Saturday, December 20, 2008

Dancing with his Line

Friday was the start of my vacation and I took Faith out to breakfast before dropping her at school (she had school; I didn't). This is the scene I walked in on when I returned. Both boys dancing happily to "Frosty the Snowman."
Rainer has been really really sick these last several weeks with a gastrointestinal bug. In truth, it's been scary--he's lost a lot of weight. From a leukemia standpoint he's doing very well--he's going for treatments as usual and his "counts" are actually nice and high. But he doesn't seem to be able to kick this GI bug. So Thursday night he started on a form of nutrition that goes into his IV line. Fortunately we can give it to him at home. Hooray!
And he only has to be connected for 12 hours overnight--so he's free most of the day. He's tolerating it quite well so far, as you can see from these pictures. When I walked in he very excitedly wanted to show me his "line." Sometimes he pretends it's a rattlesnake.
It's amazing what a difference just one night made. He was much perkier and more animated, less fussy. Of course, he'll continue to need it for awhile.
Dieter is a supportive big brother (most of the time, anyway).

In the morning I disconnect him and flush the line. In the evening I get everything ready, inject vitamins into the bag, prime the tubing, flush his port again, and connect him. I'm a nurse, but a school nurse, so working with IVs not something I'm used to. The last time I worked in a hospital was 8 years ago, and I was a new nurse at the time--I never got tons of experience in that setting. So even though I'm comfortable, it's still kind of nerve wracking. But I'm so very grateful he's not in the hospital.

In other news, we're getting ready for Christmas. It feels wonderful not to be scrambling so much at the very end like I usually do. I have quite a bit done already, and we're keeping things simple, so I'm very much enjoying these last few days before Christmas. I think our situation helps me be mindful that keeping it simple is just fine--more than fine. It's perfect for us.

21 comments:

Erna said...

I'm sorry to hear that your little one is not so good at the moment...I saw from recent pictures he lost weight. I hope he'll be fine soon...at least you are home...

Di said...

I hope that the nutrients help perk him up perfectly for Christmas and hope that you and your family enjoy it!

mbutterfudge said...

The boys look so very happy, good old frosty the snowman never fails. I hope Rainer gets over this gi bug soon, poor little guy. I too am so glad you are all home together. x

Sarah said...

I'm so glad he's able to be home and I hope he gets better soon. Lou used to have to run around with a suction box attached to her chest tube. We have all these ridiculous photos of us chasing her about holding that darned box. That bag with the longer tether looks much easier :)

Gift of Green said...

Oh Mary Beth, your posts and your pictures always make me so happy - to see your children dancing, tubes and all, the light, your crafting, hot cocoa from Faith, and your lovely picture with Ken. Your blog is the best holiday present ever!

amanda o said...

the two boys hgging just made my heart melt

Hannah said...

I hope Rainer manages to kick his bug soon. Christmas wishes for you and your family Mary Beth, I hope it's everything you want it to be :o)

The Glamorous Life said...

Bless that baby.
And you.

SO lucky God gave you to him.

I am so proud to 'know' both of you. Keep up the good work and good love.

LOVE BIG. It Matters.

melissa s. said...

what sweet pictures. hoping Rainer is feeling better for Christmas. what little sweet guys you have!

Polly said...

I really love your sunflower bags, what a great idea. The embroidery and ribbon are lovely. Paula x x x

Shannon said...

Man. Thanks for this precious update. You are so inspiring in your hope and goodness, and your sweet family! A very merry and beautiful Christmas time to you and your sweet family. And get better prayers for your sweet, sweet baby too.

Tava said...

Rainer is so wonderful and shows everyone how to stay in the moment and enjoy the moments for all they offer. Have a wonderful holiday and give that little guy a hug for me.
Loyal Blog Reader,
Tava

Mary Beth said...

Thank you, everybody. You guys are all very sweet. Tava--you are so right. Rainer really is teaching us, or at least me, about staying in the moment. He has no idea about what a cancer-free lifestyle would be for him. He enjoys life just as it is.

defneyleyasamak said...

I am in love with your little boy... Although I am so far away and I am not very good with praying staff, I keep on sending my very very best , positive thoughts for him...

periwinkle said...

the hug picture is just adorable - hope things get better soon. Wishing you and your family a very merry christmas and a healthy new year.
lisa x

MoziEsmé said...

These are just the most adorable photos! R looks so happy - they both do - and so much in the Christmas spirit.

gardenymph said...

I'm relatively new to your blog, but I just wanted to say that you have a beautiful family, and I am very touched by how brave you all are. I love the picture of your boys hugging. I hope that you little one feels better soon, and that you have a wonderful Christmas. Your Christmas spirit has been an inspiration to me this year. Thank you.

hanna said...

I hope Rainer is feeling better soon.
Wishing you and your family a simple and special and joyful Christmas.
x
Hanna

Michelle said...

I hope he is feeling much better by Christmas.

Morgan said...

Wow- I have the exact same rug from Pottery Barn in my living room. I've never seen anyone else with it before!

Hope your little one feels better soon!

xo

Celia said...

Oh God, you're a great mom! That picture of you and Rainer with that calm is so touching. And Rainer and Dieter in that big hug is so sweet! Really I am sure you're having such a great time this Holidays enjoying every single moment being all together at home. I am so happy Rainer can have his treatments at home with this brother and his toys.
¡Feliz Navidad!