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!


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