It has been a long and difficult week. We went on Tuesday morning to have the g-button placed so that Molly could get the fluid and food that she needs. We stayed at Medical City Dallas for 3 days and were able to come home late on Thursday. I am amazed at the amount of medical supplies that now clutter our home and we are busy learning the tricks of tube feeding and which supplies we need and when. I know that in a couple of weeks that it will seem very easy and second hand.
We had to reschedule our Botox appt for a few weeks from now, which I am very sad about. Out PT again today discussed how concerned she is about her hips and we know it will not be much longer before they start popping out of joint because she has not been able to move them the way she should.
We also had to delay our neuro appt because of the surgery and she is having more of the startle seizures again. Every time we up the dose of sz med that chases away the seizure, they stay away for a shorter period of time. This time it was only a few days before they were back again. I know that soon we be having another EEG and will be changing med or adding meds.
I will never understand the creul nature of life it kids like Molly. I would do anything to trade places and make it all better. I bargain with God repeatedly, but there seems to be no answer (I know that he has a plan, and I can not imagine what it is, but it is so painful. I cannot image any good from the pain, but hope that one day there will be some)
I will be starting work on Monday and have to say that I am excited. I think it may be the only thing that will keep me from going insane. I need to hear about out people's problems and work on fixing them instead of just fixing our family. I have been listening to a ton of review cd's to try to get my brain back in working order.
Molly will be well taken care of while I am at work. Her dad will be doing much of the work and we have some great great help during the day. We have requested a night nurse and hope to have someone setup very soon. Sleep would be wonderful a couple of night week!
Thank you all for continuing to pray for our family!