PT Outdoors

Phoebe had PT this afternoon.  Cordelia has a cold and didn't want to go out, so she stayed with my mom.  So it was a little nice to have the one-on-one with Phoebe.  I asked if Phoebe's knees might be looking more "full", and she agreed, maybe, and that it would be worth mentioning to our rheumatologist.  😓 It is kind of hard to tell with her chubby baby legs, so I'm a little worried, but also second guessing myself.

Phoebe rode on the little train roller coaster a lot of times, went on the slide, and then Tiffany wanted her to work her knees by doing even more stairs.  So we went for a walk around the whole building, exploring new places.

We went into an area of the adult PT program, which had lots of exercise bikes and weights and massage tables.  Phoebe got to practice on some stairs.  One side going up was steep steps, and the other side was low-riser stairs.  Phoebe kept trying to turn around to go down, which is how she knows how to go down stairs by herself.  Tiffany was encouraging her to hold her hand and hold onto the railing and walk down the stairs normally.

Then we went outside.  I had no idea, but behind the medical building is a beautiful garden paradise with streams and fountains and trees.  Wow! It was so enchanting.  We saw some ducks sleeping by one of the fountains.  Then Phoebe did her squat and stretching exercises by putting sticks and leaves in the water.  The sun was shining, but there were so many trees, there was lots of shade.  Basically, it was perfect weather and so magical.

Then we walked up some steps by a little cafe, and around the building, and practiced going on uneven surfaces like up a grassy hill.  Phoebe started seeing all the cars in the parking lot and saying "Mama!", thinking they were our's.  But we finally made it back to the front and she definitely recognized my car and got very excited.  It was a new way to do PT, and very fun!

 Look at this beautiful child!

I got a call back later in the day about Phoebe's infusion.  They asked, "Can you come in at 12 instead of 1?"  I said, "No, we are trying to reschedule for a different day entirely!"  Anyway, there still aren't any openings, so my new instructions are to call on Friday the 20th and see if there are any cancelations for the week after.  Otherwise, we have May 3rd at 3, if Dr. B doesn't think that's too long to wait?!

I sent a short note to Dr. B with that update and mentioned we are watching Phoebe's knees.

The Uveitis Facebook group put up a general post of "Comment with how long your child has been fighting....."   People's answers ranged from several months, 1-2 years, to 13, 15, 20 YEARS.  When we were still figuring out Phoebe's diagnosis someone mentioned to me, "well, maybe it'll just be something to put on her college application essays."  I am still just wrapping my head around the long term-ness of how our life has turned upside down.

Timeline check in: It is 12 weeks ago today that the orthopedic told me "juvenile arthirtis".  7 weeks ago today, Phoebe was diagnosed with uveitis.

My mom and sister are still staying with us.  Phoebe is OBSESSED with my mom.  We have also discovered that Phoebe also now says "Mom-Mom" when she means Elmo.  Isn't that cute?