Veritaz Photography

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!

Summer is off to a rough start! Our air conditioner, garage door, kitchen sink, and refrigerator have either needed repair or replacement. Additionally, both of our cars were hit within 8 days of each other (on both occasions, we were sitting still or parked). Add a leak in the roof, tiles collapsing in the shower, etc., etc., and it makes for one hectic & crazy month!

Aiden had a rough patch that lasted several weeks, starting shortly after returning home. Thanks to allergies that went into his chest and caused respiratory issues, and drainage that caused a ruptured ear drum, Aiden was wheezing and his stats were down, he was requiring continuous O2 and overall was just not feeling good. Thankfully, a couple rounds of good antibiotics and steroids seem to have cleared him up. He has been feeling much better this week, doing better tolerating some exercise and is not requiring nearly as much O2. Not sure what it is about the summer, but he always seems to do better in warm weather. He has started therapy again and is taking bites of yogurt and other baby food purees. His new “favorite food:” bacon! LOL! Of course he has never tasted it and will not put it in his mouth, but he likes to ask for it!

Aiden loves talking to the “Talking Cat” on Manish’s phone. They are very good friends as “Cat” literally will repeat everything Aiden says. Each of them has their favorite apps! You can see Aiden chatting away in the video below and there is also a clip of the boys wrestling with “Oak.”

Summer has most definitely arrived in Texas! It has been 100+ degrees, and the last few days there have been heat advisory warnings throughout Dallas. After freezing in Boston for the past couple of months, we are loving it! Of course, we are taking advantage of it by going swimming as often as possible, and now that Aiden is feeling better, he is so happy to join his brothers in the pool. Consequently, it is sometimes hard to keep up with laundry so the boys occasionally do not have clean swim trunks and Manish has…improvised on swim attire. It makes for some very amusing pics!

Getting ready to race…

Ethan, stay focused!

He is all hair and tongue

Pitstop

Run boys!

Aiden tries to avoid getting hit from behind

Tiny little muscles

Someone had to sit in time out for bad behavior and did not like it

He patiently waits out his sentence…