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!

Tuesday, 5 April 2016

To be honest, the last few days have been rough....well actually the last few weeks have been rough! Anna seems to have deteriorated quite a bit and we're not really sure why. She used to have some really good days, but those are becoming fewer and fewer. She only made it to school a couple of days in the past two weeks. This week, she went yesterday and then had to be picked up by 10 am. She stayed home today and most likely will be too sick for school tomorrow. Basically, in three weeks, she's attended school three days....unbelievable! Last night Anna crawled into our bed at 1:30 in the morning. She was dizzy, lightheaded, cold, shaky...you know, all the lovely symptoms that a person with dysautonomia has :(  Before she went to bed last night, she was begging me to help her. It is so difficult not having any answers and no one to turn to. There is absolutely nothing that I can do. We tried calling the drs office this morning to see if we could get her in, but there was no way. I called her cardiologist this evening and left a message. I'm hoping I hear back from him tomorrow. I am desperate for any suggestions to help Anna get through this.

Thursday, 31 March 2016

New Normal

It's been a while since I've had time to write. Being back to work leaves so much less time to do the things that I love, but that's ok!
Not many things have changed with Anna. Life is hard for her, but is becoming just a natural part of our routine. Last weekend was Easter. We planned on attending the Easter Vigil Saturday night so that the kids could all sleep in Sunday morning. About an hour before we were to leave for the Vigil, Anna got sick. She was laying on her bedroom floor unable to move. I suggested she get in to her bed so she could rest, but her body wouldn't co-operate. She lay on her floor unable to move. Her eyes were closed, and she was holding her ears. I hugged her and tried to make her as comfortable as possible. We left Anna on the floor of her bedroom and went to Mass. It sometimes seems surreal to me that I would actually leave my daughter on her floor, feeling so sick, but it has become our normal.
It is so difficult to even explain what it's like having a child with a chronic illness. In some ways, it's like having a child who has the flu constantly, with times of severe suffering. She never really feels good. She is always sick. She has moments of feeling ok. She seizes those moments. She goes for walks and hangs out with friends. But those moments are rare, and if she overdoes it, she pays the price for a long time. The strange thing is, is that overdoing it for Anna, could just be walking for half an hour. So mind boggling.
Last week Anna was able to make it to school one day. This week, she went to school on Tuesday, stayed home Wednesday, went to school today but then had to be picked up. She was not well. She is now at home sleeping. It's hard to wrap my head around how sick she is.
We are taking things one day at a time. I have another doctors appointment booked for her in April. I will be begging for some advice. I am not enjoying our new normal even though I know, for now, this is the way it's going to be.