Sunday, November 8, 2009

Nov 8, 2009

I've posted two new days on Oct 31, and Nov 2. Still working on others. I'm trying to stay more up-to-date on Avalon's new Caringbridge - so I've posted there today.

I hope all is well with each of you today! We're still here, Avalon is still battling pain demons...and the next surgery is looming large on this coming Wednesday. Ugh.

Saturday, November 7, 2009

Saturday Nov 7, 2009

Quick note, I updated Avalon's caringbridge site.
I'm working on detailed website updates. I'll let you know.


Friday, November 6, 2009

Yet another way to pester people

Well, this glorious blog is not working out as well as I thought. Apparently it's rather difficult to sign up with or to leave comments on...or who-knows-what. I'm so tired of searching HTML sites for free code, worrying it will somehow crash my beloved computers...I give up! I'm not giving people TWO options to "sign up" to follow Avalon news. You can come here, or you can go to her new Caringbridge site: I hope I've managed to cover all options now! Good grief, I feel like I'm stalking people.


Monday, November 2, 2009

November 2, 2009

Good morning, all! I just wanted to drop you a quick note to tell you that I've put up lots of new stuff on Avalon's site. I have been filling in pictures and notes from the last hospital stay. I've also put on lots of pictures from Trick or Treat. The home page of Avalon's website has links to all the new pages, and they link to each other with "Back" and "Next" buttons at the bottom of each page. Some of the entries are loooooong....but as usual, I try to be detailed so everything makes sense. Also, this really is my gift to Avalon...some day I hope she reads it all and realizes how strong and brave she is, even if Mommy sometimes isn't.

Avalon got her new PICC line on Wed, Oct 28th. The first brain surgery (temporal decompression) is scheduled for this coming Wed, Nov 4th. I've got oh...about a zillion and one things to do before then! And what am I doing today? Taking the kids to Cleveland, for a private concert for special needs medical families by the latest Disney darlings, the "Honor Society". Should we be going? Nope. Our van is croaked and we have had to borrow a truck to get there. We're behind in school, and the laundry monster has eaten a significant portion of my bedroom. I have packing and organizing to do. I have calls to make. We should be responsible and stay home..... We're NOT going to.

Folks, if you learn nothing else in life, learn to grab at those little moments with gusto and with both hands. Grab them, enjoy them, savor them. It's the 'moments' that make life worthwhile, not the 'work' of life. I should be responsible today and teach my kids about being an adult. Instead, I'm holding onto the joy of childhood and embracing the day, and every moment I have with ALL of my children... I take NOTHING for granted, and I refuse to look back some day and think, "wow, I guess laundry could have waited. I wish I had gone to ____" No, not me!

So, grab a moment today and let the people you love, know you love them! And if you want to peek into our world over the past few weeks, here you go.

Much love to all of you!!

Tuesday, October 27, 2009

Avalon website updates

I'm trying to go back and fill in information. I have the text written for probably five more entries from Avalon's recent hospitalization. I'll hopefully fill in the rest of the days tonight.

Avalon's first brain surgery of three was postponed late Thursday evening. It had been scheduled for Fri morning the 23rd. Avalon did not have enough IV access available to safely attempt surgery. She had blown so many veins during her stay, no one felt she was safe to proceed.

Instead, Avalon is scheduled to receive a PICC line tomorrow, Wed the 29th. One week later, on Wed Nov 4th, Avalon's first decompression will be done. All of these delays mean we won't be done with surgeries until some time in December, but that's perfectly alright with us.

These delays were partly driven by necessity, partly by the gigantic, loving heart of Avalon's surgeon. He promised her she could Trick or Treat, and he stuck to his word. I'll explain in detail on the site later on today.

I will be adding pictures to the posts I have written. I will notify you when I do.

Hugs to all of you!
Alicia, proud mommy to the A-gang and Princess Avalon

Tuesday, October 20, 2009

October 19, 2009

Cutting and pasting from Avalon's site to this blog is the pits. They don't "communicate" well, so you get that weirdo N%BSP error thingie every time you have punctuation. Dad blasted vexes me.

So here's the thing. I wrote a ridiculously long, heartfelt, painful and OK, a tad bit poignant and funny website entry. If you wish to read it in it's entirety, go to:

If you want the cliff notes, here it is. Avalon's pressure was better today, but she is still flat. She is bored senseless and because she feels better, is focused on how much she misses everybody at home. The kids at home miss us, we all cried at some point today. Dr. Kosnik says she must continue to stay flat and heal - so she is 10o0% sealed before surgery. The first surgery will be Fri or Mon, depending on her healing and his schedule.

I vented a lot and tried to explain my wacked out head. I'm so sad and scared, I'm not my usual self. I'm finding great solace in a few good friends, and a ton of spectacular nurses. Avalon is finding very little solace anywhere.

Life is still quite suckish. Can't wait for it to get better.

Hugs to any and all who choose to come here. Unfortunately, the big post may be on the actual site, but any comments will have to be left here. That's the best I can do.

Technology vexes me.

- Alicia and Avalon

Sunday, October 18, 2009

Oct 18, 2009

Actually, for the first time, I have better news to report this morning. Avalon woke up because she needed to go potty. This may not be newsworthy for most people, but for a dehydrated basket case...we celebrate the occasional toilet trips. Better yet, going potty didn't leave her in agony, a good sign that we may finally have a bit of a seal starting to form. OK, so Avalon isn't in agony, but in all honesty, she isn't exactly peppy. She is complaining about her back hurting. Since there is no miserable headache to pair with it, we are going to try just Toridol. After all, the more we can hold off on the morphine, the better for her motility issues (morphine slows movement of food through the GI tract). So, Avalon started the day with Toridol. She's still not eating, but she did ask for more chocolate milk.

I should have known it was too good to be true. :-( Damn it anyway. After having a pretty happy morning, Avalon was taken down to x-ray for an abdominal film to help GI assess her. Since she produced a few "poo rocks" last night, I'm hoping she'll be less full than we anticipated. Anyway, the trip down and up was pretty uneventful. We had some giggles once we were back in the room. Avalon's bed refused to go back 'down'. To transport in a bed, they raise the bed height so it's easier to push. Once you're 'back home' you lower it to the safe height again. Avalon's bed wasn't terribly cooperative. I retrieved my friend from across the hall, and the two of us tried everything we could think of. We turned locks on and off, plugged, unplugged...put brakes on and name it we tried it, no luck. Eventually we called in the troops. Once the nurse got here, we all repeated everything we'd already done. Sure enough, it sputtered and spit a time or two, but we eventually got it down. Since little miss is ordered flat, it's not like we really need the bed to function perfectly. However, if we go on to surgery w/o ever going home, I do believe we need to request a new bed!As for the "Damn", yep, the headache is back. RATS! Avalon had begged for Cheetos, so I went down to the cafeteria and got them and a Dorito chaser. She ate the whole bag of Cheetos, but only crunched through a few Doritos before she gave them up and started to lay quietly. Pretty soon, I saw her rotating on her side, and kind of hiding her face. Joy-Anna was in here chatting, and took one look at Avalon's face and said the same thing I did - she's in trouble. I asked Avalon if she was in pain and she said, "No, I'm fine. My head just hurts" Yet another example, she really doesn't feel pain like normal kids do. I guess it might be more appropriate to say she doesn't report it like others. She feels it, she just thinks it's normal. Long story short, we've decided to go back on the morphine/Toridol rotation. Unfortunately, this means that stupid leak is likely still flowing. Cripes I'm frustrated....UPDATE: Sure enough, 30 minutes after the morphine, Avalon rolled over onto her back from her side and requested some food. If the past few days ring true, she'll eat a few bites then be full. Soon after, she'll likely get a small headache (in spite of the drugs) and get really quiet for a while. I'm a tad bit tired of this. She's bored to the point of being bonkers. Grammo is going to go ahead and come in so I can go home, get clean, pick up clothes and a few other things. Avalon's day nurse, Shannon, and I have come up with a survival plan for the day. Avalon will stay on a constant morphine/Toridol rotation until tonight, and we'll try again. This way, Grammo won't have to worry about assessing pain, she can just sit and keep Avalon company. Hopefully, she can also badger Avalon into drinking more. We'll see.As for surgery plans, the residents did as predicted this morning. Avalon will be NPO (no food) after midnight. They think surgery might be a possibility tomorrow. We all think they're nuts. Who in the Hades does surgery to reduce pressure on a kid who currently has none? Much more likely they'll do a blood patch tomorrow to finally close the stupid leak. Avalon would need to be NPO for that sedation anyway, so we're rolling with it. Truth be told, Avalon won't really care that much. Food is not high on her list at the moment. Now that I have the website up and running on this little laptop, I'll try to go back and fill in what the past few days have really been like. In a word, they've been suckish. For now, I hope some of you find the new blog system to be acceptable. If not, you can always just check the home page like you used to.

Saturday, October 17, 2009

Saturday Oct 17, 2009

OK, after receiving several kind, wonderful, heartfelt offers of help with my desire to add some elements to Avalon's website, I have made a decision. Ultimately, I'm a huge creature of habit. And...well...a total control freak. I like my simple site design and my less-than-ideal sitebuilder program. I would love to say I have the mental capacity to learn a whole new system, but I don't. In a perfect world, I would learn to write code, find the best and cheapest web host, and learn the ins and outs of the most efficient system. I'd also be 5'10" and 125lbs. I'd be 25 with perfect skin and sculpted abs. In reality, I'm a plump, middle aged, Supermom of limited mental capacity due to a pachaderm sized passle of stress. In other words, I'm staying with what I know....well, for the most part.

I'm taking a wise suggestion from a new friend and creating this blog for Avalon and A-gang updates. I'll post things here, and then you can easily link back to the real website for pictures and sometimes even for longer posts. With this blog, you will have the option of registering and then you'll receive email notifications whenever I add something. That way, no more pestering you with emails. Besides, you'll now be able to comment on whatever mental garbage I dump on you.

Ultimately, Avalon's Army of Angels is a mother's heart wish. It's my gift to Avalon, so she may someday see how many kind-hearted, wonderful people reached out to us and took her to heart. I guess that's why I'm so protective of it. It started as a diary of our cancer journey, and has morphed into a family story. It has grown and changed in ways I couldn't have imagined, then has Avalon's medical life. I thought Avalon's medical issues would have long since ended. Well, they didn't, they took on a whole new life of their own. So too, has Avalon's Army of Angels. The underlying truth though remains the same, we are a blessed family. We have met, and continue to meet, amazing people. We are grateful beyond words for each day we have together, and we take nothing for granted.

So with this new turn in our path, we begin an entirely new adventure. As usual, we welcome you to walk with us. You may only come for a few steps, or you may stay for several miles. The choice is yours and the pleasure is ours. For each moment you spend with us, we hope we can help you find the joy and blessings in your lives.

You all mean a great deal to us. May we someday, in some small way, convey how much we are honored by your visits. We appreciate you, and we hope you will embrace this new, slightly altered approach to our insanity.

Much LOVE to you all!