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| Joy :) |
Yesterday marked one month home for Lucy. It's been wonderful to have a "normal" schedule of work, school and weekends to relax.
Lucy has been feeling good since we've been home - lots of energy, eating well, no throwing up. We are averaging about one doctor's appointment a week:
- to check her swallowing functionality (questionable - there may be some aspiration into her lungs - like VERY small amounts, but still a potential factor)
- To follow-up with GI (uneventful visit - going to try to drop one of her maintenance medications that was supposed to keep her from throwing up...hope it goes well!!)
In the next few weeks, we have hematology (to see why her red blood cells were so low and not reproducing fast enough), a chest CT scan, pulmonology and ENT. There are also some patient advocacy conversations I'm having with the hospital based on how some things happened during Lucy's hospital stay...oh and of course a pile of bills to review and pay and prescriptions and nebulizers to pick up and administer. We are down from 7 different medicines when we left the hospital to 3 though, so that's awesome!!
School has been going great - she's happy to be back and her class is happy to have her back full-time. HUGE plug for the Mounds View School district - they have been so amazing to work with during all of Lucy's health issues.
We feel a little bit like we missed the Christmas season this year. We bought and wrapped gifts (thanks mom for wrapping 90% of our gifts :)), sent the majority of our Christmas cards out and spent time with friends and family, but it honestly took most of our holiday break to unpack, finish laundry and mentally recover from the ordeal that is 2 months of sickness and 10 days in the hospital.
Thank You so much for the gifts, care packages, thoughts, prayers, phone calls, text messages, meals and love you sent us - it was felt and appreciated!
