January 18th Wednesday: Skipping and jumping in Heaven

I would like to thank everyone for their support and prayers during Charlotte’s journey.  We appreciate that we have amazing family and friends and live in a wonderful community.

Charlotte has started a new journey. Last night (Tuesday, January 17^th) just before the clock struck 10 she passed away peacefully in our arms. She was surrounded by people who love her and was being told about how proud we were and how much she was loved by all. She fought an incredible battle and we take comfort in knowing that she does not have to fight any longer. She is in heaven now, running and jumping like she has never been able to here on earth.

A quote came to my mind as she was passing. Some wonderful scripture? A wise mans words? No. It was from one of her favourite movies, Winnie the Pooh. At first I thought it was something that I wanted to tell her, but after I realized that maybe it was something she wanted to tell all of us.

“If ever there is tomorrow when we're not together... there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart... I'll always be with you.” ― A.A. Milne

Yolanda came and snuggled in bed with us this morning with a fresh picture she had just drawn. It was Charlotte skipping and jumping in heaven.

A funeral is being planned for Monday, January 23^rd for more information please contact either First Baptist Church (250)426-4319 in Cranbrook or Mcpherson’s Funeral Services at www.mcphersonfh.com

January 15th Sunday: Hard Times

I'm not sure where to start tonight but I feel like had better put something up here to help piece things together. I'm sure there are lots of 'bits' of information floating around.

Things have continued to change for Charlotte since the last post. Day by day she seemed to lose a little ground. After the sleepy day (in the last post) she did perk up and have a couple of better days.

On Thursday we saw quite a sudden change, after a fairly normal albeit sleepy morning she woke up from her nap and was not able to focus. She was still quite with it and didn't seem alarmed that she could not see. She woke up and asked for a chocolate, I passed her one and held it up for her to take it. She kept staring straight ahead and asked for a chocolate. I said here it is and she held out her arm in totally the wrong spot and made a swiping motion. After a few little tests of waving hands and flapping in front of her eyes it was clear that she didn't see any of it, she did not even flinch. Within an hour she could see a bit again. This seemed to come and go for the rest of the day.

That bump of swelling on her head continues to swell, a new bump started to surface between her eye and ear. It looks uncomfortable but she never complains about it. We have been slowly increasing her morphine hoping to ease any pain she might be feeling.

Friday she was sleepy again but this seemed a little different. Even when she was awake and alert its seemed like she couldn't hold herself up. Her head wobbled quite a bit, like when your falling asleep in the car doing that head bobbing thing, like that. I cant remember but I don't think that we tried sitting her up on her own, she would have slumped off the chair. But she was awake and alert, asking for chocolate and by suppertime she ate a good bowl of noodles with cheese. As long as she was propped up on someones lap she seemed to be happy.

Saturday morning she didn't want up; she took her morning meds and was swallowing ok, she was responding a little to questions, nodding her head or squawking, but she just didn't open her eyes or want to be moved out of bed. Her breathing was laboured and throughout the day got worse, a big deep breath followed by way too long of a pause, followed by some short panting, it is a style of breathing that indicates that a body is slowing down. Her doctor was by a couple of times and once again had to tell us that this could be the beginning of the end. We are all used to Charlotte and her amazing turnarounds so I think everyone is hesitating to label anything. By noon she seemed to have lost any capacity to communicate, I'm sure that she could still hear us, her eyes seemed to scrunch tighter at appropriate moments. We got geared up in case she was not able to swallow, her morphine can be administered under her skin so we set that up for the night. We are a little nervous giving her oral meds in case they don't all go down and we will not know how much she actually got. The other worry is that they could get into her lungs.

Saturday night went smoothly, she continued to sleep in her new big girl bed, Rob and I tucked in on either side. Her breathing got a little better throughout the night. Her morphine went in fairly smoothly. So I guess it was a good night.

Sunday morning came and she was breathing a little easier and was slightly alert again. We got a few nods and squawks around 10, by the afternoon things had regressed again. So we have spent most of the day tucked up on her bed reading her favourite stories.

........... I am being beckoned to help get things set up for tonight.

January 3rd 2012: The roller coaster rides into 2012

Things seem to be changing again for Charlotte. Nothing as big or fast as our big scare back in November, but a lots of little things that pile up. After some fairly good and constant days over the holidays she had trouble on Sunday (the 1st). Charlotte had some trouble breathing during the night, just an odd but distinct pattern- one big breath....a really long pause... then a couple of short pant breaths. She slept ok through it.

Usually Charlotte demands a very strict routine in the morning; upon waking she needs to get dressed within about three minutes, then downstairs for breakfast, during breakfast she needs her diaper changed (sometimes her pants again too) then we finish breakfast, then its shower time... yup we have to get un dressed, don't question.... after she's dried off and dressed then its time for a movie, and a Chai tea latte, then we go downstairs to play with her playmobil toys.

Anyways that's always the routine if she is feeling well.... but on the 1st she wasn't and she slept on the couch all day (in her jammies) she didn't want to eat, wouldn't even open her eyes much. Her breathing seemed to be back to normal. She still responded to all our pesky questions and seemed to be awake on and off all day. Dr. Pienaar dropped by said that he didn't like the look of it all. We started increasing her steroids a whole lot and morphine a little to see if that helped. She remained groggy most of the day. Then suddenly at 7:30pm she sat up and asked to get dressed. Then she wanted breakfast food, but wouldn't eat much of anything but chocolate. Then she wanted her movie....and to play downstairs until midnight when we finally shut the party down and told her that she had to go to bed. The next day she was in a foul mood but got up promptly at 8am and seemed to be feeling much better- up and playing and alert all day to least. It was such an odd turn around. We kept up the steroids for a couple of days and will see now if we can bring it back down.

Before Christmas we noticed a new little shake in her hand, an unsteadiness when she is holding something out in front of her. She has a little trouble holding cups steady to drink out of, and zeroing in on little objects to pick up with her fingers. Dr. Pienaar pointed it out and said that that sort of a shake is caused by pressure in her inner part of her brain. It is an indication that things might be changing inside, moving inwards as well as outwards. I haven't mentioned it for awhile but we have seen quite a few changes over the past two months on a bump on the back of her head (I mentioned it a few posts ago) it has grown considerably and sort of went from one little .5" bump to three little bumps, now they have sort of grown together... you can see in the picture above. It does not seem to hurt her at all, but it is a little awkward since she cannot lay with her head square on the pillow. We guess that it is at least partially made up of swelling since it seems to get smaller when she is on these high steroid doses.

Its way past my bedtime and I'm not really sure where I was going with this blog post anymore... must be a sign that its time for me to stop typing! Good night.

December 21st-25th: Christmas Holiday

 Merry Christmas and Happy New Year to all our friends. I hope that everyone enjoyed the holiday. here are just a couple of pictures from Christmas. We knew that we would not be able to plan ahead this year but we were glad how everything worked out. On Wednesday the 21st we decided that Charlotte, and the rest of us, were stable and feeling strong enough to do a trip up to Bragg Creek for two nights. Thank you to everyone who re-arranged their schedules to help make that work out for us! We were glad that we got to sneak in a visit with Dr. Lucie and a few of our nurses at the Children's Hospital, we have not been back there since May! We were also lucky enough to have a little visit with Robs grandparents from Telkwa who were visiting in Calgary. We spent two nights and the girls got thoroughly spoiled! We took it fairly easy and enjoyed having some extra hands (aunties and uncles) to help keep the girls entertained.

 We headed back to Cranbrook on the 24th and were spoiled with great food and family again. Yolanda had fun learning to play battleship with Grandpa, she had some wonderful tactic- like one boat accidentally hanging over the edge of the grid! The girls were very spoiled with gifts from everyone. Charlotte has quite the collection of stuffed kitties now!

 Boxing day came and we caught up on some rest, Charlotte slept most of the day and was much more bearable after that. You can see in the pictures here that the steroids are catching up to her a little, her cute little cheeks are puffing up a bit. With that also comes a short temper. For the most though she had a pretty good holiday. She learned that she can push the boundaries more and more and get away with things which is pretty frustrating for us. She knows that we will dance on our heads or rearrange the stars if she screams loud enough for long enough... something she is willing to do. Her taste seems to be changing again too, she has such odd preferences its hard to plan ahead. For quite awhile it has been Kraft Dinner and hotdogs, then over Christmas she discovered shrimp. Once I went out a bought a whole bunch of shrimp she has changed her mind... right now its just chocolates for breakfast, pickled asparagus and noodles with parmesan cheese for lunch and dinner and copious amounts of Chai tea to drink throughout the day.