Apr 10, 2019 HAPPY BIRTHDAY

Happy birthday to my sweet girls who turned FIVE today! I would have never asked for the journey that age 4 took you on, but my heart is grateful for the girls you have become and the beautiful future that is yours.
Reese had a fantastic day, she is feeling GREAT and has been for weeks now. Her biggest birthday gift was saying bye-bye to her NG tube (enteral feeding). We took it out yesterday, her face is clear and beautiful and she is so proud. She is eating more and more each week, and while her nutrition isn’t quite where I would want it, the effort is there and improving. She is also taking all 32 of her meds by mouth, every day. This is a big improvement, we have eliminated quite a few. She can’t swallow pills so these are mostly liquid, I draw them up in syringes and she swallows them all, morning noon and night. Some taste ok, some taste bad, some taste really bad. In other exciting news, something else went away this week… no more shots!! Reese has received daily anakinra shots for months. We tapered to 3x a week and now they are gone. So far it is going well, hopefully it goes off without any problems. This will be a big win for eliminating immunosuppression.
Reese is seen by many specialists. As you know, the bone marrow transplant team sees her every Monday. She is also followed by five other doctors… GI, pulmonary, dermatology, endocrinology, and renal. Here at Lurie, I have to schedule all of these specialists separately, so there’s a lot going on. (I was spoiled at UCSF, they all stopped by clinic while Reese was getting infusions each week. A luxury, I now realize, and I am extra thankful for the lovely coordinators there who made that happen seamlessly!) But we will get through all of these appointments because all of these great minds come together to make decisions and keep Reese safe.
Reese spent the day at American Girl in Chicago. It was a wonderful adventure… Quinn played hooky from school so she could spend it with her twin and Claire and Nonnie came, too. Then a couple other besties joined us and it was quite the party. By design, we had a very early lunch reservation in the cafe to avoid crowds. And we were the only ones there! So the girls danced and ate cake and shopped. Perfection!

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