I'm back

So I took a little break there, sorry. Life got a little overwhelming. Today we are at our first appointment for Jack's pre bone marrow transplant work up. This is definitely a scary time but it is the best thing for Jack. So bear with me, I'm going to try to keep up with the blogging while we are up here. 

Perspective....

You know, it's hard raising a toddler. It's even harder to have them mostly confined to a hospital room attached to a formula pump and attempting to eat for the first time in months. Today was rough. But, just when I was about to lose it and yell at this poor kid for whining again I read about another blogger whose son passed away a few weeks ago. 

My heart aches for her. 

Perspective is so important. I may be frustrated and tired and hot (in the bad way, why is this room 80degrees?) but I'm in a very good place right now. The ginger is pretty healthy for a sick kid and we are here for good stuff to happen. He ate some bacon today, natures cure-all, smoked meat.

-cassie

Living in the hospital is like an extended trip to Wal-Mart

So we are currently in Cincinnati children's with the ginger to get a second opinion on his gi problems. I can't say enough about how great this hospital is! Everyone is friendly, it's clean, people do things they say they're going to do, people drop off their shot up homies outside, what more could a mom want for her favorite sicko?

Vanderbilt has it's good points too. We love our gi team there! However, living in the hospital can get cray. I mean really cray. People do things that I'd NEVER do in front of the general public!

Here are a few examples...

1. Some people see the hospital as a daycare....in both hospitals we have seen people leave their children for long periods of time often to go out on the town. I wish I was making this ish up.
2. People forget how to dress themselves. I understand being in your pjs on the floor at night but not in the cafeteria. Throw on some sweats. I once saw a chick in a long t shirt and her underwear at Vanderbilt. Nothing like seeing some booty to wake you right up.
3. Random people want to know what's wrong with your kid so they can determine if theirs is more sick than yours. I call it having a sick off. I once had a woman tell me her child's liver made him (and I quote) "retarded". Is that even possible?
4. People steal. My iPod was stolen during our last round at Vanderbilt. I suspect the heifer next door but hell I guess it could have been anyone.
5. There's always one kid in the playroom that wants to be up in your grill, they are usually the contagious one.
6.I once saw a guy with his daughter playing and I noticed he had a teardrop tattoo on his face. Good for him for being in the hospital with his kid but doesn't that mean he's killed someone?
7. No privacy. It's really hard to go to the potty since every time you turn around someone is walking in your room.

8. Skin colored leggings....I can't tell you how many people are wearing these!

Well I'm sure there's more but that's all I can think of right now. We had a rough night so we are both tired. Here's hoping the ginger will not wake up barfing in the middle of the night!

--Cassie

Cincinnati children's hospital day 1

We made it and the ginger has already had his first procedure. Upper and lower endoscopy. Fun times.
Nothing new to report other than they are going to put in an ng tube to start formula feeds. He just Barfed, not a good sign.
How about this, yesterday the hospital was locked down because "someone was dropped in the circle". A nurse quite calmly explained that means that someone dropped off their shot up, stabbed up or dead homie in front of the hospital. Time for some new friends dude. I'd like to think that my friends would at least plop me in the er in a chair before they peaced out.
--Cassie

You don't always get what you want...

But I suppose I'm getting what I need, and more importantly what the ginger needs. 

We are heading to Cincinnati Children's Hospital on Thursday to meet with a new GI specialist. We're so very hopeful that they will be able to fix our kid or at least make his life better than it is right now. I really hope this doesn't sound terrible but, I'm ready to get back to our old normal. I know that things will probably never be exactly the same but there are so many things I really miss about how our lives used to be. Don't get me wrong, things have been much worse and we are in a really good spot right now. It would just be awesome to not have to worry about the ginger's central line, or what foods can he eat, or has he had all his meds today.

I REALLY miss working. I know, I know, I should love being a SAHM. There's so much that I do love about being home with Jack. We have a very laid back existence, we stay in our pj's all day if we want, I get to run every day. But, I miss being around grown folks and having conversations about things other than cartoons. I've never been the type that wanted to stay at home, no offense to anyone who does want to be a SAHM, no judgement and honestly if this is what you want to do I sincerely look up to you. The real issue is that I loved my job. I love teaching and being around the kids at school. I miss getting up and getting dressed even though I do love me some sweat pants. Teaching is a very stressful profession, especially now since everyone seems to hate teachers and blame them for society's ills but I love it. I miss reading and discussing literature with teenagers and getting to know some amazing people, I'm talking about my students.

There's so much good right now too though. I know that once I do go back to work I will seriously miss spending my days laying around the house with the ginger and being able to go to the zoo, or the children's museum or an early morning run in the jogging stroller. 

Times like these will be few and far between sooner than I think. So my goal for now is to embrace the time I have with my sweet ginger kid.

Let me say that Sesame Street has gotten quite cheeky lately. I just looked up because I heard Bert of Bert and Ernie say that he is reading "50 Shades of Beige". Well played Sesame Street. Well played.

Which do you prefer?

So I've been busily stocking my etsy shop over the last few days. I had plenty of pictures that I've taken over the pat few years to get me started. Well, my irises bloomed a few days ago and I got out early one morning, during the golden hour and took some pictures of them. 

The whole point of this blog post is that I started processing these images and I can't decide which ones I like best. So here's the same pic processed several different ways. Keep in mind that I'm attempting to sell these as art prints. Which ones do you prefer?

Thanks for the help!

I'm also considering offering larger prints in my shop. As of right now I'm offering 5x7s and 8x10s.

Thanks for looking!

BTW does the Cat In The Hat cartoon show on Sprout freak anyone else out? I mean these kids just run off with a cat and a fish all the time and their moms don't mind. It's just a little weird. Sorry if my observances are a little strange :)

I'm at WKRP in Cincinnati...

Hey ya'll!

I've written here before about how the ginger is sick. We spent several months last year in Vanderbilt Children's trying to stabilize him after what seemed like a terrible bought of GI troubles. First they thought it was just a stomach bug and then they thought celiac but he didn't react well to the gluten free diet, personally I think he probably has celiac but when they initially tried to feed him the gluten free diet his intestines were so irritated that he couldn't even absorb anything, no matter what it was. Anywho, he's been at home and getting better and better but we still need to get him all figured out.

Soooooooooo, we are off to Cincinnati Children's Hospital next Thursday. It's the best hospital in the nation for pediatric GI issues. I'm so excited to get him up there to those doctors! He's going to have his upper and lower GI scoped to see if there has been at least some healing in his gut. Pending the outcome of that they plan on trying to give him interic formula and a gluten free diet so we can eventually get him off his intravenous nutrition.  

The Ginger calls this his juice, it's his intravenous nutrition.

One of the Ginger's pumps, he uses two.

We'll spend about a week up there before coming home. I'm so hopeful that we will come back home with some answers. The most tiring part of all of this has been all of the negative test results. I can't even begin to tell you everything that this kid has been tested for. But, I can tell you that he doesn't have anything that they have tested him for, believe me I'm glad about that but still I want to know what's wrong with my Ginger Boo. He has even had a whole exome sequencing done, if you are interested to know what that is HERE is a link to the Baylor College of Medicine explanation of the procedure. I mean, who doesn't like reading medical research?? LOL! Just know that it's a big time genetic test that takes FOREVER to come back and it may not tell us anything at all. Yay.

OK well I am off to catch up on Bates Motel. Anyone else watch that show? It's my go to now that I'm waiting for the next season of The Walking Dead. If my phone and doorbell rang as much as Norma Bates' does I'd be crazy too.

 

 I'm going to try my best to keep blogging the whole time we are up there. We shall see if I actually have the time!