Best Day Yet!

It was a very good day for Alyssa, in fact, the best in a very long time. It started with a typical "Alyssa move." She called Strong and told them that she'd enough procedures in the last week and didn't want to go through with the scheduled surgery to place her home catheter in her neck. Luckily, they agreed that she could wait until next week--she did have some persuasive arguments that her body needed to heal and she had not really had any good days since the surgery, with blood transfusions and stomach issues, etc., in addition to recovering from the surgery itself. So, she had a break and was able to just go to the hospital and get her blood checked. She will still go tomorrow for the Soliris treatment, but they will do it through an i.v. instead of a catheter. That is how the first infusion was done prior to surgery. Even though she is a difficult "stick," the phlebotomist managed to get her blood without her even feeling it. She wants her to transfer to the infusion area for tomorrow!

Alyssa managed to go for a walk outside today and walked back up to 6-1600 to say hello to her favorite nurses, especially Mrs. Olsen who so patiently answered a million questions for Alyssa both before and after surgery! She also ran into Staples for a new folder for all her new medications (dad's wasn't pretty enough), stopped at mom's office and now has three friends over helping her wash and blow dry her hair. A very full day on day 8 post surgery! Walking through the hospital today, with her not knowing the route, seemed really weird, but very thrilling. This has hung over her head for so long and everyone has worked so hard to get her to this point, it just doesn't seem real yet. We dismantled her PD machine and all of the paraphernalia that goes with it. We still have about 40 boxes of fluid in our basement that we will donate to free up lots of space!! Even with all of these physical changes, and Alyssa's 12 visits to relieve her bladder a day, it is hard to believe we have made it to this point. It is really an awesome display of humanity (in the form of Jen's complete selflessness and unbelievable generosity), medical advances (transplant and Soliris) and perseverance (Alyssa).

It is always a little awkward to brag about our children publicly, but we wouldn't be telling the whole story if we didn't acknowledge our daughter's bravery in going through all she has faced since January 2009 to date. She rarely complains and has very seldom shed any tears. I'm embarrassed to say that she sailed through this with much more grace and fortitude than I could ever have mustered. She is truly amazing and has learned so much about what is important in life, as well as the practical lessons this nightmare has taught her. She has now become her own advocate, learned the PD process, (which she took to like a fish to water even though it is too complex for the majority of dialysis patients to use), learned to give herself shots every 2 weeks and to keep track of a multitude of medications for high blood pressure and kidney disease, as well as doctor appointments, and even managed to be the number one fundraiser for the Kidney Foundation in 2009, and one of the top fundraisers this year. She even spoke in front of our church earlier this year and explained about a-HUS and her kidney disease. She hopes to become an advocate for peritoneal dialysis and help others get through difficult times and believes that she can use this experience to benefit others, and turn a negative to a positive.

Watching her interact with her friends and be her chatty and energetic self is such an indescribable high ----it gives us hope that our Alyssa is back to herself again. She spent so many months having no energy and being nauseated and unable to go out and enjoy life at what should have been a very precious and exciting time in life. Thankfully she has gained from the experience. As someone said to me, this is the stuff of what life has to offer at its fullest--the best and the worst. I am optimistic that the worst is behind us and thankful that the best has brought us to this point!! Thanks for sharing these highs and lows with us and supporting us through it all.
Deb