Tuesday, November 27, 2012

Study Check Up

Today Victor had a check up with the researchers and doctor overseeing the research for the study he is taking part in. The study is to see if taking a particular antibiotic prevents a certain type of lung damage.

My Aunt came with me to PMH this morning to look after Felix, and Victor and I went to the respiratory department with a box of last month's study medication. It was a pretty simple check up; they asked how he has been going, took observations such as breathing rate, pulse and temperature; listened to his chest etc. They did a throat swab which was a first for us. I made him laugh while they took a swab of the back of his throat with what looked like a long cotton tip. He was fine with that, it was very quick and he didn't cry.

We weighed and measured him: he is 7.1kg and 66cm long! He is growing well. I got a new box of medication and diary cards to fill out and it was no easy task lugging Victor, a diaper bag and a cardboard box full of medicine up to the next floor to meet Felix and my Aunt.

I also found out something very surprising; we actually receive payment as part of the study. It's meant to be compensation for petrol used and the inconvenience of participating (I really can't think of anything worth paying us for, it's hardly inconvenient and we are a twenty minute drive from the hospital). They have decided the best way to pay the families participating in the study is in a lump sum at the end of the year. Since this was our last appointment for the year, that was today! It was not a small fortune or anything like that but it's money that will definitely come in handy during the lead up to Christmas. Especially since we haven't actually started shopping! It's still November so I don't need to start panicking yet...

After our morning at PMH we went to McDonald's for lunch. Felix was beyond tired at this point as he woke up at 5am this morning so he needed some cheering up. He had the best time at the playground there. I realise that I give a lot of treats to Felix for spending time at the hospital with us and he is really the one reaping the rewards out of this whole situation, but honestly I think he is affected by his brother having cystic fibrosis just as much as Victor is, but in a different way. I'm not sure how much he actually understands of the whole situation, but he will understand more as he gets older and I know it will continue to have an impact on his life. And for the time being, Victor has no clue that anything is happening at all. He is happy to play with his big brother and cuddle.

The boys in the bath, about an hour ago. Bad quality picture taken with my phone.

Friday, November 23, 2012

Happy Thanksgiving!

Another holiday uncelebrated here in Australia, but that didn't stop us from having our own Thanksgiving last night. Really, any excuse for turkey will do!

The table set and ready to go!

 We went to my Mum's house, where she had made dinner for all twelve of us. And let me say, that turkey was PERFECT. There's a lot to be said for cooking turkey on the barbecue!

Mum and John carving the turkey
Mum is so clever with decorating and creating centerpieces. I can't do it to save my life, but she managed to decorate the house to a theme, which seemed to be an Australian interpretation of the Northern Hemisphere Fall Season. Sort of a merging of two cultures. It's an idea that has the potential to be very, very weird; but she managed to pull it off and everything looked amazing!

Grandad and Mary with Felix and Victor

Today the boys and I have had a very quiet day. Felix has come down with something, so he has a fever and is completely miserable, poor boy. Victor is fine but still tired from staying out so late last night. (10pm is late for us!). It's my birthday today so Phil and I were planning to go out for dinner tonight, but looks like that will have to be postponed! Felix is not good with taking medication at all, so getting him to take something is always a struggle. In fact, it's more than a struggle; it's a two-person job. He fell asleep while watching TV this afternoon and since he doesn't usually have a nap during the day he must really need the rest. He doesn't seem to have any other symptoms other than feeling tired, hot and miserable so I'm hoping it's nothing too bad and goes away soon.

It also means I have to be vigilant in keeping everything sanitary to reduce the chances of Victor catching this bug too. Hand washing is extremely important to reduce the risk of spreading the illness so it's time to stock up on hand wash and sanitizer!

Sunday, November 18, 2012

Happy Half Birthday, Victor!

Victor is six months old today! Look how far he's come:

Victor just a few minutes old, 18th May 2012


First cuddle with Felix

About 2 months old

Felix and Victor playing together, about 3 months old.

About four months old

About five months old

Rolling around in his bed after a nap, aged almost 6 months.
Can't believe how fast his first six months have gone! We love you Victor!

Great Strides 2012

The first thing I want to say is, THANK YOU! I am completely overwhelmed at how many generous donations we received for Team Victor. We beat our goal by raising a total of $2475 for Cystic Fibrosis WA. That is all because of the lovely people who donated, shared our fundraising page with others, and came with us on the walk today. Your kindness and generosity is truly appreciated.

Great Strides is a walkathon held every year to raise funds and awareness for Cystic Fibrosis. Our team consisted of Phil and I; Felix and Victor; my aunt and uncle, Michelle and Bill; my Mum, Julie; my Dad and step mum, John and Sarah; my brothers Oliver and Edward; and Bill's sister Jo and her daughter Grace.

We arrived at 9am in time to sign in. Felix played a little fishing game with Aunty Shell, and I met Phil's friend from work and her grown son, who also has cystic fibrosis. It was really good to meet another family who understands completely what it's like to live with cystic fibrosis, and as they have years of experience they were able to offer some very good tips and advice! My Grandad and his friend Mary came along to see us too; it was great to have their support on the day.



Then it was time to start walking! The timing was just off, meaning Victor wanted a feed right when we had to start walking. So I walked for the first few minutes with a baby under my shirt! Bit awkward but you do what you have to do! (And who isn't impressed with that level of multitasking?!).

Victor in the pram.

Soon Victor and Felix were settled in the pram together and we walked around Lake Monger, a distance of 3.5kms. I was worried that it was going to be too hot but the weather was perfect. Sunny with a few clouds and a lovely cool breeze so the walk was very relaxing. 

Felix in his Batman sunnies

And about 40 minutes later, we arrived at the finish line! We were greeted by Stitches the Bear, the Princess Margaret Hospital Foundation mascot, which Felix absolutely loved. Biggest smile on his face when Stitches came over for a high five! While we were walking the rest of the carnival had been set up, including a bouncy castle, a stage for singers and dancers, food and drink stalls, merchandise stalls and other activities for the kids. Felix had a turn on the bouncy castle and had the best time! It was hilarious watching him jumping around in there while laughing hysterically and yelling "I'm jumping! I'm jumping!" I asked him after a while if he wanted to hop out and he said "No way! No way Mum!". He did come out eventually and had a play on the playground until we went home.

Team Victor at the finish line!

It was wonderful to see such a huge turnout and to see so many people dedicated to the cause of helping people with cystic fibrosis. It really meant a lot to me to know our family and friends care about little Victor so much and I am eternally grateful to them all. Here's hoping next year's Great Strides will be even bigger and better...a step closer to a cure.

Phil, me, and the boys.



Monday, November 5, 2012

The Importance of a Support System

A conversation I had with the social worker for the children with cystic fibrosis and their families made me think about our lives with a 'chronically ill' child and how we deal with that, and made me wonder how that is similar or different to those in the same situation as us.

Our social worker asked me how we were coping with the diagnosis and Victor's medical treatment. I said we were going fine; I have my laminated charts but mostly we are in a routine and I don't rely on them as much any more, unless we are adding in a new medication. Although he takes a lot of medication every day (currently he takes salt supplements, enzymes, antibiotics, multivitamin supplements, iron supplements, Vitamin D supplements, and a study drug) it's quite easy to make sure he gets them all during the course of the day.

She also asked how I was feeling emotionally about everything. Honestly, I am fine. I think we all are. Of course I wish Victor did not have cystic fibrosis, and I could never possibly be happy about that, but the fact remains that he does have it and it's not going to go away. I find it much more positive and constructive to focus on keeping him healthy and looking to the future, as better treatments are being developed all the time and lots of research is going into this disease. I believe we will see massive improvements in treatment, affecting not only life expectancy but also quality of life in the coming years.

She also asked how the family were coping with everything. I think everyone is doing well, and she said often family and friends take their cues from the parents and react the same way. We have been open and positive about everything right from the start so I think the people around us have also been positive about everything. Obviously it's a serious illness, but I refuse to let our lives become doom and gloom. He is very healthy so far; and even when he gets sick he will need a family who can be strong for him.

I think one of the main reasons we are doing so well emotionally is partly because of our attitude toward cystic fibrosis. It is becoming normal for us and just a part of our lives so we don't really see it as a big deal any more. Of course that does not take away from its seriousness, but I don't see any point in constantly thinking about that, especially when there is no need to: Victor is doing so well that his treatment is purely preventative at this stage. Giving him his medications and treatments has now become automatic, so instead of thinking about how sad it is that he needs all this medicine I now just do it without thinking about it.

The other reason we are doing so well is because we have a very extensive support system in the form of family and friends. We are very lucky to have a large group surrounding us who love and care about both the boys and are there for us when we need them. Without them, I think everything would be entirely different. We have a large family that extends across to the other side of the world and it is an amazing thing to feel an emotional connection to people who are physically so far away. We also have family nearby and they are able to help us practically as well, such as watching Felix so I can go to appointments with Victor, coming along to the hospital with me, or looking after the boys for a few hours so we can get a break. Just spending time together really helps as well, it is a reminder that life really has not changed much.

What I've learned from this experience so far is the importance of family and what a difference a support network can make and that we can handle the bad stuff. The bond between Felix and Victor is really amazing, I know that they will both always look after each other. I've never seen anything like it, they are two peas in a pod!
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