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!
