It's been about a month since posting last and thankfully it's because not much has been going on around here. In the last blog post about Evelyn it was mentioned she was nauseous and not eating much and therefore her sugars were low. On the whole she was pretty miserable, tired, sore, nauseous and steroids were probably at their worst. I can happily say she has had a turn around and we are able to take a deep breath - over the last couple weeks Evelyn's energy has increased, she's eating and overall feeling better. And dare I say steroids are a tiny bit more manageable? Or maybe they are becoming more 'normal' :). These pictures are from steroid week -
She's very indecisive so it's easier to let her pick what she wants to eat :)
Just wanted to be outside but didn't have the energy to play
Her low blood sugars have also come up - they are no longer in the dangerous range; not quite in the 'normal' range for her age but just under which our doctors are happy with. Because her sugars have stabilized Evelyn thankfully does not have to get her NG tube put back in - what a huge relief this was to hear! We continue to check her blood and poke her finger every morning and hopefully in the weeks ahead the sugars will settle in the normal range. A big lesson we have learned in this journey is to never take 'normal' moments for granted and to be thankful for the little things. Evelyn is doing great overall right now but her mobility has decreased so things like stairs or hills are tough for her and she often needs help. But sometimes she surprises us and her determination shines through (seeing her big sister do it also helps :)).We have a large hill in our backyard which she hasn't been able to climb in months but recently she has conquered it all by herself! :)
We cling to and appreciate these moments because so easily and quickly they can be taken away. God has been so good to Evelyn and He continues to watch over her. We know no matter the circumstances He holds her in His care.
Last week Thursday Evelyn had another bone density test - she will be getting this test done every 6 months. Unfortunately there were a lot of tears this time around - we have realized Evelyn is a bit hesitant when it comes to male doctors and nurses. Last time she had a female nurse do her test but this time it was a male doctor so it got off to a bad start. Thankfully it's a quick test and Evelyn was a trooper - she cried through most of it but laid still enough to get the pictures needed and was rewarded with bubbles and a huge handful of stickers.
We received results this week at clinic and her bone density has gone down but its not something we have to worry about or put her on another medication for yet.
I'll end with this picture - our superhero :).
Lindsey and Stephen
Psalm 46:5 "God is in the midst of her; she shall not be moved; God will help her when morning dawns."
