Tuesday, March 29, 2011
As we prepare for our upcoming trips, our week has been very quiet...exactly how we like it. Avery has recouped her energy, her appetite and her counts. This is great for us and we look forward to more things coming back. Her eyelashes are just starting to sprout and we can't wait for the hair on her head to start coming back in. We worked hard on her new big girl room this past week and we accomplished a lot. We moved our bed into her room and left off box spring so she has a low level, big girl bed. She LOVES this. She hasn't slept in it yet, as we are missing the railings to keep her from falling out, but she loves to climb up in it and play. We are looking forward to returning from NY and letting her sleep in there like a big girl.
We leave on Sunday morning for St Jude and will spend the entire week there. Her MRI is on Monday, but the LP is on Tuesday along with her hearing test. Wednesday and Thursday appear to be open now that we have moved the Flow Study to Sloan Kettering. Friday morning she will go in to Lebonheur Children's Hospital to have Dr Boop insert the programmable piece into her shunt in her head. We believe this is a fairly simple procedure, but nevertheless we will have to stay the night and not be able to drive home until Saturday afternoon. Sunday will be a huge unpack and repack day for us as our flight leaves for NY at 7 am on Monday morning.
We are excited and anxious all the same....so easily this trip to St Jude could turn out differently than we are hoping and that is a very heavy weight on our hearts. We can't seem to envision a life any different than the one we lead now so we are taking that as a sign that for once, things may go as planned. That being said, now is not the time to cut back on the prayers people. Please pray that our results at St Jude are good and that the surgery on Friday is short and sweet with an easy recovery and very little pain. Please pray that the amazing work they are doing at Memorial Sloan Kettering is the answer to all of the prayers we all have spent the last 15 months sending up to the powers that be. And lastly, please pray for the miracle that this tough little girl certainly deserves.
Posted by Jeremy, Jenn and Avery at 7:13 PM