First and foremost, we are now in teenage land and extremely busy with the taxi stage of life. Facebook has taken the place of many of my family updates, as well. Also, I am so BLESSED not to be sitting in waiting rooms and hospitals with tons of time on my hands to do nothing BUT update the blog, while Aubree is sleeping or having a procedure done. AMEN!
Secondly, I suppose I don't update as often, because we are past the point of "living" with PVT on a daily, weekly or monthly basis. This is a place I didn't think we would ever get to at times, and something I truly do not take for granted. So many others are not as blessed as Aubree has been. I have friends whose children have had several failed attempts at the Rex Shunt or other types of shunts. I also know adults that are not candidates for shunts and have to live with the affects of this condition without many treatment options. I praise God that Aubree's shunt is open and that she does not have to live in fear of when the next bleed will happen. My heart breaks for families that are faced with this reality and I keep them in my prayers daily.
While I know that there is a possibility that someday the shunt could narrow or close and that there could be challenges when she gets married and decides to pursue starting a family, we will cross that bridge when we come to it. We leave for her 5 year post Rex testing and checkup next week, and I must be truthful, it always makes me a little nervous.
Which reminds me of a verse:
“So don’t worry about tomorrow, for tomorrow will bring its own worries. Today’s trouble is enough for today."
So that is exactly where we are in Aubree's PVT journey...today. We are living for today and not dwelling on what happened in all of those yesterdays. I can't change anything about the past and I can't do anything about uncertainties in any area of my life for tomorrow. Yep. Today is a pretty good place to be. The only time I try to revisit those yesterdays, is when it can benefit someone else going through a similar situation. That is the blessing out of the whole situation...more for ME than for them!
I have had the privilege of communicating with parents from all across the U.S. and several other countries, regarding PVT and the Rex Shunt. Some of them have found me through the Parent Advisory Board at Lurie Children's Hospital, the PVT Facebook Group or from this blog. I have gotten quite a few questions, regarding PVT. Everything from procedures and testing to dealing with every day life with a chronically ill child. This has inspired me to take this blog in a new direction.
While thankfully, I only have yearly updates about Aubree's health, I thought I would start answering some of the questions by posting about different lessons that God has taught me along the way. I pray that I can continue to be an encouragement to others who are still in the midst of dealing with PVT.
If you have any questions that you would specifically like answered, please feel free to email me. While some medical issues are really kid specific, I would be happy to share how we addressed issues in our circumstance. Even though I might not update here often, you can always email me, or friend me on Facebook. If you send a Facebook friend request, please jot a quick note with something about PVT, so I know why you are sending the request.