Aiden is back…again! Hannah and Aiden were gone for a week and returned from Children’s Hospital in Boston on Wednesday afternoon. While in Boston, Aiden started receiving the Cisapride. It will take approximately two weeks before we know whether it is working. Overall, the trip was much longer than it needed to be, but at least we got the tests done. It will definitely be worth it if the medication works. Thankfully, Hannah’s mom was able to come and help with Ethan and Evan while they were gone. She has been such a blessing!

Ethan and Evan have grown so much and now look like little toddlers, as you will see from the pictures below! Evan looks like a 2-year old and has a new hobby: climbing the stairs. Ethan is a little monkey! He has learned how to open doors and tries to climb over the safety gates, up the table legs, out of the high chair…. They both enjoy throwing toys (and anything else they can get their hands on) over the gates onto the tile floors. Manish decided that their hair on the front of their head was too long and gave them their first hair cut this week. Those thin, little bangs just had to be chopped! Hannah says it looks like they have been attacked by a weed wacker. 🙂

In the video below, you see Evan with his new bouncy ball which he loves so much. Also, watch the twins “chase the light.” They end up with a little collision.

Ethan tries to escape from “jail”

The battle for a pacifier…Evan wins this round

Evan is learning to brush his teeth

As is Ethan

Brushing is so much fun!

Evan LOVES to play with balls

Ethan is grandma’s boy

Evan, how old are you?!

Aiden is back!

So happy to see daddy!

Mommy’s Secret Agent 1

Mommy’s Secret Agent 2

No place like home!

The Incredible Hulk…I mean, Incredible Evan

Evan has found a new form of exercise

Why eat just one piece, when you can have the whole thing?

Aiden is so laid back

Ethan, finish your breakfast!

Aiden, you want some?

The economy is tanking, the world is watching and in less than 5 weeks America may elect a liberal, inexperienced, socialist to be the next President.

But let’s talk about more important things 🙂 It has been a little while since our last update as things have been so busy! The twins surgery went very well. Last night, Ethan was his old happy self and running around the living room laughing his head off. Evan is also doing much better and hopefully the days of recurring fevers, constant antibiotics, refusing to eat, and (partially) sleepless nights will be over.

Aiden continues to vomit and will be going back to Boston tomorrow via Air Ambulance to obtain the first dose of Cisapride. We expect that he and Hannah will be there at least until Tuesday, October 7th (barring any complication).

Just wanted to post a quick update and ask for your prayers for the boys. Enjoy the video and images below. Aiden was in a very silly mood and could not stop lauging. We have never seen him laugh so hard! There is also some video of the twins taking their daily walk. Enjoy.

Evan entertains his little brother

Grandma helps Ethan with his socks

Attempting to shoot a picture of all three together…

Ethan is not happy

He has learned to sit Indian style on the floor

Aiden, tuck your g-tube back in your shirt!

The boys with Carolina…we attempted a picture but things got a little out of hand!

Ethan woke up looking with his hair like this

Evan, what’s the problem?

Aiden looks like a little toy doll

One of his new facial expressions

There it is again

And yet another…

The newest thing, crossing his left leg over his right. He thinks he is so ‘sophisticated.’

Is Evan smart, cute, adorable, or sweet? Answer: see the picture

Aiden being cocky again

Things are busier than ever!  Ethan and Evan are not only walking, but climbing as well (up the gate, the stairs, the crib, the couch….anything and everything!) and that means we have to be extra vigilant to make sure all the doors/gates are shut and can never turn our backs on them, because we never know where they may end up!   Isn’t all of that supposed to wait until the “terrible twos”?!?!

They have both continued to have persistent ear infections (almost constantly since May) and all of the misery that accompanies them, such as fevers, not sleeping, not eating, crankiness and constant antibiotics, which makes life generally miserable for everyone.  This has in turn impacted Ethan’s hearing as well, and so (to make a long story short)….they will both be getting tubes in their ears on Friday, September 26th.  We are very blessed to have found a wonderful pediatric ENT doctor here in Dallas for them (Dr. Alan Murray), which is an answer to prayer.  He will be performing the surgery.  Please pray that everything will go well, that they will not experience any complications and will have a swift recovery. 

Aiden is about the same, although it seems that his symptoms have slowly begun to worsen, as we have seen in the past.  He is actually vomiting even more often than before, now that the tube is feeding into his stomach and not his intestines.  He continues to be on a special amino-acid based formula and is receiving reduced fluid and feeding volumes which are administered by feeding pump into his stomach over a continuous period of approx. 14-16 hours throughout the day. 

Right now it is a balancing act, trying to keep him minimally nourished and hopefully find something to help before he has significant respiratory complications from all of the vomiting.   Fortunately, we learned this week that he has been approved by the FDA and drug manufacturer for Cisapride, a limited access drug which is very effective in treating general G.I. problems. 

Hannah will be taking him back to Boston Children’s Hospital on October 1st, where they will test and monitor him while they begin administering the drug through their limited access program (Boston Children’s is the only hospital in the US that can obtain the drug through a very closely monitored program with the FDA and drug manufacturer).  This is a drug which was previously widely used for pediatric GI issues and was very successful with almost no side effects (they saw significant improvement in approx. 70+% of the cases); however, it was taken off the market due to some complications with improper testing and drug interactions.  It can cause serious cardiac complications, including death, under certain conditions.  This is why Aiden needs to be tested regularly to ensure his safety and that he does not have any reaction to the drug, particularly given his history of strange reactions to pharmaceuticals. 

We have not yet heard back from our insurance company regarding coverage for this visit, so that is definitely a prayer request.  We are so very thankful for Hannah’s mom, who has been such a blessing with her willingness to come back and forth to help out through all of Aiden’s constant hospitalizations and travels to Boston.

Additionally, the (wonderful) GI doctor that we have found in Boston believes that it is imperative that we find a way to get Aiden some very intensive feeding therapy very quickly, so that he can begin to take something by mouth–even if it continues to come back up.  Unfortunately, due to the constant vomiting he has significant oral aversion, so this is a major issue.  The doctor is concerned that if we miss the small window of ‘opportunity’ that we have now, Aiden may not take anything by mouth for years.  Feeding therapy of any kind is difficult to come by due to the significant shortage of speech therapists, and most feeding programs–even for minimal therapy–have months and months of waiting lists.  There are only a few *intensive* feeding programs in the country, particularly on an out-patient basis, and we are fortunate to have one here in Dallas, although it is extremely difficult to get into.  We have recently seen God open the door there for Aiden with a preliminary interview last Friday, which is a huge answer to prayer.  We are still waiting to hear back from them, so please pray that this will work out.   If he is approved and able to get into the program, we will have to take him into Dallas 5 days a week for 8 hours a day, for at least 4 weeks initially, possibly longer.

Ultimately, we know that he is in God’s hands and that our Heavenly Father most certainly knows what is best for Aiden…but the Cisapride approval is certainly an answer to prayer and at this point, the only recourse that we have. 

The next few weeks will be hectic with the twins tubes and Aiden’s Boston trip. Please keep them in your prayers that all goes well. 

Specifically, please pray for:

1)  Aiden/Trip to Boston

• Safety
• No adverse reaction and that the drug will work!
• That the insurance company will cover the visit, including transportation 
• Access to the intensive feeding program

2)  Ethan & Evan’s surgery next Friday

• That the surgery will go well, with no complications
• Speedy recovery

An additional answer to prayer: we have found a replacement for our mother’s helper.  Carolina started two weeks ago (and she is still here…what a blessing!).  She is wonderful with the boys, and they love her.  We are so thankful to have her! She and her husband are here from Brazil to go to Bible college.

Below is a short video of the boys and a few recent pictures as well.

Classic “happy” Aiden

Evan ponders life’s greatest question: “when do we get to eat?”

Apparently, he can’t even stand his own screaming

Ethan just took a bite of…something

Happy, smug, cocky…another classic Aiden pose

Evan is loving life!

The eyes just get bigger every month

Ethan tried to break into mommy and daddy’s room. If the door is not closed, they move as fast as possible to get in

Evan demands to be released from “prison”