Friends of Charlotte

Friends of Charlotte

 

We have started a blood drive in memory of Charlotte. Our main focus will be for the month of October... but please don't let that stop you from donating all year long! Infact once you are signed up through Friends of Charlotte all your future donations will be counted towards our goal. Each year we will plan to reach a minimum of 35 units of blood. (I lost track but I know that Charlotte used at least 32 units during her battle with cancer.)

 

Here is a little bit that a friend wrote up for us:

 

A little girl who lost her life to cancer may not appear to be lucky but many times throughout her battle Charlotte was fortunate and received the lifeline that she needed: blood.
Charlotte’s big heart may have stop beating but the size and strength of it lives on in our quest. We ask you to remember her fondly and do what you can to help her friends; their little bodies need you. Educate yourself and open your eyes as wide as your heart to the fact that our Canadian Blood Services can only pass on what we choose to provide; your abundance of blood is a lifesaving gift to a child fighting cancer. 60 minutes, 7 times a year, offer your arm and give blood for our children.

Thank you all for your patience... we finally have the official link

Here’s How You Can Get Involved to donate today In Honour of Charlotte:

1. Book Your Appointment to Give Blood
...

Call 1 888 2 DONATE or visit www.blood.ca/clinics to find a clinic near you and to book your appointment on-line to donate.

2. Register Your Donations Towards "Friends of Charlotte":
Visit www.blood.ca/joinpartnersforlife and register with our Partner ID number:
FRIE013435 (four alpha characters, six numeric). Registration forms are also available at all blood donor clinics. Once you register, your past and future donations will automatically be tracked towards our annual goal.

3. To help even more: Book a Group Donation!
Organize a group of colleagues and plan a group blood donation at your nearest blood donor clinic. Contact carmen.caspar@blood.ca or 403-410-2722 to reserve your group appointment.

Thank you for joining "Friends of Charlotte", in making a difference and saving lives!

Not sure what to say...

It has been 8 months since Charlotte passed away and Im still not sure what to say. I feel like I should put something up here... Im just honestly not sure where to start. So I will leave it blank for now and maybe come back to this page.

We have something exciting started in Charlottes memory and as soon as I get the details figured out I will get them posted on here.

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.

December 9th Friday: Some good days again!

December 9^th Friday
I realize that I have not put anything up on the blog for over a week, my Facebook gets little updates but I realize that does not help here! 

First let me say that the” I heart Mom” shirt mentioned in the previous post was a success... so much so that her Daddy might be starting to get jealous. At least now we can rotate and wash her clothes!

Also pertaining to that last post, and way more important than the shirt thing, she pooped. Hooray! Thank you to everyone who responded with ideas of things to try, I received suggestions from 6 different people! I’m not sure how much detail everyone really wants to know about this sort of thing but let’s just say that after 14 days of no movements we were WAY past using psyllium husks. Let me assure you that Charlotte is on heavy dose of a lactulose every day. We started using suppositories daily, and when those didn’t work we stepped it up to micro enemas, when those didn’t work we were forced to pull out the big ones.  I will spare you of the more colourful version of that saga and just say that once things finally started moving everything seemed to get a little more under control.  It was a very tense couple of days, poor little girl.

We feel that we have had a tremendous answer to our prayers. Two weeks ago Charlotte was lying on the couch, unable to move, not eating, and sleeping all day. Her doctors here had been in contact with the palliative care team up in Calgary and they said that she likely only had a few days left. I mentioned last week that she was eating a little more and up a few times a day. Well I am extremely relieved to say that over this past week she has only gotten stronger! She is eating more and up and playing most of the day. She has the occasional nap, maybe every other day- we try to encourage it but some days it’s a fight, she is feeling too good to sleep! We have been able to sneak her steroids back down a little this week; it is still a bigger dose than it was three weeks ago. She is doing so well. She has really amazed us all. I’m not sure what the future has in store for us, we are still taking this journey one day at a time. But we are praying that we will see improvements each day and she will get stronger.

We have been so blessed that Charlotte and our family has such wonderful care. We live in a very generous community and feel very well taken care of. Charlotte has two amazing paediatricians here that are working with her care team up in Calgary. Two weeks ago they had been stopping by our house twice a day to check on her, and it’s not that we don’t like their visits, be we feel very relieved that the frequency of visits has diminished to twice a week now. We also have two incredible nurses taking turns here during the week; it’s nice to be able to just snuggle up with Charlotte while someone else is busy vacuuming or cleaning up in my kitchen! It’s especially nice to have someone else be the bad guy when its suppository or enema time! Although Charlotte thinks that our pastor comes over just to make her pause her movie, we really appreciate that he has been coming by daily to encourage and pray with us all. Many wonderful meals are being dropped off throughout the week, this eases up the grocery shopping, meal planning and preparation time allowing us more snuggle and play time. The girls are also receiving some wonderful little pick-me-ups in the mail, cards, letters and especially stickers are something to look forwards to in the mornings.

I love reading your comments, emails and fb messages. I realize that it’s awkward when you don’t know what to say, and that’s ok- most of the time I don’t know what to say either.  Old acquaintances that I see at the store ask “how are you?” such a simple thing... but it starts my mind reeling... well, I think, that depends on what you know, do you know about the past year and a half? Have you heard the horrible part? If you have, I can honestly say that (taking everything into account) this week’s been pretty good, an improvement or something... But if you have not heard any of that where do I start? Telling you ’I’m good’ is not very accurate! I size you up and think how much do you really want to know?... I’m sure I don’t get it right as often as I would like. Some people want more when I answer that things are ‘pretty good this week’ they say “really” with raised eyebrows and look like they are waiting for me to tell them the truth. But the answer that I give is sometimes all I can give; otherwise they might have to deal with an emotional Chernobyl.  So let me say that it’s REALLY ok if all you write is that you are thinking of us or keeping us in your prayers... it’s just really nice to hear that we have so much support.

We got our Christmas tree up and decorated and the girls have already gotten fully spoiled! Thank you to Alexander’s Quest for an exciting array of craft supplies, books and toys and the fun playmobil toys the girls are enjoying them immensely.

I had more to say tonight... but I just realized that it is 1am and so I will post this as is... maybe check back in a couple of days- I will try to get this edited and finished, or at least a picutre or two added!
Good night!

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.

October 31st: Halloween

 Charlotte wanted to be a kitty this year, and Yolanda... a dragon. Surprise, no! What was a surprise was that there were no dragon costumes to be found anywhere. Of course she was hoping for a particular dragon (Toothless from how to train your dragon) so I went shopping around at the thrift stores and found this hoodie, navy blue with silver sparkles- perfect. Then I just had to make it look like a dragon. After spending way too much time at the sewing matching we had something suitable. Unfortunately we didn't get very good pictures of her in the full get up, wings, tail, and all.

 I was feeling bad about how much time I put into Yolanda's costume and all we were doing was slapping a pair of ears on Charlotte... So I found some fuzzy sparkly fabric and made her a little skirt with a tail and fuzzy shoe covers to make her feet look like paws. Unfortunately by Halloween night she was not in any mood to dress up and did not enjoy her costume much.

 Not wanting to go out in the cold too much we only trick or treated the 10 houses directly around ours- just so that Yolanda could feel like she got out a little in her costume.

October 28th Friday: Changes

This was a hard post to write, and probably not one you want to sneak a quick read of while you are sitting in the office. I have blasted through the previous blog postings just to get them all up in order.  We had a beautiful summer; Charlotte’s health held up and time flew way to fast. But now things are starting to change for her and I feel like although some changes have been gradual they are starting to add up. We are seeing these things one day at a time, putting them all up here all at once is quite overwhelming. I wanted to get an update posted to share with you about how she is currently doing.
In July I posted that we were getting a couple of nurses in to bond with and get to know Charlotte while she is feeling well. That way should a time come when we need more help and care there would be someone familiar to step in. We ended up having a wonderful nurse come into our lives. The girls love having Dee come and play with them; her official title is the “Play Nurse,” because as Yolanda puts it, “She only has to check on Charlotte a little bit, then she just gets to play!” She is a blessing and not only plays but provides a bit of respite care for us.

In July I also posted that Charlotte had several small seizures. Her seizure medicine was then increased and I’m happy to report that we have not had any recurrences. We thank God for answered prayer; those were a very stressful few days. We wondered if we were making the right decision about removing her central line, in hindsight I’m glad that we went through with the procedure.

Near the end of September we started to notice that her right eye was having a slight lag time in focusing, it looked a little cross-eyed when she was looking at something at a distance of 10ft. That was hard to see, a sign that the tumour is still progressing. This has slowly regressed over the month, now she is cross-eyed most of the time, and it even seems to change eyes at times. We think this is caused by increased pressure in her brain. I can’t imagine what she feels like.

We have had to gradually increase her codeine to keep her happy. This is so frustrating and hard to gauge since she cannot articulate the pain in her head. Slowly, over a few days, she starts to get grumpy... maybe it was just a bad couple of days... maybe its pain... so we blindly increase codeine oh, now she’s feeling good again. Then we feel badly that it was not increased faster. Please pray for guidance and wisdom as we try to manage her pain, there are so many factors to consider. With the codeine comes constipation, so yet another medicine is added to her list to try and counteract that. We desperately hope that she is not in any pain but we just have no way of knowing. We have been discussing  starting her on a steroid soon to see if that will give her some relief. 

In the beginning of October we noticed a small bump on the back of her head, we thought it was possibly just from a bonk on the noggin, swelling that would go down. It has slowly grown. We are not sure what to think about this; although cancer is always in our mind- tumours should not cross through the skull. It does not seem to hurt her; she does not really like too much pressure on it but is able to lie normally. I guess it is not really important, just gives us something else to wonder and worry about.

Charlotte’s energy over the summer was great, fairly consistent at least. She would get tired and have an occasional “down” day after a busy one.  Into September and October we have had an increasing number of “down” days. On these days she is too tired to do much more than snuggle up on the couch and watch us buzz around her, she doesn’t really want to eat or be too involved with anything. We struggle to get food and fluids into her; every calorie that we get into her probably causes us to burn four times more. Then despite our best efforts on those days, she is also quite nauseous and vomits very easily. As parents one of our duties is to ensure that our children get proper nutrition, it is hard to accept the idea that this might not be doing her a favour much longer. Her doctor explained that these little ones can get depressed too, she is likely just sick of being sick. Our hearts continue to cry out for Charlotte, we pray for her complete healing. It is so hard on these days to see her be like that.

We do have good days. They seem to be getting farther apart but she still has a couple each week. On these days she usually wakes up in good time and asks for food. Then after a small breakfast she wants to play, she will sit up on the floor and we will play with some small stuffed animal or her dolls. She doesn’t really ask for much food again until the afternoon but she will constantly pick at something if it is available (and of course it is.) Favourite foods right now are toast squares, strawberries, grapes, cubes of cream cheese... all cut miniscule and served with toothpicks. Oh and honey, everything is better dipped in honey- especially her fingers.  She will enjoy most low-key activities, colouring, stickers, reading, watching movies. She loves kitties, most of our games involve her being a kitty, and Yolanda is always a dragon... somehow they make it work. On these days she has silly moments; she gets cheeky and waves her little fist at us if we are causing trouble.

 

At the beginning of October Charlotte developed a little cough, no other symptoms, just a cough. It stayed low key until Monday the 10^th when she started getting fevered and by the next day we knew we were in trouble. She started an antibiotic then but by Thursday things had worsened and an x-ray showed that she had infection in the top of her left lung. Pneumonia. We were lucky to have caught it fairly early, and got started with a second antibiotic. Unfortunately this antibiotic made her extremely nauseous and she vomited frequently (like nearly every time we gave her a dose which was four times a day.) So for two weeks we experimented with dose size trying to get in as much as we could without making her sick. This made her not hungry at all. We resorted to setting the timer at 20 min intervals and alternating giving her a minuscule dose of antibiotic or a syringe of blended fruit and veggies...all day long. It was fairly exhausting. But we made it through! We are extremely grateful for our friend Bev who has been organizing dinners to be dropped off each week for us, especially during all of that! The dinners have been wonderful; it is great to not have to worry about getting something healthy on the table on top of taking care of Charlotte.  Thank you to everyone who has been helping out with that, it is a big burden off our shoulders.

Two weeks of being sick and not eating has taken a toll on Charlotte. Her leg and foot muscles have tensed up and she can no longer bear any weight on her feet. I’m not sure how to explain, the tenseness is from her brain telling her foot that it is tense, not the actual muscles. On her good days she is still up and about and can “walk” a little on her knees or crawl, but for the most part she is dependent on us for moving her around now. This has taken a little adjusting for all of us since she is not happy to be left behind in a room for even a moment.

We take things one day at a time and try not to think too far ahead right now.  We appreciate being in your thoughts and prayers and all the kind words sent our way. Please continue praying; for guidance, peace, comfort, protection and above all undeniable healing for Charlotte.

September 6th Tuesday: Yolandas first day of school

First day of school pictures....I cant believe how fast time had gone, Yolanda has grown up so much this year. Here she is ready for Kindergarten!

 We were out enjoying the super warm September as much as we could... I know that the blog has been quite bare of "health details" I guess since she has been doing so well its easiest to put in the back of our minds and just enjoy each day. Charlotte had a great summer. Her health over the summer was very stable. We saw a slight decrease in the usage of her right hand, but its hard to measure since it was not being used very much anyways. Her weight gain was slow and steady, eating still seemed to be a bit of a struggle- one area that always causes grief! We saw Charlotte's energy levels decreasing a little at the end of the summer, if we had a really busy day (like her birthday party) she was typically wiped out the next day. That was still very manageable and we were able to take that in stride. Our family was very blessed with the amount of support we had, allowing us to stay home and savour every moment. We took it fairly easy, enjoyed many days just sitting in the back yard, playing in the kiddie pool and eating Popsicles. We took our one big trip to Kelowna and Vernon and other than that just let people come to visit us here.

I enjoy the following trio of pictures... blleeeech, yucky chalk!

 They make me laugh... and here she is, regained her cool and looking oh so cute!

September: Fun in the first week of September

Details will (hopfully) follow for our fun with friends this during this week... Im trying to get caught up to the present time but need to fill in all the previous posts first so that things stay in order!

Please bare with me... pun intended. 

August 3rd to 9th: Kelowna and Vernon road trip

We decided at 10:30 Tuesday night that it was a good time to take a road trip in the pink car... Charlotte was doing quite well, everything was stable and we were all healthy.

We had family camping (and having a lot of fun) in Kelowna and a generous friend who let us stay with her so we didn’t ACTUALLY have to camp (but we could still get in on all the fun!) So with a flashlight I snuck into the girl’s rooms to pack their clothes. We were on the road the next morning before 7:00. We had one unfortunate little stop to clean up a puking redhead but she felt better and we made good time the rest of the trip up to Kelowna.

We were happy that everyone seemed pleased with our last minute decision to invade their family holiday! The girls enjoyed the beach, it was a beautiful little spot where the cabins were, we spent most of our time lazing on the grass under the trees or playing in the sand under the sunshade.

 The girls enjoyed a few games of bocce, you had to watch your toes when it was Charlotte's turn to toss though... I know that yellow ball looks like she has a pretty good arm, but I think it was actually from uncle Greg who was standing behind her.

We were spoiled with all the wonderful fruit. Eating cherries in swimming suits is always a good idea! The girls had no problem helping themselves to everyones fruit, thank you to all our Aunties for feeding my daughters during the trip! We were thrilled to meet a cousin Yolanda's age to play with for the week, the girls got along great.

 Auntie Dar painted Charlotte's fingers and toes pink to match the car... and then Auntie Diana let Charlotte paint her nails... here is the finished manicures. Charlotte was so happy with herself, she kept showing everyone her nails.

 Here we are in Vernon, where we found some more cousins to play with. We had a great time staying with Ken and Kara. And wouldn't ya know it there was a CAR show that weekend! (Sorry to anyone who wanted to see car pictures, my camera was focused on other things.)

 THEN!!!... Not only did we decide in the middle of the night to take this trip, invite ourselves to stay with my cousins... then we also invited more guests for a party! It was fun and I was so glad that Jenn and Orlund and their two girls could make it all the way from Kamloops for a BBQ with us! Here is the best picture out of the twenty that I took... Try to get five little girls with ice cream to look at the camera, HA! We were missing Carter in this picture, he probably didn't have time for this silliness.
Below we have: Charlotte, Paige, Yolanda, Olivia, and Joy.... that's a whole lot of cute toes in the grass!

 We headed home on Tuesday the 9th. On the way home the car started doing something... not sure what but we thought that maybe it was a sign that we should stop and let it (and the girls) cool down... OH YA! Did I mention that the pink car does not have air conditioning? Cranbrook...to Kelowna...and Vernon in August? Anyways we were coming into Fairmont soon and lucky for us Auntie Cheryl just happened to be heading in the same direction and so she met us for a swim.

Unfortunately this is one of the only pictures that I got during the whole trip with the girls by the car, you would think that on a car trip like this I would have thought of posing somewhere cool for a family/car picture, nope. We just had so much fun with all the people we were visiting that I didn't think of it. And so here they are trying to diagnose what might be acting up.

 Home again by 6pm... It was a long hot ride but very fun. Wonderful to see so many lovely people. Wonderful to get some sand under our toes. Most wonderful to get to spend some time relaxing together.