Thursday, January 24, 2013

Psychological Study

A few months ago we were asked to participate in another study. This one doesn't affect Victor at all, it's mostly about the family. This study is run by a group of psychologists and the study is investigating social and economic factors affecting cystic fibrosis outcomes, and also investigating whether families need more or better access to certain services and how that affects the family and the child with CF.

Phil and I agreed to participate and were sent out large questionnaires, one for each of us. The questions ranged from basic ones about our life, such as total household income, our education levels,  how many people are in our family, are we renting or do we own our house, to questions asking about how we cope with a child with CF: do we use any of the following methods to cope (with a long list); how do we parent? How do we discipline? How are we feeling? All questions were multiple-choice and there was space to add comments if we needed to.

Phil didn't like the questionnaire; he decided to not participate in the second half of the study.

I went on with the second half of the study, which was an interview with the research psychologist in charge of the study. She visited us at home on a Saturday just to make it easier for us. She was very nice and easy to talk to which is probably a good trait for a psychologist to have!

We chatted for about half an hour when she arrived, and she explained what the study was about in a bit more detail. The questions she asked were read off a piece of paper as they were standardized. She explained they were the exact same questions asked in a study on families of oncology patients, with a few extra added in to make it relevant to CF. The interview was recorded.

The questions started with: Name three adjectives to describe Victor and give an example of each. I think I chose active, content and happy (it's actually fairly difficult thinking of ONE word, think I needed a thesaurus handy!). Then I had to do the same, but describing myself, which was a million times harder (especially as I was trying to think of positive describing words!). I had to describe my relationship with Victor, what I hoped for in Victor's future, what I worried about in Victor's future, how do I behave when anxious or stressed, how does Victor behave when I am feeling anxious, and a lot more questions along that theme.

The interview took just over an hour as predicted. For the most part, the questions were pretty easy (just had a few mental blanks and couldn't think of a single word with the descriptive meaning I was after! Got there in the end though!).

Even though she was friendly and easy to talk to, I did get the feeling that I was being 'analyzed', but I accept the possibility that it was only happening in my mind! I also felt as though she was prodding me for answers at times, and for a while tried to guide the conversation in a more pessimistic direction (for lack of a better term). She threw in a few reminders along the lines of 'terminal illness' and 'he is really sick' and 'if' instead of 'when'. I wondered perhaps if I was coming across as too positive and therefore not seeming completely honest and open and she was trying to get my real feelings out? Perhaps I'm not normal then because seriously, this is just what I'm like. I don't have any energy to put up a fa├žade so this is it. If I'm happy people know about it, if I'm not, then people definitely know about it. Luckily I'm usually pretty content. And of course I am aware of what cystic fibrosis is, but I don't see the point on dwelling on the negative possibilities, things which haven't happened yet and may not ever happen. We'll cross the hurdles when we come to them. The fact is that even with cystic fibrosis, Victor seems really healthy. He takes his medicine and does his physiotherapy every day, but aside from that no one would ever suspect anything was wrong with his health. I'd rather focus on our preventative treatment now and trying to keep him this healthy for as long as possible instead of getting stressed out thinking about what might happen if he were to become sick.

It's taken me almost a week to write this entry, I think I've just been really tired. Victor is getting so strong now, he is crawling very fast, getting into everything, can sit well on his own and has started to try to pull himself up on things. Felix is getting smarter every day, he wants to know how to spell everything and knows how to spell out his name, Victor's name, and several other words using magnetic letters or alphabet blocks. I am encouraging him to sound out the word when he asks the spelling of it and you can see he's proud of himself when he gets the right answer on his own. We are also getting ready for his third birthday, which is just around the corner!

Both boys have been painting pictures this week, Felix is the only one who decided to paint himself though!

Thursday, January 10, 2013

January Check Up

I am always so exhausted after our doctor appointments at Princess Margaret Hospital. Once again, Mum came with me to look after Felix so I could actually concentrate on what people were saying to me, plus I have my hands full enough just carrying Victor and his bag (he is extremely wriggly).

When we arrived we weighed and measured Victor. He is 7.338kg and 67cm long (16.17lbs and 26.3in). He is following his usual curve on the growth charts (10th percentile), so the doctor was happy with him. His lungs sound clear and he has no sign of illness at all, so we are just going to carry on and continue to do his preventative treatment. It was very good to hear!

We spoke to the physiotherapist, who is also happy with his progress and says he may be an early walker since he is crawling early. Victor spends most of the time he's awake crawling around and playing, which is good exercise for him. We are just going to continue fifteen minutes of manual physiotherapy twice a day, which can be difficult sometimes when Victor decides to crawl away in the middle of it!

I also spoke to the dietitian about the types of food he's been eating, how much Creon (enzymes) he's getting in a day and what things are looking like coming out the other end. It's gross, I know, but it's pretty much the only way I can tell if he's getting the right amount of enzymes.

The last person I met with was our social worker. We are entitled to a Carer's Allowance and health care card for Victor because of his cystic fibrosis, which will cap all of his medications at $5.80. The paperwork is nearly done (it has been such a hassle, I can't even begin to say how annoying it has been) and until it's processed we have been getting temporary health care cards from her. We then went down to the pharmacy and placed our order for a three month supply of everything, which came to over $70 with the discount.

While I was waiting for the medications, I took Victor to get some bloodwork done. He was low in iron and Vitamin D last time and has been on additional supplements since then, so we want to find out if the levels have changed.

Poor little Victor had a bit of a rough time today. He was tired, as the appointments were scheduled at the same time he was due for a nap. He is also getting to the age where he realises some people are strangers, so he decided he would scream if anyone came near him. This made things interesting for the doctor trying to listen to his chest with a stethoscope, or the physiotherapist trying to see how well he was sitting up, or basically anyone who made the mistake of smiling at him today. He fell asleep for a little while, then woke up with a start when my phone rang and couldn't get back to sleep, so he grizzled and clung and wiggled the whole time after that. Having some blood taken was the absolute final straw for him. I placed him on the table and he started crying--huge sobs mixed in with coughs--as the very kind lady tried to find a good vein in his arm. I don't think the needle hurt him because she seemed very gentle and he didn't seem to notice it happening so I don't think he was in pain. I think he was just tired and didn't want to be poked and prodded at any more. He stopped crying as soon as I picked him up again and snuggled into me, and then started crying again when he was given a sticker, poor baby! Probably wondering what they were going to do to him now. He was very adorable with the sticker on his shirt though.

Victor's sticker: 'I was very brave at the doctors today'.

We went back upstairs with Mum and Felix as well to wait for the medicine, which took a very long time. Finally we got the car loaded up with children and the box of medications and drove through the crazy traffic; it was nearly 5pm and we had been there for three hours. Victor was not happy in the car and finally fell asleep again. After stopping to pick up dinner we eventually got home.

We will be back to do it all again in three months' time, unless Victor gets sick and we need to go in earlier but hopefully that won't happen.

I actually like going in to see Victor's CF team because I like to know how he's going and if any changes need to be made (today the only change is to slightly increase the amount of antibiotics he's getting, because he weighs more now). It is exhausting though because I have to juggle a baby and an enormous diaper bag and his medicine bag and then the new medication we're taking home with us that day, plus the doctors give us pieces of paper that I can't lose and have to then dig out of the bag (prescription to be filled, order for bloods, notes scribbled on tiny pieces of paper etc). It's especially difficult because Victor wants to get down and crawl, but of course there's no way I'm letting him crawl on the hospital floor. I definitely could not wrangle two kids at the same time so I am very lucky that Mum has been available to watch Felix for me. I'm hoping things will get easier when Victor gets older.

They've both been so good today, I think we should have an amazing super fun day tomorrow.

Monday, January 7, 2013

Life, the Universe, and Everything

I feel like I have to write this post because it is concerning one aspect about the CF community in which I feel completely alone. I have noticed that a huge percentage of CF blogs are written with a pretty distinct religious (Christian) flavour.

That is just not me, it's not my family, it's not how we do things in this house. I am about as far from religious as it's possible to get. We do not teach our children about spirituality, we do not go to church (the last time I went to one was for our dear friends' wedding, and before that, my grandmother's funeral). We don't talk about God or think about him/her/it. This extends into not believing in any kind of afterlife, karma, spirits, ghosts, name it.

I believe we are alone in this world and everything is random. There is no good or evil. There is nothing but us. Because of this, I feel it is especially important for us to be kind to one another, look after each other, and help each other, because in my view, there is no one else out there to take care of us except for us. The human species is social by nature and has a well-developed sense of empathy so for most people this comes naturally. We want to help others, seeing others in pain causes us distress, seeing others happy brings us joy.

But, I digress. From the time Victor was first diagnosed and through to today, I have searched everywhere on the Internet to find other families who truly understand what we are going through. And I have found them! I follow several blogs written by other parents who have children with cystic fibrosis (they are listed in the right hand column, if you want to check them out too!). I have been contacted by parents who have children with cystic fibrosis, and people who have CF themselves. I can't explain how amazing it is to find people who know exactly what we feel, who are travelling the same journey as us. I really needed to find these people.

I understand that faith is something that's very important to a lot of people. If a belief in God or other religious figure brings someone happiness and comfort, then that is wonderful for them, and I'm truly happy they are able to find comfort. I don't have this belief to bring me any kind of comfort. In fact, when Victor was first diagnosed, it seemed to secure my stance that there is no benevolent deity watching over us.

I cannot reconcile the thought that a kind, loving god would inflict serious illnesses upon children. That thought is what first pushed me away from Christianity in the first place, some twelve or so years ago. I cannot wrap my head around the idea that there is an omnipotent being who allows children such suffering.  Now that I have my own baby with a serious illness, I feel even more strongly about it. Bad things happen to good people, and good things happen to bad people, the world is unfair and sometimes everything just sucks and there's no getting around it.

I have like-minded friends who acknowledged that such a serious diagnosis could cause me to turn back to religion, to beg for comfort and healing. In some ways I completely agree. I would absolutely love to know that there was a loving god watching out for us, helping us along, helping Victor breathe every day, taking the weight off our shoulders. But then, if such a being exists, why did he feel it necessary to give Victor this disease in the first place? Or rather, if he truly is omnipotent, why did he allow this to happen? Why has he allowed this to happen to thousands of children throughout history and thousands more into the future? And more to the point, I can't just make myself believe in something. I have searched so desperately at times, for something--anything--but the only answer I've ever received is silence. I can't ignore that.

What gives me comfort is the knowledge that Victor has an amazing team of doctors at Princess Margaret Hospital, who truly care about him, who are on the forefront of modern medicine and are doing everything they can to slow the progression of this wretched disease. I get comfort from knowing we have family and friends who love and support us, and help us when we need it. And although I would never wish this upon another person, I get comfort knowing there are others just like me who are going through the same thing we are, and thriving. I know this is not the end of the world. I know that so much progression has been made in this area of medicine and Victor won't miss out on a single thing, and I truly believe we will see more amazing discoveries made in the years to come.

Instead of praying to God for healing, we administer healing ourselves. His doctors prescribe medications and treatments that have been proven to help people with cystic fibrosis; we as his parents administer the medications and treatments every day; and Victor himself will play more of a role as he grows bigger and stronger. Right now he is helping to fight this disease by taking his medication and being compliant with his therapy, but he is a cheeky little thing and I know he will never let cystic fibrosis stand in his way.

I know that some people may be offended at what I've written here. Please understand that was not my intention. I am not saying that what anyone believes in is 'wrong'. It's just not what I believe.

My entire life, the one thing that has given me a sense of peace above all else, the one thing that can calm my mind when everything is falling to pieces, is to go outside at night and look at the stars. I consider the size of the universe, too enormous for my brain to ever comprehend, and that the stars I am looking at are so large and so ancient that everything in my world pales in comparison to their magnitude. They were there in the sky long before I ever was, and they will be there long after I'm gone, and long after any memory of me fades. I believe this is our only turn at life, this is my one blip in time of being sentient, and this is as good as it gets so we'd better make the most of it while we can.

I also know there are other people out there who feel the same way we do, and I would really love to hear from them. I may be waiting a long time, but I am prepared to wait.

Thursday, January 3, 2013

Lots of Calories: The CF Diet

Children and adults with cystic fibrosis need many more calories than everyone else, and the best way to get this is from fat. Add in his requirement for extra salt, and you realise Victor is on the world's most delicious diet.

He started on solid food at around four and a half months old, about the same time as Felix did when he was a baby. Once he had tried a few different pureed fruit and vegetables (as well as baby rice cereal) we moved onto 'everything', at the advice of his dietitian. We started adding butter and a tiny pinch of salt for the extra calories and to get him used to the flavour.

I quickly discovered it is next to impossible to find baby food with any decent amount of fat in it. Pre-packaged baby food typically caps at around 4g of fat per serving (which is around 250ml, or 1 cup). Strictly speaking about jarred baby food here, the best I've found is Ella's Kitchen 'Fabulously Filling Fish Pie' with 9g of fat and Rafferty's Garden 'Old Fashioned Chocolate Custard' at 3.9g of fat. I know what you're thinking...9g of fat! Amazing. Yes, but unfortunately it leaves much to be desired in the taste department. Victor did not particularly enjoy that one and when I tasted it, I understood why.

So generally what I do is buy whatever baby food I want, disregarding the fat content, and just add butter or olive oil to bring the fat content up. 1 teaspoon of butter/oil = 4g of fat, which means he needs 1 full scoop of Creon (his enzymes) to digest it.

Now he has decided that he doesn't want to be spoon-fed mush any more and prefers to eat finger food. The hardest part about feeding him is that unless I'm feeding him bought baby food, I have to work out the fat content of the food so I can give him the appropriate dose of enzymes. Turns out I am not all that great at estimating the fat content of food. (Possibly the only downside to having never dieted).

I have a little book called 'Calorie, Fat and Carbohydrate Counter' by Allan Borushek. It is essentially a giant list of every food imaginable, from fruit and vegetables, meat, take away, drinks, even chocolate covered ants. So from there I look up the food, work out the serving size and how much fat is in it, and then I can work out how much Creon Victor needs to have.

Here we are, having lunch today. The boys had eggs and toast. Victor's toast had peanut butter on it for a few extra calories! Then they got to have Nutella on milk arrowroot biscuits. They usually have them plain but Felix asked for 'something special', and there really isn't much better than Nutella on milk arrowroot.

Check out the huge mess he made with egg and toast!

So for lunch today, not including the scoop of Creon Victor had with his milk beforehand (still breastfed), he had 1 scoop for the peanut butter toast, and then 1 scoop for the egg. Since he only ate about half of it I figured he could have the little bit of Nutella and it would still be 'covered', so I didn't give any extra enzymes for that. (But if I did, it would only be around half a scoop of enzymes).

I love this stage, as it's fun to get a bit more creative with their meals (and it is so much easier when babies start feeding themselves!). Toast is a bit of a winner, which is good because it's easy to add fatty things to it. He had ripe avocado spread on toast the other day and seemed to like it, and peanut butter is a good standby. Last night he entertained himself by grabbing little fistfuls of dinner off my I guess that means he is truly ready for 'big people food'!

Tuesday, January 1, 2013

2012: Year in Review

What a crazy year we've had! I am glad it's over. I try to not be pessimistic but I just think that overall 2012 was not a great year, not just for me but for a lot of people I know. I hope that 2013 will be a lot better and I'm looking forward to starting the new year!

January: I found out we were having another boy. We had the ultrasound done at 20 weeks, which showed a perfect baby growing well. He was extremely active throughout my whole pregnancy. I was really excited to find out we were going to have two boys, as I thought it would be nice for both of them to have a brother so close in age. They could play together and grow up to be friends (at least, that's the theory).

February: Felix had his 2nd birthday and began going to playgroup once a week (which is attended by parents as well). It was a good opportunity for him to interact with children his own age while the parents got to relax and supervise.

March: This month I had a baby shower, hosted by my Mum and my friend Kara, which was beautiful. I spent this month trying to prepare the nursery and get everything ready for the new baby. Phil spent a week away in Brisbane for work, so I was on my own with Felix for the week. It was exhausting! I was extremely happy when he got back home...especially as he picked up Krispy Kreme donuts for us (seriously, when are they going to come to Perth?!).

April: This month we tried to spend lots of time with Felix, in his last days as an only child. We prepared the last few things for Victor's arrival. I found out that I was highly anemic and needed to take a strong dose of iron supplements, as well as red meat every single day and chicken livers once a week. I was told that I may need a blood transfusion at the birth. My c-section was booked in. Phil got a new job: something more suited to his interests, with better pay, and best of all, more time at home with us!

May: Victor Huckleberry was born! Weighing 2900g and measuring 46cm long at 9.50am on the 18th. He was tiny but healthy. The birth went well. Phil's mother came to visit from America, and Victor and I came home on the 21st. The rest of the month was full of visitors coming to see the new baby.

June: Began to suspect something may not be quite right with little Victor. Exactly one month after he was born the phone call arrived from PMH and changed everything. It was not what I wanted to hear and I never expected anything this serious, but at least I had answers and we could help him. We spent that week visiting the hospital every day, learning how to care for him. The next week he was admitted to hospital overnight because the doctors suspected he may have picked up a cold and wanted to be on the safe side, but luckily he was fine and we went home the next day.

July: Life continued as normal. We visited family and friends, took the boys to the park, and went to our appointments at PMH. The diagnosis was weighing very heavily on my mind. I tried to learn everything I could about it, and tried finding other families who had children with CF.

August: I started writing this blog in an attempt to keep our family and friends updated with what the boys are doing, and to meet other people who have children with CF or have CF themselves. I couldn't believe it when people actually read it, and the support I have received through this silly little blog has actually been amazing. It's started to become more important to me. Every page view, comment and email I have received through here or on facebook means a lot to me. It is incredible the difference having a support network makes.

September: Phil's Mum, Donna, came back for another visit, which was really nice and the boys absolutely loved having her here. Victor had a lung function test done as part of a study he is taking part in, and a few days later had a chest CT scan and bronchoscopy done as part of his standard care. We were relieved to find NO bugs! His lungs are looking perfect. Let's keep them that way!

October: A pretty quiet month. We went to look at our new house and decided that it would be perfect for us. The boys and I went to playgroup, had visitors over, and had fun at Halloween even without trick or treating.

November: We participated in the Great Strides Walkathon to fund research and services for Cystic Fibrosis, and reached our goal by raising over $2000. I don't think people truly understand how much it meant to me that people donated to our cause, shared our fundraising page, and walked with us. I still tear up just thinking about the generosity people showed towards us, and the love they have for my boy.

December: Such a busy month. We moved house, did all our Christmas shopping at the last minute, put up the tree and decorations at the last minute, and on Christmas Eve I passed my driving test which is probably classified as a Christmas miracle. We had a lovely Christmas with family, and had a quiet New Years' Eve with my brother and his girlfriend.

I am hoping that 2013 is relaxing, boring, and uneventful! maybe that's a strange thing to want but after this rollercoaster of a year I'm ready for a bit of boredom.

Happy New Year, everyone! A huge thank you to everyone who has been reading, commenting, and emailing; it means so much to me. I hope 2013 is everything you want it to be!
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