The girls have been doing well, and we have enjoyed some new additions to the family- chickens! It's been a lot of fun to have this little project to work on as a family, and they have enjoyed watching them grow. Speaking of growth, Meghan had her growth hormone stimulation test- a most unpleasant experience for her unfortuantely, but we did discover that her body was able to respond appropriately. This is good news, except that it means we are still looking for a diagnosis. We were referred to a different endocrinologist, one that specializes in hypoglycemia. After reviewing some additional labs with her, we were sent home with a ketone meter. We measured her glucose and ketones before meals, and we discovered that she is in a constant state of ketosis! Ketones are the byproduct of protein and fat metabolism, and that basically means that she is relying on her fats and proteins for energy, instead of glucose. The endocrinologist thinks it is a form of glycogen storage disease, and so we will likely re-visit the geneticist to discuss further testing. The good news is that we can treat this by changing her diet, and we now have a better plan for how to treat her when she is sick- with a different formula, and an "emergency plan" on file for the ER to refer to. I am a big fan of having a good plan! Other than that, she has just been working hard at her therapies, and is getting stronger every day.
Addison just graduated kindergarten and we celebrated her 6th birthday. She is growing up, the littleness is slipping away and we are solidly in that phase of parenting that is equal parts challenging (she is strong-willed and energetic- our parenting style is to do the best we can to give direction to that energy and will, without breaking her spirit), and pure joy (she is silly and loves to laugh!). We have watched her personality develop, and she is growing into a joyful, imaginative, strong little force to be reckoned with!
One of her kindergarten classmates has recently become ill with a difficult diagnosis. Since she missed her graduation ceremony, Addie and I headed up to visit her in the hospital. When we got there, Addison didn't hesitate- she kicked off her shoes, and climbed into bed with her girlfriend. The two of them giggled, drew pictures, and played with their graduation caps. Sweet little Ava is battling a disease that affects her kidneys, and the fluids and medications have changed the way she looks, (although she's just as pretty as ever), and she has an IV, which can be intimidating for many people, especially children. Her mom and I looked on, and in that moment I realized how all of the difficult things our family has been through has allowed Addison the freedom from fear- and that freedom in turn allowed her to tenderly minister to her sweet friend, in the only way a 6 year old can- by bringing normal to the abnormal, and light into darkness. In that moment there was clarity- there is purpose in the pain. Jesus has woven the things that were meant to harm, into refining threads of character to be used for His purpose. We may not get to see the entire masterpiece, but even a small glimpse at it's beauty blesses me beyond reason, and gives me strength to continue on, in confidence and peace.