Daphne Turns One!

Monday Daphne turned one!  We had a very quiet birthday at home.  Here is her first birthday interview. 

We have still been very busy trying to settle her potassium issues though.  Tacrolimus, her anti-rejection drug, has this side-effect with her.  Unfortunately we can’t decrease her tacrolimus yet or her liver numbers immediately respond to that.  So instead she gets more meds to deal with the potassium.  She gets sodium bicarbonate (AKA baking soda) and kayexalate.  Initially we were giving the kayexalate to her directly down her NG tube.  But after a call from Dr. Yap of high potassium on Thursday morning’s bloodwork we are now adding the kayexalate to her formula, waiting for at least half an hour for a brown precipitate to form at the bottom (thereby removing the potassium from the formula) and giving her the formula off the top.  It makes me feel like I’m in chem lab again. 

Although her bloodwork numbers have not been perfect, Daphne has been a very happy baby lately.  We have been incredible busy getting bloodwork done for her.  Since Thursday there have only been two days that she has not gotten blood taken!  We are very glad she has a broviac; she rarely needs to get poked now.  It can be easy to get discouraged with all these appointments but we do remember how far she has come and feel very blessed.  I also think of other families who live far away from Edmonton and again I feel very fortunate.  We can easily go to the Stollery for lab work, clinic visits and even admissions if we have to without completely upsetting our lives.  Plus, because we live in Edmonton, we have so much help.  We are so thankful for all the help.  Brad’s mom and aunties are constantly helping us out watching Rowan, helping around the house and bringing us food.  I don’t know what we would do without them.  We have also received meals and even flowers from our church family these past two weeks which has been so thoughtful. 

Rowan enjoying a ride in our new minivan. 

Anyway, more about the birthday girl…she has had an incredible first year, filled with lots of very tough moments, but also filled with lots of love.  And although all we are still busy trying to resolve a lot of her medical issues, I feel very confidant that she will get there.