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!
Wednesday, May 13, 2009
Thursday, April 2, 2009
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....
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....
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!
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
Blah...
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? :(
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.
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.
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