Not the break we wanted

Day 71 (March 31, 10:30PM)
As if things weren’t bad enough, last night Aiden fell off the bed (while he was trying to get a toy that he dropped) and broke his left arm. His left humerus is fractured and will probably take a few weeks to heal. It was a clean break but it is so high up on the arm that they cannot put a cast on it. So, his arm is taped to his body (a sling would not work so this was the next best thing). So, add one more thing to pray for!

We never thought that Aiden would be the first to break a bone as the twins tend to run around a lot more as they do not have all the equipment, tubes, etc. Over the past several days, they have really enjoyed themselves at a kid’s place called Going Bonkers and then we took them back to the Dallas Arboretum. The weather is finally getting nice and yesterday was the first day to reach at least 80 degrees since 10/20/2009 making it the second longest number of consecutive days in which the temperature stayed below 80 in Dallas. They also got their haircuts and, for the most part, seemed to enjoy it.

They love cars

…and climbing…

…and crawling…

Ethan wanted to make sure the white car was still there

The “candy machine” was also fun

Here he comes

Dad went down the slide and caught a picture of the boys

They loved bouncing around

The arboretum was beautiful

…and creative…

The boys love flowers

And getting to touch them was a lot of fun

Boys, get off the dirt!

Grammie had to supervise

It was hard to get them to look and smile

Such brothers!

Evan’s look of determination

Taking a short rest

Evan smelled the flowers

Ethan was not interested

Aunt Aleta took them for a spin

Ethan, don’t eat that!

Despite all of the beauty around us, they chose to play with a dead branch

Daddy and his little bear

…and a kiss

Ethan wanted to fly

Here comes Evan…

My babies!

We got them to sit still by giving them pretzels

Grammie and her grandkids from Texas

Evan was a little scared to sit on the branch

So, we added Ethan

And then Kaylan

More pretzels

Time to relax

Back home and time to eat

Evan gets a haircut from Grammie

He is anxious to get it over with

Ethan is done with his haircut

And gave me a smile

    Leigh & Javier

    Leigh and Javier picked a beautiful day for the wedding! Both the ceremony and reception took place at the Scottish Rite of Freemasonry in Dallas.

    Richard McClure of A Very Special Day was a pleasure to work with! Bronwen Weber Frosted Art Bakery designed the cake, with catering provided by the Texas Roadhouse. Makeup artist Something You, did a great job getting the girls ready.

    Some favorites from their day…

      Spring?

      Day 69 (March 29, 10:00PM)
      He is still on IV antibiotics (through his PICC line) to cover a post-op infection in the surgical site. This surgery was to close the j-tube site, which had basically turned into an ostomy site. He is dealing with behavioral side-effects from the drugs but overall the pain is better controlled on the newer pain medicine. Tomorrow they are going to meet with his primary GI physician and we will have a better idea of what to expect next regarding tests, timeline, etc.

      His newest thing is saying “oh yeah baby!” See the video below to watch him in action.

      Day 61 (March 21, 10:30PM)
      After being discharged, Aiden was readmitted back into the hospital shortly thereafter. There were issues with his PIC line as the medications were clotting and he had to go back to the hospital to get it resolved. He will be there atleast through tonight and maybe even tomorrow night.

      +++++++++++++++++++++++++++++++
      If April showers, bring May flowers, what does March snow bring? The boys loved watching it snow and couldn’t stop talking about it this morning.

      Spring is certainly off to a strange start. It snowed. Aiden is still in the hospital. And our medical system and taxes are about to change thanks to Congress. I am starting to miss Winter :)

      Here are some pictures from the last couple of weeks.

      Spring?

      This does not look good

      Ethan, what are you up to?

      Please don’t touch that!

      Stop, you are scratching my car!

      Yes. You!

      So, I took the stick away

      And the other one came along

      Back to letting air out of the tire

      He loves this

      And now he succeeded

      But Grandma fixes things

      I licked my fingers and tried removing the scratches. Evan saw and tried to imitate.

      There goes the ball

      Boys, don’t even think about it

      Evan loves the outdoors

      Now he barks orders at Ethan

      But Ethan knows that his bark is worse than his bite (although he does bite quite hard)

      Time to play kickball

      Action shot

      Don’t pick it up!

      Twins

      The “oh my goodness” look

      They love to clean

      A yummy meal from McDonalds

      Got Ketchup?

      Grandma feeds her little bear

      Ethan combs her hair

        Out for a walk

        Day 57 (March 17, 11:00PM)
        Aiden is still at Boston Children’s Hospital. He had a rough day as he was in alot of pain. At one point, he had a fever of 103 degrees and it took quite a while to reduce it.

        Additionally, he has pulmonary edema which is an abnormal build up of fluid in the air sacs of the lungs, which leads to shortness of breath. This is most likely a result from the surgery, the pain and other associated factors.

        Please keep him and Hannah in your prayers. As you can imagine, she is quite tired and it will take him some time to fully recover.

        Aiden Update: 3/16 10:30PM
        Thank you all for your prayers! Aiden is such a little fighter, he never ceases to amaze us! He is so tough!

        He had not one, but two trips to the Operating Room (OR) today. Initially, he came out of the OR earlier this afternoon, following the jejunostomy closure. That procedure went very well, and he has an amazing surgeon and awesome anesthesiologist (handpicked by the surgeon) who did a great job.

        He ended up going back to the OR for placement of a PICC line (a type of central line). The second time around was definitely a little harder, but Aiden is such a champ! He eventually made it to the Recovery room and tonight he and Hannah are staying at the hospital. Hopefully, the wound will repair quickly and he will be back to “normal.”

        Of course, the long-term remains unknown. Our hope and prayer is that he eventually stops vomiting. Please pray to this end. Thanks!

        Aiden Update: 3/15 10:30PM
        The surgery will take place tomorrow at 9AM. Please keep him in your prayers!

        Aiden Update: 3/13 2:30PM
        The surgery date is fast approaching (Tues., 03/16). This procedure will be to remove the j-tube and close up the jejunostomy site in hopes that it will help alleviate some of the pain and perhaps help with the intermittent obstructive events that Aiden continues to experience. The surgeon will also use a flexible scope to look around the intestines to see if he can find any other cause for Aiden’s symptoms.

        Of course, the downside to that is the question of how we effectively feed him without the j-tube. Right now, as long as he is consistently on pain meds, he does not throw up. Once we start weaning the pain meds, the vomiting will return and it will be difficult to ensure that he is getting the proper nutrition, and also difficult to protect his lungs from aspiration.

        Please continue to pray that the doctors will be able to identify and diagnose the problem before it causes further respiratory and other issues.

        On a lighter note, last week Aiden and Hannah enjoyed a day out of the hospital to run some errands and get Aiden’s hair cut, thanks to another Dallas-area family that they have met at Children’s while in Boston. Carter is just a little bit older than Aiden and is a multvisceral organ transplant recipient. Aisen was thrilled to ride in their “truck” (big SUV), and Hannah and Chelle enjoyed the chance to get some fresh air and go to Walmart for diapers and other essentials!

        This weekend is rainy and cold in Boston, but no snow. Aiden has been asking to see the sun, but it sounds like it will be some time before we are able to grant that request!

        Aiden Update: 3/10 11:30PM
        The J-tube surgery is scheduled for next Tuesday…finally! Other than that, there is not much else to report. He has good days and “not as good” days but has been more of his old self lately.

        Aiden Update: 3/08 10:30PM
        The surgeon informed us that he would rather wait till next week before performing surgery to remove the J-tube. He really wants Aiden to be back at his baseline and is being very cautions (even if it means being overly cautious). Hopefully, it will be early in the week.

        Aiden did have a couple of good days and was his old, cheery self! Thanks again for all your prayers!

        Aiden Update: 3/07 10:30PM
        Hopefully, this coming Tuesday, Aiden will have the surgery to remove and J-tube. In the meantime, he has been enjoying his freedom away from the hospital. This weekend, he even got a haircut!

        Loving it

        Aiden Update: 3/05 8:30AM
        Discharged! Yesterday afternoon, Aiden was released from the hospital. He was very happy once he realized what was happening and kept saying “go buh-bye…go buh-bye…”

        Hopefully, the surgery will take place sometime next week but Aiden (and Hannah) are very happy to leave the hospital (at least for a little while). The pain is still an issue but regardless of whether he is in the hospital or not this is an issue. It is primarily a problem when he is trying to pass something.

        Please pray for the pending surgery and that his issues would be sorted out.

        Aiden Update: 3/02 11:00PM
        It looks like it will be another week before the surgery :( The surgeon is concerned that the skin around the J-tube site is weak and needs some time to heal. Trying to remove the tube and then patch up the flesh would could cause a fistula (an abnormal connection between an organ, vessel, or intestine and another structure). He wants to move very cautiously with Aiden and also wants the lung to have a little more time to heal. They are considering releasing him from the hospital for a few days if they can figure out how to manage the pain.

        Today, he was happier than usual. In fact, he even laughed a little (see the video below).

         

        Aiden Update: 3/02 7:30AM
        They did not make a decision yesterday (Monday) on whether or not Aiden was ready for the surgery. But, hopefully, they will follow through today and at least review his overall condition and make the assessment accordingly. Yesterday was a better day as he was more comfortable and even smiled a couple of times! Of course, Aiden not smiling is like water not being wet so he must have been absolutely miserable the last few days.

        There is a short video clip below that shows his happy moments. Please pray that the medical staff would finally make a decision and that the J-tube surgery would take place this week!

         

        Aiden Update: 2/28 10:30PM
        (We will continue to post daily updates of Aiden at the top of the most recent post and the rest of it will be the regular triplets updates.)

        Tomorrow is an important day as they will determine if Aiden’s lungs are strong enough for him to be anesthetized. Please pray that this is certainly the case because the J-tube wound is not going to get any better until the surgery. He is a bit of a basket-case as the narcotics make it difficult for him to get much sleep.

        ++++++++++++++++++++++++++++++++++++++++++++++++++

        Today is the last day of February and what a month it has been! There never seems to be a break when you have 3 two-year olds (one of which has chronic medical issues).

        It has been quite a while since we had nice weather. This past weekend, it got up to 60 degrees and the boys were excited to finally get outdoors again.

        Besides battling with allergies, they are both doing very well. They miss Hannah and Aiden but get to talk to them on the phone every day. The latest craze is the garbage truck. On Friday morning, their Grammie takes them in the car and follows the garbage truck. They love watching it dump trash; probably because they too like to dump things around the house. Of course, any mess they make is their responsibility (usually).

        Grammie and her boys

        Hot stuff!

        Time to play outdoors

        Evan, blow some bubbles

        This would make a great advertisement for TruGreen

        Here comes Ethan and he has his ‘wand’

        Watching out for the doggies

        Loving the wand

        They used it to dig at the playground

        Evan loves being pushed in the swing

        Ethan still likes the baby swing

        What do you see?

        Daddy and his babies

        Another picture with Grammie

        Time to roam the neighborhood

        As always, looking for things to pick up

        A new find: sticks

        Ethan, you can’t take the street sign with you

        Evan was looking for the perfect acorn…and there it is

        Got it!

        Ethan wants to run away

        He surveys the damage from the snow storm