Friday, December 30, 2011

Happy belated 30th Charlie!! Officially 2 and a half years old!


Charlie is 2 and a half years old! We were not supposed to see this day, but here we are! We thought we'd never even hear the words mama or papa. SMA affects ALL of the muscles...the tongue (for speaking) the lungs, the limbs, the esophagus (Charlie's on Zantac for this) and can cause facial paralysis. Also, Charlie's jaw needs to be exercised regularly because she is constantly clenching it closed; she does this to protect herself from accidentally swallowing her secretions which she knows she'll choke on if she does. We never take Charlie's smiles, leg wiggles (dancing) or gentle caresses (the BEST feeling in the world!) for granted. AND, Charlie is SINGING now! She learns new songs within hours and hums the tune perfectly over and over, it's really quite brilliant, and nothing short of amazing.
For this post, I'm putting up some of my favorite pictures and videos of Charlie from the past 6 months.



Smiles at grandmas house.
Christmas Jammies.
Cuddles with mama.
On our way to meet Santa.
Still smiling and thumb sucking with her new hand splints.
Baby cuddles.
Dancing with mama.
Cuddles with papa.
Brave girl.
Stocking stuffer.
My little elf.
Snuggles.
Toy Story (thanks Starlight Foundation!) with bf Dani.
Aunty Fatima brought this back from India for Charlie.





video video
video video

Thursday, December 15, 2011

Reflection.

(Charlie, 29 months, not too happy to meet Santa)



















It's been a strange couple of weeks. It's the two year anniversary of Charlie's diagnosis and it's caused me to reflect...

On December 22nd 2009 we took Charlie for her 6 month shots on her 6 month birthday. That's when we asked our doctor the question that would eventually get an answer that would change our lives as we knew them, forever..."shouldn't Charlie be bearing more weight on her legs right now...is this normal?" Our doctors answer was, "Yes, this isn't right." And she scheduled us an appointment with a pediatrician for 2 weeks later. But we couldn't wait, and on Christmas day 2009, we brought Charlie to BC Children's hospital to get some answers to the questions we'd been having nightmares about for the 3 days since her 6 month appointment.

Of course, we knew something was up before that appointment. Charlie was beginning to slump and 'get lazy'. It was a discussion in our house more than once. I remember Matt running out and buying Charlie a jolly jumper after I told him I had went to my friend Christie's house and she had put her daughter the same age in one, and she jumped around like a bucking bronco in it. We put Charlie in hers and she just dangled there, like a marionette doll begging to be manipulated. I put Sesame street on my Ipod, just above her head, and she would force her heavy head up to get a peak at it. We convinced ourselves she just had a mellow demeanor and had become lazy. She had recently fallen in love with her thumb during tummy time and would pop it in her mouth whenever she could, it seemed to be the only thing she ever wanted to do...that's still true to this day!
Matt recently told me of how when he went Christmas shopping shortly before Charlie's diagnosis he was stopped in his tracks in front of the children's play area watching all the kids scream and run around. He said this is when he thought, "something is REALLY wrong with Charlie."

That night in the hospital, on Christmas day, they took blood from Charlie. That is when we realized that whatever was going on with Charlie was serious. Matt was holding her tiny hand and she cried when they took the blood, but she didn't even flinch. And when they checked her reflexes with the reflex hammer, nothing. We were sent home after a few hours and told that they were running tests and to bring her back if she got a cold. I remember spending hours researching what it might be. I remember feeling sorry for myself. I remember NEVER once though thinking that it was 'terminal' or untreatable. And I remember going to bed with Charlie one night, Matt was at work, and this intense fear rushed through my body...it felt like a flash flood of anxiety and panic and shear terror, and I seriously knelt by the bed, my hands in praying position, staring at a sleeping Charlie, crying so hard, begging god or whoever was listening, to please make her OK. The next day or so she got a cold and it was back to Children's hospital. 4 days later they told us their suspicions, and about a week after that they confirmed them.

The worst part of this experience would have to be the 3 days after we were told, "we believe your daughter has SMA type 1...she probably only has a few months left to live, we can't be sure though..." We went home and and walked around like zombies. Just crying every time we looked at her or each other. People dropped by and you could see in there faces that they knew there was nothing they could do or say to help, they could just be there. I will never forget laying down next to Charlie in bed, waking up every 1/2 hr and putting my hand on her stomach to see if she was still breathing (I still do this) and breathing a sigh of relief every time it was confirmed that she was. I remember waking up afraid of Charlie and running out to Matt in the living room crying so hard I couldn't catch my breath, because I felt guilty that I didn't want to sleep next to her because I was afraid I'd wake up next to her cold, lifeless body, and it scared the shit out of me...I begged him to please let me sleep on the couch (where the guilt of my thoughts kept me awake anyway). I had to actually ask the pediatrician, "How will she die? Will it be in her sleep? Will I walk out of the room one day, come back and she'll be dead?" As I asked him these questions I would hear them echoing in my head and think, "Is this fu#king for real right now? Really?! Did I just ask someone what my baby dying will look like? Holy shit."

Days became weeks, weeks became months, and against all odds, and MIRACULOUSLY, months became years. And here we are. We have spent more time in the hospital or at specialist appointments in these past two years than most people will in a lifetime. We have nursed our daughter back to health after being told many, many, times, "she's really sick, anything could happen at this point, one minute she can seem fine, and the next she's gone." And, "How far are you willing to go to keep her alive if we need to intervene?". We have changed g-tubes, sat through gj tube changes in radiology, learned to suction and tube feed, given chest physio, etc. We are Charlie's number one advocates, making sure she gets what she needs (we also work with A LOT of great people and resources who work so unbelievably hard for Charlie!) I have become more comfortable and confident in my role as Charlie's mother but I still get daily attacks of, "Oh my god she's going to die I can't handle this!" I can be out with friends laughing, and it will hit me like a lightening bolt, and for about a minute or so I'll be frozen with fear, I can't catch my breath, and I feel like I'm going to drop to the ground...and then it goes away.

We are not at all who we used to be, and never will be again. Situations like these change you forever. There definately is a 'silver lining' in all of this though...I can't always see it, but when I do it reminds me that Charlie is perfect EXACTLY as Charlie is...the sweetest, most gentle and innocent little life changer I've ever met.
It has almost been 2 years since Charlie's SMA diagnosis and she's still here. I have a little girl with one of the worst prognosis' you can get in life, yet she has the most positive, easy going demeanor I've ever seen in ANYBODY, ever. How is that even possible?!

Merry 3RD!! Christmas to my little angel girl Charlie. You are loved so much by so many, keep fighting.
xo
-the luckiest mama ever.

Thursday, November 24, 2011

A Christmas Story.

(Mama and Char, 29 months, at Canuck Place)



















Again I've let too much time go between full posts. And again it's like the dam that usually slowly processes and releases information into the little reservoir where all things Charlie are stored, has collapsed and is full force spewing out my thoughts and emotions faster than I can even compute them. But I'll try...(this post was done over several days)

As I sit here home alone, drinking my peppermint tea with honey and waiting for my laundry to dry so I can fold it and go to bed, I'm feeling ripped off and lucky, all at the same time. Charlie is in Canuck Place right now. She's been there since Wednesday and comes home Sunday. We had booked a week stay there when I was scheduled for surgery, which I luckily didn't have to get, but we decided to put Charlie in for 4 days anyway because she has a lot of fun there. And, since we have officially entered hibernation season, we'll take any 'safe' excitement we can get! Anyway, as usual all of the staff have made us feel at home and Charlie is having a blast, but I can't help but focus on the kids that don't have much time left. Last night a boy who is obviously very, very, ill smiled at Charlie when he was being pushed by her in his wheelchair. Something my angel was doing caught another angels eye and made him happy for a minute. And, despite everything else that was going on with him, he could STILL smile and appreciate a moment. How do these kids do it?! After the boy was wheeled away I forced my bottom lip out in an attempt to blow upwards and into my eyes to dry up the tears that were beginning to form. I honestly feel that ever since Charlie was diagnosed I walk around surrounded by 'moments' and 'life lessons', trying to find meaning in everything and every moment with Charlie, and it's a mixed blessing. On one hand I feel fortunate that I can really appreciate and take in a moment, but on the other hand, sometimes I really don't want to think and ignorance is bliss...but my brain never shuts down! I'm sure even Sylvia Browne wishes she could turn off the paranormal sometimes...no matter how many times it got her on the Montel Williams show!

After I left Canuck Place, no amount of eye blowing was gonna stop the flood. I cried on my drive to work, got it together for a bit, and then again when I got into work. My co-worker was smart enough to know it wasn't a good idea to hug me or I probably wouldn't be able to reign in the tears again, which I fortunately did pretty quickly, and I kept it together for the remainder of my shift. But, when I got off work I called Matt from the car to tell him how scared I was feeling and how I just know that I won't be able to handle Charlie dying and how I felt so sad about all the other little kids who were sick. We talked and he told me how the boy that smiled at Charlie was really sick and had made a wish to have Christmas early (I'm assuming because it doesn't look like he'll make it until Christmas this year) What Matt told me next blew my mind...he told me that they were bringing in snow machines, Santa and his elves, loads of his family, presents, and Christmas dinner...just doing their best to make the perfect December 25th happen for the boy. And I broke down again. It's situations like these that double the size of your heart while simultaneously breaking it in half. So beautiful and so sad all at the same time. Sure enough when I went into Canuck Place the next day, It was snowing. And, when I left several hours later, the men responsible for the snow were still at it. It was so cold outside yet these men braved the elements to make sure the boy had his white Christmas. Just. so. amazing.

I have so much more to say, but I'll say it in another post. Right now, I just want to be thankful for what I DO have.
Bless you little boy. Thank you for the moment.




Tuesday, November 22, 2011

Happy 29 month birthday Charlie!!

(Charlie and mama cuddles)



















Happy 29 month birthday to my beautiful Charlie. I love, love, love you...never leave me sweet pea! xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxox

Monday, November 14, 2011

F*ck you SMA!

(Charlie, the bravest girl I know, 28 months)


















Charlie just got new splints for her hands. It was suggested that we put them on her overnight. But, she's a thumbsucker and she'd never have it. So, we put them on her during the day instead. And, of course, it's just one more thing my angel puts up with and excepts. Problem is, I can't. I took this picture after I prepared Charlie for bed the other night. I stared at her with tears in my eyes, RAGING inside my head. This is how she sleeps EVERY night...splints (hand ones during the day), breathing machine, suction machine, feed pump, and a leg skirt to avoid her legs flopping open froggy style which can cause hip problems. Look closely. She is STILL smiling through it all. I look at this picture and I think to myself, why?! F*ck you SMA!

Friday, November 4, 2011

Happy (belated) Halloween!

I love, I mean err ummm, Charlie loves to play dress up. Here are just a few of her Halloween looks this year...



My little hunny bunny



My little Peg Bundy


My little barbie girl



My little senor-ita




Saturday, October 22, 2011

Happy 28 month birthday Charlie!!

(Charlie, pretty in pink, 27 months)




















Growing up my mom called me 'Emma Clutz'. She said I didn't fall down the stairs, I tripped up them. If there was a piece of string in my path, it would drop me to my knees. To this day I don't exactly consider myself graceful. I've got weak ankles, a horrible sense of balance, I'm covered in unexplained bruises on any given day, and I look like an inebriated 5 year old playing dress up in my moms clothes when I wear high heals.
Being a clumsy person isn't exactly conducive with taking care of a totally dependant 2 year old that has zero room for error in her care, and that is FRIGHTENING.

I bring this up because I've had three nightmares in the past week that highlight the need for nothing less than perfectly executed care when it comes to Charlie's needs. It really is life or death. Has your baby ever fallen off the bed when you turned around for just a second? Well, that just. can't. happen. with Charlie. I dreamed that I was passing Charlie to Matt and she slipped through his arms and I screamed "Noooooooooooo" as she hit the ground like a 30 pound bag of sand. I woke up breathless and sweating and quickly reached over and put my hand on Char's belly to make sure she was breathing. After I got back to sleep I dreamed that I was at a party with friends and family...I had put Charlie down for a nap, and when I came to check on her there was a little girl sitting on the couch holding her all clumsily. It was a perspective I'd never really had of Charlie...she looked like a big flaccid doll in that little girls arms...it made me so sad. Then the little girl went to position her thumbs under Charlie's armpits in an attempt to sit Charlie up to face her...that's when my sadness turned to fear and hysteria...Charlie can't do that I thought, she needs major head support...I yelled "STOP" but it came out in slow motion, and too late. I saw Charlie's head slam backwards and that's when I jolted awake again. I grabbed my Iphone and wrote down my dreams in the notes section because I have a feeling these nightmares are affecting my days. I jolted awake again last night when I dreamed that one of Char's nurses put her suction too far down her throat and she wouldn't stop throwing up. I was freaking out because it is so dangerous for her to get sick because she can't swallow and is at high risk for aspirating because of it.

So yeah, stressful stuff. And I'm beginning to think that it's those dreams and thoughts that cause me to get stressed out, and have made me sick. I'm happy to say that my cyst disappeared and I won't need surgery anymore. But, I'm still losing weight and feeling sickly which I'm getting looked at, but I wouldn't be surprised if it was all stress related. How can someone have constant nightmares and it not affect their days? So, I'm currently working on a stress reduction plan.

We took Charlie for her bi annual check up with her respiratory therapists and her neuromuscular team this past Tuesday. They say she is doing well, and of course that's great news...but I notice that I get super bummed after these appointments. They are a reminder of how 'different' Charlie really is. We discuss cutting tendons, future back surgeries, being bipap (breathing machine) dependant eventually... It just drills it all home. I notice that I just sort of plug my ears, fidget, and lalalalalala it all out and Matt is always super immersed in talking to the doctors and leaves feeling empowered with a pocket full of knowledge...I'm glad one of us does!

Charlie is 28 months today! I said 28 months!! We're celebrating with a Max and Ruby marathon. Pretty nice little Saturday I'd say!
Happy Birthday baby girl!
xoxoxoxoxoxoxoxo


Friday, September 30, 2011

Overdue.

(Summer lovin' with Char, August 2011)




















Well it's time...time for me to attempt to sum up the past 5 months in a single blog post. Actually, I think I'll call this 'Part 1' for now...otherwise I fear Blogger will stop me a quarter of the way through and say, 'You've exceeded your daily limit of babbling, we recommend you save and continue at a later date.' Haha.

Hmmm, where to start...
Matt and I are managing our separation as well as can be expected. There have been some rough days, but they seem to get fewer and further between as more time goes by. I would even go so far as to say that we are actually becoming better friends as of lately. It's really hard on both of us to be away from Charlie though but we've been pretty good at sharing our individual 'days' that we have with Charlie, with the other, so that helps a lot. It's such a panicky feeling to wake up in the middle of the night, used to repositioning and checking on Charlie, only to see that she's not there. This has made me cry on more than one occasion. Sometimes I'll wake up without her and my head goes to dark places and I think, "this is what it will feel like forever someday, this exact feeling" and then I get DESPERATE to see her and harass Matt to please let me come over and see her asap, and he always obliges. He understands because he feels the same and does the same with me.

This transition into single parentdom has been awkward to say the least. In the beginning, and still a little now, I felt like two different people. One of me is a newly single lady who is trying to keep busy and find a new social life and possibly date, the other (and obviously more important) is the mother of a terminally ill child. I was/am having a difficult time finding a balance between the two. Obviously being out/dating is a nice distraction from some pretty heavy stuff going on in my life, but I just feel so guilty when I'm happy or distracted. I've never been a single mom before, even to a 'regular' child, so I don't know the protocol, and I'm putting a lot of pressure on myself to do it 'right' whatever that even means?! I guess what I'm trying to say is that I always want Charlie to be my number 1 and I feel conflicted/guilty when I feel happy being out with my friends. It's all just so foreign, but I guess I'll figure it out.

Charlie is cuter than ever! She is so musical! She hums/sings along in perfect tune to all of her favorite shows theme songs. It actually shocked me the first time I heard her sing "1-2-3-4, 1234 squaaare". I looked at Matt perplexed, "Ummm, did you just hear what I heard?!" He's like, "Oh yeah, she's been singing that for weeks" like it was no big thing. I've since noticed that she does that with all of her shows and a lot of my music as well, she knows when the chorus is coming! She's just a little parrot lately too, after we speak, she repeats. Of course it in her own special way, she can't really enunciate, but she tries her best. She's just brilliant!

Since Charlie's one 'mild' 13 day hospitalization for a cold, she has been healthy as a horse. I actually got sick again about a week after she was home and she managed to avoid getting it. Phew! Lately though, Matt and I have that impending doom feeling...we know Winter is coming and we know what that entails...cabin fever, hospitalizations, and close calls. Seriously just fu#king bums me right the fu#k out. AHHHHHHH!!!!!

To top it all off, and to continue being a Debby Downer, I have been having my own health problems as well lately. A few weeks ago I woke up bleeding when I wasn't supposed to be. Soon after I started getting insane cramping, which quickly became unmanageable. I tried to make Charlie's morning milk, but I couldn't stand and was nauseous and thought I would faint. I called Matt to come and watch Charlie and my friend Christie raced over to take me to the hospital (I LOVE that girl, such an amazing person!!). When they got to my house I was in too much pain to go to the hospital...just rolling around moaning like a sick walrus on my bed (in front of Charlie) waiting for the handful of meds I just took to kick in. About 20 minutes later they did and Christie was able to drag me across the street (yes, the hospital is just across the street from me) to emergency. I got checked out by a doctor (NOT a nice one at that) who ordered an ultrasound for the next day. I got the results 3 days later and was told that they found a cyst the size of a tennis ball and that they wanted to do tumour marker testing on me and a biopsy of my uterus and then set up surgery for the cyst. Awesome. All I could think about is "cancer mom takes care of terminally ill baby" I know, such positive thinking! Anyway, I realize cysts are common among women but when you've received the worst news a person/parent will EVER get in their life, sometimes your glass is half empty and you become a bit more skeptical. I remember right before Charlie was diagnosed I was googling "floppy baby syndrome" there were seriously about 2000 reasons/causes of it...I imagined every single one of them being a possibility, EVERY single one, EXCEPT this horrible one called "Werdnig Hoffman disease". "Nope, don't need to bother researching that one any further...that's way too serious, that's terminal, that's not what Charlie has, I know that for sure." But, that's what Charlie had/has. It's another name for SMA type 1. I SERIOUSLY considered 1,999 other sicknesses/diseases but not that one.
So, I've learned my lesson. Expect the unexpected.

Two days after I got my ultrasound results I was to take part in the Canuck Place Adventure Challenge. After talking to a few doctors I was told that rupture of the cyst with strenuous exercise is a possibility, and would be extremely painful if it happened. I did it anyway...sort of. I kayaked and rode my bike about 8k before I started feeling pain in my lower back and seeing black spots. I told my friends I didn't think I should go any further and they took me to the paramedics where I spent the rest of my day. I cried a lot. It was the first time I couldn't finish a race and I felt like I failed. But I know it was for the best. Through my friends, family, and my job, I still raised about 4500$ for Canuck Place, and that's the most important part.

Still, I haven't been feeling like myself. I've been tired, nauseous, losing weight, and VERY moody. 3 days ago I left a friends bday because I was feeling really awful, I came home and crawled into bed where I shivered my nauseous night away. I woke up in the morning to drag myself to Shopper's to get some Gravol and on the way back my legs just gave out and I fell out of my shoes and into traffic and sprained my ankle BAD. I immediately made a doctors appointment to nag her to figure out what's going on with me and get my ankle looked at. It was someone filling in for my doctor and she told me she thought that my body was making too much estrogen and it was making me feel sick and emotional and sent me for an x-ray because my foot now looked like Shrek's. She also said, that it would actually be in my best interest if the cyst burst "it will be extremely painful for a while, but then it will be over." Hmmm Comforting. My ankle was just sprained. I went home called Matt and told him what was happening and that I couldn't take care of Charlie like this but that I was really craving her and wanted to be with her and was scared. He invited me over and took care of both of us. At 3 am I awoke so sick, I yelled for Matt, he came in and then went to get me a barf bucket. While he was gone I went to sit on the toilet and I guess I fainted and fell face first onto the bathroom floor. I woke up with Matt calling my name asking me if i was OK and I told him to call an ambulance. I went to the ER where a nice doctor got me an appointment with an internal medicine specialist for next week. So, I'm a lot closer to knowing what the hell is going on with me now. It's so scary to worry that something will rupture or I will faint while holding my 30 pound daughter that can't take care of herself, and would quite possibly die if I dropped her because she has zero head control.

Things are a little more stressful in some areas, and a little LESS stressful in other areas right now. And that's to be expected. But, the most important thing is that Charlie is 27 months, healthy, and getting smarter and more talented everyday. I'm happy if she's happy.

To be continued...


Sunday, September 25, 2011

Happy belated 27 month birthday Charlie!!!

My little miracle is 27 months! I'm still trying to get myself together to do a proper post. In the meantime, here's a little vid of my special girl.

Keep making mama's heart beat Char. xo



video

Friday, August 26, 2011

Canuck Place Adventure Challenge

(Charlie, last September, rooting me on at the Adventure Challenge in Deep Cove, North Vancouver.)


















Hey Everyone!

Just wanted to let you know that it's that time of year again...time for me to run, kayak, and mountain bike for Canuck Place Children's Hospice! If you can, please sponsor me at:
I'm under Charlie's Angels/Cherie Ehlert-Cox

Thanks!!

Monday, August 22, 2011

Happy 26 month Birthday Charlie!

(Mama and Char, almost 26 months, in the park)



















I keep planning to sit down and write. But life is busier than it once was, and times have changed. In the past few months Matt and I have separated, I found a new apartment, we finished renovating our condo we shared and put it up for sale, I got a new job, and we've been learning how to 'share' Charlie. I think we're beginning to get a grasp on our new lives, but it hasn't come easy. It's hard to be without Charlie, really hard. But, at least we both know that we're equally madly in love with her, and that she's in good hands when she's with the other parent.

As for Charlie's summer cold...she was in the hospital for 13 days, the first few bad, but otherwise her most mild/well fought off cold yet! Her ICU doctor told us that she "can't remember the last time a child with SMA type 1 handled a cold that well, and with out antibiotics...she handled it very, very well." That was amazing to hear! It was an especially difficult hospital stay for Matt and I to deal with though because Charlie got sick one day after Matt had left to visit his family in England. He felt helpless being away, and I felt overwhelmed and afraid that I may have to make some serious decisions on my own. But luckily everything worked out, and Charlie was home after less than 2 weeks, her shortest hospital stay yet.

Yesterday morning I shot up out of bed and instantly started BAWLING. I'd been having nightmares all morning that Charlie's nurses were dunking her head when bathing her while I was yelling, "No, no, you can't do that! She can't cough it up, STOP!" In scene 2 I was with my friend Lindsay and some others that I can't recall...Lindsay was holding Charlie and she started drooling...and her eyes were going red, it was obvious she couldn't breath and was choking (a look we see on a regular basis) Lindsay put her down frantically while I clumsily tried to suction her mouth...I was shaking. After I cleared her airway I fell backwards and started crying out uncontrollably, "I can't do this anymore guys, I can't do this!!" That's when I woke up, had a flashback of the entire dream within 10 seconds, felt guilty that I felt that/said that, and started BAWLING uncontrollably in real life. It was exhausting and set the somber tone for my day. BUT, I must admit, I had PMS, which ALWAYS makes the difficult to deal with, IMPOSSIBLE to deal with.

I'm tired. I'll be back. There's so much more to purge, but the energy is not there yet. To all of you who emailed me to ask how Charlie was, thank you!! It really is a great feeling to know that you care and you wait patiently to hear how she is. And rest assured, she's still fighting, and getting more and more beautiful and SMART, with every passing day!

Happy birthday beautiful!

Thursday, July 28, 2011

Back soon.

I'll update very soon, I swear! Charlie just got home on Monday after 13 days in the hospital due to a cold she caught from me...in JULY! Leave it to me to think we're scott free come summer! Anyway, I'm super duper beat and just glad to have my girl home, I'll post what's been going on in the next few days!

Happy belated 25 month birthday Charlie!

25 reasons I love her so...