Wednesday, May 13, 2015

Week Two - I'm over you.....

Not gonna lie people,
this has not been my favorite week, although it got off to a good start since my parents came to visit, which was awesome.

Here we are happily awaiting their arrival:

They got here and we went into NYC on Saturday which was also awesome and not so awesome. I had a great time with my parents but some people didn't so much love the crowds and those people did a lot of whining before they finally shut down and crashed, leaving me to actually stroll in peace.......but I won't name any names.

The unfortunate part of my parents coming was the part when they had to leave.
What the Heck?! 
WHY do people keep leaving us up here by ourselves with these crazy Northern Drivers and such?! ;)

Once we survive (and I do mean SURVIVE) the drive to the hospital, Owen has been doing really really well with therapies. Apparently, based on questions I've been getting, I need to explain a little bit more about the purpose of our trip. Feel free to skim the medical update and get to the crazy if you want to shake your head and judge me...... We are here for two main reasons: 1. We really need Owen to gain weight because of food rather than formula and 2. Owen's last set of allergy testing came back negative for everything.......which is pretty cool but also can mean absolutely nothing with his disease. Basically, in a nutshell, the tomato, wheat, egg, soy, dairy, peanut, avocado, etc that all came back positive four years ago was no longer positive which means we can start reintroducing those foods in his diet. But even though the blood work came back negative, his esophagus and intestines can still swell up and go cray cray on the inside with no outward physical signs. Was that clear as mud for ya? So even with negative results, after being told that certain foods will make you sick for four years, you can't just hand a kid a peanut butter sandwich and expect him to not have any fears about ingesting it. Hence, we have been introducing things slowly, in a controlled environment, and under the watchful eyes of expert doctors in all things feeding, swallowing, and GI. IE - that's why we're at St. Joseph's.

Things are going very very well. And by "well," I mean Owen is working his ass off trying to please his therapists, doctors, and myself. He gets strapped in a car seat five times a day and is forced to eat things he has never tried before. In between those sessions, he works hard in PT to build up his upper body and work on his posture because he still hunches over to try to protect his abdomen. So the boy? He's working hard. As for the food? We have mostly had success. He's finally up to ten bites of eggs. He's up to eight bites of oatmeal and he only gagged twice today. He's up to six bites of pasta and that one he actually likes! Yay! 

But the one we've all been crossing our fingers and hoping and praying's not gonna happen.

Dairy, the queen of all things fattening, sucker punched my kid in the gut today. He had 5 mL's at his first feed. That is only a teaspoon. One TEASPOON and he started hurting soon after. We decided to push through at his next feed because his rash was very light and he got 5 more mL's.

He cried and fussed through that meal but he did still eat.

And then he got really sick about an hour after. Puking. (And the other end sick.)
 I felt so so so bad for him. He was in so much pain and there was nothing I could do except wait it out. 2 teaspoons of dairy and his body said "Oh hellz to the no." It made me so sad. We wanted dairy. We needed dairy. Cheese and milk and ice cream and yogurt? Those things help me gain weight so I was hoping they would help him too. Why should I be the only one in the family to enjoy a squishy muffin top?! We left the hospital early and disappointed since it was clear that therapy was not going to happen with him in that much pain.

After leaving, thankfully, and through no fault of his own, he pooped his pants on the way back to the hotel. Why on earth am I thankful for that?

Because it prevented me from stopping to buy a puppy.

Yes, you read that correctly because I am certifiable.
And lonely.

And to pass the time in the evenings, we've been going to various pet stores and playing with dogs because my boy LOVES dogs. (His mom kind of likes them too.) And of course we fell in love with this one. This is a breed that is often used for therapy dogs because they are smaller and very friendly and cuddly. And yes, the doctor can write a note saying Owen needs a therapy dog and we can get tags and take her wherever we go. And yes, the doctor and another mom in the waiting room talked to us all about this. And yes, this boy who often gets anxious in crowds and anxious at night could have someone to snuggle, but here's the thing people, we ALREADY HAVE A DOG! 

We have a slightly crazy but lovable dog that I already brought home pretty much without permission.

I don't think I can do that to Todd twice! Although.....I'm not making any promises. And he promises not to judge me because this situation sucks and he understands my weaknesses. In sickness and in health, people. We vowed. The vows did not clarify between physical or psychological sickness, thank the Lord, because Todd is still with me. Well as far as I know, he is. Actually, he could be in Canada for all I know since I haven't seen him in weeks. But I think he's still at home.......shaking his head at his crazy wife.

And I am CRAZY for even thinking about this, but when he was in so much pain today, I thought, screw it, I'm getting the kid that puppy.

And then dairy and poop saved my family from my shenanigans for at least one more day. I never thought I would be so thankful to clean out crappy underwear. I'm literally praying someone else adopts her before I lose all my willpower.

I can't even stand that much cuteness.

Hoping my boy feels much better tomorrow! And I'm also hoping another family finds this dog absolutely adorable and adopts her. And I hope that family is named Todd. ;)

Just kidding babe.

"Go sell crazy somewhere else, we're all stocked up here."
-As Good as it Gets


  1. Yesterday was "one of those days" that come all to often on Owen's journey.....a day of huge challenges, incredible pain and illness, a feeling of sadness and loneliness for family, and true discouragement. I am just so grateful that there also "one of those days" that is filled with giggles like he had with me on the phone this morning, cuddles with Lucy (or "Stuffy" on this trip), happy chatter as he guesses I turned 42 yesterday (my kind of guess!!!), and a joy for slurping spaghetti noodles! I am praying for more of those kinds of days and certainly for God to bring comfort and encouragement in the times we dread in those other days. for being a "voice of reason" about the dog.....I am NO HELP AT ALL TODD.....that IS a whole lot of cuteness!!!! This one or another one as a therapy dog....what an amazing ride that could be! Just sayin...........

  2. We loved being there with you, even for a short time. And even with all our subway woes of waiting for trains that were never going to come! At least there were another 100 people waiting with us!! Certainly hope this week will be pain free and easier to handle! It will surely be easier when your family is all together for a few days. Todd best hurry before he has several new puppies to take home!! Love you!