November 29th Tuesday: Just a few pictures

Here are a few pictures from the last couple of days. Altogether they look a bit misleading, Charlotte spends a big part of each day sleeping...of course its when shes up and playing that out comes the camera.

Supper time Monday the 29th, yes, she was actually asleep. She ate quite a bit of KD and cream cheese first though so that was great. I would like to point out the shirt she is wearing... she has worn it all week, it has been a favourite since the day she got it, lately she insists on wearing it. When its time to get dressed in the morning she starts tugging on her jammies saying "Shirt, shirt." In case I'm not sure which shirt she means she will point at the picture on the wall of her wearing it from last winter. This morning I told her it was dirty and in the laundry and she had a little redhead/steroid fit and yelled "SHIRT SHIRT SHIRT" at the top of her lungs. Out of the laundry it came.

 Here we are just today (Tuesday the 29th) doing some crafts, decorating little trinket boxes. She found a sparkly purple heart in the sticker pile and showed me, "Shirt!" Yes it looked exactly like it, so we decorated her box to look like her shirt.

 Here she is again after supper, after sleeping most of the day today it was nice to see her up playing for a couple of hours. Making sure all her kitties got their milk, maybe she thought that way she had to drink less herself? Thanks to everyone for the gifts for the girls, they are loving the crafts, stickers and especially the kitties.

 I heart DAD, I heart DAD, I heart DAD... its been like this for a year. There is no denying that she is a daddies girl. Today I had an idea. I picked up some iron on butterflies to make the girls matching shirts... when I noticed that Charlotte's shirt had a little heat at the bottom! Ha ha! I'm feeling so clever, now watch tomorrow morning shes going to have a fit. I'm going to have to try really hard to not take it personally. I know she hearts Mommy too!

Charlotte's doctors think that she has been fairly steady this past week. Words are chosen carefully to not give the impression that she has improved but her condition has not worsened. One of our biggest concerns is that she hasn't pooped in a long time, all the different drugs that shes on coupled with the fact that shes not eating and drinking well, and that she is not mobile... we are in trouble. Another concern is pain relief she is on an oral morphine and a big steroid dose that is keeping her comfortable, but it always seem to need juggling. The morphine is one of the reasons why she is so sleepy all day. We appreciate your continued prayers for healing for Charlotte.

November 27th Sunday: Tears...

November was great right up until the middle of the night on Wednesday the 23rd.

Charlotte woke up at about 2am with a shrill yelp and started throwing up. She did this 5 times throughout the night until about 6am when things finally calmed down and she slept a little. That morning she had a hard time to fully wake up, she was so groggy and sleepy. A fury of calls and doctor visits and we changed her drugs around, hoping that would make her feel better. Codeine was switched over to morphine and that steroid that I mentioned last post, that she has been getting a .5ml dose twice a day was boosted to a 2ml dose three times a day.

Our doctors here have been in close contact with the palliative care team at the Childrens Hospital. We were been told that it looks like her body has finally had enough, they think that she is on her last few days, maybe a week. I cant begin to tell you what that was like to hear. Days of tears.

In the few days since then we have had some improvements, her drugs are keeping her comfortable. Each day she seems to eat a little more, sit up and be a little more interactive too. For the most part she seems to be very peaceful and comfortable. A constant roller coaster.

We continue to pray. Please pray for us all.

November 18th: Feeling good for a couple weeks

After laying on the couch, not eating much for a few weeks Charlotte was pretty weak and tired. She did not look good, her doctor was very concerned. Then we put her on a steroid to try to help relieve the pressure in her head, she had one little dose at bedtime on Thursday night (I cant remember which Thursday... it all blends together now, I think the 4th of November) she had .5 of a ml... that's like 6 little drops. AND THEN at 4 AM she woke up and said MOM! TOAST! HONEY! Ok, we are not going to complain about the ridiculous hour, lets get some toast going! This was the first time she asked for breakfast in a long time. She ate two pieces of bead with honey. She was up playing all that day, eating and didn't take a nap once. This was amazing. These pictures were taken a weeks or so later, after she had started eating well. She was up and feeling good. She was eating cream cheese by the plateful, she went through an entire block every two days- I'm not kidding. We drove by A&W one day and she spotted it out the window... she started fussing and gesturing and asking to eat, finally we figured it out and doubled back to go through the drive through for a hamburger. Then at supper that night she saw the napkin left over from lunch, and asked for another burger- so her daddy went back out in the cold for another burger. With the eating and feeling generally better also came little steroid rages.Once I made her toast and put it in the toaster by accident (the toast that Charlotte asks for is actually just bread, not toasted at all) well she put the first bite into her mouth and scrunched up her nose, squinted her eyes at me, and took the bite out of her mouth to inspect. With a scream she threw it at me and flipped the rest of the plate off the table onto the floor. I got the message, don't tick her off!

Here she just finished up a plate of cream cheese... more please?

Here she is, must be finished- I'm not sure if she was wiping off her mouth or showing us how big her tummy was from all the cheese.

We had almost three great weeks, she was eating, feeling good, and enjoying herself again. Her doctor was so happy with these changes, I think it was more relief than he had even hoped for. We realize that the steroid was not really fixing anything, it was just masking the pressure in her head that was causing her the discomfort. A side effect was that it boosted her appetite. We had no idea how long it would continue to help her feel comfortable, we were still taking things one day at a time. But when that days are that good they fly by way too fast.