Friday, February 26, 2016

February Marches On

It's been awhile...  It's been a dreadful winter...  It's been a busy semester...  It's been lots of things...

We made some progress on lots of things.  But, we've also taken some steps backwards.  All in all, I'm looking forward to the spring, and spring break can't come soon enough.

I start with Bun Bun (where else?) and rhinovirus.  Yes, the typical virus that exhibits common cold symptoms.  It started with a running nose, as it always does.  It started with Bun Bun.  Then, it turned into a bad sinus infection which led to respiratory distress and high fevers in a child with really tiny sinus passages.  So, we ended up first in the ER, then was immediately admitted in the PICU.  All this happened during the blizzard of 2016!  After 3 days on high flow oxygen support, Bun Bun started to feel better and was finally discharged after spending another night for observations, you know, just in case.  When Daddy finally brought her home, there was over a foot of snow everywhere.  It would have been Bun Bun's first fun in the snow, but obviously, this was not to be.  I think we were more disappointed for her.

John and I were suppose to leave for Santa Fe that last week of January.  I was really looking forward to attending the Keystone Symposium on the biology of Down Syndrome.  John was just looking forward to some time off from work.  The blizzard changed my travel plans and delayed my trip for a day.  With Bun Bun just home from the hospital and 婆's badly sprained wrist, Daddy decided to cancel his trip all together and stayed home.

The symposium was fantastic!  I learned a tremendous amount of neuroscience and gained greater appreciation for Down Syndrome.  Some of what I learn was despairing because I know that will be on the road ahead for Bun Bun.  On the other hand, there was optimism in what we can learn about cancer and Alzheimer's Disease because of what we understand about Down Syndrome.  I will save that for another post.

Upon returning home from Santa Fe, I found Bun Bun in respiratory distress again.  Back to the ER and PICU and high flow oxygen... again!  The rhinovirus persisted.  Same as the week before, Bun Bun stayed in the hospital for 4 days.  At this point, she had missed 2 weeks of school.  Poor girl also shared her sickies with Daddy, 婆, and me!  January eventually rolled over to February with everyone in the household coughing, sneezing, and suffering from stuffy noses.

Three somewhat good things happened during all this time.

1.  We converted Bun Bun's crib back into the toddler bed.  She is doing fantastic with it!  She loves it that she can climb into and out of it freely.  When she wakes up early, before everyone else, she climbs out, grabs a book from her book case, and entertains herself on the rocking chair.  Since she doesn't nap anymore during the day, by the time she goes to bed, she falls asleep almost immediately.  This means no more having to stay up with her for hours waiting for her to fall asleep.

2.  Bun Bun's petechiae vanished!  All of them!  Her platelet counts are better than they have ever been and are actually in the normal range.  This made me think oxygen saturation might have something to do with platelet production.  We're going to explore this possibility over the next few weeks.

3.  Potty training!  We almost gave up after Christmas break and thought Bun Bun would never get back into it after being in the hospital and back in diapers.  The little miss surprised all of us by staying dry in big girl undies for stretches of 3 days.  She still has accidents, but she is able to "hold it".  I think because of how hard she has been working on this, she has been backsliding or at least in a holding pattern in some of her other skills.  Bun Bun is never good at multi-tasking.  We are taking a break from speech therapy because lately it has been hard for her attend to a non-preferred activity for more than a minute.  So, I remember, "And she will..." and focus on her accomplishments!