Good morning everyone. ☀️ I find myself basking in a little sunshine today (and I hope you are too!) and thinking about Dylan this morning. She has been on my mind lately and I figured maybe I would do an update on the blog to get you all a little info on how things are going for her during this lovely springtime.

Dylan continues to have her lab results taken regularly and for the most part her values are fairly stable. A little over a week ago Dylan faced her first significant illness challenge (that we know of) since her surgery where something was going around and she came home one day feeling chills and aches. Getting sick is bad for most of us, but when the host of immunosuppressants Dylan is on are combined with illness it can be a challenge. I believe she weathered this ok, but with her labs that week there were elevated values in one of her enzymes which was a cause for concern.

These values need to stay down in the normal range for transplant patients, but when your body is fighting something off then they can increase. The medical team at Stanford was concerned that the elevated metrics could initiate or be the result of another bout of rejection. We all were waiting for the results the following week to hopefully show the values decreased and that this was a spike due to her being sick. Luckily that seemed to be the case as her numbers came down, and for now Stanford is not looking to do another stay in the hospital with biopsy to check the liver cells. 👍

Dylan has been getting out for some walks, and continuing to try to do normal things as much as possible. Of course it is tough when you have to be careful being around other people, and as flu season is still going on there is some concern with her exposure risk. Dylan also is trying to keep up with her medications…but due to the vast number of prescriptions and time sensitive intervals with dosing it is hard to keep up! Basically she needs a lot of help from family to keep on track and I’m grateful for all of the support and love that come from those around her.

Dylan also had some days where plans with family and friends had to be canceled because she just ended up not feeling well enough. This is a new pace and motion to life where from day to day things need to be adjustable and I’m sure it can be a bit frustrating for her. I hope that as things slowly continue to improve that she will be able to not have these challenges so frequently. Still there will probably always be some element to life as a transplant patient where she needs to listen to what her feelings are telling her and play it safe with activity level. Dylan was pretty active before surgery with swimming, social life, and family so hopefully soon that can begin to return too.

Time is creeping up on Dylan’s six month anniversary to her surgery, so it is also good to keep in mind how much progress she has made in that time. Although eating is slowly improving, there are still big challenges ahead with nutrition to get her metrics back to where the doctors would like to see them. All in all, we have much to be thankful for. Blessings to you and all of your loved ones. ❤️

-c

Please consider donating to the Children’s Organ Transplant Association in Dylan’s name. 100% of each contribution to COTA for Dylan is available for her lifetime of transplant-related expenses.