My First Infusion

Friday started my infusion process.

I was really nervous, but it wasn't bad. Basically I just sat in a chair for 3 hours, watched HGtv and got a little bored. I think next time I'll take a book.

I tried to take a few pictures for your viewing pleasure.

First, they gave me two Tylenol and a Benedryl. I will do this every time. Then came the fun of finding my tiny veins and then slowly pumping me with Remicade.

This is my bag of medicine and next to that is my nurse Mike. That guy was awesome.

Actually everyone at OptionOne was amazing. They were very nice and made sure that I was comfortable. They asked a million questions and seemed very caring. They would come in and check on me every 15 minutes or so. Also, I was the only patient in the office at the time. They try really hard to not have more than two people there at a time. They like each nurse to only work with one person at a time-- they want the patients to feel like the nurse has time for them, no feeling rushed.

They even went on a hunt for this Dr. Pepper for Nate. Funny people I tell ya.

OK, so back to the medicine. They started it really slow and then gradually sped it up.

I didn't have any real reactions to it, which was good. I got a little itchy part way through. They kept an eye on me and checked my blood pressure and breathing and felt confident I was OK. I was pretty sleepy by the end of it. I don't know if that was from the Benedryl or from from the Remicade.

I felt good enough after to head over to the Just Between Friends sale and pick up some fall clothes for Brixton. By the end of that I was pretty exhausted so we went home and I slept for a couple hours.

I do not feel any different, so far. That's normal though. I was told it will likely be after my second (in two weeks) or third infusion that I will start feeling better. My doctor said I should feel better than I have ever felt. We'll see.

Alot of people have asked if we need anything. I really don't think so. My infusions are going to be scheduled on Fridays which works out because we typically eat dinner at CR on Fridays. Even if I don't go to CR on those days Nate and Brixton will be fed. As for me, I'm always fine with just eating something we already have around the house. Thanks for the offers though.

Thanks for your prayers.

We Had A Little Vacation

Actually it wasn't little at all -- it was AMAZING!! We were gone for 8 days. I think it's the longest trip Nate and I have ever taken as a married couple. (We went on 6 week LST trips overseas in college)

First this -- what was quite possibly the happiest moment of his little life so far. See that big, cheesy smile. We got a free 5x7 of B with McQueen -- but this one was taken with my phone.

Part of our trip was mission based. We met up with the Celebrate Recovery folks half way through for the annual Summit in Lake Forrest, California. Nate went to the Summit, I babysat Brixton and another family's kiddo.

The first few days though were just the three of us and a lot of vacation fun.

On to the pictures....

We went to the beach...

Found out it's illegal to wear floaties in the ocean... seriously, it violates a county ordinance. Apparently they want people to watch their kids closely. What's up with that? kidding, I promise.

We played in the sand...

Chased "turkeys"

Built towers, marched around them, tooted our horns and then smashed them. That's his favorite Bible story right now. We do a lot of marching at our house.

Went to the Santa Monica Pier

Rode a ferris wheel. Did I mention I HATE ferris wheels, but when a two year old asks I jump, hence the "Please don't take my picture I'm scared out of my mind" look on my face.

And then came Disney California Adventure...

We met Minnie Mouse first off -- then came the reason for it all...

"Welcome to Radiator Springs, the cutest little town in Carborator County"

It.Was.AMAZING!!

Looks just like the town in the movie

Lightning McQueen even drives down the street. He and Mater switch off every couple of hours taking pictures with all the kids outside the Cozy Cone Motel.

We rode rides...

Had a few meltdowns...

Ate Lightning McQueen "popcone" (from the Cozy Cone) and had a traffic cone drink.

Watched the Pixar Parade with all our favorites...

And he insisted on riding ANOTHER ferris wheel. I stayed on the ground this time while he and Nate enjoyed themselves.

He said, "Dada, we safe in dis cage." He then stuck his finger out and said, "My finger not safe."

Silly kid.

Back to the beach for this awesome picture...

Up next... the San Diego Zoo with our friend. I won't say who or show his picture because of CR rules I don't want to break their anonymity. I actually am pretty positive they wouldn't mind, but just in case. 

We saw lots of great animals.

And had some fun with cotton candy mustaches.

I heard great things about this zoo, and while it was great I think the zoo here in OKC is pretty awesome too. In fact, I like the elephant exhibit in OKC a lot better than the one here.

We also swam at the hotel a lot and had some good rest while the rest of the crew was at the Summit.

After the Summit and before heading home was a CR group trip to Disneyland.

This time we shot aliens with Buzz Lightyear

Rode in flying spaceships

Met Mickey Mouse!!

B rode his first roller coaster. It was a little faster and higher than I thought it would be, but still fun. At the end he said, "I don't like that."

We met more characters. I don't know that he's ever watched Winnie the Pooh, so this may have been more for me and Nate, but that's OK.

Then came musical chairs with Alice and the Mad Hatter

round and round

Brixton was the first "un-winner." We expected it. However, he did NOT take it well. I think it scared him when the Mad Hatter picked him up to put him on stage.

He promptly jumped back in the game.

And Alice pleaded for the Hatter to let him play. She shared her chair with him.

This was really cool. We actually ran in to them about 45 minutes later and Alice remembered his name.

Brixton did great on the whole trip. He's an awesome traveler.

Our first night away he was a little freaked out. We told him we were just going to stay in our California home. We stayed in three different hotels/condos while there. He just called all of them our California home. We had such a great time. I hope he remembers this trip as he gets bigger. Although, the night after Disney California Adventure we asked him what his favorite part was and he said, "I rode a Lightning McQueen bus" a.k.a. the shuttle that took us to our hotel. Oh well, it was still worth it.

One great thing from our trip, before we went someone told us to go to the store here and buy a few little toys and take them with us. That was GREAT advice. Nate found some toys from the movie Cars on sale at Target for less than $3 each. We took two toys in to the park with us and gave them to him at different points throughout the day. It helped so much and saved us a few more tantrums.

Some Good News

If you are here to read about my health scroll down a little.

Here's my good news:

Coming mid-September my alarm schedule will no longer look like this!!!

Channel 4 hired a new morning reporter so I am moving to a more "normal" schedule. Some of you may remember I sort of announced this back in January and then nothing happened. We went on vacation a couple weeks ago and I came back to this news. Best Monday morning every, possibly.

As for questions you may have:

No, it's not a promotion. Same job, just different hours.

No, I don't get a raise. Again, same job.

Yes, I will get more sleep! Which hopefully will help me feel less tired ALL the time.

Things I'm most looking forward to. (in no particular order)

-sleep

-seeing Brixton and Nate before work

-being able to go to M&Ms

-possibly going to some ladies Bible studies on Tuesday nights

-having evenings where we can hang out with people and not having to leave so early

-going to bed at the same time as my husband

My tentative date is September 17. However, it all really depends on the new girl getting here and getting trained on all of our news systems.

Lymphoma, Lupus, Heart or Liver Failure

Just a few of the oh so exciting side effects that could possibly come with the medication I am about to start.

Fearful, that's how I am feeling. I'm trying very hard to put my trust in God in this situation but I truly am struggling to do so. Instead I am finding myself on the verge of tears most moments of the day. So, I'm asking for your prayers for me and for my family.

Here's the deal. I have Chron's Disease. I was diagnosed in December of 2007, put on a steroid and considered in remission a few months later. I have been on a controller medication since then. Six pills a day to keep me in remission. It worked until about February of this year. I started having large amounts of pain again in my lower abdomen. I took the steroid which helped before, unfortunately it didn't work. I went in a couple weeks ago and my Chron's is now pretty severe.

My doctor has said he is really concerned. I've always downplayed my diagnosis as "no big deal," but according to my doctor it is a big deal and something I should take very seriously, especially now.

My options:
-surgery, it would bring immediate relief; however, my doctor sees this as the last option. I would need at least TWO FEET of my small intestine removed! Considering there is actually 25 feet in there it doesn't sound too bad. You only need about 3 1/2 feet to live. He says one surgery will likely lead to more. He says if we can heal it that's a better option.

-Humira, maybe you've seen the commercials for this one. It's advertised for severe arthritis or something, but can be used for Chron's as well. It is a shot that I would give myself every two weeks for who knows how long. The problem, the idea of giving myself a shot leaves me almost hyperventilating. I HATE needles. Although it's sort of like an epipen injector and it would even talk to me. It comes with the side effects in my post title as a possibility and a lot of people are nauseous for days after an injection. I also haven't found that many stories of people having great success with this.

-Remicade, this is the one I chose. This one in an infusion I will get every eight weeks. It also comes with the possibility of the side effects in the title as well as fatigue and a few others. I will go to the doctor and get hooked up to an IV for about two hours. It doesn't sound fun, but it is life for me for now. I have a friend who is on this and has had good luck and have also talked with a couple pharmacists, one who says this one tends to be the first defense for a lot of doctors in fighting Chron's. I guess if everyone else is doing it I will too.

One issue that really scares me about the medicine is it will cause my immune system to be compromised. Yup, I will now be one of those people who could be super susceptible to the flu, pnemonia and all those other viruses that send people with weak immune systems to the hospital. I know it sounds so negative, but it really is a risk. With this I ask a favor, if you or your child are sick at all please don't expose me. I want to hang out with our friends, but I feel fearful about this impact on my immune system. My biggest fear with this is that I will catch something that will send me to the hospital and could potentially kill me. Maybe it is a little exaggerated because that is a rare occurrence, but it's a possibility and something I have to be aware of.

I do not know how long I will have to be on this medication. I have an appointment next Monday with my doctor where Nate and I can ask all the questions we are coming up with. It could be a year, it could be two, it could be longer. It all depends on how well my body responds. Once I'm in "remission" I may be able to go back to my six pills a day. We'll see.

My doctor has been really patient with me. I have been on my current medicine for a few years knowing someday I would need to do one of the others. I have stayed away from them because Nate and I knew we wanted a family (my diagnosis was pre-Brixton). The medicine I've been on has been safe to take during pregnancy or while breastfeeding. My doctor has advised me that we really can't wait this time. That's been hard for me to accept because my plan had been to have baby #2 after Brixton's third birthday sometime. I had hoped to get pregnant in May, but medicine delayed that. I then hoped for August. Well, that's not happening either. The reality is that I now have to accept that I may not be able to have another baby because of my health. I had finally wrapped my mind around the idea of expanding our family and then this hit. I've shed quite a few tears over this. Nate and I have talked about it a lot. We are accepting the fact that Brixton may be it for us. We love that kid so much and would be fine as a family of three. I think it's just hard to accept that had I been ready for another baby a year ago then it would have been OK, but I wanted to wait and now here we are. There is a chance that if my body goes in to remission that I could have another baby then. However, no planning because we simply do not know how my body will react to the medication.

I have been crying a lot and randomly just breaking down. Mainly when I'm playing with Brixton. I just have this fear that somehow this will make me less of a mom. That I will be more tired and less able to care for him the way I want. Then there's a fear that somehow this will kill me and that he will grow up without me (see the crazy things that go on in my mind). I just take every moment to hug him and tell him I love him. Fortunately he's a pretty lovey kid and likes the extra hugs.

I know God has a plan for me and my family. I could really use your prayers right now for health and healing, that I can trust God with this, and for us to be content with the blessings we have.

I'm waiting right now on paperwork and insurance to start the medication, but I will try to update this blog occasionally with my progress.

Thanks for your prayers.

Upate: Out Of Remission

Had blood work and other tests done this morning and the conclusion so far is my small intestine look pretty bad. So bad they couln't get through to fully examine it all. My doctor took a couple biopsies and said he will call me next week and we'll get a plan from there. I may be able to just take a new, stronger medicine, but surgery is still an option. Surgery would mean the removal of about two feet of my small intestine! Apparently there's about 25 ft to start with.
I could post the picture of just how awful my small intestine look right now, but I'll save you this yuck factor on this one.