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.

Crazy September

It's been a whirlwind of a month.  I'm glad to see it go and welcome the arrival of October.

It all really started this summer.  Bun Bun and I both got back to back sickies.  When school started, Bun Bun picked up yet another sickie, the third for the summer.  Then, those little spots showed up and spread.  Those dreaded petechiae that almost always spelled trouble.  Every year, Bun Bun gets lab work done to make sure nothing is funky with her blood since incidences of leukemia is increased in kids with Down Syndrome.  This year, I was told everything looked normal, until the pediatrician thought we needed a second opinion on Bun Bun's consistently lower platelet counts.

When platelet counts are low, petechiae show up.  These little thrombocytes help form clots when there's bleeding.  So, when there aren't enough of them, small red dot appear on the skin where blood vessels break.  This may be life-threatening if there's trauma in the body, especially in the head.  The patient may bleed out.  A decline in platelet counts can be caused by viral infections, autoimmune diseases, or leukemia.

To be on the safe side, we were referred to a hematologist who, being overly cautious, wanted to follow Bun Bun's platelet counts more carefully.  At least once or twice in the last couple of years, Bun Bun seem to break out in a petechial rash all over her body as she recovered from respiratory infections which go away on their own after a few days.  So, when this happened soon after the third sickies, I wasn't terribly worried and thought this might also be virus-induced.  BUT, when Bun Bun's doctor called and told me that her platelet counts had plummeted down to super low levels and that she needed to be admitted to the hospital for a platelet transfusion, I knew this wasn't good.  They had also wanted to observe her and do a bone marrow biopsy just to rule out autoimmune disease or leukemia.

Brave Bun Bun endured numerous needle sticks, some to get blood samples for analyses and some to start IVs.  [Note to all you readers: be wary of resident physicians, freshly out of medical school, who want to draw your blood!]  The doctors quickly ruled out autoimmune disease.  Bun Bun wasn't making antibodies that reacted against her own platelets.  After two weeks of analyzing her bone marrow, they couldn't find anything wrong; there were no cancer cells, hence no leukemia.  Bun Bun only stayed at the hospital for two nights.  A week after she was discharged, they transfused another unit of platelets.  These cells only last in circulation for about a week.  So, was this going to be our routine?  If Bun Bun can't produce platelets on her own and the doctors can't figure out the cause of these low counts, then yes.  On the bright side, most of the little red dots have disappeared at this point.

This past Wednesday, on the last day of September, we went back to the hospital for a third transfusion.  They always take a blood test and determine platelet counts before transfusions.  Platelets are from donated blood; donated blood are collected at Red Cross blood drives; they are precious commodity.  If a patient did not need a transfusion, they will not give it.  Bun Bun's platelet counts that day came back up!  I don't think her doctors and nurses quite believed it either at first.  Bun Bun did not need that third transfusion after all.  Now, we dance the dance of joy!

We will go back to the hospital next week to check on her numbers again.  My best guess is that the platelets were wiped out by some viral infection.  As she recovers, Bun Bun's stem cells in the bone marrow are cranking them out again.  For now, we praise God!  Many, many prayers went up to heaven on behalf of this little girl.

I am reminded once more:  God is good.  He is sovereign, even over platelet production!

Other vignettes...

Earlier in September, I had a bright idea of converting Bun Bun's crib into a toddler bed.  All this means was that we take off one entire side of her crib and attach a short panel to, at least, prevent her from rolling off.  She would still have some space to climb into and out of bed by herself.  The entire reason for doing this was that we didn't have to lift all 32 pounds of her out of her crib.  This lasted for three days.  As soon as Bun Bun realized she could freely come and go, that's exactly what she did.  When she went to bed, someone had to stay in her room with her so she didn't get out every two seconds.  For some reason, she had a terrible time falling asleep; maybe because without the one whole side, it didn't feel as cozy or secure.  So, either Daddy or I had to stay with her for at least 2 hours every night, until she was asleep.  On the third night of doing this, the crib went back together.  Everyone is happy now.  We might try this again over Thanksgiving or Christmas break.  We might forgo nap time all together since she may not need them any more; this way, she is tired by bed time.  We might add some sort of mosquito net-like contraption to make her bed more cave-like and cozy.  Will update later.

Update on potty training:
I have pretty much given up but I am optimistically hopeful that it won't be long before Bun Bun will be completely potty trained.  I have refocused my efforts on teaching her how to pull her pants and diaper up and down by herself.  She has picked up on the task nicely, even those really tight leggings.  That's progress!

First day of pre-school, again!  In case you're wondering 婆婆 buys most of Bun Bun's clothes.  What do you think of this outfit?  Like her hot pink sneakers?  I did pick these out.

Potty training!

Day 6

Progress is being made!

Will keep you all posted!

Cute

Of course I am biased.  Bun Bun is really cute... those big brown eyes, little button nose, rose petal lips, and oh! that little dimple.  These are the typical features of a cartoon character.  She has gotten by quite a lot in her short little life on being cute.  Lately, I've been putting her hair up in pig tails.  CUTE!

Is she ever not cute?  Oh yeah!  When she throws temper tantrums or when she just flat out refuses to do what she's told, she can get quite ugly.  She's still little and can get away with being ugly.  After all, she's more or less still a baby and will act like one.  Most people expect that and will tolerate it.  And, like I said, she can and has get away with a lot just by being a typical toddler and looking cute.

Now that she's four, growing taller and not so much a baby anymore, it hit me the other day that there will come a day when being cute won't do her much good.  There will be a day when she's not so cute anymore.  It won't be cute when she's 10 or 12 and throws a temper tantrum.  It won't be cute when she's 15 and refuses to be consoled because she didn't get what she wanted.

Better start putting my foot down and train her right.

Eating a whole meal all by herself.  She loves rice.

Birthday Girl

Another year came and went, for Bun Bun.  It's hard to believe my little peanut is 4 years old.  I can still remember the smell of the NICU where she stayed for 3.5 weeks after being born.  Sigh...

Bun Bun had two wonderful birthday celebrations.  She celebrated with a big milestone - she ate a whole meal all by herself.  Being an only child and one with special needs, we do EVERYTHING for her.  We dress her.  We feed her.  We still carry her from place to place (mostly because we don't want her going bare footed though).  I brush and floss her teeth.  We wash her hands (well, otherwise she wouldn't do it herself).  I bathe her, wash her hair.  So, for her to have eaten an entire meal all by herself was a big deal.  After all, she's been doing it at school.

For 4th of July holiday weekend, we flew down to NC and visited Grammy and Pop-pop.  They had just moved down recently.  We also had a nice visit with Bun Bun's aunts, meeting one for the first time.  Unlike me, Bun Bun did very well on the plane.  She was entertained on the ride down with her magna-doodle pad and movies on the iPad.  On the way home, she slept for a little bit.  The plane ride was about 75 minutes each way.  Not a bad trip to test out how she'd respond to changes in altitude and that weird take-off and landing sensation.

Just another ride to go some where fun.

Happy birthday to me!