Phoebe's POV

Phoebe and I have been talking a lot about her experiences at the hospital.  I think it's great to see what she remembers and what she thinks is important to help her process all the medical trauma she's been undergoing at such a young age.

Our conversations have been repeating since a few days ago when I brought up a specific detail, I forget why exactly.  We were talking about stickers they put on her, like the two big stickers they put on her hand and elbow pit to numb them up.  I also mentioned that she got a sticker on her toe (the heart rate monitor, it lights up red) and then they put 3 on her back.  I forget what all those ones are monitoring, her breathing and such I'm sure, but those ones are stuck on with little clear adhesive patches.  They peel right off, unlike all the tape and stuff they put to hold the IV, which needed a spray to remove easily.  In fact, I was able to remove them myself--- it kind of peels off the skin in an uncomfortable, but probably not really painful way.

While Phoebe was attached to all the monitors, and there were wires hanging down from her, I was telling her that she had a "tail" just like her lovie Snuggle Puppy.  Once all the monitors and stuff was in place, Phoebe was fine with everything.

Anyway, bringing up the back stickers and the tail triggered a lot of memories for Phoebe.

She points to her back and says "BACK!" except it sounds more like "BUTT!" so she might actually be saying "butt."  But she knows she definitely had stuff stuck to her back there.  She has been bringing this up several times.

We talk about how she had the blood pressure monitor on her leg and it would squeeze her with a hug.  Phoebe says "HUG."

Phoebe says "DOG!" and then laughs hysterically.  She says "UP!" that the dog went up on the hospital bed.  She says "SIT" that the dog was sitting with her when she got poked.  She says "OW" that she got poked when they put in the IV for her Remicade.  I am trying to use the word Remicade now... I had just been calling it medicine for her arm/hand, but I realize we use the word "medicine" so often, I don't want her to associate all medicine with the infusions.  She says "EAT" that Mama got to feed the dog a treat.  Then she sticks her fingers in her mouth and says "AARUM RUM RUM" or something like that, basically making Cookie-Monster-gobbling-cookies -noises to say that we watched Sesame Street.

The last 2 days Phoebe has pointed at her knee and said "OW."  Nothing happened involving her knee at the infusion.  I also don't really think that her knee is hurting now.  It doesn't look swollen to me and the joints aren't warm to the touch.  I don't think she has injured herself recently.  So I am finally starting to think that maybe she is remembering the previous pain she had in her knees, which were the focus of earlier doctor visits, when Phoebe was slightly less verbal.  Oh my!  Is that what she is communicating?  So hard to know!

Phoebe and I have been going through this conversation before she falls asleep.  I can see that it is important to her, and that she is trying to have a narrative that explains the things she happened.  Sometimes I say things like, "Was that scary, when you got poked?  It hurt, right?  You were very brave." or  "Your knee hurt because you had arthritis.  The medicines are making your arthritis get better."  Phoebe listens very carefully to all the things I say and then brings up her own one word interjections.  Sometimes we talk about her getting shots, and she points to her leg.  We have been playing with bandaids and Phoebe has been putting the buzzy bee on her own leg.

We have also been trying to prepare to see Dr. N, the uveitis specialist on Friday.  I had emailed him a question about eye drops through Stanford's MyChart, and guess what.... no response. I'm hoping Phoebe will cooperate for him, we've been trying to practice putting our face in a cardboard box and counting to 10.  Phoebe used to be only able to put her face in it for 4 seconds.  I'm hoping she can make it to 10 now.  But if it takes us forever to get seen again, and it encroaches on Phoebe's naptime, all bets are off.  Hopefully Dr. N will impress me more in his patient care this time around, stay tuned!