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!
Swimming is a blast!
…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!!
First time Aiden has ever been to the fountains without oxygen! Even with the frequent breaks, he loved it!
Aiden lives for this
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!