Two years ago today T had his first MRI, the one that confirmed the plexiform. Two years, 6 additional MRIs, 7+ trips to Salt Lake City from Cheyenne, several research studies and 1 drug trial later we find ourselves in Salt Lake City. Who could have guessed 2 years ago this is where we would be now? While finding out T has an extensive plexiform knocked me back; that MRI to confirm Dr. Bellus' suspicion of a plexiform, put us on the path we're now traveling.
Travis thoroughly enjoys playing with all his new toys (and brothers' too) from Christmas. He had physical therapy this week and has made great strides in the past 1.5 months. He's excited that he'll be getting a Shriners bike in the next several months too. His physical therapist talked with his docs and Travis will be getting a new brace for his left leg. The physical therapist thinks T will be able to get around better and feel more stable with a brace that flexes/bends at the ankle, his current one has a rigid ankle. Travis will get fitted for a new brace next week and they usually take a few weeks to make and get in. I wonder what design he will choose this time?
January brings the end of the 15th course of rapamycin, which means a MRI and exam with Dr. Viskochil. The MRI is slated for the 5th and the exam on the 6th. Keeping our fingers crossed for a stable plexiform and he remains healthy through the next few weeks. December is busy enough on it's own between 2 birthdays, Christmas, our anniversary, kids and our activities; however, it's been a month of sickness in the house. Scott was down with pneumonia for several days (better now), Nolan battled bronchitis (also better now), and we found out tonight Barrett has pneumonia. :(
Since Travis is on an immuno-suppressant, the pneumonia is scary. The drug trial has him (and all participants) on a preventative antibiotic for 3 consecutive days each week while they are taking the trial medicine to help guard against a certain type of pneumonia. The doctor B saw today said to bring T in if we see ANY sign of illness; fever, cough, fever without cough, etc. Hoping this is the end of illnesses in our house for a while so we ALL can resume and enjoy our normal activities.
We truly appreciate all the support, prayers, and thoughts for our family over the years. This is not only Travis' journey, but a journey that affects our entire family. This year has had it's share of ups and downs, but we are right where He wants us to be for T and our family. We have several decisions to make in 2012, will T start Kindergarten (really, can he be that old?!?), what to do when the drug trial ends, etc. Fortunately, we have the opportunity to make these decisions.
No comments:
Post a Comment