Friday, June 5, 2009

two and a half

To tell you the truth, I've been procrastinating on writing a Rainer update because I didn't want it to be a "downer" sort of post. He turned two and a half on April 23rd, and right around that time he started his "maintenance" course of chemo. We were told that it's all smooth sailing once these kids start on maintenance--life gets pretty much back to normal, the child feels good, the hair grows back and all that. Well, as with many things, Rainer is a bit different than most kids. Instead, he started on his maintenance drugs and man, that little boy felt awful. Lots and lots of crying. So not what we were expecting. He's better now, but 5 days out of every 28 he'll be on the medication that really irritates him. Worsening the situation, he's developed a sensitivity to the sun, and sunscreen, so not being able to go outside in the middle of the day has been a challenge.
Despite all these challenges, lots of good stuff is going on with Rainer:
:: I love his deep chortly laugh
:: and the way he asks to nurse: "can I have some nursey on you?" So cute.
:: when I come home from work, he'll rush up to me and announce "I'm off NPO!" meaning that he can eat and drink again after his medication that has to be taken on an empty stomach.
:: he wears a daily "uniform" of a long sleeved pajama top and overalls. Very cute and excellent sun protection. Luckily it's been a cool temperate spring.
:: just the other morning he started galloping. Such a joyful movement, and we're happy to see him do that because he's still not really running.
:: I love that he's such a little person in his own right. He's started choosing things for himself in a grown up sort of way, it seems to me. The other night he chose "Dinosaur" as our family movie. (Ken's quick on the remote to fast forward through all the scary parts). At Subway he was very specific that he wanted Nacho Cheese Doritos as his chips.
:: he's an outdoor boy for sure, when we've got the sun thing under control. He loves the sandbox, gardening, the hose and the trampoline. He wants to go outside first thing in the morning.
:: he pronounces all the names of his medications and uses them in context. Very cute (and poignant too, I guess, if you think about it).
Happy two and a half to Rainer. I can't wait to spend more time with this boy in the summer (only 1 more week to go!)


melissa s. said...

happy 2 1/2, rainer! you sound like such an amazing little guy!

Nina said...

I hope he is able to tolerate the sun in the near future. He does look adorable in that hat. Wishing him continued good health.

My little guy is two and half as well (October 9).

Lisa said...

His floppy hat is adorable on him. Would the Huck Finn pants from Weekend Sewing be enough sun protection?

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Lina said...

Happy two and a half little man! I love "can I have some nursey on you" so precious!

Tava said...

Sweet Rainer, so sorry to hear the new medication is so hard on him. And the sun too. I just bought my little one a "super sun hat" (as we call it). The brand is Sunday Afternoons. It is great because it covers so much- my little one is allergic to sunscreen. With long sleeves, pants and the super hat we don't need any sunscreen.
Even through feeling sick, Rainer is one of the cutest little guys ever.

chickadeefour said...

happy 2 1/2 little (big) rainer -- boy, is he incredibly cute! your blog is one of my absolute favorites -- the simplicity, the focus on little comforts, luxeries, and beauties. i love it so -- thanks for sharing a slice of your days here. and happy summer to you and yours!

Mary Beth said...

Tava--I will look up that hat online. Thank you.

Chickadeefour--thank you for your nice comments about the blog. I was just thinking last night about "where do I want to go with the blog" and realized I'm already doing it--a focus on "all that is good." I'm really into positive thinking and loving the life we have.

Thanks to everyone for sweet thoughts and comments about Rainer.

cagio said...

I check in here every so often and I am sorry to hear about the new medication. It's hard when you've been looking forward to something. It must be very hard.

Your spirit is amazing - as is his and the whole family's really - and thank you for sharing him with us.

Barbara said...

What a lovely update about your wee boy. I love to visit and read about what you've been up to. It's a little place of calm I think and you always write in such a spirited and gentle way. I wish I could even begin to think about getting up early in order to blog! Bx

Celia said...

Oh God, You have made me love this boy like he were my all time friend! lol...
I am soooo happy he's in the maintenance process now even if it's not going as it was supposed to... Things now can only get better and that's so good news!