Thursday, September 15, 2011

Flashback post: Duke visit

We didn't go to North Carolina just so Aurelia could make her little love connection.  Really, we were there for what we thought would be her final stem cell infusion at Duke.  Turns out that we'll make one more trip out for one more infusion next May.  Dr. K said that Aurelia has responded so well to the treatment and she has just enough cord blood left for one more round, it's worth the effort.

We're excited about the chance to get one more dose of these cells that are making such a difference.  Aurelia had a notable increase in vision after February's visit and since this last trip she's gotten a lot more wiggly and seems ready to move.  Of course, traveling across the country to have your child poked with a needle is not the most enjoyable thing I've ever done.  But we make up for it with fun adventures and seeing friends from all over the place.  This last visit we saw friends from Kabul, Texas, and Washington!

This last treatment went really well.  I guess I should clarify that and say that I felt better prepared after our last experiences and went in with realistic expectations.  Baby Hawk had to endure 4 pokes before they were able to place the IV.  She was fussy but fine for all the needles.  She is such a trooper!  But the real secret was music therapy:

Sorry, the photos are grainy.  We had the lights a little dim and I only had my iphone with me.  But you can see how intrigued she is by the guitar.  She loved feeling the vibration and watching Trey strum out songs like "New Slang" by The Shins and the theme song to the Mary Tyler Moore show.  Aurelia has loved music since before she was born.  At a friend's wedding when I was 18 weeks pregnant she showed her good taste in music by only kicking during Stevie Wonder songs.  After we received the news about the hydrocephalus I listened to the Balmorhea song Settler on repeat for about six weeks and I would sing the hymn It Is Well whenever I felt discouraged.  And now she loves Eddie Vedder, especially his ukelele album.  I think she likes his deep voice, or maybe she can understand him better than I can.  This kid loves music.  The older she gets, the more we see music working as a therapy tool (see Lisa's post from yesterday).  It calms and soothes, but also excites and invigorates.  Put on anything with a beat and Baby A starts moving!

In the end, Dr. K was able to place the IV in Aurelia's arm.  This is a big deal for two reasons.  First, no one has ever successfully placed an IV in her arm since her first days in the NICU.  And those both flooded, failed, and caused her veins to collapse.  It's good to have the option of the arm again as placing an IV in her foot or on the side of her head is becoming more problematic the older she gets.  Second, Aurelia had a PICC line in her arm in the NICU after her IV's failed which has caused her to have some sensitivity issues.  She hates having her arms straightened, rubbed or generally touched.  She was very resistant to having her arm straightened to look for a vein, let alone poke it with a needle and then leave it straight for 2+ hours.  It took 5 people to keep her calm and restrained until the IV was all set up.  But in the end, she managed just fine.  She continues to surprise and amaze me.  Can't wait to see what these stem cells do!

No comments: