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.

Day 2 post-op

My gorgeous angel-girl, Cassie, had a long hard day. After being awake much of the night, once the anesthesia had worn off, mom and dad didn't get much sleep either. Grandma showed on the scene about 10:30 am and gave them a much needed break from being the person at the center of Cassie's universe. After Cassie discovered she was hooked up to a morphine pump, and that pushing the button was a way to fight back against the pain, the day progresses with a bit more humor. She wanted to hold the button, which mommy and daddy had been pushing for her originally. She knew there were several things hooked up to her that beeped periodically when they needed attention, like the infustion pump controlling the antibiotics, and the O2 monitor attached to her finger. She also knew she couldn't exactly control those beeps, although breathing deeper could make the O2 one stop beeping once it started. We were talking about the beeps, and other odd noises in the room and coming from the TV speaker.




Well, mom and dad were both on laptop computers and checking on various things, not really paying attention to Cassie and grandma. Suddenly the morphine pump went Beep-Beep, and daddy said, uhoh what was that. Cassie said, "Daddy, it was me." She loved the sound it made, but she also loved the fact she could control or at least effect the pain level she was experiencing. We talked about her pain, and that it would get better over the next few days. The nurse came in and wanted to move her to change the bedding. Cassie didn't want to be moved, she was very afraid of what it would do to the pain level. I tried to explain to her that yes, it would hurt worse for a minute or so but it would get better fast. I don't know whether she really believed me, but she knows I won't lie to her about things not hurting when in fact they do. So she agreed to being picked up if it meant she could lie in mommy's arms for a while. The nurse and I picked her up and gently slid her into Tess's arms, which was no small feat. She has 4 tubes coming from various location in her abdomen, and each tube is attached to a different drain pouch. They are each clipped onto her sheet when she is in bed, but had to be moved and reattached to her diaper for moving her. She is also attached to a couple of different IV lines and infusion pumps, and a picc-line. So it was interesting trying to make sure all the things moved in unison and nothing pulled on her tender little belly. She slept on mommy for nearly an hour, then wanted to go back to her bed. The photos on today's post show her smiling at the joke of her being the cause of the beeps, as well as a couple of shots of her various hoses and one special one of her just after being moved with mommy. She was still hurting there, but wanted her photo taken anyway.

Once she got back to bed, my being there gave Tess and Brian a chance to eat, and just breathe without worrying about her. They had a leisurely lunch break, and returned in time to find Cassie and grandma both asleep. Like I said, it was a hard day, but the fact Cassie was finally asleep meant we were making progress. Not too much later she woke up and wanted to paint, I know at last count she had completed four paintings and was looking forward to doing more tomorrow. She won't get anything to eat for at least another day or two, and won't get solids for about another week. This is probably the hardest part of all since she has always loved her food, especially her pancakes and scrambled eggs. She is getting nothing by mouth at this point in time, and didn't say a thing about it today. She is so tiny, I worry about her losing weight. She barely hits 30 pounds and at 6 years old there is none to spare. She is quite tall, but has always been very tiny due to her being such a busy girl. I know she will rebound quickly once she is allowed to eat, but until then we just keep hoping and praying she won't lose too much.

Post Surgery

Well, yesterday was brutally long and emotionally and physically exhausting for all of us. It was also a rousing success. The urologist we met with after her surgery said it was very successful. Her appendix was used to create new "ducts" from her kidneys to her bladder, and from her bladder to the outside of her belly. A piece of her small intestine was used in augmenting the size of her bladder. She has a small vertical incision below her belly button, and 5 tubes coming out of her belly in various places. By the time she comes home she will only have 3.

She won't get anything to eat for at least 2-3 days, and to start of course it will be clear liquids. For a girl who is all about the food, especially pancakes, this is going to be the hardest. She hates the broth they tried to give her the day before surgery, the only part of her tray she found edible was the jello and the apple juice.

Last night she got to video-chat with her sister, but can't sit up well enough yet to see the laptop screen, so mom and dad had to each take a side of her bed and hold the laptop so she could see and be seen. She was very happy to connect with her big sis, her cousin, and her aunt. I am heading off to see her on her first day post-surgery. She is a trooper, and asked if she could go home yet last night within an hour of awaking from the anesthetic.

Cassie and her impending surgery

My littlest granddaughter, Cassie, the one with Spina Bifida will be having surgery next week. On Monday she will have a pic-line installed so they can easily infuse her without having her arms strapped to something. Since she uses them as her mobility, the doctors actually get it this time to put the IV somewhere else.

She is having bladder augmentation, which will expand the size of her bladder, and while they are at it, they will put in a port next to her belly button for self-catheterization. She is pretty excited about it. She knows she has to have an operation, and that it may cause her some discomfort. But she also knows she will be more grown up when it is over. At least that is her take on it right now. She will be in the hospital for at least a week, and out of school for up to six weeks. The surgeries require the coordination of 4 different doctors schedules, and a block of time of up to 12 hours. Her urologist, proctologist, neurosurgeon and pediatrician will all be in the OR. The neurosurgeon will be there just as a precaution since he oversees anything to do with her shunt, and it empties into her abdomen.

The proctologist will resection her large and small intestines for expanding her bladder size, and adding the belly port, the urologist will actually put the parts together and hopefully it will prevent her left kidney from failing due to backflush. The other doctor who will not have to be there for an extended period (doctor #5) will put in a special line for flushing her bowels from the top once she has healed from her other surgeries. This is another of the big girl things that is happening. I am sure if you look up Spina Bifida you will find references to exactly what I am talking about.

Suffice it to say, Grandma, Mommy, Daddy, Step-daddy and sissy are scared half to death just waiting for the surgery. All positive energy, prayers and good thoughts are more than welcome. I'll try to keep you posted post-surgery.

Hello again

Thought I would pop in long enough to say I am no longer a moderator for one of my favorite facebook games, but am still enjoying my facebook time. I also have a boyfriend / new love in my life. No details except to say he is kind, gentle, sweet, amazing and someone worth risking my heart for.

I was injured at work in July, and haven't worked much since then. The first 6-8 weeks I was unable to return to even light-duty work, so my wonderful (NOT) bosses fired me. Nice, huh? I am doing much better now, and have even done some graphic design work for my old part-time employer. Life is starting to look up again, and I am getting going making some new styles of jewelry, and prepping my lampworking (torching) area for future use.

More to come soon, and hopefully some photos, to go with.

Hi there

Ok, so I am a bit remiss in updating my blog. I know it, and I won't make any lame excuses, but I will say I have been a bit busy. In January I started doing beta testing for a new game on Facebook: Chronicles of Blood . . . a really wonderful game from Diviad, the creators of Ghost Trappers (another great Facebook game). Following months of beta-testing I was selected from the chosen few to be one of the moderators of CoB when it went public. What does a moderator do, you ask? Well, I have learned there is no easy answer to that, aside from to act as one of the "online Sheriff's possee" and to keep an eye on how players are treating each other. The multitude of ways people try to cheat the game itself and each other mystifies me. They can be very devious in their attempts, but the "mod-squad" tries to keep it all under control.

If you like monsters and vampires and all that entails, Chronicles of Blood may be right up your alley. I can't get enough of it myself. Check it out while you are visiting your Facebook page.