Almost Two

In just one week, the boys will be two years old! How quickly it has been. Just a year ago the twins just started walking and Aiden was trying to crawl.

Over the past couple of weeks, all of them had allergies. The post-nasal drip, congestion and drainage was so bad that it went into their chests (Evan, in particular was probably the worst) and Ethan and Evan both ended up with sinus infections. Of course, it doesn’t take much at all to cause all kinds of problems for Aiden, and all of the congestion and drainage caused his O2 requirements to increase, and also caused a significant increase in all of the vomiting. Fortunately, whatever was in the air seems to be gone and the boys are finishing up their antibiotics and feeling much better.

Many thanks for all of your continued prayers and well wishes for Aiden. We know that the surgery to replace the J-tube was definitely successful, and we were so grateful that it did not cause any damage to the wall of the intestines when it pulled out of position. The laryngeal cleft repair continues to heal, and so far seems to be doing well. We really will not know to what extent that surgery was successful until we begin to intensively push Aiden to eat by mouth, and the doctors have recommended that we allow the repair time to heal and wait until mid-September or later to increase his oral feedings. This puts us back on a short-list (sort of a secondary waiting list) to get him into the intensive daily feeding program at the the pediatric rehab hospital here (again!) and see how much he can handle respiratory-wise. At this point, it appears that it will be mid-November before we are able to get him back into the feeding program.

A couple of weeks ago, we met with a well-known geneticist here in Texas, a Dr. Golder Wilson. We have had the appointment with him since May, but his schedule is difficult and he only sees patients here in Dallas one Friday a month. Based upon his clinical symptoms, Dr. Wilson believes that Aiden may have something called Opitz-Frias Syndrome, also known as G/BBB Syndrome, a very rare disorder characterized by mid-line defects and issues such as vomiting and developmental delays, among other things. This can only be verified through an unusual and somewhat laborious type of genetic testing which is not available through commercial laboratories, so Dr. Wilson recommended that we have this testing done upon our next visit to Children’s Boston to either confirm or rule out this diagnosis. The doctors in Boston have continued to tell us that they feel they are missing something, but are puzzled by Aiden’s case, so an accurate diagnosis would be significantly helpful in treating Aiden.

Naturally, Aiden is thrilled to be back home with his brothers, who are getting bigger every day. Ethan and Evan are likewise happy to have things are right in their little world again with their Mommy and brother back home, and are beginning to realize that we won’t be leaving them again every time Mommy walks across the room. The twins have shot up over the last couple of weeks, and their vocabulary has quadrupled (at least). Manish likes to test them on it by having them say words like “Sri Lanka,” “opportunist,” and “supercalifragulous,” and they love showing off their capabilities. They are still all about cars and phones, and ask a thousand times a day to go “touch Daddy” in “HIS office, pease???!” This is their clever little code for “we want to play with the real phone in Daddy’s office” — and after all (as they know well) how can you say no to something like THAT?!!! (There are some pics of them in the office below.)

A Sweet Pea among the flowers

Aunt Amisha had a great time with the boys

Love love love

Fly, Ethan, Fly

Aiden loves his little swing

Ethan at the playground

…down the slide…

This is fun

It’s Evan’s turn

Daddy loving Evan (yes, Manish is actually wearing dress shoes to the playground)

Mommy and Ethan

Daddy and his little Bear

He doesn’t seem to enjoy it much

But he does! (Manish, really?!)

Aiden, are you hungry?

Swing swing

Amisha is enjoying the swing but Ethan wants to run around

Classic Aiden

Mommy and Boo are so happy

Time to blow bubbles

Aiden is laughing it up

Popping the bubbles

…in the grass

Amisha is good at this

Evan loves going after them

Ethan, whats up?

Evan, should you be up there?

Time to go home (dad has his hands full – he should have worn sneakers)

Coloring time – Evan takes this very seriously

Aiden, don’t panic

Amisha could not keep her hands off him

Here comes “the Rock Star”

Aiden, don’t hit him!

Too late

Amisha restrains him

…and he does not like that…

Ethan, did Aiden hit you very hard?

Hmmmm….

Ethan tries to escape the cage

Playing with the phone in daddy’s office…Day 1

Day 2

Day 3

Day 4

Day…you get the idea…this happens every day!

    Rambunctious!

    Yes, the title says it all–and they are not even 2 years old!

    It’s been a while since our last blog update. Aiden is back home and the surgeries were successful. Thanks for all your prayers!

    It will take some time for the repair of the laryngeal cleft to fully heal and the stitch in his throat to dissolve, so we won’t know how beneficial the procedure was for a few more weeks. He did well for a few days after the surgery but in the last couple of days he has thrown up quite a bit. But despite all this, he is still as happy as can be (most of the time).

    The twins have had a lot of fun over the past few weeks. Their Grandma was in town helping out while Hannah was in Boston. They are into all sorts of new things such as playing outdoors with the balls (lots of pictures below), the see-saw, sitting in Daddy’s office with their phones and even cleaning (of course their magnitude of being messy is far greater than that of cleaning).

    Below are several images over the last couple of weeks.

    Cleaning is the newest thing

    Everything must be cleaned

    And they do it quite well

    Ethan, you missed a spot

    Edith with favorite twins

    Mommy and Aiden in Boston

    Sleepy time for Aiden

    Ethan, you look scary

    Now you look like you are in trouble

    Don’t worry, you are not in trouble (atleast not yet)

    Evan, the chair is meant for sitting

    That’s better

    A pirate ship for a pirate baby

    The twins LOVE playing with the balls outside

    Throwing them is so much fun

    There they go

    Ethan has two

    And now he can have three

    And now, four

    Tricycles are also fun

    Of course, there are few things that intrest them as much as the phone

    I told him to smile, and Ethan actually smiled (it is a fake smile, but still very nice)

    Up and down

    Evan, please don’t make Ethan fly off

    Swim Time!

    Evan, you are sweeping so well!

    They goes the little bear

    Edith and Ethan take a break from all the fun

    He’s back!

    And he is loving it

    Aiden, you look puzzled

    He loves splashing everywhere

    Grandma took the boys for a bath but apparently forgot Ethan’s clothes