While the grandparents were visiting from Iowa our good friend, Lyn Leach came to visit and spend time with the girls, primarily to help out Emily. They had a great time singing together and sharing stories.
I really don't know where the last week of February went, it was busy though. And then we sprang into March with a surprise for the girls- our friend, Jared came to visit. He's the guy who walked across America to raise awareness and gather registrations for Bone Marrow *Be The Match* over 4 years ago and we met him one day while at an apt at UNMC, shortly after Emily had a huge set back and he walked back and stayed with us and visited her in the hospital. We have remained friends ever since and missed seeing one another when we were on different coasts at hospitals with #SIOD issues. We had a fantastic few days together- this time out of the hospitals!
Now to then not so good: last night Pumpkin- Emily's bed buddy had a little accident and today we found out she has 3 broken toes and a very sore leg. And although Emily's episodes have subsided some and turned from every day to now every few days- they are still there and not fun.
Today is infusion day and right before we went in she had an episode and then it took 4 pokes to get her started and labs drawn- no fault of theirs- Emily is a challenging poke and the vascular team was called in to help navigate with ultrasound. It took nearly 3 hours because she kept getting so hot and about passing out- now onto a 6 hour infusion of IVIG and flush.
Never a dull moment around here! That's okay though. Emily is still here with us and that is what really matters. The aunt and uncle from Iowa come this weekend- it will be nice to have them here to help out and keep the eight year old distracted.
