Merry Christmas!

It's been a while, Dear Readers.  I had to reset my password.  That's how long it has been!

Waiting for the school bus on the first day of school

When we last met, Bun Bun was getting ready to start kindergarten.  And, so she has and has been thriving.  It was definitely a good move even though I wasn't sure if she was ready.  She has been attending a learning support classroom and spending a little bit of time everyday with typical peers.  We've noticed that she has been talking a lot more, like a parrot, mimicking a lot of the last words she hears at the end of sentences.  She has even learned to write her name!  She loves to sing and dance!  One of her current favorites is "Head and Shoulders".  She is really loving school and is super happy to be there, working hard, and keeping up with her tasks.

Olivia wrote her name in an orange crayon.

On some more somber notes, I am quite pessimistic about the future of this country and somewhat fearful of what changes the new administration will bring about.  Here's my political view - this country has elected a narcissist who has no social skills.  I am fearful because this new administration has targeted, demeaned, and disregarded women, people who are not white, foreigners, folks with disabilities, and scientists.  Do these descriptions sound familiar?  I am fearful because supporters of the new administration have openly assaulted and bullied people who fit these and many other categories; they do so all the more when they smell dissent.  My only glimmer of hope is that God is in control.  He will be in control come January 20th.  That's hope that I am thankful to hold tightly to.

I have always dreaded fall and winter because the sun-lit days are shorter.  And, it's cold!  I think this fall has been more gloomy because of the current political climate.  Even the Christmas cheers have not helped much.  Sorry to sound so depressing...

God is in control!

Special

 I never liked that quote, "God gives special kids to special parents." for a number of reasons.  Mostly, I think it's something people say because they feel sorry for you even though it has never made me feel any better about being a mom to Olivia.  Olivia is very special, but aren't all kids special in their own ways?

I saw this quote today.  I wish I know who the author is to give proper credit.  I like it a lot more because God gets the glory.  He has always been good at giving extraordinary tasks to ordinary people.  This quote also reminds me that I can do nothing without God who gives me just what I need and helps me move forward one step at a time.  I will need to remember this as Olivia starts kindergarten soon.

Bun Bun loves her books.  She will start kindergarten in a few days!  I hope she will always love books and learn to read soon.

Selfies at Longwood Gardens in August

"Dog"

I've been on the hunt for soft and comfy bed sheets for Bun Bun's twin bed, and I can't believe how expensive they are, especially the ones that are good quality flannel or jersey knit.  Last week, while we were at Costco, we came across some relatively cheaper sheet sets, ones with flowers and wiener dogs.  After I asked, Bun Bun picked the one with the dogs even though they were somewhat masculine.  If she wasn't there, I probably would have bought the one with the flowers.

Usually, when I ask her to make a choice, I put the items in front of her and she would point to the one she wants.  Last night, when I asked her if she wanted the wiener dog or another set of sheets with monkeys on her bed, she said, "Dog".  Just in case you missed that... she SAID, "Dog"... out loud, clear as a bell.

This is the first time I have ever heard her answer me vocally without being prompted!

Now, we dance the dance of joy!

Bun Bun has been working really hard in speech therapy, both at school and at an out-patient clinic.  She has been using an iPad app, Proloquo2go, to help her talk.  She is more willing to vocalize her wants and needs.  I look forward to the day when she can come home from school and tell me how her day was.

For now, we, again, dance the dance of joy!

Curious

Bun Bun is now 5!!  It's hard to believe how tiny she was just 5 years ago and how much she has grown.  Lots have changed over the 5 years!  I am thankful how much this little girl has taught me.  Someone wrote a blog about how their Down Syndrome child has changed them (55 Ways Loving a Child With Down Syndrome Can Be Described).  It's an excellent essay I wish I had written myself.

One of the many, many things I love about Bun Bun is how curious she is.  Not much escapes her.  When she enters a room, doesn't matter if it's her bedroom or a place unfamiliar, her big eyes dart around the room and look for toys or anything worthy of an investigation.  This morning, she discovered an ant.  She followed it across the driveway, fascinated by how it moved.  She even tried to poke it with a stick.  I hope her curiosity will serve her well as she enters kindergarten.

Days-old tiny Bun Bun with Daddy.

Not-so-tiny Bun Bun loves to snuggle up to Daddy and play games on his cell phone.

Bun Bun discovered an ant on the drive way this morning.

My little curious monkey!

New bed!

Nearing the eve of Bun Bun's 5th birthday, we suddenly realized how big she has gotten.  She is busting out of her little crib.  It was time to transition her into a big girl bed!  I think she did very well!

Every time she turned around, she was bumping into the sides of the crib.  This was her early morning, don't want to get out of bed look.  Her favorite Dolly is on the floor.

Helping Daddy dissemble the crib.

A mattress is also good for practicing jumps!

We think Bun Bun rolled off a few times through the night.  But, she gets up and climbs back in.

Progress!

This is how I documented Bun Bun's potty training journey.  I put a sticker on the calendar for everyday that she did not have any accidents.  If she woke up in the morning dry, I put another sticker in between two day.  The pictures below showed her progress.  We didn't really do the sticker rewards because she they weren't really her thing.  So, these aren't stickers that she put on the calendar herself.  As you can see, Bun Bun has made amazing progress!

We started shortly before Christmas in 2015.  We drudged through January very discouraged and nearly gave up a few times.  Even going into February, I wondered if we should just wait until the summer.  Then, it seems like something clicked, almost overnight.  Maybe Bun Bun learned how she can hold it?

Now, Bun Bun is still greatly challenged by speech production.  She will not tell us when she needs to go.  We get around that by setting a timer.  When she hears it go off and she feels the need, she willingly head to her potty chair.  That timer, apparently, has been the key to her success.  Speaking of speech, we restart intensive, outpatient speech therapy today.

Needless to say, I am thrilled for her!  After lots of angst and even more prayers, we have a potty-trained child!  I also have a full case of diapers that I can take back to the store for a refund!

Happy days are here!

Reasons for rejoicing:

1.  Bun Bun is making excellent progress with potty training.  Every time I brag, she back slides.  So, I'm just going to leave it at that!

2.  This is the last week of the semester with week of finals coming up.

3.  It's spring.  Birds are singing louder.  Flowers are blooming.  Weather is warmer.  Can't get any better than that!

4.  God is good!

Longwood Gardens outing with potato chips!

Tulip blooms

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!

San Diego

I had a good trip to San Diego, learned a lot of science, ate some good food, and explored the city a little bit more.  This was my second and longer trip where the conference wasn't in the same hotel and I was able to walk around the city more.  In fact, my hotel was about 1.5 miles from the convention center forcing me walk and wishing I had wore my hiking shoes.

One of the highlights of the trip was a tour of the aircraft carrier USS Midway.  I was invited to attend a party there by a textbook publisher.  When I RSVPed the invitation, I didn't think about the venue.  But, after walking pass it daily between the hotel and convention center, I was in awe by the shear size of the ship and was glad that I would have a chance to see the inside.  I was not disappointed!  The Midway was build toward the end of WWII.  It was deployed to Vietnam, served several missions in the 80's, and was involved in Operation Desert Storm in the early 90's.  Whereas many other decommissioned aircraft carriers were turned into scrap metal, the Midway is now a museum.  Many of the tour guides working there now were former sailors on the ship.  My tour guide was a Vietnamese man who was rescued from a refugee boat.

There were several fighter aircrafts and helicopters on the deck of the ship that would impress anyone with aviation interests.  My favorite was the helicopter used to rescue 5 space capsules at the end of those Apollo moon missions.  I have always had a special interest in WWII history and an appreciation for men and women who served in the Pacific.  I was actually born in an Naval hospital!  So, what a special treat to see this wonderful place!

In case you are wondering, Bun Bun fared very well without me for 4 full days!  Daddy did, too!  John did a wonderful job getting her for school while I was gone.  婆婆 was in charge of bath time in my stead.  I missed them all terribly.  It is great to be home!

San Diego Convention Center with palm trees... kind of reminded me of Taiwan

USS Midway from port side

Helicopter used in the rescue of Apollo capsules

Five Apollo capsules were rescued after they touched down at sea.

Small collection of helicopters on the flight deck

Chewbacca doughnut and a small coffee were my breakfast on Wednesday.

Extra large statue inspired by the Broadway parade commemorating the end of WWII

November Ramblings 2.0

We are upon Thanksgiving once again.  On top of being reminded to be thankful for many, many blessings during this time of the year, Thanksgiving usually means the fall semester is winding down.  This year though, I have a trip to San Diego during final exam week.  So, last minute experiments will be done among many other things.  I'm looking forward to the 3-day break!

Bun Bun's platelet levels are holding steady.  They will have to be checked next week and once more before Christmas.  For the most part, the little red dots have stayed away.  I see a few here and there, but no where near how they spread all over her body in September.  The doctor still doesn't have a proper diagnosis or explanation for the drop in levels, hence the monthly blood tests for now.

Presently, the focus is getting Bun Bun more speech therapy.  She is at a great place where she is a lot more attentive, showing interest in approximating words, repeating some words we say like a little parrot, and eager to learn!  She's starting to realize that she can use signs to request things, rather than point and grunt.  In late August, it occurred to me that we could get additional therapy besides the once a week ones she gets at school.  Our insurance will pay for it.  Even if not, we'd be willing to pay out of pocket.  Of course, why didn't I think of it earlier when my summer schedule was more flexible?  Hind sight is always 20/20!  I filled out a huge packet of forms and was about to fax it in when the platelet troubles began.  Long story short...  Yesterday, we finally visited a SLP (Speech and language pathologist) for an evaluation.  A very nice therapist will start treating Bun Bun in January.  Best of all, the once a week sessions will take place in a hospital just down the road from where we live!  During the evaluation, I was just amazed at how much Bun Bun knew and understood.  For example, the therapist showed several cartoons on a page and recited a scenario.  A little girl is hurt and has a boo-boo; what do you think happened?  Bun Bun promptly pointed to a bicycle on its side with a banged up wheel.  I couldn't remember what other cartoons were there, but no other ones fit the scenario.  I wonder how often Bun Bun plays dumb or just plain being defiant because she clearly understands a lot more than I think she does.  Once she starts talking, it'd be really interesting to see what goes on inside her head.  She sometimes makes random signs from songs she knows, perhaps she's singing!

Bun Bun as Elsa from "Frozen" for Halloween, costume per Aunt Tammy's talents.  She looks like a tree nymph here.