The adventures of Mommy, Grandma and Cassie: The Pink Hair Caper.

This week included a major celebration in our family. Cassie is finally back at school. This is her first time back since the end of October (right before her surgery). She had home tutoring to keep up with her class, but actually being in the same room with your friends is so much different. She also is being mainstreamed this year so she is in her regular classroom all day instead of being in the "options" class half the day. Progress is measured in small steps some weeks, but this was and is huge. A lot of credit goes to her teacher, Ms. Hunt. She is not only a wonderful teacher, she is a kind and compassionate person. Her first day back included her favorite outfit, Leopard spot long-sleeve T and matching tights (pink with spots of course), matching skirt, bright pink cowboy boots, topped by her faux black leather jacket, and her fuzzy pink vest. Of course this is all set off by her pink wheelchair. Naturally she wanted her hair sprayed pink to match. She loved her pink hair so much she couldn't resist rubbing it on her cheek, which in turn colored her cheeks a lovely pink. Once the boys in her class discovered her hair was pretty much a giant chalk-like crayon they all patted or rubbed her head on the way past her. Pretty soon the entire classroom had pink spots, smears, etc. all over the place. Momma brought a cupcake cake for all of them to share after lunch, and juice for everyone. She was the hero of the day, but Cassie was the star. On the way home Cassie said, "Momma, I want my hair dyed with the stuff that doesn't rub off." So, of course, we acquired the necessary equipment and proceeded to dye Cassie's hair PINK. I have included documentary evidence. ;) We really have no idea how long it will last, but it wasn't all that hard to apply. Cassie was very patient in spite of the fact 6-year-olds don't enjoy sitting still wrapped in plastic wrap for 1/2 hour while the dye soaks in.

My friend Jeremiah, upon reading the title of my post about this on Facebook asked, "ooh.. new RPG video game? I want pre-order info!"

I told him, "LOL, sure Jeremiah!! That'll be $49.95 (isn't that the going rate?) LOL, just check out the photos hun ;)"

To which he replied, "Yup!! can I download it straight from a site? LOL"

So I told him, "Will have to get my daughter and son-in-law to write the code first LOL"

As you can see I take myself seriously, I really hope you will also. Of course Cassie also told me, "Grandma, for my birthday I want to get pink dye and you get purple dye and we will both have pink and purple stripes." She also asked if I could do hers and she could do mine. LOL

Holiday blur

That is the best description of the past month, a blur, confusion, fun, festivities, family, the usual holiday insanity in short. We planned our family gathering for Christmas eve, with as little last minute cooking as possible so Tess could have a good time, too. She and I made a last minute trip in search of the perfect gift for Cassie. When I say last minute I mean the 23rd, and really a last ditch effort to find what Cassie had asked for. This was sandwiched in between sewing on wild "rave" style legwarmers and kitty ears for the older girls, Athena and their cousin Kat, and making a custom marble pouch for my son-in-law Eric. Tess and I had been trying to figure out where and how to find a "bike" for Cassie. Those of you who read my blog realize Cassie is a paraplegic, so a bike she could ride without using her legs was crucial. We searched hand-powered bike for kids online and eventually found a forum where someone else with a child with Spina Bifida had been told about something called a PlasmaCar. On their website was a link for finding where you could buy them "locally." Well, there was a toy shop listed within 20 miles of us, of course they didn't have one anymore. So the next closest place (roughly 70 miles away) was a cute little toy shop in Albany, Frogs and Pollywogs.
We got lucky, the store had a PlasmaCar available, one, only one. AND they were kind enough to hold it for us after hearing our dilemma. It took us about an hour to leave town, and another nearly two hours to get there, but it was worth the drive. The smile on Cassie's face on Christmas eve was worth all of it.

Was our celebration perfect? Was it a festival of fun, food and family? The answer to that is a resounding YES!!!

Cassie's bath

On Monday, Dec. 13, Cassie went back to Doernbecher, yet again. BUT, and it's a very big but, it was to remove the final tube from the outside of her belly. She told everyone who would listen she was keeping the inside ones. When she was called in for her appointment she was already in panic mode. Afraid of what was to come, but looking forward to getting the final step over with. As they followed the nurse she kept saying, "We need to go slow. Can you please be slow like Dr. Austin did?" The nurse asked her if she was walking too fast. When she was getting ready for the tube removal she was starting to hyperventilate, Dr. Austin told her to calm down. Then she kept sobbing and breathing hard and saying, I need to calm myself, I need to calm myself. This was all before he had done ANYTHING. LOL Momma told her to breathe (like Lamaze breathing). She started to breathe deep and hard, and again Dr. Austin told her to calm down. She asked him, "Can you please go slow like last time?" He told her fast would get it over sooner, but she wasn't too sure about that. She finally told him to go ahead. (she's amazing for a 6-year-old) He removed the final tube, wiped the blood off and put a bandage on the wound. The second he was done she popped up and threw her arms in the air saying, "I need a hug, Dr. Austin." He said she was the first child who had ever popped up so fast, and certainly the first to ask for a hug following this procedure. He said they were usually so caught up in the crying they didn't even notice him. Not our Cassie. She had her eyes on the prize, a real bath. She hadn't had a real bath for a month and a half.

So last night, after the wound had a couple of days to heal, she got her tub bath. She was the happiest girl in the world, surrounded by hot water and piles of bubbles. She didn't want to get out. Ever. LOL And who could blame her after a month and a half with . . . as my mom always called them "spit baths."

Best giveaway EVER!!!

I just entered the best giveaway ever. It is from the great online and brick and mortar store Gamestop. Anyone with kids, or who is into gaming knows this name well. They have outdone themselves, and the prizes offered are well worth the few minutes it takes to enter. Check out my note, and click the first link in my note to enter yourself.

http://www.facebook.com/note.php?created&¬e_id=477698753497

Frozen windshields and pancakes

My day started off way too early, and frozen. I woke to my alarm blasting to remind me I had a doctor's appointment this morning. I generally stay up fairly late and get up around 9 am or so. So, having a doctor appointment at 9:45 am put a cramp in my style, to say the least. However I was really glad I got up so early and got to witness the beautiful ice on my windshield. Of course the bad part of this story was my car's unwillingness to start. So since we couldn't get my car running with any sort of speed, I drove my daughter's Jeep to the doctor (an experience in itself).

Now on to the important stuff, an update on Cassie:


Cassie is home and doing fine. She has had most of the tubes removed and is starting to use the new catheter port next to her belly button. She will go and have the final tube removed in a week or so. Since she has missed an entire month of school and will miss a bit more (before the holidays), she has been working with a tutor. She is doing great, feeling better every day, and starting to move around on her own again. I think her favorite part of being home is getting to eat her mom's cooking, and having pancakes whenever she wants them. The dietitian has added instant breakfast to her food regimen as often as she wants. Since Cassie has been addicted to chocolate milk for a long time this is really a simple change. She weighs in at a mere 30 lbs. so needs all the calories she can get. As a 6-year-old she is definitely on the slender side, but with the lack of muscles in her legs it's not surprising she doesn't weigh as much as other kids her age. She has had visits from her best friend, and been out and about as much as possible, including going to her favorite Chinese restaurant.

Scary night and afternoon, but better now

Cassie was vomiting and screaming during the night due to pain. So they took her way down on her morphine dosage thinking maybe that was causing the vomiting. It all started again this afternoon, so meanwhile they did x-rays, ultrasound etc., trying to figure out what was causing all the pain, and they all came back negative. So it is supposedly gas etc. as her bowels start working again. She was finally able to get a little rest as they increased her morphine again. Don't know whether I will be able to update again until Monday, but I will try.

Day 2 post op

Cassie had a hard night Wednesday night. She wasn't breathing as deeply as they would like and ended up on oxygen a few times during the night. Thursday night though she was doing better, fever down, and complaining because no one had fed her or given her anything to drink. We played with the controls on her bed a bit and sat her up a bit straighter. If she continues to do well she will get some liquids on Friday. She was definitely doing better when I left, and I am heading up to see her in a few minutes now.



Mommy, daddy and I decided to try playing Monopoly. We are in the middle of a game. We photographed the board so we would know who had how many hotels, houses, etc. since we had to call it off so I could go back to my friend's house to eat dinner and sleep.