A Long Overdue Update

It’s been a few months since we last posted an update.  With Christmas, the new year, and my getting a new job, I seem to have been able to find quite a few excuses to put off writing a new post.  However, I know many people are eager to hear how Adela has been doing, so here we go…

Adela had an absolutely wonderful Christmas.  We visited Nana and Grandaddy before Christmas, had our annual carriage ride around downtown New Bern and attended the Broughton Christmas party.  We came back home for Christmas and was treated to a beautiful white Christmas, but not before getting in a visit to Gramma and Grumpa’s house to see the Caruso side of the family.  To see our house after the influx of gifts from family and Santa, you would have thought a tornado plowed through a toy store and dropped everything in our living room.  Needless to say, Adela was quite excited to have received such a nice selection of toys, books and clothes.

We went in for Adela’s Remicade a few days early in January since she started showing signs that it was wearing off.  We actually were admitted to the hospital on Sunday since she was so uncomfortable just so we could get the Remicade infusion.  While there, we got to see some of the same nurses that we got to know at the end of last year.  The combination of Remicade and steroids helped her to feel much better within a few days.

At the end of January, Mommy took a weekend off and went to Charlotte for a few days of retail therapy with Gramma.  This is actually the first time that Mommy has spent the night away from Adela since she had been born.  To ensure that Adela didn’t worry too much about the missing Mommy, we had Nana and Grandaddy come up to visit and for a special surprise.  We went to see a Thomas the Train musical at Raleigh Memorial.  Adela had a ridiculously wonderful time.  I only spent about half the time watching the show…the rest of the time, I was watching Adela be so excited about the show.

Mid-February brought both Mommy’s birthday and Valentine’s Day.  We had a birthday party for Mommy for which Adela was responsible for helping both make the cake and decorate.  Adela did an excellent job of helping me bake a cake from scratch, directing me where to hang the streamers, and accompanying me to the grocery store to inflate a car-load of balloons.  She got to spend time with Nina, Sabine, and Simone at the party, so she was happy.

Mid-February also meant Remcade time again…six weeks from the last infusion.  This time, about a week before she was due, the effects wore off.  She did OK dealing with it, but it did mean being much more uncomfortable from a potty perspective, more reflux, and loss of appetite.  This time for our appointment, we chose to go to the “infusion clinic”…basically an outpatient infusion room at the hospital.  We aren’t actually admitted for this, so it takes a bit less time.  We were still there from about 8:30 AM until about 1:00 PM, but that’s a bit better than being fully admitted or going through the “short-stay” unit.  To help Adela not be quite so anxious about putting in the IV, she got a little dose of Versed to help her relax.  While we have in the past gone to great lengths to both understand and minimize any anesthesia she receives, I have to say, this time, it was well worth it.  In January, getting an IV started required two nurses and Mommy and Daddy pinning her down while a third nurse started the IV…to say it was unpleasant would be a massive understatement.  This time, however, all that was needed was Mommy holding her shoulder still while the one nurse started the IV.  She stayed awake the whole time but was just a bit calmer and more relaxed.  This time, with the Remicade wearing off a bit sooner than expected, changes were made to her medications.  She’s now getting a more potent dose of Remicade and is on a new medicine called 6-MP that will help the Remicade be more effective.  We have a plan for slowly stepping her down off the steroids with 6-MP taking their place as the secondary medicine.  As with last time, a few days afterward, she has enough energy to be bouncing off the walls.

The following weekend, we visited New Bern for a Broughton family reunion.  Adela visited for a little while with Granny and Papa as well as a few other family members and had an excellent time.  She got to watch Ice Age with Uncle David and Ms. Brandi (their special treat that’s saved only for New Bern).

Adela has a new friend that comes to play with her most weekday afternoons.  Mrs. Joy comes four afternoons a week to work with Adela on her exercises, preschool work, give Mommy time to focus on her jewelry design, and (more important to her than anything else) play.  Mrs. Joy is great and I know Adela has an excellent time with her.  They’ll read, do puzzles, go for walks, play in her pretend kitchen, and more.

And finally, this weekend, we’re starting to work on expanding Mommy’s garden with Nana and Grandaddy having come up to help us build a few more raised garden beds.