Medical Mumbo Jumbo

Day 6 at the hospital was not easy. 

Not even gonna lie.

There have been some tears shed today, both his and mine.

There's a lot going on with this guy and I'll do my best to sum it up. Some of it I've already mentioned:
One big issue is that he's "low tone" which basically means he's gotta beef up those muscles. He's been in so much pain, that he's gone above and beyond to avoid using his abdominal muscles. (I avoid that too but not from pain.) This has led to clumsiness and he's overused one side of his back making it tilt to one side more than the other. They are doing a lot of exercises to work on these things and they are very unnatural looking. They are also using special tape that is supposed to help stimulate the muscles.

He has also been working doubly hard to protect his esophagus from pain by curling his tongue up in the back of his mouth and sucking in his cheeks to try to prevent food from going down and hurting him. So, they are doing a lot of oral motor exercises during feeding that should hopefully correct that issue. Today there was some major cheering when he used his upper lip to clean some food off his lower lip. (I know, it's really the little things in life isn't it.....)

He keeps breaking out in rashes all over, so they're sending us to an immunologist to run some tests and see if some of his cells are working overtime and producing too many of a certain "viral attacking" kind. I don't know too much about that yet, but at the same time as those tests, they want to test his chromosomes and see if there are any abnormalities there that could be the cause of all of his GI issues.

Needless to say, trying to process all this has been a bit overwhelming. I thought we would come up here, eat a hamburger, and go back home. ha ha. I wasn't expecting to find out more things that were wrong, both physically and possibly internally, but we're working through them.

So that's our medical update. I know I used a lot of big terms like viral attacking, muscle stimulation,  and cells; I'm hoping to have my degree soon. Hopefully you were able to follow along.

We did go into the city on Saturday and that was a lot of fun. After sitting in uncomfortable chairs at the hospital all week, the walking felt quite nice too. I had never been to New York before and the skyline was amazing. It was unbelievable and I hope to make it back there before we go home.

Here's Owen and I at the Plaza. Aren't we posh?

 

The boy has a love affair with this stroller. Seriously.

Nana and I may or may not have found a place that served $4 margaritas and we may or may not have partaken......

This is the cathedral where Todd and I will renew our vows one day. We may have to become a little bit catholic first though.

Here's what I caught Owen doing half the time.

Clearly he gets his manners from his father.

 

We all felt like crashing after the day,

so Sunday was more low key; we woke up and did some Father's Day celebrating from a distance.

Thankful for the great dad my kids have, the great dad I have, and the Dad that's giving me strength and courage when I need it the most. Hoping and praying that tomorrow is a better day.