Veritaz Photography

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…

Just when we thought that we had a plan to return to Texas, Aiden’s liver numbers have spiked and the past several days he has also been experiencing some internal bleeding from his digestive/intestinal tract, so we are now trying to figure out what is going on.

Late last week, the medical team here came to the decision that (since they cannot identify the cause/source of Aiden’s pain) they would focus for now on trying to identify a more effective and viable long-term method to control the pain, and thereby (hopefully) control some of the symptoms that he is experiencing. Because he cannot stay on the narcotics long-term, they are attempting to replicate his response to the opioids by using other pain medications that are often used in patients experiencing IBS and other diseases that cause severe abdominal pain.

This will be an extended trial & error process, and so we had worked out a detailed plan to return to Texas and continue this process overseen by Aiden’s physicians in Dallas, while the CHB team would continue to provide direction and advise long-distance until our next visit.

As part of this process we had expected to begin weaning the current pain meds last week and begin the transition to the other drugs; however, due to the liver & bleeding issues that have come up, they have held the wean anticipating the possibility of additional testing and the need to continue to protect his lungs so that he is able to handle anesthesia.

Last Wednesday, we met with a hepatologist to follow up on the increased liver numbers. She ordered some additional tests to rule out some concerns and follow-up on possible causes. Based on the results, it appears Aiden’s liver numbers continue to rise and they think he may need a liver biopsy to figure out what is going on. We will meet with his primary care physicians over the next couple of days to determine next steps. Thanks for your continued prayers!

It has been a rough month for everyone. Manish has pretty much been a single parent all month juggling the boys, a job and the household. To top it off, he was sick toward the end of the month with a G.I. bug that has been spreading across Dallas.

Hopefully, May will be more peaceful!

Below is a short video of Aiden walking in circles praying about getting back to the airport, going home and getting a good night sleep.