Friday, March 20, 2009

Pics and Videos

Yeah, last post was obviously from a crappy personal day, started out crappy and ended crappy, but I got to get some snuggle time with Lukas when he was heavily drugged up on IV Benadryl and his Rituxan#2. Here's some video from Thursday night and some pics from the last two Thursday inpatient stays. Got a pretty cute baby that's been through hell and he still loves his docs, nurses and asks to go to the hospital all the time! Can't complain! :)

This is when we got in our room before being hooked up to the IV this last Thursday. He likes to sit in the window sills (sp?) anywhere he can. Don't know why.... But it makes for a cute video.

Debbie got Lukas this LeapFrog toy for Christmas. He loves music and likes to take this to the hospital with us. Lukas had just woken up from a 4+hour nap. He, luckily, sleeps through these infusions. Otherwise we'd be chasing him around with a pole, making sure his pulse-ox stays on and that he doesn't pull the noodle (iv line) too hard and de-access himself! I can honestly say, IV Benadryl is a good friend of mine!!

It takes over half an hour to upload videos so I'm done with those... onto the pictures....

Last Thursday-March 12th
Lukas favorite place to be, the rocking chair

Checking out his first big boy bed.

IV Benadryl (premed) in and taking effect.

No, we didn't drug Theron up too...

All of his equipment: IV Pole with drugs, PulseOximeter and Blood Pressure machines.

Waking up in mid-infusion, really groggy and not feeling well, but still wanted to play.

Hard to see, but his heart rate was 155bpm, stayed high (150's-160's, normal is 120's).

Decided laying down to play was much more comfortable.

This is from this last week. This first one is Lukas and our Social Worker Elizabeth. We met her in December when Lukas had his little scare and surgery on his head. She took over all the solid tumor kids, kind of sad, we've had 3 new social workers since starting in Nov '07. They just can't keep up with all the new kids.

Anyway, Lukas LOVES wheels and when she came into his room in Dec, he crawled right up in her lap and told her "I unna go fass!" I was a little embarassed, but she pulled him up and started wheeling him around our room. She's awesome!

Thursday, March 19, 2009


Eck, at the hospital, can't get onto Facebook....yes I'm addicted, first step is admitting there is a problem right?? So, I can browse the net, look over blogs and now I just feel like crying. Not because I can't get on Facebook, not that addicted, or maybe I'm just not ready to admit I'm in that deep........

Anyway, for reasons I don't want to share publicly, I just feel like crying. Feel like something extremely special was taken from me and now I can never have it again. Trying to hold it together in front of all these nurses and care partners coming in and out. Talked to Kurt, nothing helps, I just want to cry. No one can say anything to make it better, I just have to suck it up and realize I can't do anything about it and move on. Just feel like part of my heart is missing, like it's been cut out. Eck....

Life sucks sometimes, doesn't it? :(

Tuesday, March 17, 2009

Lukas' new quilt

YAY!!! FINALLY got some fabric so I could start using my Christmas present... a FABULOUS new sewing machine.

A friend of mine in KS taught me how to quilt and I loved doing it, but never had a good sewing machine, so I gave up. Low and behold, my husband knew I loved to quilt and got me the coolest sewing machine for Christmas, the only thing he forgot was fabric so I could make something!

Well, 2 1/2 months later and we finally make it to JoAnns. I got the fabric Saturday and cut, pieced and sewed the strips together Sunday after dinner. I sewed all the strips together and decided to make a border today and got the top all finished, added the lining and the backing and pinned it all up. Now all I need is a smaller quilting frame and I'll get it all quilted and post more pics.