After 114 days, Aiden (and Hannah) are finally back home!

All things considered, he is doing quite well. Although he still vomits, it seems to be less than he previously did. Of course, time will tell how well he does so please continue to keep him in your prayers!

Below are a couple of videos. The first is Ethan’s reaction when he sees Hannah (in slow motion). The second is of Aiden ‘dancing’ just before he left Boston.

111th day away from home (May 10)

Aiden is laughing it up in the video below. Not the best quality but it is great!

107th day away from home (May 7)

Aiden enjoyed his time with Grandma & Papa last week, and is now back at CHB for a couple more tests this week. The results came back from the manometry testing and the diagnosis is, according to the Doctors, not a good one.

The test results show that Aiden’s small intestine is not functioning and not responding to any of the various medications or challenges that can be used to force the intestines to function. When comparing last year’s results for the same testing process against the most recent test, it represents a dramatic and rapid change.

This type of dysfunction generally spreads to the large intestines, stomach, colon, etc., and would substantially worsen over time. It is difficult for them to say how conclusive this is but the inconsistencies between the last round of tests are not good, particularly given the rapid degeneration.

At the same time the doctors are somewhat puzzled because (in their words) “Aiden is once again a mystery.” His other test results and symptoms are not consistent with what they normally see with this type of disease. Given the many inconsistencies, they feel that there may be another underlying cause for the dysfunction and want to do some additional Genetics/Metabolism/Mitochondrial testing. Earlier this week, they did some blood work and sent it off to a special research lab for gene sequencing. In the meantime, we are waiting to hear back as to whether or not they can schedule a special type of neural MRI for Aiden. Right now, it is setup for May 28th and we are trying (and praying) to get it scheduled by early next week.

With the weather heating up, E&E get to splash in the pool and can’t get enough of it. The water is not quite warm enough to go in so they put their feet in (of course, sometimes they try to jump in!).

The video below is of Aiden letting everyone know how much he misses them (with a little help from his Aunt Amisha).

Simply Aiden

Getting ready to Skype with Daddy

Hard to tell which one is happier

A good bye kiss to Grandma

Looking forward to some splashing

They can’t get enough

He liked his tie

Mowing in his dress clothes

Evan doesn’t want to pose

97th day away from home (April 27)

Since Aiden has no appointments for over a week, he and Hannah are going to upstate New York to stay with Manish’s parents. Aiden will love having all that room to run around and seeing his beloved Papa, Grandma and Amisha! Here is an image of him first thing in the morning.

Imagine waking up to this every morning

95th day away from home (April 25)

As expected, the endoscopy and colonoscopy showed nothing. Were are waiting for the results on the manomatry and biopsies but don’t expect anything to be found.

The twins have been sick all week with a fever, coughing and runny nose. After anti-biotics and a host of other medicines they are feeling much better. They were restless in their cribs so they got to sleep in Daddy’s room for a couple of nights. Unfortunately, this can create some bad habits and they wanted to make that their new bed even when they felt better.

Their new thing is wearing Manish’s sneakers and shoes. They love putting them on and running all over the place with them. On more than one occasion, he has been unable to find a matching shoe!

Below is a video of Aiden singing and some pictures of the twins.

Who stole my sneakers?

I thought so

And this one has my other pair of sneakers

Comfortable?

Determined to make them work

Time to trade

Apparently he loves bare feet

So does Evan

After over a year, he finally managed to get back into our bed

88th day away from home (April 18)

We went to the Orthopedist and there is some good news regarding Aiden’s arm. The latest x-rays looked good and it appears to be healing well. We no longer have to try to keep it immobilized (which was no longer very effective anyhow!). Aiden is very happy to have use of his arm again! On Tuesday he will go to the OR for the endoscopy, colonoscopy and manometry tests. It will be a long day for him but it will be good to finally have these tests done.

As far as the twins, basketball has become the latest craze (especially for Evan). He is quite good at dribbling it and wants to “own” the ball whenever he gets his hands on it. We are working with helping him learn how to share it 🙂

Below are a few recent images. Please keep Aiden in your prayers as this will be a big week for him!

Evan’s new favorite – playing basketball

Ethan preferred to play with the sticks

Slam it Evan!

Ethan’s turn

2 on 1

Someone get it

Evan plays the “drums”

Ethan, hang on tight!

They love this

Flying high

Enjoying himself

81 days away from home (April 11)

It has been a busy and hectic couple of weeks. Although Aiden is now outpatient, they have had to be back at the hospital nearly every day for something (follow-ups , dressing changes, x-rays, etc.). The j-tube site is now looking much better and is nearly healed, although there is still a bit of topical skin infection at the surgical site.

We finally have a specific date for the endoscopy, colonoscopy and (3 different types of) manometry testing. Provided we can wean him off of the pain meds by then, Aiden will go to the OR on April 20th for the scopes and placement of the manometry catheters. He will be inpatient for a couple of days while the testing is taking place, and to collect data.

He has already had MANY endoscopies, a partial colonoscopy, and two types of manometry testing previously; however, because of everything that has taken place in the past couple of months, the doctor want to repeat these tests in order to rule out certain diagnoses and obtain more information for comparison, to determine what has changed in Aiden’s body and tailor a more specific treatment plan for him. At this point, there is nothing else that they know to do to diagnose his issues. If these tests do not show something, they simply do not know what else to do for him at this point.

Because narcotics change the body’s motility and can skew the results of the testing, he must be completely off the pain meds prior to the tests. This is a huge challenge for his body and will have to take place in a fairly short period of time. He has been on strong pain meds such as morphine and oxycodone since early February, and is still in a significant amount of pain. In fact, he has yet to complain even once about the broken arm. Instead, he is constantly telling us that his “tummy hurts” (lower abdominal area), despite the fact that he is still on the pain meds. Please pray with us that the weaning of the pain meds will go well, with minimal withdrawal symptoms, and that the doctors will be able to find a way to adequately address the pain that Aiden continues to experience on a daily basis.

Due to the diagnosis and symptoms of pulmonary edema following the recent surgery and his continued long-term oxygen requirements, Aiden will also be undergoing some cardiac testing and follow-up in the next couple of weeks. Since his days in the NICU, despite his respiratory and other issues, he has always been very stable cardiac-wise. However, he has also never experienced pulmonary edema, and the doctors want to be cautious and rule out pulmonary hypertension, as well as any possible cardiac causes for these respiratory issues.

After discussing at length the possibility of using a capsule camera to try and diagnose the cause of Aiden’s pain and possible obstruction, the doctors have determined that he is still too small to attempt this procedure, as the camera could become lodged internally. To date, the smallest child they have performed this in is a 4-yr. old, and due to all of the various surgeries that Aiden has had in his lower abdominal area, there is also likely to be scar tissue that may interfere with the safe passage of the capsule camera.

The current plan is to perform the testing scheduled for 4/20. If they are still unable to identify anything through that testing, they hope to be able to keep him stable and growing for 3-6 months, at which time they may attempt to place a pseudo-capsule, which is the same size as the capsule camera. If the pseudo-capsule passes successfully, they would then attempt the procedure using the camera. If the pseudo-capsule does not pass, it should dissolve on its own within a few days.

After experiencing–and resolving–a number of issues with Aiden’s PICC line (which we were hoping to keep intact until after his next round of testing), it had to be pulled this past week when it developed a hole in the tubing. It will most likely have to be replaced when Aiden is taken to the OR in a couple of weeks.

The fractured humerus seems to be healing without any complications. Although the bone is ever so slightly displaced, they are hopeful that will correct itself due to his age, but have to monitor is closely as it heals. He will have another follow-up appointment and x-rays next week to continue to ensure that everything looks okay.

In the meantime, Aiden continues to be sad that his two comfort items and best friends, his blankie and his bear–both especially important when he is not feel good–have both gone missing in the past several weeks. 🙁 Although we have tried several replacement blankies, none are quite the same, and have yet to find anything similar to replace the beloved Mr. Bear.

The twins have been doing fine and enjoying “school” three times a week at the learning center at Church. They attend Tuesday through Thursday for 7 hours a day. Translation: 3 mornings and early afternoons of quiet, peace and bliss for Manish 🙂 (of course, he is at work but Hannah’s mom gets a nice break from the craziness).

Below is a video clip of the twins. (It is in HD so you will need a high speed connection to view it.)