As Good as it Gets

Today has been an ok day (so far). She slept pretty much through the night and only roused at about 6 AM. I administered her needed meds. At first, she was not able to open her mouth to talk or eat but after the medications got into her, she actually took a sip of chocolate milk and then proceeded to drink a full 8 oz (a rompy cup) full. She talked to Roger a little bit too. The day has consisted of:

Visits from friends, schoolmates, and Noah's Children staff to read, sing, and talk to her (and us).

Administration of medications (all timing related so lots of tracking involved)

Awaiting the snow and now watching it fall. It is coming down pretty well right now and anyone in the Richmond area (or those keeping an eye on the Weather Channel) know that we are headed for some good snow. I guess it's a good thing that everyone bought out the grocery chains and filled up their gas tanks.

She has been sleeping, dozing, sometimes slightly awake, and even occasionally responsive to questions with head nods and appropriate waves, etc. Sometimes she is even snoring. She hasn't eaten anything since this morning but she genuinely seems comfortable and content. That makes me happy.

The visits have all been wonderful and I was really amused when one of her preschool friends said, "Her hair grew back!" and another one said, "And her face got a lot bigger!" I love the innocence of children. I think they had a good visit. At the same time, I think Roger had almost as much fun entertaining the kids who visited. It's good therapy all around.

They will be delivering a pump for the morphine tonight and we will get it started tomorrow. This will hopefully even out her morphine dose while allowing us to "push" some extra if she seems in distress. It's hard to say where things will go from here (there are multiple possibilities) but I doubt she will be alert on a regular basis from this point forward.

I have VERY good news on the Denver front: I have had THREE people contact me about helping with our family in need that lives in Golden. I have sent out an email to everyone, putting all in touch with one another, so hopefully the ball is ROLLING. Be on the lookout. We may use this blog or our website as a vehicle to help with PR or networking as we help this family. Thank you to those of you who have agreed to help. Lara Lombardo, a friend of Roger's from high school (Denver North!), helped to organize a bake sale in Denver recently for CJ and they raised a little over $400. We have asked them to pass these funds directly on to the family in Denver in CJ's honor. Thanks to any of you who participated in that. The CJSTUF network is working already! THIS is what it's all about!! (No, Roger, it's NOT the Hokey Pokey!!)

OK, I understand dinner is on its way so I plan to go watch the snow, enjoy my daughter, enjoy a meal, and stay safe and cozy indoors. Y'all do the same!

Rachel

Tuf Stuf

It is really hard to watch this happening.

She slept really well last night (over 12 hours), woke up still seeming to be uncomfortable. Roger went out to the pharmacy ASAP and got the new prescriptions, including the morphine. She got her first morphine dose at about 11:30 AM and contrary to the usual logic of knocking her out, it proceeded to pep her up. By 12:30, she was talking, reading with Aunt B, and seemed to be doing pretty well. She had a lovely visit with Ms. Sue-Sue (a neighbor and friend) and another nice reading session with our friend Kim, but by 6 PM she was REALLY fading. Since 6:30 or so, she has seemed very uncomfortable despite having all the medications we can give her at this point. She can't really talk to tell us what she needs and she is obviously not happy. Did I mention how much this sucks? I keep trying to think about the butterfly analogy and just think that it is her cocoon taking over. Sometimes the visualization works and sometimes it just makes me feel horrible. To add insult to injury, the medical equipment company delivered the oxygen machine. I just feel like we're being swallowed up by terminal illness "stuff."

My day was good in that I got a lot of things "checked off" my list. The requests to read with CJ have POURED in and a good part of my day included filling out the calendar. Available spaces are becoming as hard to get as Barbra Streisand tickets in San Francisco but there's still some time available if you are interested. Check out the previous blog post for helpful hints on this.

Thanks for the sweet notes and kind visits we have already received. There have even been some good, healthy snacks coming our way!

tomorrow's agenda includes another visit with the Noah's Children folks and Friday is Jam-Packed with reading/entertaining CJ. Plus, Roger will return to teaching at RNR officially on Friday. Wish him luck!

I'm gonna sign off because I just don't have anything else to say...

Juggling work and Charlotte's care

I had to laugh at the many people who were surprised that I didn't go to the speech eval. For the most part, it was a logistics issue (I was scheduled to work and Roger hadn't taken her to any therapy appointments yet...we like to share). But I think I might have been an annoying SLP at the eval so it's probably better that Roger went. While he does know most of the "lingo" (He's a good little SLP Assistant!) he can "play" unbiased better than I can.Kind of a rough night. She hadn't pooped in over 2 days so I figured she would be uncomfortable. She had a great time while I was gone. As we settled down for bed she was full of lots of aches and pains (head hurts, leg hurts, I'm cold, I'm hot). Since Roger was away, I just felt it would be better if she slept with me. (hope I don't create a nightmare) She finally settled down a little after 11 but then woke at 4 AM pooping. After a change and more medicine, she finally fell asleep again around 5. I'm off to RnR for a full day of classes, birthday parties, and maybe some paperwork...Extra thoughts and prayers go out to my friend Emily. She's going through some medical stuff so say a little prayer for her and her family! HUGS!Gotta run...Rachel

Feb. 2, 2009

A sleepless night

A little calm before the storm.
We woke up at about 2:00am and worked through some pain. She was asking for mommy the whole time. Finally got back to sleep around 4:30 and slept until 8 or so.
CJ sat on my lap for breakfast and seriously wolfed down a waffle, sausage patty, and scrambled eggs. No movement so far but everyone with a stethoscope says they hear "good movement" in her belly.
Today should be a big day. The "Army Of Darkness" has decended: Speech therapist, OT, PT, myriad of other Ts. Gotta go join the fun.

Another busy night

Another very quick post before I head in to the hospital for night duty.
20K hits! Once again you all (since I got harrassed and ridiculed for saying "y'all" last time) blow my mind.
I've also seen what is, so far, my favorite card for Charlotte. The Giles family gave it to CJ and on the front is cartoon of a couple of bears hugging. Open it up and there are lots of Disney stickers and the saying,
"If I hugged you every time I thought about you...
You'd be squished!"
Thanks Samantha, Megan, and Karen. Make sure you come back next week to make your volcano erupt!