Those frigid, chilly winds have started sweeping down from Canada, through the plains, and straight into the DFW area. Brrrrrrrrrrrrrrrrr! We even had a few snowflakes in Dallas the other day–can you imagine? It felt like we were back in the Northeast. I am extremely thankful to report, however, that it was back up in the 70s again today! I’m all for a tropical Christmas! 😉

It seems that we are always talking about this, but….the boys are getting SO big! Ethan and Evan had a couple of outfits that were too big for them just a week or two ago, which now fit perfectly or are getting tight. Ethan is eating like a little garbage disposal, and has taken over the title of “chow hound” in our house! (You can see him in the video below carrying around a jar of pretzel sticks – almost as big as he is – and trying to get them open!)

Last Thursday, we were finally able to have the procedure done to replace Aiden’s g-tube with a G-J tube. It was a very painful procedure for Aiden, made even more difficult by having to work with some recalcitrant doctors. Unfortunately, the G-J tube is not working as expected. We knew that Aiden would continue to vomit constantly, but it was supposed to lessen the volume of liquid that was coming up every time (as it had previously when he was fed through the ND tube). Given the nature of feeding into the intestines, he is not supposed to be able to throw up milk. Instead, it seems to have made it even worse in some ways. While he is not throwing up as much milk, he continues to throw up not only milk but also large amounts of bile and dried blood. As a consequence, he is also requiring more oxygen.

Another urgent prayer request: for months we have been attempting to find a good local GI doctor for Aiden. We desparately need someone who will provide continuity of care, be available when Aiden needs to have procedures like this done, and be willing to work with the doctors at the Center for Aerodigestive Disorders (CAD) in Boston. The doctors in Boston have been wonderful, but we really need a local point of contact as well. Sadly, we have experienced numerous and strange road blocks and challenges. One doctor had been highly recommended to us, and after jumping through all kinds of hoops to try and get Aiden in to see him, he came back this week and told us that he would not see Aiden. As you can imagine, we are completely stunned and don’t know what to do next. However, we would rather know now before we start down that road. As we have learned the hard way throughout Aiden’s long illness, it is so important to have the right doctors. We are praying that the Lord will direct us to the right GI doctor for Aiden very soon. Please pray with us!

PS: lots of pics below for those of you who asked!

Aiden is in hiding

Discovered!

Peek-a-boo is tiring for a little boy!

Staying warm

Ethan is loving his food these days

Evan is Small, Mighty, and Handsome (with very big brown eyes)

The Little Stinker

Ethan believes in doing his own stunts

What stunt are you plotting now, Ethan?

What a face!

Aiden is already into technology (he thinks he should have the camera)

Evan holds his bottle with just the one hand

Snuggle time with mommy

Ethan can’t get enough!

Aiden has all the toys to himself while the twins are taking their afternoon nap

Aiden’s outfit says it all. This was our first Thanksgiving with everyone home together, and we certainly have so much to be thankful for. Grandpa and Grandma came from NY to visit, and the boys (the *real* reason they came ;-)) loved all of the extra attention! We took a trip to the Gaylord Texan and the boys had quite a time (see pics below).

It is amazing how big the boys have gotten, almost overnight. Their clothes from even just a couple weeks ago do not fit them. Ethan and Evan have started mimicking almost everything Aiden does, even to coughing like him and sticking their fingers down their throat and gagging themselves. Aiden is becoming more and more mobile, and can semi-“crawl”/scoot everywhere like greased lightning. It is the funniest thing; he looks kind of like a rabbit with a broken leg.

Please continue to pray for him, and that God will give us wisdom to know what to do. His vomiting has continued to worsen, and he has been steadily losing weight since going to the g-tube. We will be moving him to a G-J tube (putting a tube down through the g-tube into his intestines), which hopefully will improve his weight gain. Several of you have suggested some possibilities to check out, such as mastocytocis, pyloric stenosis, Vitamin B deficiency, and others. We truly appreciate your suggestions; thank you! Unfortunately, he has been tested for all of those things and so far, all of the tests have come back negative.

Below are lots of new pictures and some video. More than anything else, at this time of year, we are most thankful for all you, our extended family and friends. Your kind thoughts and faithful prayers mean so very much to us, and we hope that you enjoy this wonderful time of the year.

Trouble is roaming the neighborhood

Evan, just because the dogs do it doesn’t mean you should!!!

A car came by and Boo got scared

Ethan, what are you up to?

They are opening everything!

Evan apparently forgot that he can walk

Couch potato alert!

Ethan plays peek-a-boo with Carolina

The ‘Outdoor Explorer’ is always indoors

What a face!

The eyelashes are his signature

Grandpa and Evan spend some quality time together

So sweet!

Grandma and Grandpa take the twins for a ride

This year’s decorations at the Gaylord Texan are larger than life and a lot of fun

So many balls…Evan thinks he’s in heaven!

Ethan wanted to check out the lights

The boys enjoyed watching the “elf” make animals balloons

There was an attempt at a picture of the trio in the sleigh…obviously, the attempt failed miserably

Evan was thrilled…there were even “balls” hanging from the ceiling!

Grandpa with Ethan, a bottle of orange juice, and a purse (don’t ask)

Grandma gets in an arm workout (it’s harder than it looks!)

Everyone was worn out afterwards

They get so excited about the Letters DVD. They are only allowed to watch it twice a day, so they make the most of it

We can now webcam…the boys love it (grandma and grandpa love it even more)

Ethan does the one-fingered Aiden touch

Aiden is mobile!

Two’s company…

…three’s chaos!

There is so much going on these days! Thankfully, everyone is healthy again and Manish was the only who had the flu.

The second round of Cisapride did not work; Aiden continues to vomit massive quantities of milk and it seems to be getting increasingly worse, rather than improving. He often gets dehydrated and we really are not sure what to do at this point. We will continue to consult with the doctors, although they are not certain where we should go from here. On a positive note, he is becoming more mobile. He moves at the speed of a turtle, but has made exceptional progress scooting around just in the last couple of weeks. While his increased mobility is great, it has become extremely challenging to keep him connected to his oxygen and feeding pump and also keep Ethan and Evan from pulling them over on top of each other.

The twins continue to grow like little weeds. Evan’s vocabulary is increasing every day. He will bring something to us or he will point to something and say “dis, dis” (this). He likes to try and imitate when we tell him what “dis” is. Evan’s newest favorite food is blueberries. Now everytime he is hungry or sees us eating, he says “beesz…beesz…beesz” (his version of “blueberries”). He cannot get enough of his blueberries! Whenever he eats something he likes, he says “nyamm, nyamm, nyamm” which means “yum, yum, yum.” Ethan’s new “word” is “adjiit,” and he is very into the “gggggg” sound. Not sure what that means, but whenever he wants to tell you something that is what he says. He has become very cuddly and sweet lately, and likes to run up to us, wrap his arms around our legs, and hold on as tight as he can.
All three of the boys have discovered how to play peek-a-boo, and are having a lot of fun running around with their hands over their eyes!

Everyone keeps asking for more pictures, so we have uploaded lots of new ones this round. Enjoy!

Aiden is so cute!

…and happy too…especially when he pulls his oxygen off…

hmmm…perhaps we could do this more often?

Evan loves learning his letters!

Ethan loves being outside!

He heard a dog barking and wasn’t sure what it was

Lots of room to run outside!

So much fun!

Down the slide we go

Evan is so happy to be outside

Ethan isn’t sure he likes swinging

Dad is going to take the twins down the kiddie slide

While it looks like a safe landing, Manish realized halfway down that this slide was NOT meant for adults

The boys are so happy to be with Grandma

Yes, he really does have big feet!

And away they go…

Sunday evening at church

The boys are all dressed up in their Sunday best

Getting everyone out the door is a monumental task

Lights out for Aiden…his outfit says “My Dad is my Hero”

Storytime with Grandma

Evan is playing his new favorite game

He loves it!

So handsome!

Ethan enjoys watching the others play

Aiden is getting into it, too

Where did Aiden go?

There he is!

Evan is loving this (look at all those teeth!)

Ethan is more interested in the camera (he really IS his daddy’s clone)

The Letters DVD is such a hit. This must be the 20th time they have watched it

They are really into it

Aiden pays attention very well

Evan takes this very seriously

Ethan likes to stand and watch it

Aiden has starting putting all kinds of things into his mouth–even the cord to his pulse-ox monitor

He can now pull himself into kneeling

Snuggle time with Mommy

Aiden buries his head in Evan’s lap…he loves hugging the twins

Evan, don’t strangle Aiden with his oxygen cord!

The boys are very into little hiding places

And two came tumbling down…

Sharing is hard….and of course, someone always gets hurt

Ethan is learning to unzip his pajamas