Tuesday, 17 May 2016

Our Journey

Life has been a bit of a whirlwind lately. The flu hit our house and it hit us hard!!! Thankfully, Anna hasn't gotten it yet.....hopefully it will skip her because it is a nasty bug!!
Just writing to give a bit of an update. Anna, as always, has had her good days and bad days. Last week, many kids from her school went on a trip to Victoria for the day. Anna really wanted to go but I was super worried that she wouldn't be able to do it as they were going to be doing a march for life. Anna has difficulties walking for any extended periods of time and I had no idea how to jump through this hurdle! I want her to be involved, and want her to do as much as any other teenager, but I always want to make sure that things are safe for her to do. Luckily, we know someone who has a wheelchair and she was kind enough to lend it to Anna for the day!! YAY!!! At first, Anna was a bit hesitant about using it but soon recognized that it was necessary in order to go on the trip. The day came to go to Victoria, and Anna was so scared that people would tease her or make fun of her for being in the chair. I told her to hold her head up and sit in that chair proudly! Many people in her school know that she is sick, so of course everyone was kind, which was such a relief for her! It's bizarre that we are now at a point that she requires a wheelchair to do certain activities but we are so grateful that she still has the desire and determination to keep going. She has chosen to make alterations to her life to make sure she doesn't miss out...she is a champ!
This past weekend was awesome! Anna felt pretty good, so, in typical Anna fashion, she seized the opportunity and took full advantage of feeling half decent! Friday night she had a friend over for a visit. Saturday she went to a bbq, then we had a bbq at our house the same night, she had a friend sleep over Saturday night and then had kind of a lazy day on Sunday. I love when life feels normal; when we're just doing regular activities like any other family. These are the moments that I savour and really look forward to when days are hard.
Sunday night, things kind of went downhill. Anna went to bed fairly early. Matt and I were asleep and were woken up at 3:30 am by Anna. She was sick. Terribly sick. She crawled into our bed shaking, trembling, freezing and barely able to speak. She laid next to me while Matt went to get her gatorade. Matt went to the spare room and I just rubbed Anna's body as she tried to recover. I rubbed her legs as she held her head and moaned. This is the time that I hate; the time where I feel helpless and the time that I wish so badly that she didn't have to suffer.
Anna didn't make it to school Monday and was too sick to go today as well. I really struggle sometimes going to work knowing that I am leaving behind a very sick girl who would love to have me home. Unfortunately, we are not rich ;)  so I need to go to work and Anna completely understands that but it doesn't always make it any easier. I had a moment at work today where I shed a few tears. I'm sure exhaustion played a role in having my emotions spill over, and maybe the fact that I try and keep it together all the time, and maybe that I had a beautiful person take the time to chat with me and talk about Anna....all of those things can definitely bring a few tears to my eyes!
You know, as we walk this journey, we are learning so much and truly discovering what is important and haw valuable certain things are. We are learning to rely on each other for support and learning that, as a family, we are strong. Our two boys have been forced on this journey too, and they have done it without one complaint. As much as I wish this was not a part of our lives, it is, and we are trying to make the best of it. There may be days full of tears, pain, suffering and complete anger, but there are also plenty of days filled with spunk, spirit and life...these are what we focus on. Thank you to all of you who are on this journey with us.

Sunday, 8 May 2016

Hey! It's been a couple of weeks since my last post. Sometimes I feel like a need not to write; I can almost pretend that life is normal, pretend that all is good and pretend that what Anna is going through is a distant memory. Of course, that's not true, but sometimes living in a world of denial, even though short lived, can be refreshing!
I think one of the weirdest things about having a child with a chronic illness is that life goes on. It has to go on, but sometimes it just kind of jumps out at me like flashing neon lights. When I see other kids playing sports, or making teams, or just living and I think wow!! I took that for granted not too long ago. I used to complain about how busy we were driving here and there for different games and now I would do anything to be doing that. At the beginning of her illness, so many people asked about her and asked about us, but now it is just a part of our lives and that doesn't happen as much anymore. I sometimes wonder if people just think she's doing ok or if life goes on and we re just expected to move along with things too? I don't know? Maybe it's because when people do see her, Anna is having a really good day. If she wasn't, she would be at home in bed! I guess people don't see the down and dirty, ugly side of dysautonomia that plays such a huge part of our lives. I sometimes wonder if people think we're crazy!!! If you see Anna on her good days, she looks like a million bucks!! I know that people care...I know that they care a lot....like I said, it's just one of those weird things!
Since my last post, Anna had a drs appointment with our family physician. He suggested that we may want to consider switching the beta blocker that she is on. At the appointment, we decided to keep things as they are, but since discussing it further with Anna, I think we might go for the switch! With her current beta blocker, it will be really hard for Anna to increase her exercise...we are hoping with a new medication, maybe she will be able to be more active! In some ways, I am terrified to try something new. On the other hand though, I always have this faint hope that maybe, just maybe, something that we will try will miraculously cure her!!!
We have also decided to stop the acupuncture treatment. It was making her feel so sick and we weren't seeing enough improvement for me to keep putting her through it. It kind of felt like another roadblock; another attempt at something to try to help Anna, and another failure. I know that we can't give up though, and we will continue looking for alternate treatments!
We also discovered that Calgary has opened up a clinic for dysautonomia/POTS patients! I am super excited about this! I told our family dr about it and hopefully we will get a referral to go there!!! It would be amazing to go to a clinic where drs specialize in this and are actively researching!!!

Sunday, 24 April 2016

Keep fighting!

First off, happy, happy birthday to Matt!!! This year has been tough and you have been an amazing support through it all!!
I actually have some pretty exciting news! I was able to speak with a lady yesterday whose daughter has the same diagnosis as Anna!!! It may not seem very exciting to others, but to have a conversation with someone who truly understands what we are going through, was amazing. It was so nice to speak with someone who could pronounce dysautonomia.  We talked about all of the struggles and how hard it is to watch our daughters go through this. We talked about how little the medical community knows and how many incorrect diagnosis' they give. How doctors just assume there is nothing wrong with them because by the time they get to the hospital, nothing shows up. We talked about all of the hospital visits and medical appointments. It was like a breath of fresh air. I didn't have to try and convince her that Anna is sick, She knows how sick she is because  her daughter is the same. Her daughter has missed tons of school and is unable to do the activities that she used to. As sad as this is, it was nice to know that someone is facing the same battle. It was nice to reach out and connect with another person who understands the severity of it, the sadness of it, and the heartbreak. It was also nice to talk to each other about how strong our daughters are. They are fighters and determined to get well. Even though the journey seems endless, and so, so hard, they keep putting one foot in front of another. Keep fighting!
If you click the link below, there is a little video of Anna's journey so far!

Saturday, 23 April 2016

Sucker punched

I kind of feel like I've been sucker punched and the wind has been knocked out of me. I thought I would take a look at the roster for the upcoming Rep Soccer season. I knew Anna's name wouldn't be on it, and I know if she gets well, she'll be placed on a team, so I thought I would be fine looking at the list. Boy, was I wrong! Looking at the roster, and not seeing her name on it, truly took my breath away. Seeing all of the names of her friends, and people she has played with for years on the list, and Anna's name missing, feels wrong. I know it can't be helped, and we can't do anything to change it, but it is a sickening feeling. I honestly don't even have words to describe it. Her name should be on that list. She should be jumping up and down excited for another season. She should be celebrating with her teammates. Instead, she is downstairs sleeping, too sick to get out of bed and I am here trying to keep my tears in thinking of what has been lost. Wow. How did we get to this point? To be honest, I am a bit of a mess right now. I keep thinking why? Why did this have to happen? Why did a beautiful girl like Anna have to have such a debilitating illness? Why? I know there are no answers but I have so many questions and today is a day where I am just mad. Mad at the whole situation and mad that this happened to her. Mad that she is not on the team. Mad that she can't run and skip and play like most people her age. Mad that all of this is out of our control and there is absolutely nothing we can do to fix it.

Wednesday, 20 April 2016

On top of the world!

Anna had a great week last week! She actually had 8 days where she felt pretty good. Saturday night she started to turn again and not feel the best. She was at a friends house for a sleepover. I was going to pick her up but she decided she would stay and just go to sleep. In times like this, I just want to go get her and bring her home, but I am really trying to give Anna some control. If she thinks she can make it through something, I want her to try. We were planning on picking her up around 1 Sunday. She texted around 12:15 asking if we were on our way. I figured she can't be doing that well if she wants to go home. Matt left to grab her. When she got home, she looked so sick. She said they had tried to go for a walk and she just couldn't do it. Her legs had gone numb and she had to sit on the side of the road. She said that at one point, she started to walk into the middle of the road without even realizing it. Thankfully her friend grabbed her! I think sometimes that is the hardest part about her illness. The fact that, besides completely ravaging her body, it also causes her to completely lose all focus and she literally cannot concentrate on anything. When she is in the throes of her illness, her brain does not work the way it's supposed to. At times, you can actually see her thinking;trying to string words together and try and remember things. It's insane!
Anna missed school Monday and Tuesday but was able to go today. Hopefully she will make it through the rest of the week. A couple of months ago, we started acupuncture treatment for Anna. I have read that this can be beneficial for some patients. After every session, she has come home, and about an hour or two later, been completely wasted. It knocks her out! It knocks her out to the point that she can not walk and can barely speak. We have thought about stopping the treatment but after her last session, even though she was so sick after it, she felt pretty good for a while so we're going to give it a few more tries and see how she responds to it. We figure if it causes her to be super sick for one night, but gives her a week of feeling decent, it will be worth it! She had acupuncture today after school. She is not feeling well right now :(  I am praying that it doesn't last long and she soon perks up! I struggle sometimes on whether or not I am making the right decisions. I want so badly for her to be better but it kills me when I decide something for her, and it makes her feel so ill. While she was laying on the acupuncture bed we were chatting about life and her illness. She is so tired of feeling sick. She is so tired of not having energy and having horrible headaches. She is tired of feeling out of breath just walking up a flight of stairs. We started talking about her good days. Anna looked at me and said, 'Mom, on my good days I just don't feel as sick as my bad days, but I never feel good'.
I am praying that she will soon have good days that are actually good days. Days where she feels on top of the world!

Thursday, 14 April 2016

Do not be afraid

I received a call back from the cardiologist the other day. It was not the news that I was hoping for. He doesn't think that IV therapy for Anna will be beneficial. Although I was kind of expecting this response, it's still hard to hear. For me, this was an avenue that I thought might provide Anna a sense of relief. It feels like we are back at square one. When I was speaking with the Doctor on the phone, he was very nice about it all, and very honest. I was explaining how ill Anna had been and how we are frustrated because we don't know what to do for her. Basically, he told us we have a long journey ahead of us and unfortunately, the medical community does not know enough to provide us with any advice. Ahhhh.....so frustrating!!!
On a positive note though, Anna has been feeling pretty good these past few days! She's actually made it to school every day this week!! It's so strange how our outlook on things have changed. Before, we were upset if our child was sick for a few days, now we are celebrating when she's feeling well for a few days.
If you have read some of my previous posts, you may have read that I was hoping for a miracle for April because of soccer tryouts. The miracle hasn't happened yet. Today is the first tryout. So hard. On the way home from school today, Anna mentioned it to me. I didn't bring it up because I know it's a very sensitive subject for her. She wants so badly to be out there with her team. I hate how this illness has taken that away from her. I did talk to the head of the soccer organization and he told me that Anna will have a spot on the rep team but that still doesn't mean she will be able to play. We now have until September for the miracle!
I came across a beautiful passage the other day and I felt like it was meant just for us. It is now something that I look at every day to try and remain clear headed and positive in a situation that can get me down very quickly.
          "Do not be afraid; do not be discouraged, for the Lord your God will be
                                           with you wherever you go"

Sunday, 10 April 2016

Good Days!

It's Sunday evening and it feels like the weekend should just be starting. Matt and I were saying the other day that the weekends feel like ten working days rolled up in to two days.... so much driving and running around that has to be done! I love doing it though because I know before I know it, these days will be over!
Update on Anna. She has had a really good last few days...yay! I get so excited when she gets to do normal things and feel half decent. It brings a sense of normalcy to our lives even if it is short lived. We spent Saturday at high street mall just walking around and enjoying the sunshine. She spent Saturday night with friends and is now visiting another friend at her house. Anna definitely takes full advantage of feeling well and enjoys her time as much as she can! She's a superstar!
If you read my last post, you know that Anna has not been well at all. It is very hard to watch and we are doing everything that we can to try and help her. One night last week, Anna was so sick. I went downstairs to check on her and she was laying on her bed. I crawled in beside her and asked how she was. She just mumbled an answer and closed her eyes. I asked her if she wanted a drink. She nodded her head so I went and got her her Gatorade. I passed it to her and she could not even lift her arms. She had no strength. I went back upstairs and got a straw. I held it to her mouth, lifted her head, and she took a few sips. She rolled over and her body jerked and trembled. I gave her a kiss on the forehead, hugged her, and left her to rest. I walked upstairs with tears running down my face. I want to take this illness. I want to be the one that has to suffer. I want to be the one that can't move. I just want to take it all away from her. I know I can't though, so I'll just keep researching and fighting for her.
You may know that I had called Children's Hospital and left a message to speak with her cardiologist. I heard back from someone Friday morning. I explained how sick Anna has been and how we really don't know what steps to take. Through my own research, I have heard that many people who suffer from this illness, receive saline IV treatment. Some people receive it weekly, bi-weekly, daily and some people actually have a port where there is a constant flow of saline.I told the person at Children's that this is an option that we want to try for Anna. It may not cure her, but it just might give her a better quality of life. I want to try anything that might help. The lady said that she would send the message to the Dr and get back to me this week. I am so anxious waiting for the call. I am hoping and praying that he is open to trying this treatment plan. I am so scared that he won't let Anna do this. I have read that some doctors are not comfortable trying things that may be outside of the box a bit. If he says no, I will have to keep trying and I will keep fighting until I find a Doctor who is ok with this. The IV treatment may not even work for Anna, but I will not stop until we have tried everything!