Sunday, December 14, 2008

Arctic Blast 2008

As my girls get bundled up to welcome the snow, I have time to reflect on December Remicade day that happened on Thursday. 1st, the snow: yes, in the Pacific NW the newscasters love to be dramatic & we have the news going on downstairs & up to echo the reports from all over the Willamette Valley (who doesn't see severe winter weather too often!). Its below freezing right now, and the snow is coming down in a flurry, so nothing really to sled on yet.... the girls are WAITING!

December Remicade day: Just Charlotte & I because our timing had gotten changed & that messed up work plans for Ryan & friends plans for my parents. I said "NOT A PROBLEM! we can do this on our own!"

She finally figured out where we were going when we pulled out of the driveway & she started crying, "I don't want to go to hospit-pull." scream, cry, cry, cry, scream. So off to starbucks for the hot cocoa & momma's venti coffee (yep, on a day like today, i needed a little artificial strength). Oh & lets get you that cute mug you are asking for... oh & cookies? Sure, I am not feeling guilty at all!

On our way in, Charlotte's mood changed & she became comical. Telling me jokes that today was the bridges birthday (we cross a few bridges to get to the hospital), oh no, its the car's birthday (laugh laugh laugh). Ah.... ok this is better.

So we get in to the Day Treatment Center, set up our bags, get our toys out ready to go, get our movie out.... I had some new toys today (i keep a tote in my office called "hospital toys" that get pulled out just once a month & I have a few new things in there that I pull out one @ a time).

No more numbing cream. No more benedryl. And this girl is GOLDEN! The injection went in by Nurse Priscilla (who is a dreamboat & knows Charlotte's arm SOOOO well now) in 2.2 seconds! it was done! Even Charlotte moved her head around and looked at her arm and asked, "no blood?" NOPE! Because you didn't throw a fit & pop your iv out!!! Thank you for not using your superpowers to blow it out.

Then our angels came - Dawn & Cindy hung out all morning with us! CHARLOTTE LOVES these two momma's! Loves, loves, loves them! She played polly pocket with Dawn & little people with Cindy. I appreciate them so much! (see the bag of cookies that Cindy brought? Yummy new seasons chocolate chip - i don't think i have ever made or tasted a yummier chocolate chip cookie)!

Darn IV kept kinking. Lesson learned - TIGHT TIGHT TIGHT tape on the stint. Charlotte gets pretty active & likes to play while we are there & that little iv is soooo teeny, it gets kinked easy. So we were out of there 4.5 hours later, but I think it would have been sooner a) if we would have gotten the meds on time & b) the tape was tighter on the stint to not kink.

Now we head into '09 Remicade months. Which means, doing 1 remicade treatment every 4 weeks for 2 years (Dr. Foster's direction), gives us 15 more to go.

Request: I need a good mantra, a healthy positive mantra when I am driving into the hospital with Charlotte. I found myself saying to myself, "this sucks... ugh this sucks." I realized I was saying that I was frustrated with myself. And turning it around to "We have to do this, this is the right thing" just wasn't working either. Also what didn't work was rationalizing it to "We are keeping her healthy." nope wasn't working. Any advice for a good mantra?
PS - this is her pillow, we always bring her own pillow to the hospital. We have a furry pillowcase on there from Pottery Barn Kids, so its nice & soft & she cuddles up on it when she watches her movies. These days do wipe her out. But the next days, its like Kelly (a JRA High Schooler) said, its GO JUICE! Charlotte is now on the GO!! And in great spirits & eyes are clear.

3 comments:

Jacob's Mom said...

Yay for a great hospital visit! I am glad everything went well. This journey does get difficult at times, huh? It is so emotional. I still breakdown at times. Especially when it is time to tell Jacob that it is shot night! Him crying just kills me. These kids go through so much. We are doing what we need to do to help our babies. It will get better in time! The two year countdown seems so far away!

Family O'Foxes said...

HI! Cindy P. sent me to your blog. I've know Cindy for 10 years because of JRA.

I'm so sorry your little one is suffering. My daughter has poly.

We have the snow/ice storm here in Eugene.
~Amy

just jamie said...

I heard recently a good prayer/mantra, to "hope for the best possible outcome."

Simple. Yet clear.