Hannah and Aiden have traveled back to Children’s Hospital Boston for follow-up and (possibly) surgery with the ENT. The surgery was initially scheduled for last week, but because the scope of the procedure has changed, the doctor has re-scheduled the surgery for 6 weeks from now and wants to try one more attempt at conservative management through drug therapy during that time. Hopefully, they won’t be gone too long!

In the meantime, Manish is (attempting to) handle the twins at home adn balance work, life, etc.

Aiden continues to do very well with learning how to eat and had been off of continuous oxygen for several months (athough he does still require O2 intermittently from time to time). Winter will be the true test of just how well he is doing. Nevertheless, we are SO thankful for all God has provided time and time again.

Below are some picture of the boys playing outdoors. Now that the weather is finally cooler, they are so happy to be able to go outside and run around.

Ethans declares: Playball!

Evan agrees

This is where we play

Looks like a hit

Wrong way!

Uh oh. The Boo-bear got a boo-boo.

He is playing outfield

Here comes the pitch

Homerun!

He wants another

Of course, someone had a football so we had to play that too!

Don’t tackle him too hard!

Catch me if you can

Time for some bubbles

4 year old! How time flies. It seems just like yesterday they were only a couple pounds and a few inches long.

The boys had quite a birthday. Papa, Grandma, ‘Oak’ and ‘Ms. O’ were in town. Ethan and (especially) Evan consider Oak to be their ‘best friend’ so it made this birthday a little more special to have him here.

Below are some pictures and video of their birthday including a McQueen cake, Mcqueen shirts and even a McQueen pinata!

All he wants is Cheetos. Addict!

What is in here?

Aiden, don’t threaten people!

They loved the cake!

Blow the candles, Aiden

Evan wanted the cars

You can tell what Ethan wanted

The perfect pinata

Evan with a big swing…

Aiden nails it…

Ethan’s turn…

There it goes!

Aiden decided to try a lollipop.

4

After the party (and a long nap), they want to Mimi’s house

Time to slide

Swing

Time for a break.

Intrigued.

Throw the ball high

Your turn

He wanted it to go “super high”

Break time is over and now time to play

He loves this!

Hi my little bear!

Just a few more gifts to open later that night

Smile!

Will McQueen be as popular next year?

The heat is brutal! There is a new record for most days in any August at or above 100 degrees. The total for August was 27 and that record is officially broken. Lucky us!

We do want to share some very exciting news: Aiden is (finally) completely off the morphine (as of 2 wks ago), and (drum roll, please!) so far has gone multiple days without throwing up!!! Yes, you did read that right-I am almost afraid to say it out loud! We are cautiously optimistic, as he has never gone this length of time without vomiting. It does appear that the gabapentin/neurontin and current combination of medications is working well for him right now.

Because he has not been throwing up and has decreased oral sensitivity & aversion, he has also made significant progress in feeding therapy and has been taking up to 8 oz. of baby food purees/day, while also learning to handle textures, chewing patterns, etc. His feeding therapists are completely amazed at the advancement he has made in such a short period of time. Additionally, despite constant ear & sinus infections since May, we were able to wean Aiden off of continuous O2 in June and since the vomiting has stopped, he has only been requiring occasional intermittent O2 support due to wheezing/desaturation exacerbated by the sinus infections and congestion.

In the pics below, you can see how much he enjoys crunching his Cheetos. Although he does not swallow them, he loves the taste and doing his crunches!

The video is of the boys jumping around at the play area at the mall. They love this place! Additionally, we took the boys to the Circus and they had a blast (although were a little scared at first).

Intrigued by the Circus!

Don’t try this at home.

“Little Fire Cracker” indeed

What an ending!

Time to crunch on Cheetos

“Yummy in my tummy”

Sitting down with Meme

Summer has flown by, and we are trying to soak it up and enjoy every beautiful, hot minute together! Aiden has therapy 4 days a week plus doctors appointments, but every minute together is so precious! Of course, it has been over 100 every single day for weeks, so is too hot to do much besides water play, and the boys are in the pool almost every day after Aiden’s therapy. They are so tanned & brow…and have quite the tan lines!! Even Aiden has quite the tan!

The boys have been taking swim lessons and are doing a great job learning how to paddle around the pool on their own without life jackets. Aiden has also been doing much better in the water, learning how to blow bubbles, not to gag & throw up every time water touches his mouth, and has started learning how to move himself around the pool a little bit instead of just bobbing around helplessly like a little cork in his life jacket & yelling for help every time his feet go off the steps!

Aiden continues to be on a hefty med cocktail as we try some new medications, but we have seen a few positives side effects from this current combination. Because the narcotics stop the vomiting, he has been doing great with his feeding therapy and has been working so hard to learn how to eat. Last week, for the first time ever, he ate 4 oz. of regular apple sauce, which has a ton of texture and is a huge accomplishment for him! He still has a long ways to go, but we are all excited about the progress he is making. He has also grown quite a bit and has gotten so tall (as you will see in the pictures). Since he is not vomiting nearly as much as normal, he is keeping more down and getting more nutrition. The reduced vomiting has also helped with his respiratory status, and has also helped de-sensitize his extremely sensitive gag reflux.

We are just praying that these positive side effects will last as we have just started weaning some of his medications. He has continued to have problems with the ear drum that ruptured, as it is just one more inlet for infection in his body, and his immune system is just weak and susceptible to infection. It seems that no sooner if he finished with a round of antibiotics, than he will start running a fever and the ear drum will again become inflamed. Thankfully, since we know the source, thus far we have been able to deal with it quickly before it causes significant respiratory issues; however, we also know that he cannot continue indefinitely on antibiotics.

So far, it has been a hot but fun summer! Hopefully, things will cool down (most likely not until September).

Fly Evan, fly!

Your turn, Ethan!

Simply…

…loving it!

Swimming is a blast!

Uncle Tim…

…here comes Evan

Loving every minute of special time with “Oak” (Uncle Sachin) & “Miss O”

So excited to see McQueen!

…it is debatable which was better, the movie or ALL the popcorn!!

Classic Boo

First time Aiden has ever been to the fountains without oxygen! Even with the frequent breaks, he loved it!

Triple Trouble

Aiden lives for this

Soaked!

Aiden, you need a haircut!

What are you boys up to?

Evan, I am not sure what to say.

The boys with Oak and Ms. O…what a great time!

The boys singing Happy Father’s Day to Papa (and Grandma…and daddy). Aiden is very happy with their performance.