Changes

When Brek and I came back from Indiana, Joe and I got to have a delayed celebration for Valentine's Day. I'm not a huge fan of the holiday, so I actually didn't mind not being in town. :)

But there was also a pretty big significance to our "special" dinner, because Joe was being put on bowel rest, so it became his "last meal." 

Brek LOVED the couscous we had, and ate a ton of it. He also made a big mess. :) And even cuter, he helped feed daddy too!

Have a bite Daddy!

Daddy helping Brek get the food on his fork

I guess I should put a warning for the rest of this post, so if you have a sensitive stomach, you can go ahead and stop reading.

Joe had a port put in, that connects to his jugular vein and goes down into his heart. Every evening at 6 pm, Joe takes a bag full of fats and vitamins and hooks it up to his IV. It pumps for 12 hours, and in the morning, Joe unhooks the IV before going to work. The first night a nurse came to our apartment and went through everything. We thought we would have a nurse coming quite regularly, but then we found out that our insurance didn't pay for the home health care because Joe was not home-bound. (At first we thought it meant the insurance wouldn't cover the treatment at all because he was still working, so we were quite relieved that it just meant we couldn't have nurses coming to our home.) For the next several weeks Joe had to go into the nurse's clinic to make sure he got it hooked up right, to take blood tests, etc. Once a week he gets to "de-access," which means he gets to take the IV out of his chest. He had to go into the clinic for that too, and to "re-access" the port. But eventually they taught him how to do that himself, and now he even takes his own blood samples too, and then goes and drops them off at the hospital before work.

Each week we get a delivery of all his meds and supplies for the coming week. It was a pretty big deal at first. Now (I'm writing this blog post in the middle of May, and this all started the middle of February), it's really no big deal. We really don't notice.

For the first week Joe didn't have a backpack to carry around his IV, so he used Brek's little cart to move it around.

This is what it looks like up close, all hooked up

Not too happy that I'm documenting this.

You can see the bandage up top which is over a few stitches above his jugular.

I'm amazed that even I have gotten used to it. When we were at the doctor's office getting it done, I couldn't even look at him because it creeped me out. I still don't like watching the blood draw, but I don't like that on me or anyone else for that matter. He had to sleep sitting up for the first 3 or 4 days, and for the first month or so he was allowed 1 glass of clear liquids a day. Now, 3 months in, he can have free reign of any liquids, and he's actually gaining weight too.

I was really afraid that we wouldn't be able to cuddle anymore, but luckily as long as I'm on the other side from his port, there doesn't seem to be much of a problem. :)

He went and saw an allergist just to get tested so that we would know where to be careful come the time he can start on solids. We were surprised to find out he has a sensitivity to peanuts, almonds, pistachios, and sesame seeds. He also has discovered a sensitivity to milk, so he's been really careful about that, and has been making rice milk for his smoothies. He also discovered that his body didn't do very well when his smoothies only had strawberries in them.

All said and not yet done, this has been a very good treatment for Joe. He sees his doctor this upcoming week, so we are excited to see what the next step is as far as re-introducing solids and even a possible date for ending the treatment. I am amazed that he has been gaining weight, and his overal demeanor has been much healthier than he's been in the past couple years.

When this first started, I found it interesting that I was playing middle man as far as emotions. For Joe's family, they have seen him at his worst, almost death actually. His health is always a concern for his mom and siblings, but it seemed from my perspective that there wasn't a whole lot of worry about the treatment. On the complete opposite of the spectrum, for my family, we have never experienced anything of the sort, so, there was quite a bit of freaking out. So when I say I was the middle man, I felt I was freaking out for Joe's family, and being calm and collected for mine.

During rounds of tests over this time, Joe was also diagnosed with osteopenia, a precursor to osteoporosis. It is actually very common for Crohn's patients to have osteoporosis due to the malnutrition, so his doctor is very impressed that Joe has lasted this long with good bone health. He has been doing yoga, and is very excited that his flexibility is improving, and he can now touch his toes. :)

We really appreciate all the concern and good thoughts and prayers for our family during this time.

Visitors and Visiting

The month of February was filled with visitors and visiting.

First, my mom came out from California for a week. I didn't take a whole lot of pictures, but these were some cute ones I captured of Grandma playing with Brek and a balloon.

It's tricky holding a baby and a balloon

 

 

 Daddy built a fort one day

Brek sitting in his little chair inside the fort

 

Grandma went home on a Monday. On Tuesday Grandma flew from CA to Indiana, with a flight change in Colorado. On that same Tuesday, Brek and I flew to Indiana, also with a plane change in Colorado. We did indeed find Grandma in the airport.

Getting ready for take-off

He is indeed signing that he is "all done." Too bad we hadn't even taken off yet. 

By the time we were in the air, he was asleep.

It was a long day of traveling, but Brek did really well. During our long layover, we rode the train so we could sit down and eat, and rode the escalators over and over and over again. Brek also volunteered to eat some guy's banana as we were walking past him. I was pretty embarrassed, so I went and bought him his own banana, which he then refused to eat.

Once we reached Indiana, it was non-stop cousin fun:

Brek and Aurora sitting at the little table

Amy girl

Rori

Yes, my son really is crazy 

So beautiful, and looks just like her momma!

 I love these pictures for 2 reasons: 1) Rori is stark naked. And 2) Brek and Rori are playing...TOGETHER!!! If anyone recalls my posts from Christmastime, Brek wasn't playing nicely with cousins, so this was a big deal.

Brek also helped Aunt Tracy with the laundry 

 

These 2 babies LOVE suckers

I think this is the only picture I have of Adelynne. What a beauty!

Totally zoning out 

Amy girl again

All ready to face the cold, windy walk to school

Such a cute smile!

 

Giving loves before going home

I loved watching these 2 interact!

Aunt Tracy got this little toy right for Brek right before we headed home. It has added to his obsession with Elmo.

It was such a fun visit to Indiana. I wish we were able to go more often. Many thanks to my big brother David who paid for my flight so I could have some good sister time.

Tomorrow

Tomorrow...

Tomorrow my life changes. Our life.

It seems weird that such a simple thing makes me feel lost and confused and uncertain. I mean, it's serious, but also not that serious at the same time.

Starting tomorrow Joe will receive all of his nutrients and calories through an IV. No more eating. Only clear liquids, and an occasional piece of gum to chew. I keep telling myself it isn't that big of a deal. I mean, his Crohn's is pretty bad. The colonoscopy 3 weeks back confirmed that. And really, he's got an awesome shot at getting this thing back into remission. So it's exciting really. There's hope. I haven't heard Joe sound this chipper about his health in almost a year, probably longer actually. It's really all good.

Except, for some reason, I feel really sad about it. Partially, I'm figuring, because food and eating is such a social (and comforting) thing for me. Just look at my expanding waistline for proof. Little things like getting a treat together, or making something that I know he really likes. That's gone now. And that makes me sad.

I don't love to cook. I've found I don't hate it either, tho there are plenty of days when I dread it. I mostly dread making the menus. But sometimes the cooking doesn't thrill me either. Sometimes it's fun and enjoyable. I'd say for the bulk of our marriage I've gotten meals made at least 4 or 5 days a week. Other days are leftovers, quick grabs, eating with family, or eating out. When my depression is raging I cook less.

I like to think I've gotten better tho. Especially since we moved into our own apartment again 4 months ago. Something has clicked a little deeper, and with Joe's busy schedule and his declining health, it's been a way, sometimes feeling like the only way, that I could fulfill my "wifely" duties, my homemaking responsibilities, that I'm ACTUALLY taking care of him. It probably sounds dumb, and doesn't exactly make sense, but I guess that's the best way of describing it. I feel like "making dinner" is the one thing I can do FOR Joe. We've even been eating super early, and I'm meaning 3:30, 4:30 at the latest, since November. It's allowed Joe to get his intestines to digest his food and be done with it before he's needed to be at rehearsals, performances, or just be more comfortable in general.

But yeah, like I said, tomorrow that all changes. He had his last "real" food about 2 hours ago. And it just makes me sad. He seems the most sad about messing with this routine we've gotten into of real family dinners. I'm sad because I can't cook for him anymore.

And I hate, I mean HATE cooking for just me. Cooking for 1 is so hard! Well, I guess there's 1 and a half to cook for. But it's not the same. Not that Brek doesn't count, but he still doesn't eat THAT much food. And for him, the more he gets to snack, the happier he seems. :)  Most of the meals I make serve a minimum of 4, usually closer to 6 or 8. We freeze some, Joe eats the leftovers for lunches for a day or 2, sometimes 3. I might eat a leftover portion once a week, if that. He consumes most of the food, albeit over several sittings.

I guess the current idea is to cook for a week, freeze the leftovers, and then repeat that week's menu the following week, but this time eat the leftovers. If I really sit down and think about it and plan it, it'd be nice to only cook 3 or 4 times a week, and have those nights alternating with the eating of frozen leftovers from the previous week's meals. I'm hoping I'll get to that sort of method sometime next week.

For now, I'm still trying to grasp what is really going on tomorrow, and how that is changing life. Don't even get me started about how I'm feeling about the IV port, because I already feel squeamish about trying to cuddle with him all hooked up, or the nightmare of keeping a toddler from getting tangled up and/or pulling on the IV, (because, let's face it, we know BOTH and MORE will happen with a 1-year-old around).

But tonight, it's just about the food. Maybe I should go find some chocolate... :)