Holy Tomatoes!

It's been forever since I've posted last. Lots has been going on and then again lots of nothing too! We go through cycles of busy and then nothing.

It's good though. Theron is back in school (Preschool through my mom's church). He was in their Mother's Day Out program over the summer and loved it. He to the preschool program now every Tuesday and Thursday from 9am-2pm. He absolutely LOVES his teacher Mrs. Marsha. He comes home and talks about his new friends and things he did during the day. It's so great to see how much fun he has doing his own thing!

Lukas is still doing vision therapy twice a week. The therapists have introduced a cane to Lukas. He LOVES it! They are training him to use it correctly and then we'll get to take it home so he can use it all the time. The goal is to get him mobile and independent so when he starts school in January he'll be able to do things on his own more than not. He'll be learning lots of things when he starts school. Braille is the big thing. We have to prepare him for a life of no/limited vision even though he's getting some back. We don't know how much he sees or how much he might get back, so we prepare. He's doing great though! He'll be starting Mother's Day Out at my mom's church every Tuesday. He's wanted to go to school with Theron so we are putting him in one day a week after talking to the teachers and program director. They are ready for the tornado that is Lukas.

Anyway, I'm uploading pics from our Colorado trip in the next couple of days and then I'll post them and the great stories of our 1st vacation in 2 years!!

Whew!

Long time, no post. Guess life has gotten away from me the last few months. Have some of our family pics up on Melissa's blog (Melissa Fullmer link to the right ->). You can see how much a difference a year and a half makes! She did our pics last March before Lukas craniotomy and he's changed so much since then. Gotten bigger, he's walking and talking and full of 2 year old curiosity and attitude!

Theron's been in Mother's Day Out the last 2 months (it's his 'school' as he likes to call it) and he's got a few new friends and LOVES his teacher Mrs. Marsha. He won't let me tie his shoes in the mornings, Mrs. Marsha has to do it, Mrs. Marsha told me this or that, it's soooo cute!

As for Kurt and I, not much has changed except our sleep schedules (or lack thereof). I'm working out now, and working from home, Kurt is still at his same company and loves it and we are (finger's crossed) going to Colorado the beginning of August. Plans seem to get thrown out as soon as we make them so we'll see.

Not much else to report, I know I'm getting behind on this and I'll catch back up one of these days, for now I'm too exhausted and frazzled to add one more thing to my list, I should really be in the shower now while boys are napping and yet, here I sit......

It's been a while old friend...

Oh, sleep how I miss you. You make me feel happy, less stressed out. You are my very good friend! Where have you gone!!!!!?????

So this is our nights for the last 6-ish weeks:
Dinner around 6
Finish up around 6:30 and play for a little bit longer
Bathtime at 7pm, the start of the calming process
Lukas in the bedroom by 7:30 to "Ock the baby"
Theron in bed by 8pm

Lukas doesn't fall asleep until around 11-11:30 pm, then wakes back up around 2:30 and doesn't go back to sleep until 4-4:30 then he's up around 7:30-8am ready to go. He takes a good nap, usually 2 hours starting around 12:45.

We have tried the "Stay in bed technique" courtesy of Super Nanny, to no avail, we've tried the tylenol/benadryl mix (ok'd by doc) with no success, we've let him cry it out when he wakes up, nothing, getting his back adjusted, zip, zilch, nada!!!

Never thought to mention this to Lukas' vision therapists, but when I said something about it one morning, they said kids with vision imparements often have sleep issues. REally???? So, hopefully tomorrow we can talk to the docs and decide on a possible sleep study or maybe using sleep aids for a while to get him back on a normal sleep pattern. He is on steroids for the next 5 months, he's been through hell and back over the last 18 months, not like that could have anything to do with it!

2nd Annual NB Walk for a Cure

I'm SOOOO excited! This Saturday is the 2nd annual walk and we got to help out with it a little this year. I can't tell you how great it is to work with the family that started it last year. The family's little girl started it in memory of one of her closest friends that passed away in '07 and in honor of one of her friends in her Girl Scout troop. For the family to pull together and raise $20k last year (in only 6weeks and only by word of mouth mind you) and to want to do it all again... They are great! We have over 300 people preregistered and open registration at the event!

If you read this and you're in the DFW area, please come out and join us. Here is the flyer:



And if you can't come....

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!