Settling in - hopefully not for too long

I'm sitting on the hospital bed with Tanna and Sulwen as we wind down for the day (hopefully). I started my day off by visiting Peet's Coffee so I could enter the hospital room double-fisted with lattes first thing in the morning. Nancy is the lead latte lady lately, but I am trying to augment her visits by an early morning run.

Sulwen had a fitful night, but her side effects were manageable. Mom and Dad slept a bit too. She was ready to go this morning and was already playing with her Mom when I arrived. I brought a few fun socks for her - all mismatch socks and she liked checking them out.

Her Dad got to work. It is quite amazing that he can sit (and sleep!) in that narrow chair for 8 hours and work on the Internet. Although he is giving me the thumbs up in this picture, I know it can be wearisome and challenging to sit all day in the hospital room while Sulwen goes through exams and daily encounters with all kinds of medical personnel.

I also had lunch duty today - the menu was quinoa, lentils, broccoli, cauliflower, kale, chard and sweet potatoes. Sulwen, Tanna and I had a picnic on the floor with Mozart playing in the background. It was great to see Sulwen bounce and sway with the music between grabbing with great gusto a bit of everything on her plate.
Later in the day, she had a bath, a nap and then a visit from Nanny who played with her "unplugged." They were able to unplug her IV for a short time so she could move uninhibited. And move she did! She crawled around and even tried to stand on her own.

The day signified settling in to what could be called a routine day. Her specialists make rounds, spend a short time with her and her parents to review status and plot next steps. Sulwen's fever and rash have been kept at bay. She has some side effects from the steroids but they are manageable. The next benchmark will be on Friday after she finishes this round of IV steroids and transitions to oral medication.

A typical day here isn't as bad as it could be...the hospital room smells like chai and lavendar (a real Drapkin touch) and we can listen to Mozart and have picnics. But it wears on everyone to be surrounded by such illness and sadness, to be confined to a room indoors. The family is hoping with all their hearts that they can go home soon. But the last six weeks have taught them that every plan can change, hopes can be dashed and the road to recovery is not straight and narrow. Their faith and inner strength carry them and it has an even greater presence in this room than the chai and lavendar.