Thursday, December 17, 2015

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 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

Sunday, November 22, 2015

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.

Friday, October 2, 2015

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.

Wednesday, August 26, 2015

Potty training!

Day 6

Progress is being made!

Will keep you all posted!

Thursday, July 16, 2015

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.

Tuesday, July 14, 2015

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!

Monday, June 15, 2015

Emily

About 3 weeks ago, Bun Bun came home from school with an invitation to a birthday party.  It was Emily's 5th birthday celebration.  It was going to be a pool party.  Several thoughts came to me.  1.  So, this is the start of the parade of birthday parties now that she's in school.  2.  It's one of those "invite the entire class" invitations.  Did they know Bun Bun has special needs?  3.  Should we accept the invitation?  How will Bun Bun fit in?  She can't really do all the things her peers do.  4.  I'm going to have to go with her and will probably end up chasing after her the entire time.  What will that be like?  5.  It's a birthday party!  Bun Bun needs to be with children her own age, especially kids she already knew.

I debated back and forth whether to let her go or not.

Then, several things happened.

About a week after we got the invitation, I had a meeting with Bun Bun's teacher and her crew (OT, PT, Speech, Special Ed).  Everyone commented on how well Bun Bun has been paying attention to her activities.  Something seemed to have clicked.  She has been particularly attentive during speech therapy, so much so that she's been making tremendous progress with mimicking and repeating sounds with her therapist.  She sits nicely during circle time and watches her teacher.  She doesn't need her special little chair anymore.  Bun Bun's teacher mentioned that she usually sits next to Emily and sometimes leans on her and uses her as a pillow.

Emily?

Bun Bun needs to be with children her own age more!  This kept ringing in my ear.  OK.  I guess it'll be all right.  I should just let her go.

So, four days before the party, I finally called Emily's mom and told her we were coming.  I said we because I knew I had to stay.  Our conversation turned out to be very unexpected.

Pleasantly unexpected!

Emily's mom asked who we were since there were two other girl with Bun Bun's name.  I told her we were the one with the Down Syndrome.  Thinking more about it, I'm not really sure why I said that since there are plenty more other descriptions that fit, probably better.  As soon as Emily's mom realized who we were, she let out a shrill of excitement.

"Oh, I'm so glad you're coming!"

She went on to tell me that Emily's older sister has a best friend with Down Syndrome.  And, when she was a little girl, her best of all best friends was a boy with DS.  (I guess having friends with DS runs in that family.)  Needless to say, I felt really good and reassured that Bun Bun will be all right.

The party was yesterday.  Bun Bun had a FANTASTIC time.  When we arrived, Emily ran up, all wet in her bathing suit, and gave her a big hug.  Bun Bun jumped into the pool, and the giggles of joy were nonstop.  She ate a slice of birthday cake all by herself.  Everyone couldn't be nicer.  The poor child cries big crocodile tears when we had to leave.  She really loves playing in the pool.  At the end, Emily gave Bun Bun a kiss on the cheek as we said goodbye.

Emily will be headed to kindergarten in the fall.  I hope this is not the last we'll see of her.

Thursday, May 28, 2015

Summer

With just about 2 more weeks left of school for Bun Bun, we're making plans for the summer.  She will be going back to the Mom's-Morning-Out program that she had attended last year, but just 2 days a week.  That's plenty enough to prevent 婆婆 from going crazy.

We'll try potty training again this summer.  Please pray for us!

Bun Bun will be flying in an airplane for the first time this summer.  I'm not going to think about it until we get closer.  We're traveling down to see grandparents who just moved South.

Bun Bun standing tall on her slide/climber.  She looks a lot like Daddy in this picture.

Thursday, April 30, 2015

Ah-E!

Tonight, I heard Bun Bun say "Daddy" when we were looking at some family pictures.  Now, her version of "Daddy" is the more approximated "Ah-E"!  But, I will take it.  To me, it was as clear as a bell.  She pointed to pictures with Daddy and said, "Ah-E"!  It's a huge milestone for Bun Bun.  This calls for celebration!

The child has undergone some major changes in just the last 2 or 3 weeks.  At school, she has been a lot more attentive.  She has been following verbal directions a lot better.  She transitions from one activity to the next with much less fuss.  She sits and listens to her teacher during circle time.

At home, she marches herself up to the bathroom when I tell her it's bath time.  She might whine all the way up the steps, but Daddy no longer has to drag her.  Through most of the winter, she was watching Signing Time and learning the ABC signs.  This prompted her to attempt saying the letters as she signs.  She knows pretty much all the letters in American Sign Language and the numbers 1 through 10.  Her annunciation of vowels and some of the easier consonants (like P or M) are much better than the harder ones, but you can still make out that she's trying to say F or W.  Her speech therapist has noted some significant progress in her willing to imitate and vocalize some words.  In fact, all of her therapists have noted some great progress over the month.

We are still working on "Mama".

"And she will..."

A proud Bun Bun with her stacked blocks.  She wears glasses mostly just at school.  This newer pair makes her look older but smarter!

Family photo with "Ah-E"

Bun Bun's new wheels!  The new trike is still a little bit too big for her.

Here, we were waiting for the Popovich Pet Theater Show to start.  Bun Bun stayed attentive through most of the show even though I could tell she was getting really tired; she couldn't stop clapping.  Glasses helped her see the stage far away.

Monday, April 6, 2015

Easter 2015

My favorite time of the year!  Spring flowers are starting to bloom.  One lonely little daffodil blooming in the front of the house.  Buds are slowly appearing on trees.  Everything seems late this spring.  We've had a long, cold winter with moderate amount of snow.

It is finally somewhat warm enough for Bun Bun to play outside.  It's nearly impossible to coax her back in.  Bun Bun's has been working on her core strength a lot over the winter.  She is now able to climb on on the slides by herself, pretty much without assistance.

We had an Easter egg hunt after church yesterday.  Here she is executing her skills and feeling quite proud.  She's thrilled to be swinging on the swings for big kids, no more those bucket seats for babies.



Big kids swing!

Watching my favorite shows in my easy chair!

Friday, February 13, 2015

And she will...

"And she will..." has been ringing in my ears, a lot lately.

This was something one of the NICU nurses said to me when Bun Bun was just a few days old.  I wish I remembered her name, but I can still picture her face.  She said it with a big smile and a chuckle.  It was probably in response to me being impatient about Bun Bun not yet learning to suck, swallow, and breath.  In those days, it took her almost an hour to drink a tiny amount of milk.  She would keep falling asleep; preemies are always really tired.

"And she will."

She did!  Bun Bun has come a long way from those days.  She can chug down a whole glass of orange juice all at once now.  If she was really hungry, can gobble down her dinner in no time.

Bun Bun turned exactly three and a half earlier this month.  Talking is still very much a big challenge for her.  She babbles a lot, now with more varied syllables than a mere two or three months ago.  She is still able to communicate using signs.  She can understand almost everything you tell her or ask of her.  She can imitate some words.  We hope she will be able to speak coherent words soon.

And she will.

Last summer, after failed attempt at potty training, we will have another go at it when the weather gets warmer.  We hope for better results this time.  Not having to buy diapers will be a good change.  I've been trying really hard not to call her Baby Bunny any more.  Maybe she will do what big girls do - go potty on the big toilet and transition her out of the crib into a toddler bed.

And she will.