Tuesday, 9 February 2016

A day of answers...sort of

Do you ever feel like you are always on edge? Always waiting for the next ball to drop? That's how I feel like I've been living for the past six months. Anna had another episode at school today. I got the call around 1:30 and I rushed out of work. This has been the longest time in between episodes so I wasn't really surprised that I got the call, but it still rips my heart out each time. I think the longer the time passes between episodes I am desperately hoping that she is getting better and she is finally on the road to recovery. Then, bam, reality hits and I know we still have a long way to go.
I'll go back though to my previous post. We finally had a referral to Children's and the date couldn't come soon enough. It was originally booked for January 6, but then got pushed ahead to Dec 22. Thank goodness! I won't bore you with the time before our appointment but just give a snapshot of what it was like. Basically, she had episode after episode. She was taken by ambulance to the hospital numerous times due to severe chest pain and collapsing to the floor. She had an overnight stay in the emergency room. She spent hours curled up in a ball on our kitchen floor unable to move. She had severe sensitivity to noise. She had episodes that looked like a seizure. To sit, as her mom, and watch her go through this, was, and is, so painful.
Dec 22 finally came. We got up early excited to finally get some answers. Anna was scheduled to have an echo cardiogram, ECG and a stress test. On the way to the hospital, I told Anna that this was her day to be fixed and life would be better from here! We arrived at the hospital a couple of hours early....I was so worried we would hit traffic and be late! We spent some time walking around then sat in the food court for a while. Anna started complaining of a headache. I had noticed recently that headaches can sometimes come prior to her having an episode. I decided we should just go and sit in the Cardiac unit and wait for our appointment and I was praying that Anna would be fine. We were sitting in the waiting room, and Anna's name was called. She got up, and Matt and I followed her. The Doctor took her to weigh her and measure her. As she was standing there, she looked at me, said 'I don't feel good", and collapsed. Immediately, she had the attention of all of the medical staff. They put her on a gurney within about ten minutes. Anna does not remember any of it. They brought her to a room and gave her juice and cheese. Once she started to feel a bit better, they completed the ECG and echo cardiogram. She was too ill to do the stress test. Once everything was done, we went to talk to the cardiologist. I remember sitting there, so excited to get some answers and to finally give Anna some relief. The cardiologist sat there, looked at all of us and said, 'You're not going to like what I have to say. Anna has a chronic illness called dysautonomia and there is no treatment or no cure'. I felt like I was punched in the gut. I looked at Anna and could see pure devastation on her face. What we thought was going to be a day of treatment plans and a road to getting better, turned into a day of complete and utter disbelief and shock. We talked a bit more with the Dr and left the office. I don't think reality had hit any of us. Reality came later.

Monday, 8 February 2016

Appointments, appointments....and more appointments!

We were lucky enough to get in to see our family Dr the following week. I really had no clue as to what was going on or what to expect. He told us that Anna needed to go for another ECG and would need to wear a 24 hour holter monitor to monitor her heart. Perfect. I just wanted answers. We went for the ECG the next day and she was booked for her holter a couple of weeks later. Her ECG results came back fine. While we were waiting for her holter, Anna continued on with daily life. She still participated in sports and all other activities. Unfortunately, every time she played soccer, she was being pulled off the field because she was almost collapsing. To see a girl who, a couple of weeks prior, was playing a full game without being subbed off, to a girl who could no longer do a couple of runs up the field, was devastating, frustrating and so confusing! The time came for her to wear the holter. I was praying that she would have an episode while wearing it, but of course, she was completely fine the whole 24 hours! We get the results, and everything came back perfectly. We were of course happy that the test came back clear, however, we felt at a loss. We did not have any answers and we were desperate for them! Fast forward a few weeks, and Anna's episodes seemed to be getting worse. She was collapsing weekly. I was getting calls from her school to come pick her up and she was barely functioning. I was scared to have her leave the house because I never knew when she would collapse. We had an appointment to see a pediatrician. I'll never forget sitting in his office, him looking at Anna, and saying 'Are you sure it's not all in your head?" I was in shock. Here is a 14 year old girl, whose world has been turned upside down, having to listen to a comment like that. We did not go back to see that pediatrician.
At this point, we were either in Emergency or the Dr's office every other week. It was exhausting and beyond frustrating! Every time we were in Emergency, she was hooked up to an ECG machine and every time, borderline prolonged qt showed up. I wanted to scream!!! I just wanted a Dr to tell me what was going on and why she was having these episodes! Nobody could give me any answers.
It is now November and time for basketball tryouts. If you know Anna, she is an athlete and a competitor. She was named MVP last year for the basketball team and was so excited for tryouts. Unfortunately, near the end of practice, we get a call that Anna had an episode and they had called 911. I rushed out the door to meet her at the Abbotsford hospital. She looked beaten and broken down. My heart broke. Thankfully though, this is the point where a referral was made to a cardiologist for B.C. Children's Hospital. I was ecstatic. Finally!

Sunday, 7 February 2016

Where it all started

Hey! So it's been over two years since I've last written anything on this blog. I have been contemplating the last couple of weeks on whether or not I should start writing again. I keep telling myself that I won't have the time needed to put into it, but then realized that it doesn't really matter. I can write when I want and if I don't get to it, that's ok too! This past year has been a crazy one and sometimes writing things out, makes things just a little bit clearer to me!
I'll go back to last summer...the summer of 2015. It was a typical summer. The kids were off on vacation, as was I! We did our annual camping trip up to Cultus and had many bbqs with friends. Anna joined a Soccer Tournament Team so we spent a couple of weekends in the U.S. She ended up breaking her wrist in one of the tournaments. Thank goodness it was close enough to Canada that Matt booked it across the border with her and she was seen in our local hospital! Insurance scares me and I had no idea if we were actually covered...I could only envision thousands of dollars in hospital bills! Anyways, she recovered fine from that and we enjoyed the rest of summer.
September came. The beginning of a new school year. Adam started grade 10, Anna grade 9 and Caleb grade 7. With the beginning of a new school year of course brings the new season of sports! Anna made Gold Rep Team for soccer and she was pumped! She had been to a tournament the last weekend of august and played great! The first week in September, I dropped her off for practice as I always do. She's at an age now where I don't have to stay for the practice which is great! I can use the time to get some other stuff done. I had dropped her off and had gone home to do some cleaning. About a half hour of being home, my cell phone rings. The same time as my cell is ringing, my landline starts going off as well. I answer my cell and it's a parent of one of Anna's teammates....she's actually a great friend of ours! Anyways, I answer the phone and am told that Anna is not doing well and we need to get to the field to pick her up. I was a little confused because she was absolutely fine when I had dropped her off! I rushed out of the house and honestly expected her to be absolutely fine by the time I got to the field. I showed up to the soccer pitch and walked towards where she was practicing. I expected her to come walking towards me. Instead, I was met with her coach basically almost carrying her off the field. She had no strength and was almost in a daze. I asked Anna what happened. She said all of a sudden she couldn't see anything and couldn't hear anything. She remembered asking her teammate for help but couldn't actually hear herself speak. She said everything went blank. Apparently Anna was saying things that didn't really make a whole lot of sense. Fortunately her coach was close by and lowered her to the ground before she hit it. I decided to take Anna to the emergency room. I had no idea what had happened. At the ER, she had an ECG. We were sent home and the Dr said he would call later that evening. About 11:00 that night I received the call from the Dr. He said everything looked good. He told us that borderline prolonged qt had shown up, but apparently borderline qt shows up quite often. Unfortunately, we had recently found out that a few people in our family have prolonged qt so I was a bit worried. I thanked the dr and said I would do a follow up with our family physician. This was the beginning of a long road with much heartache and lots of confusion, tears, ambulance rides and a new life for all of us. An episode on the soccer field has changed everything. This is her story.

Monday, 3 March 2014

EEK!!! Yes, it's been a really long time once again since I've blogged!!! Life, and it's business, has gotten the better of me and I have not taken the time to write! I'm making another attempt to take the time to write....hopefully I don't bore you to death!

This weekend was full of snow, snow ball fights and staying up late. We don't usually get a ton of snow so we are always pleasantly surprised when it comes! The snow started falling Saturday night and kept going strong right through to Sunday evening. I kept measuring the snow with a ruler and at one point, it was up to 33 cm! Craziness!!! We shoveled the driveway about five times...well Anna and I did because Matt and Adam were in Vancouver for the Heritage Classic Hockey game and Caleb was too busy playing in the basement....hmm?? We were watching the snow and praying that it would continue long into Monday in the hopes of having a snow day! Around 9:00 we looked out our window and the snow had turned to rain. My hopes for a snow day were slowly dwindling but I still held onto the dream ! I mean, really, we NEVER get this much snow! We went off to bed and I waited for the alarm to ring. I woke up, ran to my computer with bleary eyes and saw the best news ever! The school was closed!!!! Whew! I love unexpected days where you get to lay around in your pj's, drink coffee and have some quiet before the kids get up. Those are my best mornings....especially when Matt does a special Tim's run for me!!!!
The kids and I enjoyed our day together. They played outside, we watched a movie and just spent the day being lazy. It was a nice change to our usually very hectic schedule.
I'm looking out the window now and the ground is still covered in snow but I know life will begin again tomorrow. The alarm will ring and I won't be running to the computer in the hopes of another snow day. We enjoyed the one we had and are now looking forward to Spring!!!

Thursday, 28 November 2013

I was recently approached by a fellow blogger in regards to writing about being thankful for the things that we have. Heather, who writes the blog mesothelioma.com/heather , is an eight year survivor of mesothelioma- a rare cancer caused by asbestos exposure. She is on a mission to spread awareness of this cancer by sharing her story. She was diagnosed in the month of November and now, every November, created '30 Days of Thankfulness' where she acknowledges something that she is thankful for. She approached me asking if I would do a blog post acknowledging something that I am thankful for! Of course I said yes!
I guess it is difficult for me though, to only acknowledge one thing that I am thankful for. I have so many blessings in my life in which I am grateful.
I am grateful for my children. I am thankful for the chaos that they bring into our lives. I am thankful for the joy and love and constant business that they give us. I am thankful for their own unique personalities that keep us laughing and keep us connected as a family.
I am thankful for my parents. I am thankful for the childhood they gave me and the never ending support and love they give to me, my kids and to Matt.
I am thankful for my siblings. My sister, who, although we may not always see eye to eye, is someone that is always there for me and is such a huge part of my life!
My brother and my sister-in-law who have given me two beautiful nephews to love and to cherish. They have given me someone to talk to when I am alone and who always brings me such comfort.
My two other brothers who keep me on my toes!
My aunts, uncles and cousins who are a constant joy in our lives! I am so thankful that whenever we get together, we get to sing, dance and have a wonderful time together! I am so grateful that our crazy family enjoys so much just being together and appreciating each other's company. From Ontario, Alberta, Vancouver Island and the lower mainland-we all love each other!
My mother-in-law who, although she lives a distance away, always thinks of us and remembers the important dates in our lives!
I am so thankful for my husband who often times gets up early just so that he has time to go to our local Tim Horton's so that I wake up to a fresh cup of coffee. A husband who always makes me feel beautiful even on the days when I am definitely not feeling that way! A husband who has bathed babies, changed diapers, done laundry, dishes, washed floors, and who now takes kids to the pool and to sporting events and who is just always willing to do anything to be a great dad and a great husband. How lucky am I ?
There are so many things to be thankful and grateful for and there is no way to mention it all. I have lived through losses of special people, illnesses of loved ones and hurt that life can bring. Through it all, there is always something that is good, something that is beyond us and something we should be thankful for!

Thursday, 21 November 2013

The sun is shining! It is beautiful, but so cold! These fall days are my favourite, though! Nice and crisp and refreshing! I'm going to enjoy it before the rainy days come!
I'm home from work today because Caleb is sick. I hate when any of the kids are sick, but today, it has given me an opportunity to get some things done around the house. I was feeling a bit like my house looked like a tornado had passed through it! I have found lately that as soon as I walk in the door, I'm off to the kids sporting events or school meetings or driving someone somewhere and I never get the chance to actually clean! Today was my day! Now to just keep it this way for the next few weeks would be great!
As I haven't written anything for a few weeks, here's a recap. Adam got his first report card since entering high school. He's always been a hard worker and put a lot of effort into his school work, but I was amazed when he brought his report card home. Straight A's! I'm a very proud mom! Out of those A's, his math mark was 97%!!! For me, who always struggled with math, I couldn't believe it! He's doing so well!
Adam also has started to play basketball on his high school grade eight team. I'm trying to convince him to pick jersey # 20 as that was my number when I played. I'm thinking he doesn't really thinks it's cool to be the same as his mom! He told me he's going to try and get # 11.
Anna and Caleb haven't yet received a report card this year. I'm sure there's will be great too! They're both playing soccer and they're loving it! Caleb is the top scorer on his team and Anna is one of the top as well. 
A couple of weeks ago, I was asked to go to a yoga class. I thought for sure that I could do it. I always assumed yoga was relaxing and peaceful. Did I ever have a rude awakening!!! I walked into the class with my friend. This was the first time either of us had ever tried yoga and we were both completely naive in what we were expecting! We walked in, rolled out our mats, and got all comfy, ready to relax. About 15 other people were in the class. They were stretching and laying on their mat waiting for the instructor. She came in, turned the lights off, and turned some soothing music on. I was ready!!! Before long, people were in the most uncomfortable positions, legs everywhere. I tried some moves, and just about died! During one of the stretches, my legs, and my friends legs, were so shaky and wobbly I thought for sure there must be an earthquake going on!We both just about broke out in laughter in the middle of the class. Once it was done, and we were able to move our legs again, we realized this was advanced yoga......maybe next time we'll start with a beginner session!
We are in the full swing of things trying to get ready for Christmas! I LOVE CHRISTMAS! I'm trying to convince everyone that we should put our tree up December 1st.....not sure if Matt's on board yet!
Gotta run!! My sick boy is calling!!! Enjoy this beautiful sunshine!!!!

Saturday, 26 October 2013

Around our house, the topic of winning the lottery comes up quite often. Matt and I talk about how nice it would be to not have any bills, or not to work, or be able to share the wealth with others. When life gets super busy, and overwhelming, it is not uncommon for one of us to say that we are going to win the lottery! Of course we know the chances are slim to none, but it's not a bad dream to have!
The other day, while the kids and I were hanging out in the living room, enjoying a lazy morning, the topic of the lottery came up. Anna told me that once, a long time ago, when they were all quite young, all three of the kids woke up in the morning before Matt and I, got dressed up in their very best clothes, convinced that that was the day when our family was going to hit the jackpot! She said they were completely shocked when it didn't happen!! Oh my goodness!!! I had no idea that they had done this many years ago. I love my kids and I love the way they are!!!  They're older now, and understand that the chances are slim that we'll ever win, and they're ok with that!!! We'll always have the dream, and will probably always mention the lottery in the tough times, but we're good with what we have!