Aiden is back!

Aiden and Hannah finally came back home yesterday afternoon after 3 weeks at Boston Children’s Hospital. Aiden’s g-tube surgery went well on Friday, and although he did have a bad reaction to the anesthesia and a rough couple of days afterwards, he is now recovering and healing well. He continues to vomit multiple times a day, losing good portions of his feeds now that he is again being fed into his stomach. Although we have ruled out a number of possibilities, we still do not have the answers we had hoped to find.

There is a possibility that we may be able to try a special medication for him called Cisapride, which is only available through a limited access program in Boston. It is possible that this medication may help minimize some of his symptoms (we will not know unless we try it for approx. 2 mos.). We will not know if he is approved for it for several weeks, and then we would have to return to Boston to administer it. That is the only option that we have for possible treatment at this point, and of course, there is no guarantee that it will work for him. Please pray that Aiden will be able to keep more of his food down and that the persistent vomiting and increased volume will not cause any major respiratory issues as it has in the past.

We posted several images of Aiden’s journey to Boston as well as some of Ethan and Evan below.

Also, we are actively looking for a new babysitter/mother’s helper now that Dana has gone back to college. Please pray that we will find a good replacement ASAP (they will have big shoes to fill as Dana has been wonderful)!

The resp. therapist and Aiden had a date 30,000 feet in the air

People came to entertain Aiden with their music

Aiden and all his EEG probes (he looks like something from Star Wars)

What a colorful pony tail!

The little Sheik with his turban

Grandma came all the way from NY to play

Grandpa was there too!

Meanwhile, the twins battle over the phone (their favorite toy)

Here comes Evan

He loves to chew on everything

Ethan, what is up there?

And now its time to relax

Oh no, why the crying?

Because he wants to get out of ‘jail’

Evan looks ferocious!

Ethan invades the pantry (he decided it was time for a snack!)

Boo has such big eyes

Ethan is simply adorable…and the shoe is very tasty!

Learning to fetch :-)

Evan looks pensive

Ethan peruses the local stocks

So happy to hear that Aiden & Mommy are coming home!

Evan is learning to feed himself…sort of

Ethan too…

He is so happy to be back!

Evan curls up on the couch

Dana has been such a wonderful babysitter this summer….we will miss her as she goes back to college

One of Aiden’s many new faces

Such a happy little baby!

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    5 Responses to “Aiden is back!”

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    1. Kari says:

      Hi, my name is Kari….I am Kasey’s sister. I came across your blog when Kasey posted your link on her site. Anyway, little Aiden has continued to be on my heart and mind as you have been searching for a diagnosis. I’m sure this is a one-in-a-million shot, but nevertheless I wanted to share with you what I saw on tv last night. There is a show called “Mystery Diagnosis” and last night it was about a baby boy who kept vomitting and having diarrhea…..and the doctors couldn’t figure out why. After much searching and many specialists, they had finally found the rare diagnosis of Mastocytosis. They said it is such a rare disorder, and is not commonly tested for. I immediately thought of Aiden. I have no idea if this information helps you at all, but I definitely thought it was worth sharing.

      No matter the outcome of this information, I pray that you’re able to find some answers soon.

      Continuing to pray for little Aiden ~ Kari

    2. Pam Meester says:

      Welcome Home Aiden & Hannah! I’m glad you are all back together. I see Aiden had some special visitors while in Boston Children’s and some music too. Will continue to pray for all….you may want to consider a lock on the pantry! Love, Pam

    3. I pray this works. Glad the family is back together

    4. Hey! We are so glad Hannah and Aiden are back. We are praying that God gives you wisdom deciding what steps would be best. It is amazing how far they have came since we saw them in the hospital almost 1 year ago! We miss you in Sunday School and church.

    5. Dana Berryman says:

      Oh, my goodness! Those pictures are so precious! I thought about them the other day and realized how much I miss them! Give ‘em each a huge kiss for me!!

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