This has been a long week for Aiden (and Hannah). Yesterday morning, they did a high-resolution CT scan and today the pulmonary radiologist will review the scans. Hopefully, there will be some type of conclusive results. Right now, there is nothing definitive as everything looks good. In the meantime, they are working on trying to get him to eat without his feeding tube and see how he does.

While the first week at Boston was great, this week was not as good. By that we mean that the level of care left something to be desired. The doctors that we specifically came to see have been great but the staff has not. The residents and fellows have minimal knowledge and little patient care and with the nurses it has been hit and miss. One nurse even turned off his oxygen by mistake in the middle of the night by mistake! Please continue to keep Aiden in your prayers.

The plan was to have a family meeting early next week with us and the physicians and discuss what the next steps will be. Unfortunately, one of the primary doctors we came to see will be out of town (this we just found out yesterday). So please pray that someone would take a closer look at all this and try to put the pieces together and come up with a sensible solution and game plan. It has been frustrating these last couple of days. It is one thing if they try and try and can not come up with anything because then we can be confident that they did everything they possibly could. But right now, we don’t feel like that is the case.

As far as Ethan and Evan, they are doing great. The only exception being, they seem to be getting up during the night lately. Not sure why (maybe they miss their mommy and little Aiden). Some images are posted below.

Also, we are looking for a new babysitter to help with the kids as Dana (our current) is leaving at the end of the month to go back to college. Dana has been outstanding and we will all miss her greatly! Please pray that we can find someone ASAP to replace her.

Thanks!

The twins in their little ship

Little Pirates indeed!

Uh oh, there is mutiny aboard!

So, we moved over to the chair…Evan is making a phone call

The boys want to go outside

We always knew they were comic book characters

Finally, they made it outside

Evan thinks of all the possibilities

Ethan seems disgruntled

They check the area out

Evan is loving this

Ethan is not too sure about it

Now he gets it

And there he goes…

Ethan liked his little walk

But he hates being on the grass

Evan is enjoying himself…

…really enjoying himself

So adorable

Evan, you look mischievous

Time to go back inside

Evan has a milk goatee and is upset

But Cheerios makes him happy

Ethan likes his too

And he loves his toys…

Baby feet

Evan is cranky and needs to go to sleep

On Wednesday, they performed a triple scope which included a laryngoscopy, endoscopy and bronchoscopy and took biopsies and cell culture samples from the lungs, esophagus and stomach. They were successfully able to extubate him and he spent in the night in ICU as a precaution. He did develop some atelectasis (a collapse of lung tissue) in his right lung from the procedures. On Thursday, they did an EKG, echocardiogram, saliva gram, upper G.I. series with small bowel follow through, modified barium swallow study, abdominal ultrasound and a chest x-ray.

So far, some of the results are pending but for the most part everything looks normal. The larynx does have a valley in it which could be a laryngeal cleft but this really depends on who is making the call (this can be quite subjective). Either way, they don’t think that this is causing all the problems. From the cell culture of the lungs, preliminary results showed iron laden macrophages which indicate there was slow bleeding into the lungs over the past couple of months. At this time, it can not yet be determined to what extent this could be causing his issues. They did also recommend a host of cardio consults given that he is still on oxygen and given that there is some blood in the lungs.

Although they can not pin-point anything yet, they are extremely thorough in their thought process and execution which has been very encouraging. We are confident that he is in very good hands. Please continue to keep him in your prayers. Specifically, that he would continue to have good care, that the atelectasis would resolve and that they can properly diagnose and correct his issues within a short time.

Ethan and Evan continue to grow, eat and dominate. There are some updated pictures below and a short video clip of Aiden having the time of his life. He is a happy boy and gets along with everyone. But no one can make him laugh like Evan. They seem to have a special bond. In our conversations, Hannah and I now refer to Aiden as “the head.” As shown in the video, he is all head! Some mornings, it literally looks like it has grown overnight.

Thanks again for your prayers and thoughts!

Three of a kind

Ethan and Evan make an alliance in the kitchen

Aiden, let’s play some football

He is so adorable

…and so handsome (and he knows it)

Ethan likes to carry things in his mouth

Boo!

Hey Ethan!

This looks like trouble

Evan loves to stand and clap

Mom has her hands full!

We love you Aiden (even though you pulled your feeding tube out)!

The ambulance came the day he went to Boston

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On Monday (August 4th), Hannah will be taking Aiden to Boston Children’s Hospital. It has taken quite a while to get all this worked out, but our insurance company agreed to have him taken via air ambulance in a small commuter plane. The plan is for him to undergo multiple tests and procedures throughout the week to attempt to determine the cause for his recurrent vomiting. There is a great deal to do in preparation, so we are very busy trying to get everything ready!

Everyone is doing well. Manish has been very busy with his new position at work and the boys are all growing so quickly. They have gotten to the point where they were moving the gate that confined them (breaking out of ‘jail’ ;-), so we the entire living room has now become their “domain” and they have much more room to play in. In the video below, you can see Ethan and Evan rolling off the couch onto the mattress. They absolutely love this game!

Also, you probably noticed our brand new blog. We decided to roll the triplet blog into a new one designed for Manish’s photography business (Veritaz Photography). Things are still under construction but it was time to switch. The images and video clips are larger with more detail and overall, it has a cleaner look and feel. This will also allow specific comments at the bottom of each post. By default, the link that sent you here will only show posts for the triplets but if you want to see wedding pictures, etc., then you can view them by navigating from ‘Categories’ at the top of the page.

Well, it’s time to pack and get ready for the very busy week ahead. Please keep us in your prayers, particularly Aiden. Please pray that God will give him the right doctors, nurses and technicians, and that He will give them wisdom as they try to diagnose and treat Aiden. Pray also for safety during the procedures that Aiden will have on Wednesday (08/06), when he will have to be intubated and put under general anesthesia, that he will not have any adverse reactions or complications. We hope and pray that the doctors in Boston can figure out what the cause of this issue and take care of it once and for all.

God Bless….

Oh, and leave a comment!

Ethan is driving already!

Still driving

Evan, are you stuck?

Such big eyes

The prisoners want to get out of jail

Aiden, are you planning on helping them?

The boys love when daddy throws the blanket on them

Evan is completely out

Ethan is so happy

What a strange expression

Evanly Boo

Aiden, what happened to your hair?

I guess he really likes it

Evan likes to hold his leg in the air

Ethan is contemplating a jail break

Thank you all for your continued prayers specifically regarding this matter. The last 48 hours have been filled with multiple answers to our prayers and concerns about getting Aiden to the Aerodigestive Center at BCH. As you know, we have been concerned about how to transport Aiden to Boston, and have spent many long hours trying to identify appropriate transportation and work out logistics, while waiting to hear back from BCH with a definite date.

As part of the transportation issue and to obtain approval to take Aiden to BCH, our insurance company had requested a compilation of very detailed letters and other information from the pediatrician and the various specialists that Aiden has seen. The insurance company also requested that the doctors make a specific medical determination as to how they felt Aiden should be transported. Yesterday afternoon, while Hannah was at the pediatrician’s office finalizing information to be sent to the insurance company, she received a call from the folks at BCH. They were able to work out the scheduling issues so that Aiden’s appointments will begin on August 5th, less than 2 weeks away!

Now we were really worried about how to transport Aiden. We have researched a number of options and contacted various transportion organizations, but none seemed to work out. This morning, we heard back from the insurance company. Based on Aiden’s medical history and the doctor’s recommendations, they authorized an air ambulance for at least the first leg of the flight. The return will be dependent upon what is found in Boston and Aiden’s treatment plan.

Whew, what a relief! Due to Aiden’s oxygen requirements, continuous feedings, cyanotic vomiting episodes, uncertain reaction to flying, and need for access to certain medical equipment, we have been very concerned about how to best transport him. There are still a number of details to work out, but all of the major elements are now in place, which is a such an answer to our prayers and a weight off our shoulders. Now we must pray that God will give us the right doctors and give them wisdom to know what to do.

Your prayers have meant so very much to us — it is impossible to express just how the knowledge of all of your petitions going up to the Father on Aiden’s behalf have upheld us throughout this. Please, continue to pray that we will find answers and solutions in Boston. We are so very grateful for each of you. Thank you from the bottom of our hearts.