Updates from August

This set of pictures is very funny.   After shower one night, Pearl volunteered to help Ruthie get dressed.

Phew!   Done!

Last week at church in the restroom, Pearl told me she could help Bethany in the toilet and that I should just wait outside.  That was such a kind offer, so I just let her.    She took Bethany to the toilet, helped her get tissues and gave her all the verbal instructions, just as I usually do.  The two of them giggled and laughed the whole time while in the toilet.    It was so funny.   They are best friend.   

That really made me think.   May be I should learn to take cue from our kids regarding Bethany.   All along, all four girls have really enjoyed each other.  It was just San and I, who were totally stressed out.    May be I should learn to take cue from them;   if it doesn't bother them, it shouldn't bother me.    How easy and care-free life is in a child's mind.

The girls like to watch TV together.   Their favorite shows are Barney, Dora and Caillou.

Watching TV again.

Bethany attended this 2-week summer camp for blind kids in August.   Drop off and pick up was exhausting - 40 miles one way.     But it was worth it.    I met other blind adults and kids and saw possibilities.
Bethany has started private swim lesson in Baltimore.   So every Saturday morning, we drive 45 miles to Baltimore for her half-an-hour swim lesson with a swim teacher specialized in teaching kids with special needs.   Swimming is such good training for motor skills, balance, coordination, strength training, spatial  and body awareness.   I know it will take her a long time to actually learn to swim, but I hope the training will help her to understand her body and surrounding better.  It is super expensive.  Does it worth it?    We don't know yet.  But I know I have to try.   It took me a long time to convince San to say yes, and I really hope so!   LOL.    So far, Bethany is enjoying the water so much.   So if budget allow, I think we will keep this going for a while and see. 

On the medical side - We received a call from Bethany's geneticist early this week about her gene test, which was done over the summer.    The result is back.  I spoke with  her briefly on the phone, and learned that they were able to rule out one major defect(which is wonderful).  However, her gene sequence indicated that 7% of her genes (very high) contains duplicates, which means her parents were likely to be very close relatives.  This usually causes genetic disorders/defects.   They were able to identify a few genes abnormality in her sequence.  We will meet with the geneticist on October 3rd to discuss in details what these genes abnormality interprets to.     Your prayers is greatly appreciated.   I hope this appointment will give us some answers to our concerns and frustration.    

Every morning, I read with Bethany for about 20 minutes while waiting for her school bus.   This morning, we were reading the book "Going on a Bear Hunting", again.   (We must have read this book for at least 10 or 15 times in the past few weeks.)   This book contains a lot of tactile illustrations for Bethany to use her hands to track through the forest, go over a bridge, walk around the pond, etc... to hunt for the bear.     At the end of the story on the last page is the picture of the bear (finally to be found).   This morning, on the last page of the story with the picture of the bear in front of her, our conversation went like this:

Me : "Can you find the bear on this page?"
Bethany: "...... no bear"
Me: "Yes, there is.  Use you hand.."  (I guided her hands to the bear picture)
Bethany:  [silent]
Me: "See, what is this?"  (with her hands on the bear)
Bethany: [silent]
Me: "We are looking for the bear, right?"
Bethany: "right."
Me: "So what are we looking for again?"
Bethany: [silent]
Me: "We are going on a bear hunt, right?  So what are we looking for?"
Bethany: "hunt"
Me:  "Yes, hunting... hunting for what animal?"
Bethany: [silent]
Me: "Ummm....  It was not a chicken, it was not a cow..... what animal we were hunting for?"
Bethany: "chicken"
Me: "No, not chicken.  It starts with the letter 'B', \b\, \b\...."
Bethany: "Bethany"

I was at my wits end.   So our reading time stopped there.   The sad feeling was so deep that it was churning my stomach and wrenching my heart.     I cried out to the Lord - the mountain is so big, but my faith is so small.   What do we do?  The answer is again, one day at a time.

Sam is taking 5 classes in college and doing Army ROTC training this year.       3 days a week, he gets up at 4:15am, drive an hour to school to attend  ROTC's physical training.  A few times, I woke up at around 4:30am, and saw him reading his bible.    How precious.   He recently started a part-time job, working 10-12 hours per week.  So he is super busy.     He is saving all he can, hoping to go on a mission trip with our church to Uganda this January.    

Ruthie has a new nick name - the fat princess.   Ha,ha...   She is very chubby, very cute, love dresses but also very clumsy,  the ultimate drama queen.   (She does less screaming and yelling and pointing, definitely not as "fierce" as when she first came.   :-)    She tries hard to keep up with her sisters, but always ended up whining desperately for rescue.   very funny.   Here, we were at our care group picnic.  Within 2 minutes we got there, she tripped and fell face down on the grass.  (the scratch on her forehead)     I know we shouldn't be laughing, but we couldn't help it.   She was so funny.      

Ben turned 14 last month.    Again, there was no big celebration, no party, no gift request - he never liked this kind of thing.   Every year I ask, every year he said no.     This year, I, again, gave him a small goody bag, with all his favorite snacks inside, and brought home a birthday cake from his favorite bakery.   He was happy.    School is going well for him so far.   He said the long hours of being in school is tiring (he's been homeschooled until this year), and home school is easier.  Ha,Ha... I am glad he finally realized I am the easiest teacher in the world.   :-)       But he also said school work is easy - I am so glad.

Eating at our favorite sushi place.     Everyone there know our family now.   Who wouldn't notice this big army of kids marching in!   ha,ha....

I think they were looking at a game or facebook.   I am not sure.     Faith loves to "hack in" to Sam's facebook account and chat with his friends (girls).     Most of his friends know her very well now.   very funny.

In addition to her pre-K language class 2 mornings a week, Pearl is starting private speech therapy next month.    She is struggling with articulation.   Even though she talks A LOT (she is very chatty, so much fun),  her speech is very hard to understand.    Within context, we understand about 70% of what she is saying.   But most of the time, we have no clue what she is talking about, and it is very frustrating.    The main problem is that she is not using her upper lip and tongue much when she talks.      She is struggling to pronounce beginning sounds  like k, g, h, n, and s.       We hope the private speech therapy will help her improve.    Besides her speech, she is such a smart cookie.    She knows all her alphabets and sounds.    She is counting everything she sees.    She can spell and write her name.   She loves to read, color and draw.    She is such a blessing.