Which One Is On Drugs!!?

The other night when I was searching for some old photos of Noah, I came across this hilarious photo!! I know Noah is on a lot of meds, but it looks Jalen might have gotten into some of them! ;)

Fresh Strawberries

Earlier in the week Kylie dropped by with some fresh strawberries that she had just picked at Old Mac's Farm. Since Simone and Simon went before Christmas, we were inspired to go and get some ourselves, but when I rang up a few weeks ago they were 'between picks'. We decided today we should go and grab some before they stop picking them again. It's a great little spot - so close to home, but it feels like you are way out in the country.

There were so many strawberries!

We just took Jay and Harri and they thought it was heaps of fun, having their own baskets and picking their own.

Harri definitely ate more than he picked.

I think he ended up without about three in his basket, and then got Aaron to put more in for him!

Jalen on the other hand was a trooper and picked heaps (and also ate heaps!).


Despite eating so many we ended up getting lots to take home.

The boys love that they can now eat as many strawberries as they want as we usually only buy them for treats and when they are on special.

Hawks Stalk

I think I'm officially over the football already - and the season hasn't even started! On the other hand Aaron is more pumped for it than ever. Today we went into town to see a few of the Hawthorn players who were at MBF signing autographs.

While we were out shopping beforehand we ran into a few of the players who were doing some filming for Hawks Kids TV show. Yesterday Jalen was interviewed on camera for it and told he would be on it - supposedly it starts soon on Southern Cross on Saturday mornings. Jay said he was asked things like 'what do you love about Tasmania', 'what do you think we should do more to help the environment'. I was worried about what he was going to say, but sounds like he came up with some good answers :) We grabbed the opportunity to get a photo with the players before they went into MBF with heaps of people.

The funniest thing is that Harri gets so excited whenever he sees Hawka! He has so many photos with him, but wanted another one. Yesterday when I was lining up to get Luke Hodge's autograph I was keeping my eyes on the boys who were playing 'duck, duck, goose' on Aurora Stadium with Hawka! It was hilarious. Nicki snapped some photos, so hopefully she will have them on her blog.

Inside MBF all of Aaron's dreams came true when he got to touch the premiership cup! He was like a kid in a lolly shop!

Jay was also excited to actually touch it.

Noah on the other hand decided it was all a bit boring! ;)

Peter Hudson was also there so Aaron was excited to get his photo taken with him too.

The first pre-season game starts on Saturday night, and Hawthorn's first pre-season game is 21st Feb at Aurora, so Aaron and Jay are hanging out to go and watch their first live game of the season. They are lucky this year as they will both be going to at least 5 live Hawthorn games this season - both here and in Melbourne, and Aaron may also go on the school footy trip again, so that means even more live footy. I'm glad they aren't into the cricket as much!

An Afternoon With the Hawks

This afternoon we took the boys to the Hawthorn Community Camp at Aurora Stadium. It was a great afternoon where the boys could get involved in an Auskick clinic and take part in different practice drills with the players. It was a beautiful afternoon, and nice to see Nicki and Alex and the kids who came up from Ulverstone for it.

The kids were split into different age groups and sent to different parts of the ground to work with different players. After a certain amount of time the whistle would blow to let them know it was time to rotate. I was surprised that Harri actually was okay to go off on his own with the younger kids.

He was so funny - he was lining up to have a kick at goal and puts the ball on the ground like it is a soccer ball, and then goes to kick it. Clinton Young was with him and said 'hang on buddy - it's not a soccer ball!' and tells him to pick it up and kick it properly. Harri says that he can't so Clinton showed him how it was done. Harri still kept saying 'I can't do that!', but had a go anyway and was so excited when he kicked it.

Jay had a great time with his group. In the handball drill he won a raffle ticket by getting it through the target, and was then placed in the draw to win a big prize at the end of the afternoon. He didn't win, but was excited to be in the draw.

Harri loved the contact drill where he had to ram himself into the pad.

There was a Telstra half time tent where they got to have a live phone call with Leigh Matthews. It was great as the kids got to actually ask him questions and he would ask them things. Aaron went in with Harri and got him to ask 'who do you love more - Hawthorn, Collingwood or Brisbane?'. Leigh said it depends where he is at, and said that today it was Hawthorn'.

Jared Roughead was the one doing the call with Leigh Matthews and was great with the kids.

Usually when it is all over the players stay on field so people can go up and get autographs and have their photos taken. This year they set it up differently where there were two marquees and you had to line up to get autographs and weren't allowed any photos. Aaron took Noah through one marquee as he wanted to get Noah's wheelchair signed by a couple of the players. At the same time I lined up to get Aaron's geurnsey signed by his favourite player - Luke Hodge. He doesn't have any autographs on it, but only wanted Luke's.

When I got to the players I was scanning up and down the players to find Luke, but couldn't find him (even though it was advertised he was in that marquee). I don't know all the players, but I was sure I knew who he was and wondered why I couldn't see him. Aaron was walking past and I asked him if he was there and he was disappointed to see he had gone. He didn't want any other players to sign it, so I had waited in line for nothing. I came out of the line and then Aaron said that maybe we could get a couple of the to sign Noah's chair instead. I explained to the security lady what had happened, but there was no way she was even going to let Noah just slip back in to get two signatures and said we would have to go right to the back of the line again (which was huge). There was no way I was doing that and argued with her that I had just wasted my time for one signature and he wasn't there, but she wasn't going to budge.

Lucky another security guard heard what was happening and asked us who we wanted and Aaron said that if possible it would be great to get Brent Guerra, even though he wasn't in the marquee, but was standing close by. The security guard went over and asked and as soon as he saw Noah he was more than happy to sign it and have a chat. He asked Noah if he was excited on grand final day, and Aaron told him that he (Aaron) was!

A girl who works with Hawthorn then came over and said she saw what was going on and that we were hoping to just get Luke Hodge's autograph and said he had to go into the rooms for a photo. She asked me if I would like her to take the top to get signed for us and of course I said yes! She was so lovely and came back with it all signed. Lucky for Aaron, as we were leaving Hodgie was about to get into the van to leave and was happy to pose for a photo.

It was a great afternoon. Aaron is now so pumped for the footy to start. Harri was all tuckered out by the end of it and grizzled all the way to the car - until he got into Nicki's pram and was pushed the rest of the way!

Hawks at Sunrise

This morning we headed down to Aurora Stadium at 7.30am as we heard that the Sunrise morning show was going to be doing live crosses every half an hour, with a couple of the Hawks players. Since Noah had been so cranky yesterday I wasn't keen on waking him, and told Aaron to just take Jay and Harri down. Noah started to wake about 6.45 am and seemed settled, so we decided to all go down. Noah very quickly fell back to sleep though and missed the whole thing!

When we got there just after 7.30am we were very surprised to see hardly anyone down there! It was great as it meant we got to see everything that was going on and spend time talking to the two players (Trent Croad and Grant Birchall) without having to fight the crowds.

Mark Beretta was there from Sunrise and every half and hour they would have a live cross to him to do the sport. He was actually really lovely and as soon as he saw us he gave us a wave and said hi and asked us how we were. I said 'tired' and he said 'I know how that feels!'. I don't envy his job getting up so early every morning to do the show. He was really cool and had a good talk and was saying how awful the heat was in Melbourne last week when he was doing the broadcasts from the Australian Open.

There were probably only about ten kids there altogether, so it was great as it meant my boys were able to get in the shots on camera. Mark said he would set up the 8am shot so that the boys were on camera. Just before the live cross the camera man told me to get all the kids to move over a bit more so that Jay and Kobe could be seen better. We recorded it and when we got home, were so excited that you could see three of the boys really well in the background. Noah was just out of the shot unfortunately.



For the second live cross the kids were in the background handballing with the Hawks players into the target. Harri actually starred during this segment and got the ball through the target at the beginning and pumped the air with his fist! Later on in the segment he was right up near Mark while he was talking.


It was fun to be a part of. There were a few Telstra employees there as well. Two lovely guys talked to us a lot and said they were from Sydney and travel around with the AFL community camps. They were lovely in trying to get the boys included and gave them two free footballs to take home.

Kobe was so cute in his little Hawks jumper. Everyone was laughing at him sitting on Jalen's knee for the live cross and he kept trying to wriggle away. He had a great time. The boys thought it was a bonus to have a free sausage sizzle for breakfast!

We head back this afternoon for the Hawks Family Day where more players will be there and will do drills etc with the kids. The boys can't wait.

Seven And A Half Years Later

Before Noah was diagnosed with hydranencephaly he was a very unsettled baby and screamed - a lot! It wasn't just a normal baby cry, but a really high pitched scream - like something was really hurting or wrong. When he was diagnosed at 9 weeks with hydran we were told that he was screaming because he had a lot of cerebral irritation. This was because he was having seizures that we didn't recognise as seizures- things like a funny type of 'yawn'. This was Noah at about 6 weeks old. If he was awake this is what he was like. He hardly ever slept and we dreaded him waking up as we knew this is what he would be like just after he woke up. As soon as he was diagnosed with hydran and also with epilepsy Dr B put him on a medication called phenobarbitone. Within 2 days he was a totally different baby! He was so relaxed and happy and even started smiling and acted like a 'normal' baby - for a little while at least.

Seven and a half years later not much has changed! He can have months in a row where he can be quite settled and happy, and then he can have many months like this - all from having so many intractable seizures. It's the one thing with Noah that has been the hardest to treat. If he didn't have such trouble with seizures his life would be so much more comfortable.

We now know exactly when he has had a seizure - although most people wouldn't even notice them. Sometimes it can just be quick turn of the eyes and/or head. He always prefers to keep his head to the left, but when he has a seizure his head and eyes will go to the right. These are called partial or focal seizures.

Other times he will actually break out in a smile or even laugh. I like those the best! I came across this old pic from three years ago when he was obviously having a seizure. How cute is Jay and Harri!!

There are times when the seizures are a lot more obvious and anyone would notice them. These are called tonic seizures and he will stiffen his arms and legs and his face will go very tense and he will breath funny.

Since the heat wave last week, something has changed and he is having a lot of seizures again :( He was going really well for a couple of month and things had settled right down. Today he has had another day of being very unsettled. It's easy to tell that it's all brain related because of the type of yelling he is doing. It can be very draining listening to it all afternoon.

Many other kids with hydran do have seizures, but Noah seems to be one of the ones who has more trouble than most with them as they are very hard to treat. We have tried pretty much every anti-convulsant possible including epilim, lamictal, diazepam, phenobarbitone, frisium, clonazepam, dilantin, neurontin, vigabatrin, topomax, topiramate, midazolam, trileptal, klonopin, tegretol, and keppra - I'm sure I have forgotten one or two.

Usually we find a combination of two or three that work 'well' together - well enough to settle Noah down and not be so irritable, but never enough to stop the seizures completely. He has probably only ever had 5-10 days in his whole life where he hasn't had a seizure.

We are forever going back to the Dr to fiddle with doses or to change a medication completely as they often seem to work for a few months at a time, and then he gets used to them and things change again. I'm hoping that's not happening at the moment as I really don't want to change medications again as it is a long process trying to find something that will work - as nothing ever really does for very long and when you have already gone through all the meds, there are not really any other options but to try them again.

One thing that we tried three years ago was the ketogenic diet. Noah and I went to Melbourne to the Royal Children's Hospital to see a neurologist who witnessed him having a seizure (good timing Noah!), and said he wanted to do some tests and possibly trial the diet. The ketogenic diet is a high fat, low carb diet which gets the body producing ketones - which is when it is burning fat constantly - like when someone is fasting. Drs aren't sure exactly why it works, but for some people when there body is producing ketones their seizures can be decreased, as it makes a change in the brain.

We went over a few different times and the second trip was so Noah could have a 24 hour video EEG done. Everytime he had a seizure I had to press a button and it was also being recorded on video the whole time. In this pic Noah is actually having a tonic seizure.

From the video and recordings of his seizures on the eeg the Drs decided that he was having different types of seizures - focal, tonic, myoclonic and absence. The neurologist said he didn't know for sure, but he probably has a type of epilespsy called Lennox-Gastaut Syndrome which is very hard to control with medications, and therefore he recommended trying the ketogenic diet.

When we went back to start the diet Noah had to fast for 24 hours - it was a very long 24 hours! Finally when his urine started to show ketones we were able to give him some feeds of the ketogenic formula which as a soy milk with lots of fat added - in the form of oil! At first it was very hard for him to tolerate it and he wanted to vomit all the time. We spent 3 or 4 days on the neurological ward until he was tolerating the formula okay. The best thing was that we were with lots of other patients who also had seizures all the time. It was so great to talk to other parents in the same position, to see what medications they had tried and to hear of other treatments. I was amazed by the Royal Children's Hospital - the hospital itself is so old and run down (they are now building a new one), but the staff were amazing - they knew so much and everything was there at the one place. The Dr would come and talk to me about Noah and his seizures and would then ask if there was anything else we needed while we were there and I would ask him about a neck collar that I see other kids using that I thought would be great for Noah, and within half an hour a physio had been sent up to see us with different collars to try on.

I was also very impressed that they had a play therapist come around every day to see what they could do to make each child's day as fun as possible. I told her that Noah would be okay (I wasn't really in the mood for explaining that he couldn't really see or do much) and within minutes she came back with lots of different musical instruments and beads for him to feel - they obviously had worked with many kids like Noah, and knew just what would suit him! It is one place that I haven't felt like Noah was on his own - there were so many other kids just like him there.

Every day we would watch the Starlight channel on the TV where the Starlight foundation would be broadcasting live from their Starlight Room downstairs. They would often have special guests which were famous athletes or celebrities who would spend an hour or two in the hospital. The kids from any ward (if they were well enough) could go to the Starlight Room while they were there and talk to them and be a part of the show. Noah and I would often take walks around the hospital and would visit the Starlight room.

Outside our window on the ward was the heli pad. Every day we would get one or two flights coming in with very sick kids on them. It would make me feel sick everytime I heard the helicopter coming in, wondering what was wrong with the child they were bringing in.

After Noah was tolerating his feeds and I was taught how to check his urine for ketones, we were transferred to a room in the hospital that was like a hotel room. Here we were independent and I was in charge of making up feeds and testing Noah on my own, but I still had the safety of being in the hospital if something came up. It was nice to have our own space and to know that we were almost on the way home, but to also know that the Drs were very close by if we needed them. On our first trip to Melbourne we met Rita who had a little boy also called Noah who had hydran. He was 6 months younger than Noah, but passed away from pneumonia when he was 18 months old. We also met Emma who was Noah's Aunt and are still in contact with both of them today. Rita took the opportunity when we were staying in the accomodation at the hospital to come and have a cuddle with Noah. It was so nice meeting them all and they of course all loved Noah and kept seeing little things that he did, that reminded them of their Noah.

Noah stayed on the diet for 9 long months. The whole time it was a juggling act of working out the right ratio of fat as he couldn't seem to maintain ketosis for a long period of time. At first it seemed to help his seizures, but in the end it was just wasn't working well enough to justify staying on it, considering it was so hard to keep his ketones up. Noah seemed to be different to lots of others on the diet and had a lot of side effects from it. Instead of always burning the fat like he was supposed to, he stored it instead and put on so much weight! Often people on the diet don't put on so much weight, but either maintain their usual weight or lose it because they are burning fat all the time. This was Noah by the end of the diet! I look at the photo now and still can't believe he was ever that big! I think he looks terrible, and am so glad he is off the diet now.

Even though it didn't work, I'm still glad that we tried it as I would always wonder whether it could've worked. Some days he will have a lot of seizures if he is just stressed about something - such as when he's not feeling well. This can also set him off in one of his moods where he just yells all day - like it has given him a big headache. It's the hardest thing to see Noah go through as it's something that is so hard to treat and not much you can do to make it better for him.
I'm hoping that these last few days where he has been a bit unsettled, doesn't turn into another episode of it lasting for a few months.

All Tuckered Out

With the past few days being so hot, it has been really hard to get a good nights sleep. Kobe usually sleeps from about 7.30 - 8pm till 6.00-7.00am. The last few nights however we have been hearing him all night. All of us are a bit tired from not getting much sleep.

This was Kobe all ready for church this morning. He was probably only up for an hour and we found him like this on the floor in the lounge room! He was obviously making up for lost time during the night.

It actually felt cold this morning - hence why he has his overalls on! I'm not sure what the temperature was but boy it felt cold! It was probably something like 15 degrees which is warmer than it ever gets in winter, but I even considered putting on a long sleeve top! I can see now how people acclimatise to the warm weather as anything below 25 is feeling very cool at the moment! Not that I'm complaining! ;)