Some progress…

Over the past few days, Aiden has undergone several tests, etc. at Children’s Hospital in Boston. One of the radiologists noticed that the intestines appeared to be malrotated. This twisting of the intestines is caused by abnormal development and can cause obstruction. Malrotation occurs in 1 out of every 500 births in the United States. It was about a year ago that a radiologist in Dallas mentioned the same thing and after following up with G.I., they decided it was a non-issue.

This afternoon, they removed his feeding tube to try and determine if there were any intestinal abnormalities. By using fluoroscopy (an imaging technique to obtain real-time moving images of the internal structures through the use of a fluoroscope), they confirmed that there is an abnormality. We view this as good news in the sense that there is finally confirmation that there is an internal issue. We are consulting with the physicians to determine the next steps. Most likely, Aiden will undergo a surgical procedure to correct these intestinal issues.

Additionally, the ENT Doctor agreed to perform the laryngeal cleft surgery after the intestinal/G.I. issues are corrected. While the cleft is not the sole cause of the problem, it could be a contributor and correcting it will rule it out as part of the problem.

In the meantime, the twins are living like princes. With mommy not around, they stay up late with daddy eating junk food and watching TV. NOT! Actually, Dad is much more strict with the twins and they have a very structured bedtime and eating schedule. But, they are living it up! They have enjoyed Grandma’s company very much and are enjoying the ourdoors more and more as the weather heats up. Below are some pictures of their daily adventures.

Evan has learned how to barter. If Ethan has something that he wants, he finds something to give him in exchange for what Ethan has. The other day, Ethan had a little toy owl and Evan brought a little toy guitar, laid it at Ethan’s feet and then took the owl and ran off. Ethan did not approve of the trade. These boys are just too much fun!

So much going on! Please keep us all (especially Aiden) in your prayers.

 

Ethan loves his little bunny

And his guitar…

Yes, there were ducks in our pool and the boys loved it!

Such a little monkey (or is it porcupine)

Evan, you want to play?

Is that a wave hello or good-bye?

Daddy and Evan

Daddy and Ethan

The boys also loved watching people mow the lawn

So curious

And also a little tired

Evan, what are you doing?

There he goes

A little bear amidst the roses

Ethan, stay away from the road!

They love hitting the bushes

And playing in the little fountain

Classic twins

Ethan fell down and got a cut…he did not even cry

Meanwhile, Evan checked out the cars in the street

Looking for the next car to check out

Ethan is back and making a run for it

    Boston – 3rd time

    These last few weeks have been like a continuous roller coast ride.  We have been trying to finalize travel plans for Aiden’s visit to Boston and the insurance company (who up until this point has been wonderful) dragged their feet until the last minute and denied the Air Ambulance flight a week before Aiden’s appointments. This did not give us sufficient time to appeal (the standard appeals process taked 30-60 days), so we requested an expedited appeal.  Late Thursday evening, they also denied this request, which effectively left us with no recourse.

    We were at a loss for what to do or how to get him to Boston.  The scheduled appointments and procedures in Boston had taken many months of waiting, planning and extensive coordination, with the physicians making special arrangements to ensure that the procedures are performed in the best manner for Aiden, so that he does not have to undergo anesthesia multiple times.  We had looked into commercial several times in the past, but flying commercial entails some medical risks, and Aiden’s doctors had advised against it. 

    Amazingly enough, at the end of the day yesterday (Friday) afternoon, the insurance company called us back and told us that the Air Ambulance had been approved!  There were no specific reasons they provided for their change of mind, or at least none that they wanted to share with us.  In any event, this was clearly an answer to the many prayers that were offered up on Aiden’s behalf, and it was unmistakable to everyone involved that God had answered in a miraculous way.  It is impossible to express just how thankful we are for God’s continued watchcare over Aiden! 

    Hannah and Aiden will be leaving for Boston on Sunday afternoon. Please keep Aiden in your prayers over the next several days as he will undergo a couple of tests to once again try to determine the cause of his digestive issues, in addition to re-inspecting the laryngeal cleft.  He will be in Boston at least through Friday.  Depending upon the results, if the doctors feel that surgery on the cleft is required, then he will stay through the following week at least .

    On a lighter note, we took the boys to the Fort Worth Zoo a couple of weeks ago, and they had a blast. The monkeys and cheetahs were their favorite of all the animals. The Fort Worth Zoo has a sign at the entrance: “Bring your little animals to see our animals.” How appropriate! Below are some fun pictures.

     

     

    The twins need a haircut

    Oops. Wrong set of twins. The boys are not sure what to make of the monkeys

    Meanwhile, Aiden is trying to be the star of the show

    A little monkey watching the monkeys

    The flamingos were very pretty and the boys stared at them for a while

    This guy did not really like me that much

    Here we are…hot, worn out and very thirsty

    Evan, what are you pointing at?

    Ethan, why the face?

    Let’s enjoy the outdoors!

    A little bear went fishing…

    …and saw a fish…

    and tried to catch it

    Aiden, don’t fall in!

    A soaked Evan makes an attempt to escape

    Aiden loves the water

    Kaelyn and the Trips got along so well

    Ethan’s newest friend is Uncle Tim

      One step at a time…

      After nearly 19 months, Aiden has taken his first steps and can walk half way across the room. He is so proud of himself everytime he does it! There is a short clip of him walking in the video below.

      Despite being out of the feeding program, Aiden still likes to take little baby bites (and even some big ones). Please pray that he continues to want to eat even though he is no longer getting daily therapy. Hopefully, we can get him up to Boston later this month where they will reattempt to diagnose what is causing the vomiting issue. If this issue can be corrected, we will put him back in the program.

      Ethan and Evan are doing very well and have gotten very good at repeating things we say. Grandma and Grandpa were here for several days and had a great time with the boys! Just a few short days later their Aunt Aleta, Uncle Tim and cousin Kaelyn were here for a week. We posted several pics below (more to come in the next update).

       

       

      Nice backpack Aiden

      Aunt Amisha and the trips tried a picture…but Evan did not fully cooperate

      Evan, are you still upset?

      Aiden is so happy

      Time for bed

      So silly!

      Ethan lies on grandma and chugs his milk

      What is going on over here?

      Wow!

      Laughing it up

      And Evan gives him a big kiss

      Now its Ethan’s turn to enjoy grandpa

      Evan enjoys his toys

      Ethan, don’t fall off!

      The youngest and oldest

      From oldest down to youngest

      Aiden, are you offering me something to drink?

      Evan, what are you looking for?

      Ethan loves his little red monkey

      …and his little cell phone

      And now Ethan is looking for something under the couch

      Aiden, have you ever ridden on an aiport fire truck?