Well the date is the 1st day of the 10th month in 2013. What a crazy past 6 months it has been. A blazing 2013 fundraiser which raised over $20,000, a little boy that has been in and out of hospital, a little boy that has been put on the transplant list, a little boy that is getting closer each to do a normal life. One could say what is normal? A life that weighing food is an essential part of a parents day, a life that one small mistake could seriously effect another. Normal is not a common word these days. There are so many ups and downs in life and Zeke has experienced that first hand, and still does to this day.
[separator]
Zeke loves his friends, he loves his family and he will soon come to love all of his supporters who have stuck by the team who help organize the wonderful day that is upon us in 2014.
[separator]

[separator]
At present Zeke is up in Wycheproof with his Father Corey and partner Laura having a great time playing with friends and getting outside in the fresh air, getting into trouble, wrecking things, and just doing the fun things that kids do. Hopefully things can stay the way they have been recently and Zeke can stay healthy and stay out of hospital, even though he loves to go say “Hi” to Dr Joy and her spectacular team in at the Royal Children’s Hospital.
[separator]
Until next time….
[separator]
Major

Life is a song – sing it. Life is a game – play it. Life is a challenge – meet it. Life is a dream – realize it. Life is a sacrifice – offer it. Life is love – enjoy it!
[separator]

Friends and family are our support system. They tell us what we need to hear, not what we want to hear and they are there for us in the good and bad times. Without them we have no idea where we would be and we know that their love for us is what’s keeping our head above the water.
[separator]
A Photo Says A Thousand Words.
[separator]
EVERY Single Photo Of Ours Begin With
[separator]

[separator]

[two-columns]
[onehalf]
[titles]
[cell_title ] [/cell_title]

[/titles]
[cell_text] [/cell_text]

[/onehalf]

[onehalf_last]
[titles]
[cell_title ] [/cell_title]

[/titles]
[cell_text] [/cell_text]

[/onehalf_last]

[/two-columns]

The Life of Zeke In Photos

It was September’s turn to shine. Zeke has been going so well since his admission in May. He has been growing well and reaching all his milestones. There has been a few times where I have had to put him on his unwell formula at home but sometimes that just isn’t enough. On the 13^th I had to rush Zeke back down to hospital as he was having real trouble crawling. At this stage he was very good at crawling and pulling himself up on furniture but this day was much different. His DNPH test was positive and his smelly nappy was back. His levels on arrival were around 800 this time. The same plan was put in place. Take bloods, insert a NG tube, chuck a wee bag on and wait for results. Three days later it was home time again.

July was a tough month it was full of sadness, Corey and I had separated, I re located to Melbourne with the children so that I could have Zeke closer to the hospital as driving three and a half hours each admission almost on my own was getting all too much. And especially when I had Jacob to look after in the hospital as well. I was hoping that maybe his admissions would become shorter as the treatment could be quicker. But in the end I knew that Melbourne was where we belong and that their father would still be in their lives even if we are a while away. I know a few families that have been broken up because of their own issues but to also have a child with an illness can also make things harder, but this does not have to be a bad stigma. Sometimes it is the turning point for a friendship. It is better to be separated and to talk then be together and not want to talk to each other at all. It also means that we each have something else to focus on. Corey is now a full time truck driver and has the kids on the weekend (when Zeke is not sick). Being a truck driver can be enough stress on a relationship without also having a sick child so at least now Corey can focus his working days on his work and then his weekend with the boys doing all they love doing.  And I focus all my time on being a full time mum to my beautiful boys. None of us are perfect and we should not be expected to be. We make our own paths and it’s the way we treat and help people along the way that counts. I have been so lucky to have such supporting friends and family help the children and I get settled in Melbourne. Caring for a child with an illness is no easy job.

The end of May arrived and so did another visit to the Royal Children’s hospital, Zeke had caught a virus which sent his levels high again. This time was a bit exciting yet scary at the same time, we had to get the fixed wing aeroplane to Melbourne as the Ambulance was going to take too long.  I drove out to the aerodrome and waited with Zeke. Not long after it arrived. such a surreal moment. watching it land just for us. Was surely a trip to remember.  Zeke was easily managed this time, his levels were very cooperative and we were off home in two days!

April 1^st 2011

We had not even been home for long and Zeke had another bad turn which sent him back to the RCH. His levels were 1500 on arrival. The doctors would usually like to see them between 100-300. We were there for four days this time. Another four days of poking and prodding and trying to stabilise Zeke’s levels. It all went really well. Zeke had been very grizzly but he soon turned back into the bubbly little boy i know and love. We were discharged on the 5^th. It was so great to be back at home. Everything was finally starting to calm down and a good routine was established. Life was great

March 12^th 2011
[separator]

Well we have had a great month and a bit at home with Zeke. He has been super well up until now. Zeke has not been feeding well and has what seems to be a small cold. We were advised by the Doctors to bring him down to the Royal Children’s Hospital as with any type of infection in a child/baby with MSUD it can be more severe than with a child without the disease. I got our bags packed and started on the three and a half hour drive to Melbourne. As soon as I arrived we went to Emergency where the nurses were expecting us. They took us through to the resus bay where instantly they inserted an IV and a nasal gastric tube so that Zeke could be started on his unwell formula. Later that night we were moved up to the ward. Floor 8 at this stage which is the neuroscience ward as MSUD effects the brain.
[separator]

March 14^th
[separator]

Zeke is not doing so well, he has had high temps and will not feed at all through a bottle. He is relying solely on the NG tube and the antibiotics for gastro has not started.
[separator]

March 15^th
[separator]

Doctors have to insert another IV as the one they were using to put antibiotics in had fell out the vein and the antibiotics had caused his little hand to swell. Later that day became worse, Zeke was constantly throwing up everywhere. He still had a high temp and was generally unwell. We were moved into an isolation room so that no other children could catch the gastro.
[separator]

March 16^th
[separator]

Zeke has started to get better, he has stopped vomiting as much and he does not have a temperature. The only concern is his protein levels are all over the place. The doctors are finding it hard to get them back to normal.
[separator]

March 17^th
[separator]

Today we have another issue. Zeke’s protein levels are too low. So now they are introducing S26 Gold formula to put some protein back into his system. This is carefully measured and watched by the specialists so that he does not get too much.
[separator]

March 19^th
[separator]

Yesterday was a good day. Zeke seemed just like a normal snotty baby. He was smiling and sleeping well. Today I cannot say the same. Zeke has been vomiting again and also has bad diarrhea. The doctors came to see me to tell me that they have detected that Zeke has salmonella poisoning. What?? I think to myself. How can a little baby get this? It’s from chicken isn’t it? And he doesn’t eat. I was so confused but was let know that there are several other ways it can be contracted such as through water.
[separator]

March 20^th
[separator]

Zeke is on another course of IV antibiotics for the salmonella poisoning and because he is vomiting and has diarreah his formula intake through the NG tube has been increased.
[separator]

March 23^rd
[separator]

Today is a good day. Zeke is improving once again. We had the clown doctors come in and sing Zeke a song whilst a film crew filmed for the Good Friday Appeal.
[separator]

March 28^th
[separator]

I got to take Zeke for a walk around the hospital today. Was great to be able to take him out of his room. Outside into the sunshine. . Doctors have also organised for Zeke to have an ultrasound as they are concerned some damage may be done to his liver.
[separator]

March 29^th
[separator]

The results from the ultrasound came back and there was nothing to be concerned about. If Zeke starts to improve with his bottle feeding then in the next day or so we can go home.
[separator]

March 30^th
[separator]

Discharged from hospital again. With another long drive ahead of us it will be nice to be back in our own beds and to see Corey and Jacob again.

January 25^th 2011
[separator]

Zeke had woken up and was not himself. I noticed a slight smell of maple syrup in his nappy. I immediately got out my DNPH ( Dinitrophenylhydrazine) testing agent. This is a reaction chemical that I mix with his urine and if the liquid turns cloudy it usually means his protein levels are high. Depending on how quickly it reacts is how high his levels are. I did his urine test and sure enough it came back positive. I wanted to make sure so I did a heel prick test and then repeated the urine test. Once again it was positive. So I got on the phone and contacted the metabolic doctor on call. The plan was to put Zeke on what is called his ‘unwell formula’. This is basically a higher volume of his normal formula with added calories. As higher calories will help reduce his leucine (protein) levels. After a day of being on his unwell formula, I repeated the DNPH test and it was reactive but a lot slower than the day before. This was a good sign. I had to repeat his heel prick test for the next few days so that the doctors had an idea of where he was at but in the end he was fine this time with home management.

January 14^th 2011
[separator]

The last two weeks were going great. Zeke has been responding to his medicine and formula well. The only issue now is that all the roads around our town of Wycheproof were flooding. This would be fine if Zeke’s formula could be bought at a supermarket. This is not the case. All Zeke’s formula and additives needed to be brought in by a truck as they were through a script. It was not just a matter of ducking down the street to grab another tin. As the roads were flooding there was no way to get his formula to us. The only option we had left was to be flown to Melbourne. A Helicopter arrived at the Wycheproof hospital and took Zeke and I to Melbourne where we were able to get more formula. We ended up staying at my step mum’s house until the 22^nd   when the roads cleared up and it was safe for us to go home. Crisis averted.

December 25^th 2010
[separator]

Christmas day! Supposed to be a joyous and fun filled day. The start of our day was not fun. More medicine and heel pricks for Zeke. No one had come in to see us. Was just us in that room wondering what the day would bring. At last Zeke’s dad and our son Jacob came in to see us. We went to Corey’s Aunt’s house for lunch with his family for a couple of hours then he dropped me back at the hospital. I did not want to leave Jacob but I was not leaving Zeke all alone on Christmas day. Christmas night was just as bad. No nurses came into our room or anything. I just wanted to be at home. I was forgetting what it looked like, felt like we had been in hospital for months.

December 28^{th 2010}
[separator]

At last I got the news I was waiting for! Zeke was finally allowed to go home. I was so filled with joy and started packing our belongings immediately. Zeke was only sent home on one medication which was Phenobarbitone. This was to prevent him from having anymore seizures.  Zeke’s dad came to pick us up and took us home. When we arrived home I was overwhelmed with generous gifts from our community. They had provided us with hampers of all sorts of much needed items. Even though we spent Christmas in hospital it felt nice to come home to special gifts anyway from people who care. It was a terrible start to Zeke’s life but at least he was finally home to see the New Year begin.