, but cancelled by the hospital...some problem with a member of the sedation team. It took months to be rescheduled, but was finally rescheduled for today. In the mean time, she goes on and off her medication, ramping up, ramping down, going on, coming off...(she has to be off the meds for 2 weeks prior to the procedure to make sure they get a correct analysis) She is very suceptible to side effects, so every time we go on and off meds, it is hard on everyone involved for weeks at a time. Also, because of her recent decline, she has been put on hold for Speech therapy and Occupational therapy because she not only isn't making progress, but is losing skills. The plan has been to pick her back up for these therapies when we know more about her prognosis. For example, if she is going to continue to decline, then we go with the approach of maintaining skills we have and attempting to regain some lost skills. If medication will help, then we pick her back up when she is at the appropriate dosage and feel we can make the best progress. It was VERY difficult to place these therapies on hold, but we know this is the best for AnnaLyn for the time being. With that being said, we were very excited that we were finally going to, hopefully, get some answers soon. Nervous about the test, yes, but more hopeful, and very much willing to get it done and overwith! OK, now the dependent on God part. AnnaLyn, who hasn't had an asthma attack since August, had an asthma attack Monday night. She had to go to the ER (which is another story entirely, because nothing is EVER just easy, is it?) They did a chest x-ray and it was clear, so they gave her an increased dose of albuterol (and oh my goodness, she didn't go to bed til 1am when I put her in her room and closed the door. I found her upside down in the bed the next morning. WILD!!!) and some prednisone liquid, which she promptly threw up on the nurse. The ER doc said she should be ok for the procedure on Wednesday. Tuesday we followed up with the pediatrician, who also said she should be ok for the procedure. I called the neurologist to give them a heads up and let them know she is on prednisone and to ask if that would affect the analysis of the spinal fluid. No, it won't, but you need to make sure to tell the sedation nurse when she calls about the ashtma attack. So I did. And they refused to do the procedure. "But her lungs sound great, she isn't short of breath anymore, she's taking steroids and inhaled steriods, and her chest x-ray is clear....No, we cant do it. We'll have to reschedule. I decided later that evening that if her lungs still sounded good this morning that i would take her anyway and make them listen to her and see that she's ok. After all, they sound good now. But I prayed that God would intervene with my plans if I was just trying to do things my way. HE did. This morning she was wheezing worse than ever, and sounds like she may have pneumonia!!! I didn't take her. I haven't heard from the nurse yet on when we will reschedule, but if history is a predictor, it will be several more months. ARGH. I hate being in the dark! I hate not being in control. Why cant people just do things my way? It would be so much easier. haha. Ok, you know I have to end with a funny. So, Chris, of course, was out of town this week during this whole ordeal, as is most often the case now days! He doesn't like it, but I think he should enjoy it. Please, someone PAY me to get out of town for a few days. Even if it is for work. Still, he's a family man and prefers to be home everynight. We've been at the ER for a couple of hours, wrestling a 4 year old to get a 10 minute breathing treatment, holding her still to take liquid medication, being thrown up on, trying to get her to be still for the x-ray after they doped her up on albuterol, trying to explain to the staff that she has autism and doesnt understand all their instructions....Now, time to take wild baby home. I called Chris from the parking lot to let him know AnnaLyn was ok and we were on the way home. There was a lot of background noise, so I asked him, "Where are you, it's loud on your end of the line" "Oh, yeah, Im at the Cheesecake Factory in Kansas City". I just wanted to punch him right in the nose!