Tuesday, June 29, 2010

You are loved.

(Charlie, 1 year old!)



















I'm very sleepy, but I just wanted to post a link to the new video of Charlie's birthday party. It was a perfect day, and although it rained the first hour or so, it didn't scare anyone away, and everyone showed up happy and ready to party! Other than the day Charlie was born, it was the best day of my life. And I'm positive Matt would agree with me.
Thank you so much to all of my friends and family who made the day so special and memorable. You continue to amaze us with your compassion, empathy, love and generosity.
We're blessed to have you in our lives!
Love, love, love you!

Here is the link to the bday video:

Tuesday, June 22, 2010

Happy 1st Birthday Charlie-Anne!

(Charlie on her 1st birthday)




















Well, we made it...she made it...to one, one year old! And how did we celebrate it? We started it off with a bang...literally. Well actually, a series of four shots...in the arm, for measles and rubella and whatever other types of illness' that could pose a risk to Charlie and ruin her future. Almost seems ridiculous to put her through all of that just to avoid the small chance that she may contract something so rare, when it's the common cold, lurking in every room and around every corner, that's the real enemy. But, we did it anyway, because let's just say that we feel rare isn't as rare to us as it is to most people. We bought a lottery ticket this past Friday because the jackpot was 50 million, hoping that our 'luck' might just work the other way around...but nope, not this time.

After Charlie's shots we went grocery shopping and dad and Char picked out a birthday balloon. Charlie was more than pleased with this gift, as were we when we got to the car and realized Charlie had just shoplifted for her first time...forgetting to hand it over to us at the till to ring it through! Oops! Our little criminal. So cute! My friend Sarah came over with her super sweet 3 year old daughter Ella after and I took a few pics of Charlie and Ella in some party hats. Then we went to meet our friend Dana and Kim's new baby boy Beckett and their almost 3 year old son Nolan, and drank some champy and ate cake to celebrate the birthday(s). All and all a pretty lovely, low key first birthday. We will do the real celebrating this Sunday at Charlie's big birthday bash.

For a while, I honestly never thought we'd make it here. To one year old. It really is a very special milestone to us. When Charlie was first diagnosed we were told she probably only had a few months to live because she had spiraled down so fast between 4 to 6 months of age. I remember thinking I was just going to suck the life out of the next few months and never take one second for granted and just inhale every second with Charlie and make it last forever and ever. But the second one tries to stop time, it slips through your fingers faster than ever. It seems to actually speed up, running ahead of you, just beyond your grasp. So, I stopped doing that and just decided to let things be, and to let time pass. I'm not sure if I just started pretending it wasn't happening or if I just got used to what was happening. Either way, it works much better for me. I've been planning this birthday for over two months, knowing that it would be a miracle if we made it here, but expecting nothing less at the same time. Charlie is our angel. Way stronger than she looks, and as I've told the doctors, "not ready to go anytime soon."

Sometimes I pick Charlie up and I take her to the full length mirror in our room to get a good look at the two of us cuddling (I've noticed Matt doing this as well). Lately when I do this I'm almost always shocked at how big she's gotten and at how much she's changed...she's not a baby anymore...she's a little girl! You know when you look at a friends baby/childhood pictures and you can totally see them in the little kid you see in the picture? Well, that's what I can see in Charlie now, but the other way around. I can see her as an 8 year old, and a 12 year old. It's amazing! But, if I think about it too much it can really affect me and bum me out.

I'm/we're so lucky to have her. A real little doll, a real little princess, a real little lady. A really BIG blessing and a life changer! I love you Charlie! Happy 1st birthday! Love, Mama. xoxoxoxoxoxoxo


Saturday, June 19, 2010

Loveable.

(Charlie almost a year old)


















Charlie turns 1 in two days! When she was initially diagnosed we were told she probably only had a few months to live, now six months later, we're getting ready to celebrate her first birthday! Matt and I are so grateful she came into our lives, SMA or not...she's a spectacular little lady!

I've made a video/slideshow with 100 reasons why we love Charlie so much:

Can't wait to celebrate next Sunday!

Wednesday, June 16, 2010

Happy Days.

(Charlie, 11 1/2 months old at Aunty Anna's)














So, if anyone read my last two posts back to back, I can imagine you may have been thinking, "This girls up and down more than an elementary school teeter totter." And I am. My moods change from one minute to the next. And I'm OK with that...maybe Matt's not...but I am.;) Hospitals and time (too much of it on my hands) seem to affect my moods the worst, if I keep busy and avoid hospitals I'm pretty high functioning, but throw in one or the other, (or both!) and I lose my mind. I mean really, on a good day, like today, I think, "Who cares if I feed Char through a g-tube and have to position her a certain way and suction saliva out of her mouth?" I mean, the more Matt and I do it, the more it feels like no big deal...it's our equivalent to cutting the crusts off of a peanut butter sandwich and chasing after a hyper active child. You people do those things, and we do these. Same, same. I know, not really...but, that's me on a good day.

We were only in the hospital 2 nights. Charlie didn't like the bipap mask, but I have faith that she'll learn to. I think it had a lot to do with the nurses and doctors thinking they should sneak it on her after she fell asleep at night (which is never before 11pm) so, when they would slip it on, air blowing in her face, Charlie would lose it and fuss and cry so loudly that she'd wake the other kids up in the ICU, making me feel horrible. It wasn't the nurses faults, they were just doing what the ICU doctor told them to. After hearing a little boy next door who had a tracheotomy, wake up scared from Charlie's howling saying, "Mommy, what's all the ruckus?" on the first night, I suggested we only try it once the next night, which we did and she lasted two hours with it on her face, which I was happy with. I think one of Charlie's biggest concerns was the fact that she couldn't manipulate her thumb enough to effectively pop it in her mouth...and she absolutely LOVES her thumb!

After much trepidation, Matt and I decided to try and hook Charlie up to her electric, rate and dose regulated feeding machine last night. And oh my god, all this time there was actually a blessing in disguise tossed in the corner of Charlie's room. We were initially apprehensive about using it because we just felt like it was one more nail in Charlie's coffin, one more reminder she was sick, one more piece of medical equipment, but man it does a good job at helping us help Charlie. We can sleep nine hours straight with that thing! Kids with SMA need to eat every 3 or 4 hours, so we were always waking up, even if she was still sleeping, to g-tube feed her....and after the feed she needs to be elevated for at least 15 minutes, so needless to say, it really messed with our sleep (and hers). Now, we can hook this feed pump into her g-tube and it will slowly deliver her two feeds over several hours. We did this last night and it worked! A full sleep was had by all! We're going to try to be a little more receptive to any new medical equipment that's suggested to us, who knows, it just might help!

I have been overwhelmed with the response from people regarding sponsoring me for the Adventure Challenge. So far I've raised (with your help!!) 3100$!! I am in second place for bringing in the most donations for Canuck Place, and I plan on coming in first (for donations, not the race, ha ha!) No, I'm really going to try my best and hope to finish it at least in the top three. It's funny, I feel like a bad episode of Oprah..."Woman has a sick daughter, decides to run a marathon... exceeds all of her own expectations, and sees what can happen when she reaches out to her community, and everybody lives happily ever after." But whatever, I'm just glad I'm channeling this pain in a mostly healthy manner. Thanks for sponsoring me friends! Those of you who haven't yet, if you can, please do!


Thursday, June 10, 2010

Adventure Challenge

(Charlie and mommy 11 months old)















OK! I'm officially nuts! I have signed up to do this 'Adventure Challenge' with my friend Melissa...running, biking, and kayaking! Please sponsor me! And tell your friends too! All donations go to Canuck Place, the children's hospice...they have been an amazing resource for Charlie and our family, and families like ours. Find us under 'Cherie Cox' or our team name is 'Charlie's Angels'. Thank You!

Please follow this link to sponsor me:


AND, Pray for me! I've never done anything like this...I'm looking forward to this personal challenge!

Thank you ALL so much...and Charlie thanks you too!

Wednesday, June 9, 2010

Roller Coaster.

(Charlie, 11 1/2 months old)



















I am writing this post from Charlie's bedside in the ICU at the Children's Hospital, as she sleeps...finally. We came here last minute to start Charlie on, and learn how to administer, bipap (to help her breathe). We will be here anywhere from 3 days to a week. We were trying to avoid coming here because we fear that she has more of an opportunity to catch a cold, but luckily it's mid June and we've been assured that all of the children are post operative and don't have any communicable illness'.

In the span of a week we have gone from using no special apparatus' apart from Charlie's g-tube syringe feedings, to four apparatus' including the g-tube. We will now be using a suction machine to collect Charlie's secretions so that she doesn't swallow them and choke, as well as a continuous feed machine that we will use to feed Charlie slowly over time rather than all at once like we do with the syringe feedings (this helps prevent against her possibly vomiting and asphyxiating on it from ingesting too much too fast) it uses a special IV type bag that attaches to either her crib or stroller, and we will also be using the bipap in the morning and at night to get Charlie used to using it before she needs to rely on it.

Holy moly it's been a roller coaster ride of emotions this week, yet I didn't even really notice them until today when they finally broke through the surface in the form of tears. Lots of them. Over and over again. In the hallway at the hospital. In the car when I had to pull over and call my friend Christie to listen to me and talk me down, in front of the nurse while she was putting on Charlie's bipap mask, and in the hall of the hospital when my friends Christine and Nick came to drop something off for me. Matt asked me this week, "Cher, do you think we are in denial about what's really going on with Charlie?" I thought about it and sighed and said, "Well yeah, but if we really faced it, we'd never make it through the day. We'd stay in bed crying and neglect her because we'd get too caught up in her diagnosis...and how is that any good for her, or us?" I said, "I think it works this way on purpose, a little denial is a good thing and it goes a long way...it's self preservation." And then we checked into Children's hospital today. And almost immediately I ate my words. After virtually cruising along this past two months with no hospital visits since her g-tube surgery, besides her daytime appointments with the respirologists and neuromuscular clinic, I was shaken awake...HARD...like I'm talking REALLY HARD...like hard enough to cause permanent damage.

After crying the first time today, Matt tried to comfort me and make me feel better by saying, "Aww Cherie don't worry, she's OK, she's not sick or anything, we're just here to get her on bipap." But, it didn't console me at all..."Matt, she's dying...you can't really get any sicker than dying. Whether she's only in here to get used to a machine or she caught a cold...it's all because she's dying." I defeatedly replied. And that's how I feel today. It feels like we are just trying to soften the blow for Charlie, for the inevitable. And that's how I feel when I come here..surrounded by all of these sick little angels. It's just so sad and so senseless.

Remember when I met that woman in the gift shop the last time we were here? Charlie was getting her g-tube surgery and her daughter had brain cancer with a 50% survival rate and was getting surgery as well? Well, we've since kept in touch and are facebook friends, but with everything that's been going on with both of us , we've never reconnected. Shortly after we checked in today I got a facebook message from her asking if we were in the ICU because she had sworn she'd seen Matt and that her daughter was in surgery today and that she would be staying in the ICU for several days as well. I replied, "Yes! it's us!" She said she felt we were living synchronistic lives...and I could not agree more! Our daughters are only 2 weeks apart, our husbands are both Matt's, We are both celebrating our 2 year wedding anniversary's around the same time (mine and Matt's is actually tonight) our daughters both have very serious illness', we came together 2 months ago by accident when our girls were getting surgery, and here we are again...meeting in the ICU. I really believe that some people definitely come into your life for a reason.

I'm going to try to get some sleep now. Matt and I are trading off, I sleep days, he sleeps nights. I'm a light sleeper so the beeps of the machines and the lights from the nurses station make it nearly impossible for me to sleep...but i'm gonna try.


Friday, June 4, 2010

Reality Bites.

(Charlie, 11 months old)




















After I finished my last post I called Matt in the room to give it a read before I posted it, as I usually do (especially when it's particularly sensitive material). Matt read over it and when he was finished he said, "it's good." in a tone I knew meant, "ask me again, pry...pull it out of me, I need you to beg me to tell you why I don't like it, because I don't want to hurt your feelings." So I did. "What Matt? What's the issue? Be honest." And that's when he finally admitted that he thought it sounded too self defeating. Which I replied to with, "Umm, it's a blog/journal I write about our terminally ill daughter, I'm not sure if people reading it expect to read about sunshine and lollipops and happy days." This blog is for me first and foremost, and I'm always going to be honest...this is not fiction, there might not be a happy ending. Purging my feelings and the weeks events help me move on and move forward and be better able to handle what's coming at us next. After we discussed it and I took out a little of the super sensitive info, Matt and I realized that we both just have two different ways of dealing with heavy issues. He realizes that I am a 'wear my heart on my sleeve' kind of person and I realize he is more private (like the majority of people I think) and this is what I need, but I have to take his feelings into consideration as well...which is why he'll always be my proof-reader.

We've had a few appointments and changes with Charlie lately. We saw her pediatrician and we are now administering a new medication to Charlie that dries her mouth out so she produces less secretions so she doesn't choke on them. Who would have known that such a medication even existed? She is also getting twice weekly suppositories because the poor girl doesn't have the muscles to poop properly. We went to a place called The Center For Ability to meet with a stroller rep because Charlie is going to need a specialized stroller soon that can hold all of her equipment and fully recline, while providing proper support for her head...it's priced at about 6500$ with all the special attachments she'll need. Luckily, we'll be partially funded by the CFA as well as the Variety Club and other such organizations, and we'll wait and see what we owe. It was another one of those 'holy shit this is our reality' appointments. We found out that we are going to need a van to transport Charlie soon, and that we may not even be able to take her in the car/van eventually because she'll need to always be lying flat and even if we have tie down straps for the chair/stroller, apparently it may be the law that you can only be reclined a little. So, we'll have to figure that out. We were very upset and emotional as we were hearing all of this information. Just overwhelmed. And then guilty because we felt angry with ourselves for being upset by these changes because the only other way to avoid experiencing these changes in Charlie is if she dies. And of course, that's so much worse to us. Ahhhhh! Stupid. Just stupid.

At the stroller appointment we were also given some toys called "switch toys" for Charlie. They are toys that are adapted for children with limited muscle control to play with. There is a cord attached to the toy and then to a large circle/pad that requires minimal pressure from the child to make the toy work. We borrowed a stuffed penguin that moves around and quacks-I didn't know that penguins quacked?? And another little toy that is sort of a dance floor with two little prince and princess figurines that dance around together to the song "Born Free" I almost peed my pants laughing when Matt joked, "Sure, why not make a toy for a dying child who'll never walk that consists of two people dancing to the song Born Free ? We have a twisted sense of humour...but you kind of have to.

...I took a 6 hour break from writing this post today and in that time Matt and I went to see Charlie's respirologist and then over to Canuck Place to meet the Fisher family who also has a daughter with type 1 SMA. We were once again caught off guard at the doctors because he informed us that Charlie's disease is in fact progressing. He told us that she is becoming unable to swallow her saliva so it is pooling in her mouth and if we don't start using her suction machine, she could asphyxiate. He also told us that the medication we were prescribed doesn't usually work and doesn't come without some serious side effects, one of which we noticed was instant dry mouth and cracked lips on Charlie this afternoon, after only using it twice. So, we're done with that. We discussed bipap (breathing machine) again with the doctor, saying we want to start her on it asap, and we were sent home with an oximeter machine to monitor Charlie with this weekend to see how she's sleeping and how well she is managing with her breathing, and then we'll take it from there. It was nice to finally meet the Fishers and meet someone who knew what we were going through. They were very kind and showed us all of the procedures/therapies they do with their daughter Shira on a daily basis...which was scary and overwhelming for me, but empowering for Matt...he feels optimistic and in control when he can see around the corner. We left mentally exhausted from our day, but more confident in what we are capable of...and just generally less terrified because we at least got a glimpse of whats to come instead of fearing the unknown...or pretending it wasn't going to happen to us, which is scary in itself.

It's my friend Christine's stagette tomorrow in Chilliwack. A whole bunch of us have rented a log house with a BBQ and fire pit, with the lake right beside us for a midnight dip. It will be my first overnight without Charlie. I am looking forward to it but like any mom leaving her baby for the first time, I'm also a little nervous. But, I'll be surrounded by a lot of amazing women who I'm sure won't mind when I get a little tipsy, and pull out my iPhone at any opportunity I get to show them pictures of the "cutest little girl in the world."