Saturday, December 29, 2012

We're Melting...

We are currently going through a heatwave and the temperatures are stifling, energy-draining, and unusually for Perth, fairly humid. There's not much we can do but wait it out. The extreme temperatures should go down by the new year but we'll have more of it in the months to come. I am more of a cold-weather girl so this is just about all I can take. Victor seems to be bothered by the heat too, although Felix doesn't seem to mind.

Our new house has ducted air conditioning, which is evaporative. It helps a lot, especially if you are sitting down and resting in a place right under the vent, but it doesn't lower the temperature in the house by much. In the back yard we have a large undercover area with a ceiling fan, which is where Felix has been playing when he wants to go outside, although I do keep him inside for most of the day.

So far our strategy is to crank up the air conditioning system, do plenty of water play outside, eat icy poles and watermelon, and shut the blackout curtains in an attempt to keep the hot sun out.

I will never forget the summer of 2009-2010, when Phil and I lived in Geraldton. It's about five hours north of here and much hotter. I was almost due with Felix and was about the size of a small island, our house had no air conditioning (we eventually did get a small portable unit) and the temperatures were frequently within 40-45C. (That's 104-113F). I resorted to wetting cloth, such as wash cloths or small towels, and freezing them. Then I would put the frozen cloth on the back of my neck and on my forehead, and try to not move much.

We haven't quite reached that stage yet, and I am looking hopefully at the weather reports telling me that things should cool down by the middle of next week.

Poor little Victor has been uncomfortable and sweaty though. I actually noticed what looked like a fine, white powder in his hair the other day, and I realised it was salt from his sweat. He is tasting extremely salty these days. Saltier than the ocean. It must be because he's been sweating, although it really started becoming noticeable a few months ago. I washed his hair that night but the next day it was full of salt again. His hair is quite dark so the white salt is easy to see if you look closely. I hope it becomes less noticeable as his hair gets longer!

Any other ideas to help us stay cool?

Victor eating watermelon in his little mesh feeder, watching Felix run around outside.

I have no idea why Felix is standing in the flower bed. Please excuse the mess as we're still organizing the back yard!

Wednesday, December 26, 2012

Merry Christmas!

Merry Christmas everyone! I hope you all had a wonderful day. This year was very special as it's Victor's first Christmas, and Felix's first as a big brother.

The lead up to Christmas started a month in advance with the arrival of a very cool advent calendar made by their Aunty Lulu.

Inside each box was either a small toy or chocolate/jellybeans. The toys included finger puppets, a toy hedgehog, a mini ceramic mug with Santa on it, toy cars and Christmas tree ornaments. I think I was just as excited and curious as they were each day to see what would be inside the next parcel.

Felix and I did a little bit of Christmas craft, not as much as I'd like because we moved house in early December so we were a bit too busy. We still made a paper chain, a wrapping-paper tree, and Felix did lots of stamping with Christmas-themed stamps and paint.

Felix was very excited about Santa's arrival and has practically memorized 'The Night Before Christmas' (really, he's pretty good).

Looks like they got on Santa's nice list this year!

Our little tradition is to have apple muffins for breakfast on Christmas morning, which lead to a bit of an issue when Phil made them this morning. The pavlova which had been sitting in the oven all night to cool may have been cooked twice when he went to pre-heat the oven...whoops. Luckily it turned out alright!

We headed out to my aunt and uncle's house for lunch with all the family, and had the traditional hot turkey and ham in 40 degree heat (that's 103 Fahrenheit).

Christmas continued into Boxing Day as usual, as we headed over to my Dad's house for Christmas round 2. Ham, salads, and a mountain of desserts followed by a swim in the pool. It was Victor's first real swim, and the first time Felix really started getting the idea of kicking his legs to swim. I have a feeling we'll be back to visit here a lot more now that the summer is really starting to heat up!

Saturday, December 22, 2012

I'm Still Really Angry

Before Victor was diagnosed and everything was normal and fine, we saw a child health nurse which is what's usually done when you have a baby. Their job is to come and visit you on baby's 10th day of life, check to see how things are going, write it all down in the 'Purple Book' which is the child's health record and give you 'helpful' tips on how to care for the baby. It's a pretty simple job.

Unfortunately, the child health nurse I got with Victor was completely incompetent even for this simple task.

When she came to visit us when Victor was 13 days old, we placed him on the scales and saw he had actually lost weight. Losing weight is normal for a baby in their first few days, but they should start to re-gain that weight shortly after coming home from the hospital. The child health nurse did not seem concerned. She said it was probably due to us using a different scale, and we should weigh him again in a weeks' time. I told her about the strange poo I had been seeing: not at all like a normal newborn poo. She dismissed this concern.

This little series of events went on for four weeks. Every Thursday I would trek over to her clinic to weigh Victor, and each week he had lost more weight until he had dropped off the growth chart entirely.

At no point did she express any concern. At no point did she recommend I take him to a doctor. At no point did she say this wasn't normal.

By the time his newborn screening had been processed, he was four weeks old and still far below his birth weight. I look back on photos we took of him during that time, and I am shocked at how sickly he looked. Pale and gaunt, a rash covering his tiny expressionless face. He barely woke, he smiled wanly at Felix, he slept and ate and screamed until he was swaddled in layers of blankets.

I spent every night looking up possible illnesses on the internet. I told Phil that I was really worried about him but couldn't really explain why. Nothing I looked up seemed to fit, and I was being told by the nurse that he was fine, so I tried to not worry.

When we finally discovered what was wrong, it took me a while to remember the nurse. But then I did. And I started getting really, really angry at her. There was clearly something wrong with my baby. He was losing weight, excessively. He was not thriving. He was very unwell. The doctors and nurses at PMH were shocked that she had told me that was normal. They wondered what on earth was going on out there, in the child heath centres?

Even thinking about her and going back to the centre made me so upset that I became shaky, but he was scheduled in for his six-week checkup with her. I decided to keep the appointment and tell her what had happened.

"He has cystic fibrosis," I told her. "He is pancreatic insufficient, it's why he kept losing weight."
"Oh, so it's nothing we did then," she replied. "Nothing wrong with the milk or anything."
This was so far off point that I really had no idea what to even say back to that. She was so disinterested in me, my child and the diagnosis that there was really no point to us being there anyway.

I never expected or wanted her to diagnose Victor with anything. That is not her job and clearly beyond her scope. What I wanted her to do, was to say at some point, that his weight loss was not normal. That his poo (which she never looked at) was not normal. That I was not being crazy. That we should take him to see a doctor, find out why he was losing so much weight.

I am so grateful for that newborn screening. I don't want to think about what could have happened if we'd never screened for cystic fibrosis, and if I had continued to listen to that woman.

That is why I don't think she should have her job any longer. If she can't recognise the basic truth that a baby should be gaining, not losing weight, then what exactly is she doing there? What is she saying to other parents who come to her with concerns about their babies? Is she telling other parents that it's fine for their baby to drop right off the growth chart?

If she continues with that standard of work then she is going to seriously harm a child one day when she brushes aside the parents' concerns as well as clinical symptoms like she did with Victor and me.

We have not been to any further appointments with her, but I hate knowing she is still working there and still doling out advice to other parents. I hate that she ignored us completely, put my child's health in danger, and just couldn't care less about it. I want her out of that position before she does any more damage.

I don't think about her often, but when I do, I get incredibly angry and outraged. I have her full name and signature in Victor's heath record, and I'm seriously wondering if there's anything I should do about her.

Saturday, December 15, 2012

Our New House

We have been in our new house almost a week now, and I love it! Obviously things have been very busy over here so I have barely been on the internet at all but now I am trying to catch up.

We still have boxes to unpack and we're living in a vague sort of chaos but we're getting there slowly. The house has new carpet and paint, a large back yard for the boys to play in (including a big undercover area so they can even go out in the rain, and a vegetable garden), and it's close to family, friends, and walking distance to schools and shops. Love it!

The best part of all is that we're renting this place from my aunt and uncle, so we have a feeling of security knowing that this will probably be our house for a few years at least and that any maintenance issues will be resolved immediately. And it also means we have the freedom to treat this place like our own: we wall-mounted the TV (for both safety and aesthetic reasons), we can put pictures up on the walls, secure tall furniture to the walls, put up shelves, curtain rods, change light fittings, put grass down in the garden. All the little things that you can never usually do in a rental but really make it feel more like home (and in the case of securing furniture to walls etc, a safety issue with small children!).

I still can't believe this amazing opportunity has come our way. We are so grateful and feel very lucky.

The past few weeks have been crazy: I stupidly packed up the kitchen quite early so we've been living off take away food and microwave junk for a few weeks now. I made roast chicken and vegetables last night though, so back to normal life please!

Felix has his train table in his bedroom now, which he loves. In fact, all of his toys are in there...just! I really want to get some kind of storage unit for his toys and books.

Victor's room is looking a bit packed with all the furniture in it, including things we don't use (like the bassinet) so I am going to sort it out and put some things into our storage room...yes, we actually have a storage room. Finally. 

Both the boys have adjusted really well and haven't seemed to have noticed the change. They are both sleeping like usual and everything's normal during the day so that's a relief.

We have also left it until now to start Christmas shopping and preparation, mostly because we didn't want to cart more than we had to between houses during the move. So Felix and I have not done the Christmas craft I was planning! But we have some Christmas stamps and good-quality Christmas-coloured cardstock so we did some stamping the other day. I also picked up some themed fabric and will be making some decorations, and Felix picked out some adhesive foam letters and has been having lots of fun sticking those to paper to make a letter collage. Oh well, the supplies will still be here next year I guess!

And today we saw Santa...

Felix was a little overwhelmed but went and sat next to him. Victor was ready for a nap and seemed to like the fact that he was snuggled into velvet cushions!

Sunday, December 2, 2012

The Idea of School

It's suddenly dawned on me that Felix will be three years old in February, and therefore old enough to attend 'Pre-Kindy' or a 3 year old program, which is usually one or two mornings a week. This realization also made me think about school even more than I already do, as his future education has been on my mind almost constantly since before he was even born.

I didn't have the best experience at school, particularly primary school. Just about everything that could go wrong did go wrong. I had trouble making friends, and it's something that I'm still not good at. While it used to upset me, now I have just realised that I will always be a bit socially awkward and I'm ok with that.

I find the inherent structure of school to not be all that great for actually making friends. You are lumped in with a group of children who happen to be the same age as you and live nearby; that could very well be the only thing you share in common. It's not that you aren't given opportunity to interact with the other kids, it's more the issue of whether they are actually the people you would like to interact with. While it's good to be able to interact with all kinds of people and find something to talk about, it's a bit tough being stuck with them day in and day out for around seven years. I usually got along better with the kids I met in after-school activities.

The other main issue I had at school was the complete lack of help I had with maths. I have really struggled with maths right from the beginning. I'm not stupid; I just needed it to be explained in a different way. Everyone learns differently; the three learning styles are kinesthetic, visual and auditory. A good teacher will ensure they present the same lesson three different ways to cater to each student. Unfortunately this certainly didn't happen in the classrooms I was in as a child.

What really angers me though is that every primary school teacher I had knew very well that I needed serious help with maths. I needed a program, separate lessons, a tutor, something. Instead of getting help, I got yelled at and told that I had 'put a wall up' and 'hated maths'. Neither of these comments were constructive or helpful, and instead of making me 'work harder' or whatever the teacher's intention was, they sent me in the opposite direction so that by the time I got to high school I had given up completely.

The incompetence of the teachers I had in primary school is astounding and is definitely something I worry about with my boys. Because of my experience, I intend to stay very involved with their schooling and my goal is to know at all times exactly what is going on in the classroom. Perhaps this is smothering or naive of me, but the fact is they are my children and I know them much better than any teacher ever will. I have their best interest as my top priority, whereas the teacher has at least twenty other children to worry about as well. Even if she is the most caring, dedicated teacher on the planet, she just won't be as concerned about my boys as I am. And that's fine, it's not her job to be their parent, but the teacher will be in charge of their care for about seven hours a day and directing their education for at least a year.

I often read homeschool blogs or look at homeschool curriculums. It's something that has sparked my curiosity and continues to present many advantages the more I learn about it. And more recently, it has become something I find myself seriously considering. I previously believed that homeschooling was akin to brainwashing and that the children would never learn to interact in society; having several homeschooling friends has shown me that this is not at all the case. Homeschooling would give me the advantage of tailoring lessons to suit the boys' interests, ensure each subject is covered adequately, completely cut out the problem of them having to complete 'busy work' or homework (meaning work completed outside regular lesson times, cutting into family or leisure time). It would mean their day would be more interesting as we would be able to go out every day and continue the lessons in 'the real world' (this is something that really appeals to me).

One of the biggest advantages for me is the benefit posed to Victor. Obviously he is quite far away from going to school, but I am really stuck on this issue. Homeschooling would mean we would have plenty of time to fit in his daily physiotherapy. It would reduce his contact with sick classmates: while obviously we can't protect him from every person out in public with a cold (or worse), my experience working in child care has taught me that it is impossible to have a class full of perfectly healthy children. Someone always has a runny nose, a cough, a cold. In other locations it's easy to remove ourselves if there is someone nearby with a contagious illness, but it's more difficult in the confined space of a classroom where he can't just walk out. While we can certainly request to be notified if there is a sick child at school so we can go pick him up, I can't see this being practical at all. I see him missing a lot of school.

The other problem I think of is what if Victor's teacher does not understand the importance of keeping him away from anyone who is sick? I've found it difficult enough to explain to people as it is. If Victor catches a respiratory illness from someone he could potentially be hospitalized. Is it worth the risk?

Victor would also need to take enzymes at school. My preference would be for the teacher to have these at her desk so he could take them in class before lunch rather than go to the nurse's office, and then for him to take them himself when he is older. But I'm not sure if the school would allow that; they might require him to go to the nurse's office every time he eats anything. Then there is the fact that they might forget to give him enzymes. One time won't harm him, but if they are routinely 'forgetting' then it will cause problems for him.

Of course, this is assuming that his treatment does not change in the next five years, but of course it will. There will be additional medications to take, additional therapies. Cystic fibrosis is always going to be there and will always be part of his life, but I don't want him to be ostracised for it.

On the other hand, I also feel that regular school will be good for the boys. It is normal for me for children to go to a traditional school. I don't want to keep them in a bubble, and while I would ensure they did outside activities with other children and provide plenty of opportunity for interaction, I am worried that it would become too easy for me to shelter them too much. I also worry that I lack the organization to effectively homeschool. I want the boys to be able to teach me things when they come home from school and to learn about other points of view, even the ones I don't agree with. Having them in regular school would enable me to go back to work (ideally teaching, mainly for the good work hours and the fact I will get holidays off with them).

I have not really made a decision and it's probably something I will think about for a long time. At the moment we have defaulted to the local public school. It's small, which I like; the test scores are good, the website seems promising (no spelling mistakes!). I'm sure that once I give them a chance and get over my inherent mistrust of leaving my children with non-family members we will love the school. The other thing is that it doesn't have to be one or the other; we can see how things go and review the situation later if we need to.

Does anyone have advice for me on this topic?

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!

Wednesday, October 31, 2012

Happy Halloween!

It's Halloween! My second favourite holiday, even if it's not widely celebrated here in Australia.

I have been going on and on about Felix's Halloween craft, and we have been working on it all month. Finally I will show you what he's been busy making!

The first thing he made was Frankenstein's Monster. This was made from an empty Milo tin. He painted it green and glued on one eye, tissue paper hair and drew on a mouth and arms with a Sharpie. I added teeth so the mouth was distinguishable. If we ever make this again, I think it would be good to add lots more 'bits', perhaps sticky dots for spots, bolts on the side of the head, etc.

This guy originally had two eyes, but Felix decided he was better with one. The whims of a two year old!

The next thing we made was a glass lantern. I'm really happy how this turned out. Felix glued strips of orange tissue paper to the outside of a clean glass jar, and I cut out Halloween-themed silhouettes for him to stick on. We placed a tea light candle inside and it looks really effective.

A bit blurry, but you can see how it looks with a candle inside.

Our final craft was really made by me, as I underestimated how tricky this was. I also don't have either a guillotine or a hot glue gun, so this is held together with kids' craft glue, a fair whack of sticky tape on the inside and willpower.

Then it was pumpkin carving time! We don't have a pumpkin carving kit available here in Australia (at least, nowhere I've ever seen) so we have to try our best with the regular kitchen knives. We decided on a Jack Skellington design (from The Nightmare Before Christmas). Felix was pretty convinced that he needed to eat the pumpkin.

Finally, Halloween day! The day was pretty slow to begin with as for the most part it was just an ordinary day with Phil at work. I figured I would get lots done during Victor's long after-lunch nap, but of course this was the one day where he refused to sleep in his cot...meaning I had to hold him the whole time. It made me wonder if he was catching the cold that is making its way through my house, but he seemed fine in the afternoon so I guess he just needed a cuddle. Felix and I watched The Corpse Bride to fit with the theme of the day!

Felix the robot.

This meant that the afternoon was a mad rush to get everything done, but we got there (mostly)! I made Felix a robot costume from my cardboard stash and Al foil, with a little aluminium pie dish and sparkly pipe cleaner for his hat and antennae. I didn't really have time or supplies to make a costume for Victor, but luckily he had a few little outfits that did the job, so he got to be Captain Kirk from Star Trek.

Victor in his Star Trek uniform! He was pretty tired and cranky by this point.

When Phil got home, we had a Halloween-themed dinner. It consisted of Blood Soup (that would be tomato), Spider Spaghetti (spaghetti with hot-dog 'spiders' in it) and Jelly Worms for dessert. The 'blood' soup came straight from the can, as I know my limits and knew I would not have time for elaborate cooking. The spaghetti spiders were from an idea I had seen on the Internet a few months ago, and I think the concept is cute for Halloween but unfortunately they were fairly disgusting. Felix ate them though. The Jelly Worms were also something I had seen online, but I didn't follow the recipe exactly (should have added cream to make the worms opaque) and they were really difficult and fiddly to prepare. But they still tasted like jelly!

Spider Spaghetti

The kids are in bed and we are relaxing in front of the Simpson's Halloween Specials, eating all the chocolate we bought for potential trick-or-treaters (none, of course!). And I am thinking of ideas for next Halloween...bigger, better and a bit more organization!

Tuesday, October 30, 2012

More Illness and a General Update

Phil and Felix have both caught a cold again. It's nowhere near as bad as when they caught the flu, but I am still trying to keep Victor healthy and away from the germs. So far Felix's symptoms seem to just be a really runny nose and a fair bit of sneezing, and he was up a bit last night because it's hard to sleep when you can't breathe through your nose. I'm hoping Victor's preventative antibiotics will help him stay healthy. Since he is also on vitamin and mineral supplements, breastfed and definitely getting his fruit and veg in every day, he's probably the healthiest out of all of us!

Victor has also started rolling on his own! On Sunday he rolled from his back to his tummy while playing with his little baby play gym. He was so proud of himself, once he was on his tummy he gave us all big gummy grins and kicked his little legs around like crazy! He has been trying to roll for a little while and has been able to get almost all the way over, but his arm has always been in the way so he has just popped right back over again every time. Finally he figured out what to do with that arm.

In other news, I have started exercising because I realised that I don't have any excuse not to! I don't have any illnesses or injuries, there is no reason for me to be sitting around. I started going to a stretch and conditioning class on Sunday mornings, run by a ballet teacher. We do lots of stretches and strengthening exercises. It feels really good to get back into that; I used to do ballet but haven't danced for about five years now. I have also started running three times a week using the Couch to 5K program. It's an app for your iPod or iPhone that basically teaches you how to run over nine weeks. You always start with a five minute walk to warm up, then it tells you to run. The first week you run for 60 seconds, then walk for 90, and repeat six times. It will tell you to walk for five minutes to cool down and then stretch. Each week the amount you run increases so that ideally by the end of the program you are able to run for 5K, or 30 minutes. I highly recommend it to anyone wanting some cardio exercise or wanting to improve their fitness level.

Running has also made me realise the importance of exercise for those with CF. I don't have any lung issues as far as I'm aware, and when I run I definitely feel my lungs burning and it feels as though they are being cleared out. Victor's CF team have told me that it is important for him to get exercise as it does help to clear the lungs and just keep him fit and strong in general, which would help when/if he gets a lung infection. Now that I'm doing it myself, I can really feel the benefit and understand how it would help to clear and strengthen the lungs.

Felix has been working on his Halloween craft but we still have a lot to do before Halloween tomorrow! We are giving playgroup a miss today because his nose is running like a tap and I don't want anyone else to catch it, but he is still well enough to stay home and do a few last projects with me. Today I want to do some papier-mache and start making the boys' costumes. We just got back from the shop to pick up a few last Halloween items and Felix had a bit of an emotional breakdown when we got home, so I'm guessing he really doesn't feel well at all. He is still interested in doing a bit of craft and painting and is riding a little car around the house so I think he'll be fine, he just needs some rest.

Thursday, October 25, 2012

Eat the Food, Victor!

The thing about babies and children is that as soon as you think you have things figured out, they go and change everything on you. This can sometimes be an improvement, but in my experience it very rarely is.

Victor had been eating his solid food very well. He has three meals a day: breakfast, lunch and dinner. He was eating a variety of food, including meat, fish and dairy. We had just started adding butter and a hint of salt to his food for added calorie content and to get him used to the taste of salt as he will always need to follow a high calorie, high salt diet. 

I had been adding either one or half a teaspoon of butter to his pureed foods to make them contain 4g of fat. This way he could have one full scoop of his enzymes to digest the fat. Everything had been going really well, he was happily eating his food and things were great.

Then, of course, he suddenly decided that he was not going to eat his food any more. I figured it would be best to not make a big deal about it, especially since he's still breastfed and had no aversion to his milk. But the refusal to eat went on for days; probably almost a week. This normally wouldn't greatly concern me, except that I was giving him his enzymes before feeding him and he wouldn't eat. Surely it's not good for him to have all those enzymes with no fat to digest?

So I had a bit of a freak out about the whole situation. He is showing signs of being every bit as stubborn as the rest of the family which really shouldn't be a surprise. I tried getting in contact with his dietician on Friday, but she was busy all day and finally called me back just as she was leaving work, and of course I missed the call. So after a really frustrating weekend of Victor not eating anything at all (except his milk), I finally got in contact with her on Monday. 

His dietician's advice was to treat the food refusal as a phase. She asked if he had been unwell, which he hadn't been, although what I saw in his nappy on Monday morning could only be described as an abomination. She said perhaps his tummy had been a bit upset recently (although he had been his happy, usual self, sleeping well etc). She also said to cut back on the amount of fat I was adding to his food because it could be a bit too much right now, and we will slowly build it back up over time.

I tried giving him some yogurt for breakfast. At first he started to get upset when he realised I was going to feed him, but then once he actually tasted it he stopped fussing and decided that food was actually pretty good after all! He ate half the bowl that I gave him; less than he was previously having, but a huge improvement from the past few days. After that, he's been back to eating. He is still having less at each meal than he once was, and I am adding only half the amount of butter or oil to make it up to 2g of fat (half a scoop of enzymes) but at least he is eating again.

I am also wondering if perhaps he wants more texture in his food? I was eating a muffin the other day (cheese and bacon, made by Felix!) and holding Victor on my lap at the same time. He made it pretty difficult to actually eat it because he kept grabbing it and trying to put it in his mouth. I realise he does that to everything, edible or not, but I decided to give him a little taste anyway. He went crazy for it so I let him have a few more miniature bites (he ate such a small amount that there was no need for enzymes). Tonight he just about threw himself headfirst into my plate of chicken stir fry so I gave him some grains of rice and he did manage to eat them and seemed to quite enjoy it. 

Felix with his cheese and bacon muffins!
Felix has been busy doing lots of Halloween craft; so far we have made a monster head from an old Milo tin and a lantern with Halloween silhouette shapes on it. We have a few more projects to make, so we will be pretty busy for the next few days. I will post photos once everything is done!

Friday, October 12, 2012

5 Month Checkup

On Thursday, Victor had a checkup with his doctors to see how he's going and to make any changes to his treatment as he's getting older. We also met with the researchers in charge of the study he's involved in.

Victor has moved up to the 'big kids' clinic, which is a large outpatients clinic that sees lots of different patients. Along with Respiratory medicine there are a few other departments operating there. There were no other patients with CF there that day so we could sit in the waiting room; if there are other CF patients or there's a very long wait we will be given a pager so we can walk around and go somewhere else while waiting to see the doctor. It's still at Princess Margaret Hospital, just on a different floor.

When I arrived, a researcher was waiting for us so I sat down with her in the waiting room and we went over the study diary I have been filling in. We then weighed and measured Victor (he's up to 5.9kg!) and we also took his temperature, heart rate and breathing rate for the study.

We then went to see the physiotherapist. She is happy with how he's developing; we went through a few more exercises and stretches he can start doing now. He's not quite rolling over yet so she taught me how to encourage him to roll over. He's a very relaxed baby and is pretty happy wherever he is, and I honestly just think that he doesn't want to roll around. But I actively encouraged him to roll over today and he can get up on his side quite easily so I think it will happen soon.

Next was the dietician, who is also very happy with his weight gain. We talked about adding more foods to his diet, he is now able to eat anything at all so we can start giving him high-calorie food to increase his weight. He's been having pureed fruit and vegetables with baby rice cereal twice a day for a few weeks and absolutely loves it; now we can start feeding him three meals a day and add butter and salt. The butter is for the fat content and the salt is basically so he gets used to the taste, as he will need lots of salt to stay healthy. Other foods that will be really good for him are fish, meat, avocado and eggs, so we will start giving him those very soon.

The bloodwork taken during his CT scan and bronchoscopy showed that he is low in Vitamin D and Iron. We're starting to give him Vit D and Iron supplements now, in addition to his usual vitamin supplement (VitABDECK). He had the blood test done before he was on any solid food so hopefully his levels will improve now he is eating 'people food' and he won't have to be on these supplements for very long.

Then we saw the doctor, who went over the results of the CT scan and bronchoscopy again with me. He looked at the CT images and said that Victor has some of the healthiest lungs he's ever seen, which was really good to hear! There is no sign of damage at all and no bugs growing in there either. It's great to be off to a good start in life.

While I was with Victor in the outpatients clinic, Felix was with my Mum playing on Level 7 again. He is potty training and doing really well. I packed his little potty seat in his Cars backpack with lots of spare clothes so Mum could be prepared, but he was so good and didn't have a single accident!

We picked up more medication for Victor, the new supplements and some more Creon (enzymes) as we were running low. The researcher had been waiting for us the whole time and walked us to our car with a box full of the study antibiotic/placebo. I felt bad that she had been waiting the whole time we had been in the clinic (three hours!) but she told me it's her job to follow Victor and she gets paid to be there (and apparently three hours is pretty quick).

The doctor also signed paperwork for our travel insurance application for our trip next year. He was surprised that most insurance companies will not cover cystic fibrosis, and said that he was happy for Victor to travel as he is so healthy. Now we just have to keep him that way!

Aside from the appointment, we have been home a fair bit recently because of Felix's potty training, but he is doing so well that we can venture out a bit more now. Our back yard has been out of action for a few weeks as the fence is being replaced, but it looks like it will all be finished by next week so we can finally go out and play again! Unfortunately to replace the fence they had to chop down the big frangipani tree out there; it was the only source of shade and quite frankly the one redeeming feature of this house. I might have to look into getting something out there to give us some shade. I'm thinking of getting some jasmine climbers in pots to 'replace' the garden that was removed. Felix has planted some capsicum seeds (bell pepper) and they have started to sprout! We are also planning on doing some Halloween craft this month; Felix loves painting and gluing so I have a few ideas of cool things we could make.

My boys!
Victor is looking a lot older now!

Capsicum seeds are sprouting.
What's left of my back yard. Check out the neighbour's PERFECT garden!

Monday, October 8, 2012

Drug Study

Victor has been entered into a drug study, which I believe is called 'A Phase 3 Multi-Centre Randomised Placebo-Controlled Study of Azithromycin in the Primary Prevention of Radiologically-Defined Bronchiectasis in Infants with Cystic Fibrosis'. Catchy!

What this basically means is that there is an antibiotic (called Azithromycin) which has been shown to have anti-inflammatory properties as well as being an antibiotic. Apparently a lot of the damage to the lungs occurs from inflammation, not just infection, so the point is that hopefully this antibiotic can actually prevent that inflammation from occurring in the first place. I believe this has been long used for older CF patients, but the researchers want to find out if it is helpful for babies to start taking as a preventative (all signs point to yes).

It is a double-blind study, which means that we don't know if Victor is receiving the actual medicine or a placebo, and the researchers don't know either.

He gets 1.5mls of the antibiotic/placebo three times a week: Monday, Wednesday and Friday. Every time I give it to him I have to write in the study diary that he received it, or the reason why he didn't. I also have to keep all used bottles of antibiotic/placebo and return them to the researchers for accountability.

I have also been given a nasal swab kit in an insulated bag. If Victor catches a cold or has any other 'health event' then I have to take a swab from his nose and store it in the freezer. I can then transport it to the hospital in the insulated bag at the time of the next checkup/meeting with researchers. If he does have any kind of 'health event', such as a cold or a fever, I have to write that down, along with any other medicines he received aside from his usual ones. Vaccinations count as additional medicines, so I have to write down when he gets those too.

It sounds like a lot of extra work, as he will have this on top of his usual medications and treatments, and when we first started I was a little overwhelmed because it seemed confusing. Then I actually read through the information and realised that it's not really, just an extra medicine three times a week. I already tick off when he receives his other medicines so it's not anything extra.

Because he is in the study, he will have some checkups with the researchers in addition to his usual checkups with his CF team. The researchers also took data from his last procedure, the CT scan and bronchoscopy, even though that was part of his regular treatment.

Ideally, he will be in this study for three years. I really hope he is actually getting the antibiotic and not just the placebo, although we will have no way of knowing which he is getting and there's no one I can ask anyway. Possible side effects of the antibiotic would be getting an upset stomach and diarrhea, which is a common side effect of pretty much every antibiotic. If he did get these side effects we would stop taking part in the study. It's one of the gentler antibiotics apparently, quite safe and used for a very long time so the effects are very well known. The benefit of taking the antibiotic over the placebo is that he would be getting medication that would theoretically prevent lung damage from inflammation and stay healthier longer. And just because he is in the study he gets additional check ups so that can only be a good thing really!

Tuesday, October 2, 2012

CT and Bronchoscopy Results

This post has been a long time coming because I have a photo to go with it, but it seems to have been lost on the magical Apple 'Cloud' so I will update this entry when I find it, or just take another one!

So this is just to update everyone about the results of Victor's CT scan and bronchoscopy.

His lungs are looking really good, the CT images show that his lungs look normal with no areas of damage. They did not find any bugs during the bronchoscopy which is great news! He is keeping healthy.

He has also started on 'people food', baby rice cereal with fruit puree stirred through. So far he does not like banana but he loves the rice cereal and has been having it with apple, pear and cinnamon stirred through. He has it once a day for lunch.

Felix has been toilet training this week! He has been ready for ages but with everything going on I sort of forgot about it. We officially started yesterday, for the first time ever he agreed to wear underwear instead of a nappy. We've had lots of accidents and I expect many more but he has definitely realised what's going on now and today we had our first success! In fact, he has been taking himself to the potty all day but unfortunately he is so convinced that he has to wear underwear that he won't take it off to sit on the potty...but at least the right thing is happening in the right place!

I also received a delivery of the study drug (either an antibiotic or placebo) that Victor will be starting next week. This weekend I will get myself organized with it and read through all the paperwork again.

But something more fun is that we are planning to go to Disney World next year! I can't wait and have been spending a lot of time on the Disney website, going through our Disney travel books, watching the Planning DVDs and looking at planning websites. Yes I might be a little bit obsessed...there will probably be a 'planning file' created at some point in the very near future and a complete printed and bound itinerary of the trip, finished off with Disney font and photos from our last trip. Sad, I know!

Saturday, September 22, 2012

CT Scan and Bronchoscopy

Finally it's the end of a very long and stressful day. Victor had his firct CT scan and bronchoscopy today. This is part of his standard care, it's basically to have a good look at his lungs and see if there are any areas where damage might have occurred, or if there is any sign of infection or inflammation. By doing these tests before he shows any signs of infection we can hopefully prevent any permanent damage to his little lungs.

Once again, our day really began the night before. I got everything ready so we could leave the house by 6.10am and set my alarm for 4.40am for Victor's last feed before he had to begin fasting. I had received fasting instructions the day before: he had to stop eating solid food from 2am (irrelevant, as he doesn't have solids yet) and could have the last breastfeed before 5am. So I woke up to feed him in time for him to begin fasting, went back to bed for an hour, then it was time to go.

We arrived at PMH at 6.45am and began upstairs in the Same Day Procedure Unit. We filled out lots of paperwork, weighed Victor and put him in a little hospital gown. The anesthetist spoke to us, as did a doctor and several nurses about what was happening today and gave us the opportunity to ask questions. Just about everyone asked the same questions, with one of them being when did Victor last eat. I told everyone who asked that I last fed him at 4.40am, but he had a tiny bit of apple puree to take his enzymes with at the time as well. I had completely forgotten about that until I had already given him the apple, but I figured that since it was such a tiny amount it wouldn't really matter. No one really seemed to know if it was okay or not, until the anesthetist told us it was fine. We went downstairs to the radiology department, where we met with more doctors and nurses.

This is where I have to mention that 99% of the time, nurses are wonderful people who do fantastic jobs and are really caring and good at what they do. But sometimes, they are not so fantastic, and unfortunately today we ran into a couple of nurses who perhaps needed to go on holiday or something.

We sat in the waiting room, and had more nurses come in to speak to us. Once again we were asked when Victor last ate, so once again I told them at 4.40am and he had a small amount of apple puree at the same time. One nurse then said "Oh. He had apple puree? Nope, he wasn't supposed to have that. Have you told anyone about that?" we said yes, we've told everyone. "They didn't tell me that," she said to the other nurse in the room. "Did you tell the anesthetist?" Yes, we answered. "Well, look, you weren't supposed to do that so we'll probably have to delay everything. We've had problems with this before, there's strict rules about it. Next time do not give him the apple puree." She decided to tell us off in a very passive aggressive way.
"So next time we just don't feed him at all then? Because we have to give him enzymes before he eats, otherwise there is just no point in feeding him as it will go straight through him, he will get a very sore stomach and diarrhea," we explained to her. She didn't actually answer that, and just kept saying that now everything would have to be delayed. Luckily, this is when the anesthetist came in and said everything was fine, the tiny amount of apple puree did not affect anything and we could go ahead as planned.

Another nurse told us that if we wanted to, one of us could take him into the procedure room and stay with him as he went off to sleep. I said that if it was okay, I would like to stay with him for that. When it was time to go in, yet another nurse came to take him. I said that I had been told I could go in with him. She asked me who had told me that, and seemingly reluctantly let me come in and stay with him as he was put under anesthetic.

I carried him into the room, which contained a CT scanner and another table, which is the one I placed him on. He smiled around at everyone as the little mask went over his nose and mouth and he wriggled around and then began to close his eyes.
"Okay, thanks for your help," the nurse said. I found that comment to be quite condescending. It felt to me as if they really didn't want me in there at all and thought I was being...not really sure...overprotective? Annoying? Either way, the feeling I got was that they would roll their eyes about me once I left. It was a really terrible attitude for them to have, especially on such a stressful day for us. I understand this procedure is not a big deal to them, but it is for me. This is the first time my baby had gone under anesthetic and the first time he'd had a procedure away from me, not to mention the fact that he is only four months old. But I knew that he would be in good hands with the doctor doing the procedure and the anesthetist looking after him.

The procedure, as described to me, was having a CT scan first to look at his lungs. This is to identify any potentially damaged areas (hopefully none) and just to have a good idea of what his lungs look like.
The bronchoscopy was next. This is where the doctor inserts a small camera on the end of a flexible tube down his throat, into his lungs. They looked at the airways to see if there were any signs of inflammation, the colour and quantity of any lung secretions, and to see if the airway stayed open while he breathed instead of flopping closed. They also squirted a small amount of saline into each lung and sucked it back up, taking mucus with it. This will be tested for various germs in the lab. The doctor also did tracheal brushings, which is scraping a few cells off the trachea to be tested for signs of inflammation.

I went back into the waiting room to join Phil and Felix, and that's when we spoke to a researcher about the clinical trials we are participating in (that's for another post).
We took Felix to the hospital Cafe and gave him some breakfast, and then we were told that Victor was all done and in recovery. I went back upstairs to wait for him while Felix finished breakfast. Phil then took him to play in the 'Megazone', the playground on Level 7.

I went in to see Victor, looking very small on a big hospital bed. He was just in a nappy, his little hospital gown had been taken off at some point, and he was wearing a peach-coloured beanie. He had an IV line placed in his hand and a monitor on his toe, measuring his heart rate. He was beginning to wake up and was seemingly disoriented and very unsettled. I picked him up but he was still very upset. I asked if I could feed him, but the nurses had just called for the Ward staff to come and get us and they didn't want me to start the feed only to be interrupted. Personally, I think that would have been worth the risk as he just became more and more upset. Not even his salt supplement helped (it usually settles him) and of course, his dummy was in the car! The Ward staff arrived and we were handed over to them and went up to the Same Day Procedure Unit.

I gave him a feed but he was still very unsettled and basically cried through the attempt. Phil and Felix arrived with the dummy, and I was able to rock him to sleep and finally he settled. The Ward nurses did a few obs, checking his heart rate and listening to his chest. He had a little bag in his nappy to collect a urine sample, so they took that off and took out his IV line and the heart monitor still on his toe. He also had a pretty large bandage right at the top of his thigh, almost in the groin area which was where blood was taken during the procedure. He woke up during this but was much happier and back to his usual self. We went home and had lunch, and then Victor had a very long nap. (So did I!)

He has been coughing a bit today, which we were told was a common side effect of the tracheal brushings they did as part of the bronchoscopy and should only last a day or two. He has also been a bit sleepier than usual, which is to be expected.

Me and Victor
The doctor told us that everything went really well, and we should get the results by Tuesday. He said that Victor's lungs are looking good, with no signs of inflammation, and not too many secretions at all. The airway is staying open as he breathes.

I was given Victor's little hospital bracelet and the tiny mask they used over his nose and mouth to keep as a 'souveneir'. Not really sure what I'm supposed to do with it as it holds limited appeal as a mantelpiece ornament...

Tuesday, September 18, 2012

Lung Function Testing

Today we went to Princess Margaret Hospital for Victor's lung function test. Lung function testing will become extremely important as he gets older; as the name implies, it measures how well the lungs are functioning. The testing he had done today is partially for his benefit, but it was primarily for Cystic Fibrosis research. Not much data has been collected for young babies' lung function testing so there isn't really a way for doctors to interpret the data collected, but they will go over his results with me and explain them in a few weeks' time. These clinical trials are being performed so that one day we may be able to use lung function tests on infants, instead of the more invasive CT scan and bronchoscopy (which he is having done this Friday). It will also give us a baseline to go off as he has more of these tests done in the future.

Our day really started last night. I had a rent inspection today as well, so I stayed up late making sure the house was tidy and getting everything ready for the morning so we could leave quickly. I finally got to bed at 1.30am, only to have Victor wake for a feed at 2.30am. He had to begin fasting at 5am so I set my alarm for 4.40am, gave him a last feed so he wouldn't be too hungry, and got back to bed until 7am. At some point Felix ended up in my bed too, so not a very relaxing night at all!

I went to PMH with my sister in law Lulu, and she was able to watch Felix and take him upstairs to play while I stayed with Victor.

We were able to park across the street at the Telethon Institute for Child Health Research, where we had a reserved parking bay (as anyone who has tried to find parking in Subiaco knows, this was really helpful!). We then went to PMH and met with the medical researchers who are running the clinical trials. They went through everything with me, weighed him and gave him a quick check up to make sure he's healthy, then it was time to get started.

I gave Victor a sedative (choral hydrate) which was an oral solution given by a syringe. He didn't like the taste of it at all and spat out a little bit, but the majority of it went down. Then I gave him his dummy and rocked him to sleep, which didn't take very long.

We then walked across to the lung function testing room, which was small and quite dark and filled with pieces of equipment and medical machinery. I placed Victor on a little table and a respiratory doctor sat with him. The researchers explained everything to me as they did the testing. It was strange seeing him asleep on the table; although he was not actually anesthetized and was just asleep and breathing on his own, I think the fact that his head was held still by a donut-shaped pillow made it look unnatural because he doesn't sleep staring at the ceiling, he faces one way or the other. There were seven of us in that small room, including Victor and myself, so it was quite crowded and I didn't really get to see exactly what they were doing in detail.

The first test was measuring his resting breathing rate. They just wanted to see how fast he was breathing.

For the second test, he inhaled a tracer gas in a mixture with oxygen (so he was still breathing the normal amount of oxygen normally present in the air). The tracer gas is quite dense so it wouldn't cross over into the bloodstream. This test was to see how quickly and efficiently he was able to expel the tracer.

The third test used sound waves to take measurements of the internal structure of the lungs and see if there are any obstructions in there. This meant they put a little inflatable vest around his chest and tummy and a mouthpiece over his nose and mouth so they could control his breathing. He had to hold his breath for seven seconds so they could use the sound wave to take the measurement.

I sat in the room for the majority of the test, but did leave for a few minutes to speak with the head researcher who is also a respiratory doctor at PMH. We discussed the research and he told me about further, related trials that he thinks would be beneficial for Victor to participate in, which Phil and I need to discuss because there is a difference in opinion in our house about participating in clinical trials.

While I was out of the room, Victor woke up very briefly and the researchers were able to quickly re-settle him with a cuddle.

I came back into the room as they finished up. He was still fast asleep so I picked him up and we took him back to the original room. He still had a little monitor on his foot, measuring his heart rate. Two of the researchers stayed with me as we waited for him to wake up. We waited...and waited...and waited. We waited so long for Victor to wake up that I either made two new friends or got myself blacklisted with my inane babble. Eventually he woke up at 12.15pm, one of the longest-sleeping babies they've had, apparently: he had been given the sedative at 9am. He woke up smiling and had a good feed before we left and were given the all-clear from the respiratory doctor.

Felix came back with a balloon animal (an elephant), a sticker, and another sticker which he stuck on his little brother's shirt. Victor was drowsy for the rest of the day, and had a few long naps at home. He was awake for a while and was his usual self, but he really just wanted to sleep.

Speaking of sleep, he is now sleeping in the cot in his own bedroom! He's doing really well at night, normally only waking once a night and putting himself to sleep after a bath and a story.

We have two quiet days ahead until Friday, which is the CT scan and bronchoscopy. Phil is getting that day off work to come with us which will make everything a lot easier.

We have also had a visit from Phil's Mum, Donna, which was really nice. The boys loved spending time with their Grandma and they miss her a lot now that she's back in America.

While I was washing dishes, Felix decided to play with everything at once...!

And then he felt the need to get everything out in Victor's room too....sigh.
We have been spending time at home lately, doing lots of painting, reading, imaginative play (Felix) and seeing friends and family. Victor is starting to hold toys now, which go straight in the mouth, and he will be starting on solid food next week.

Victor with his favourite baby gym! He's getting so big.

Felix painting a picture from a Lightning McQueen colouring book.

Monday, August 27, 2012

Sweat Test Results

I just got the results back from Victor's sweat test, which he had last week. The chloride level in his sweat is 100 mmol/L, which is definitely a positive result for cystic fibrosis.

For babies under six months, a chloride level of:
Equal to or less than 29 mmol/L = CF very unlikely;
30-59 mmol/L = intermediate, means that CF is possible;
Greater than or equal to 60 mmol/L = CF is likely to be diagnosed.

This is the result we were expecting, so that just means that treatment can continue as before. A higher chloride level does not indicate severity. Now we've done all the tests and can say with certainty that Victor has cystic fibrosis. We've done DNA testing, the sweat test and he exhibits symptoms.

Aside from that, everything is fine. Felix has been waking up way too early the past few days and has been really grumpy as a result. It's raining here today so I sent him out in the back yard with an umbrella and he was pretty impressed with that! Victor has had a bit of a blocked nose for a few days but his doctor said that was ok as long as he doesn't start coughing.

Felix is VERY excited that his Grandma is coming to visit all the way from America in a few days! When I was putting him to bed tonight we were reading a book about cars/planes/trucks. He pointed to the plane and said "Grandma coming on the aeroplane, and donuts, and go in the car, and Felix house, and play, and movies!" I don't know how the donuts got in there but he clearly thinks there will be donuts involved somehow!

Sunday, August 26, 2012

Repeat Sweat Test and Check up

The sweat test is the 'gold standard' diagnostic test used to diagnose cystic fibrosis. Two months ago we tried to perform a sweat test on Victor, but he was too little (only 2.6kg) and we could not get any sweat out of him. We learned that the doctors had seen cystic fibrosis in his genes, so how this sweat test could be more accurate remains a mystery to me (I asked the nurse performing the sweat test, she didn't know either).

So this morning we repeated the sweat test. This involves cleaning the skin on his leg; applying some kind of chemical to stimulate the sweat glands; applying an electrode on his calf and another on his thigh; and bandaging his leg to keep it in place. The machine is then switched on and a small electrical current goes through the electrodes to also stimulate the sweat glands. This stays on for a period of time. Then the electrodes are removed, his leg is cleaned and a small sweat-collecting patch is placed on the thigh (looks like a little circle of paper). This is taped down securely and his leg is wrapped back up to keep it warm. He then gets wrapped in blankets to make him hot and sweaty, while this process occurs on the other leg.

Apparently the electrical current feels like tingling on the skin and is not painful. Victor had more of a problem with the cold chemicals going on his leg than the electrodes being switched on. I bundled him in two warm blankets, put a beanie on his head and held him up on my chest so he would also warm up from my body heat as well. He had a feed then slept through the whole thing. It worked; he produced enough sweat to be able to perform the test. The results will probably be back by tomorrow morning and I will get a call on Monday to let me know. This test measures the level of salt in the sweat. A higher level of salt is indicative of cystic fibrosis.

After the sweat test was over, Mum, Felix, Victor and I went to a cafe for lunch before Victor had his check up with his CF team.

First we weighed and measured him. He is up to 4.72kg (10lbs 7oz) and measures 56cm long (22 inches). This puts him on the 10th percentile on the weight chart and 3rd percentile for height. It also means he has put on almost a kilo in a month and grown 3cm since we last saw them, so that is really good news.

Next we met with Victor's physiotherapist. She is happy with how things are going and we discussed starting some little baby exercises and stretches, because exercise is important in keeping him healthy. She said a good idea might be to get a gym ball (one of those big ones you sit on) and gently bouncing with him. Lots of tummy time is also very important for him.

I asked her about these physiotherapy 'vests' I keep hearing about in various CF forums. Straight away she told me they were not recommended. There had been a very large study conducted and it strongly demonstrated adverse outcomes and more frequent hospitalizations among the people using the vest, to such an extent that the study had to be abandoned. So no hospital in Australia will recommend use of the vest. Instead, we will stick with what we've been doing, which is manual physiotherapy.

I then met with Victor's dietician. She was very happy about his growth and we are increasing the amount of enzymes to a scoop and a half for two feeds of the day. Since he's breastfed it's hard to tell how much he actually gets at each feed so we have to just guess. If he's gone a while without a feed (such as overnight) and is likely to take a lot more at the next feed I will choose that one to give the extra enzymes. We discussed starting solids and he'll probably start at four months. He doesn't need to take enzymes for most fruit and vegetables so that will help simplify things when we first start out.

We also saw Victor's respiratory specialist who is happy with him too. He spoke to me about how he was going, looked at his charts and what the other specialists had said, watched him breathing and listened with a stethoscope. Unfortunately he will be away on leave next month for the CT and bronchoscopy so one of the other respiratory specialists will do it and he will see us two weeks afterward. His medication dosage has increased to 1.1mls of antibiotic because he has grown bigger.

We then went to the hospital pharmacy to pick up all of Victor's medicines because we are almost out of everything. I got 3 months' supply of everything, which came to the shocking total of $69.60, even with Victor's health care card which caps all medication prices at $5.60. I suppose that's not really too bad, it could be so much worse, I just wasn't expecting it as I had never bought that much medicine in one go before. I definitely got a few stares from other parents waiting for prescriptions as I needed three shopping bags to carry all the medicine to the car, probably looked like I had just bought out the pharmacy.

So it was a good check up and Victor is doing really well. He is healthy and doing everything that he should be doing. Felix was amazingly well-behaved on our long day at PMH. He played at the big playground on Level 7 with my Mum and came back with a balloon animal (a monkey up a tree! So cute). He was so tired by the end of the day that he almost drifted off to sleep on the way home in the car, and I don't blame him: we had been there for five hours.

Victor sleeping at the cafe after his sweat test.

Felix playing with sugar packets, waiting for lunch.

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