WOW...it's hard to believe it was a year ago this week that Lydia first entered the hospital. Looking at the journal, I see that we haven't provided an update in over 6 months and, yes, no news is good news!
We thought we'd just provide a quick update on how things are going. Lydia continues to be in remission with her aHUS and has blood work and visits with Dr. T every other month. We've had a few scares this year with some numbers being out of normal ranges and one time her showing some symptoms. They were reminders that the disease is still active in her body but the good news is that her body is able to stay ahead of it at this point. The blood work always tells the story, so we just play it safe in these situations and get follow-up blood work and have been grateful to see things stabilize in the follow-ups.
Lydia continues to be on meds to help keep her blood pressure stable and encourage red blood cell growth. She is starting to understand this is something she will need to manage all of her life - the daily meds are a reminder (she asked how long she'd have to take them and we told her we didnt' know - next question was, "the rest of my life?").
Due to the wonder of Facebook, Lisa joined an aHUS community where Lisa and Lydia have become friends with a girl about Lydia's age, Anna, who also has aHUS, and her mom. Lydia emails her regularly and even sent her a birthday present last month. It has been a great outlet for both of them, has also allowed us to see how the disease has its own uniqueness in each case and provided some additional information in Lisa's relentless research on the disease.
The great news is that unless you knew of her situation, you'd never know she was managing this...we're heavily into softball right now getting ready for our first All Star game next week and we've been doing a lot of swimming and having friends spend the night! We've got an even greater appreciation for summer this year and are especially looking forward to our annual camping trip to Yogi Bear park that we had to cancel last year. Even Josiah has gotten to be in a play this summer, so the whole family is already enjoying the summer fully! Each day is truly a gift!!!
In closing, we want to continue to thank each of you for your continued prayers for Lydia's healing as well as the ways in which each of you continue to show your caring...a "how is Lydia doing?" to the participation in the Kidney Walk in May to our long-time friend Kevin Miller doing a 3-day, 300 mile bike ride in Lydia's honor for the Make-a-Wish foundation (atypical Hemolytic Uremic Syndrome is on the Make-a-Wish list of diseases) http://www.wishmich.org/Page.aspx?pid=503&frsid=5185 . You've been our strength and encouragement showing us how the love of God, family and friends can be bigger than anything this life brings us!
Please continue to pray for a cure for this disease in her lifetime and for more positive news in her next visit with Dr. T on July 13. Thanks again, may God bless and may YOU enjoy the gift of today!!! :)
