Monday, June 20, 2011

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.


  1. Hey, can I be in your second wedding? After you become a little catholic? Owen looks like the Volleyball players from the Olympics. I know that this is a hard time and I cannot imagine what it must be like for both of you, but I am happy that they are able to find things to "correct" so that in the long run, Owen will be happier! So hard to think to the future when seeing him in pain now. Thanks for keeping us updated.


  2. Wow, that is a lot of medical info....praying the tests will give more answers so all the docs and therapists can come up with real, workable, long term solutions that will allow him freedom from his pain...and yours. Love you! Stay strong and glad I don't have to remind you to keep the humor. :)

  3. Wow. I am praying Day 7 feels a lot easier. And whether it does or doesn't, I am praying that you and Owen feel God's love in a major way.

    Also, please bring me a roll of the blue tape for my thighs.

    Love you!

  4. And he still is smiling! He is so strong. You both are strong. It is hard to hear that there is more wrong with him than you thought. No mother wants to hear that. Don't give up hope!

  5. Strong indeed! You are such a trooper (as is he). And you deserve all the $4.00 (or $10.00) margaritas you can find :)

  6. Hey babe. Thanks for the shout out on the dad day celebration and the nose picking gift I gave all our kids :) I really miss you. Thanks for posting all the pics of you and Owen. You look beautiful, just saying. You are a wonderful mom and you are doing a great thing for Owen and our family. I can't wait to see you soon when I come visit. Getting our vows renewed there would be awesome as long as we only have to get "a little bit catholic" and if we could pay in neocate.

  7. I wish I could send a HUGE hug through a comment post! Well, that and a weekend getaway from it all and....ok, I'm just going to settle for sending you my love via the blog!
    Your calls to the kids light up their eyes and they chatter about them throughout the day....especially at meals, in the car, and every moment in between! I appreciate your news, even when it isn't what we all want to hear. You are doing such an awesome job wading through every ounce of the information and leaning hard on your Lord for the strength to tackle each hurdle! I know what you are doing for your precious child, for your whole family, is very tough and very special all at once.
    On my end here in Raleigh.....I'm treasuring each moment with these little cherubs! They keep me on my toes! Love and hugs sent to you and O-dog!

  8. You amaze me with your incredible strength, as does Owen. What fun we had in NYC! I am on the hunt for $4 margaritas in NC! Love you.