Andrew came across this youtube clip yesterday. A rather alarming thought.
Turns out we are four to five times more at risk of having a stroke because we get less than seven hours sleep a night compared to someone who gets seven hours plus a night.
It scares me to think of what lack of sleep has done to Harry and Oscar's wee brain and body. Thank goodness we are getting more than two hours sleep a night now. I have absolutely no idea how we have managed to get through those dark days totally sleep deprived. How on earth did Andrew function at work!
It makes sense that we are seeing Oscar grow now that he's getting sleep.
Our wee family has come such a long way and I'm very proud of the five of us for making it to the other side.
https://youtu.be/dqONk48l5vY
Saturday, May 27, 2017
Thursday, May 25, 2017
PROUD OF MYSELF!
A couple of non-eventful weeks for us. The boys have all had colds. This is the first one for Oscar off of the immune suppressants and it was just a standard cold/cough and a couple of days of not feeling well. Harry is better now although still coughing and was unwell for over a week.
A big thing we've noticed over the last couple of weeks is that Oscar is now waking up naturally between seven and eight in the morning even if he's had a rough night. On the immunesuppressants we had to physically shake Oscar in the mornings to wake him up. Some mornings he slept in until nearly midday. I think the Methotrexate knocked him about way more than Harry. Stomach issues are a side effect also which could have been the reason for all of Oscar's stomach problems. His stomach is great now and not many complaints of sore tummys like we had. Harry had four nights in a row of sleeping all night in his bed last week. He did wake a couple of times but settled again without a scratch attack. This week with being unwell his skin has flared and he's back to sleeping with one of us after his first round of sleep. Harry's stomach looks amazing! He's still pulling his top up and proudly showing us. His arms are the worst affected at the moment but managable.
Yesterday Harry made a cake with his friends and Kindy teacher. When I picked him up he was so excited to show me his piece of cake. The first thing he said to his big brothers and Dad was "I made cake at Kindy". The teachers have cut it up and popped it in the freezer for times when there is food being handed out mainly at Birthday celebrations.
Last year I had a run in with a mother from Kindy who was questioning me about Harry's health. She made it pretty clear she didn't agree with the decisons we were making for our children. Unfortunately at that time we were fighting for survival and I was not strong enough to stick up for myself. I ended up crying on one of the teachers shoulders for quite some time after the mother left! As time has gone on it turns out Harry and this mother's daughter have become good wee buddies at Kindy!
Who would have thought.
Harry got a birthday invite yesterday to the wee girls party. I knew this was my opportunity to say a few things and get rid of some of the anger I have felt towards this mother. My opportunity arose this morning when the mother asked if I would be brining Harry to the party as she did kindly offer to make something he could eat. I said Harry would be coming to the party although I do find this whole situation awkward considering our conversation last year. I went on to say that she judged us very harshly without knowing about our situation or having an understanding about what we have gone through. She said she was frustrated and that she doesn't believe in alternative medicine and obviously we have different opinions on that so why don't we just let our kids be friends and get on with it. I agreed and also said I won't be bringing Harry to the party, Andrew will. I absolutely refuse to go to someones house who has been so horrible to me just because she has different beliefs than I.
At the end of the day Andrew and I get to make the decisons for our children's health and some of these decisions have been the long, hard road but the right one for our boys.
We are over the moon to see such a positive change in Oscar's energy levels. He is still itchy at bed time and battles to get to sleep. This is probably our biggest struggle with him at the moment. He's actually causing some of his eczema by scratching. It's quite frustrating to see him do this to himself! I hope that some time soon he will learn bed is a lovely, safe place to be without the negative association it has with being itchy.
A big thing we've noticed over the last couple of weeks is that Oscar is now waking up naturally between seven and eight in the morning even if he's had a rough night. On the immunesuppressants we had to physically shake Oscar in the mornings to wake him up. Some mornings he slept in until nearly midday. I think the Methotrexate knocked him about way more than Harry. Stomach issues are a side effect also which could have been the reason for all of Oscar's stomach problems. His stomach is great now and not many complaints of sore tummys like we had. Harry had four nights in a row of sleeping all night in his bed last week. He did wake a couple of times but settled again without a scratch attack. This week with being unwell his skin has flared and he's back to sleeping with one of us after his first round of sleep. Harry's stomach looks amazing! He's still pulling his top up and proudly showing us. His arms are the worst affected at the moment but managable.
Yesterday Harry made a cake with his friends and Kindy teacher. When I picked him up he was so excited to show me his piece of cake. The first thing he said to his big brothers and Dad was "I made cake at Kindy". The teachers have cut it up and popped it in the freezer for times when there is food being handed out mainly at Birthday celebrations.
Last year I had a run in with a mother from Kindy who was questioning me about Harry's health. She made it pretty clear she didn't agree with the decisons we were making for our children. Unfortunately at that time we were fighting for survival and I was not strong enough to stick up for myself. I ended up crying on one of the teachers shoulders for quite some time after the mother left! As time has gone on it turns out Harry and this mother's daughter have become good wee buddies at Kindy!
Who would have thought.
Harry got a birthday invite yesterday to the wee girls party. I knew this was my opportunity to say a few things and get rid of some of the anger I have felt towards this mother. My opportunity arose this morning when the mother asked if I would be brining Harry to the party as she did kindly offer to make something he could eat. I said Harry would be coming to the party although I do find this whole situation awkward considering our conversation last year. I went on to say that she judged us very harshly without knowing about our situation or having an understanding about what we have gone through. She said she was frustrated and that she doesn't believe in alternative medicine and obviously we have different opinions on that so why don't we just let our kids be friends and get on with it. I agreed and also said I won't be bringing Harry to the party, Andrew will. I absolutely refuse to go to someones house who has been so horrible to me just because she has different beliefs than I.
At the end of the day Andrew and I get to make the decisons for our children's health and some of these decisions have been the long, hard road but the right one for our boys.
We are over the moon to see such a positive change in Oscar's energy levels. He is still itchy at bed time and battles to get to sleep. This is probably our biggest struggle with him at the moment. He's actually causing some of his eczema by scratching. It's quite frustrating to see him do this to himself! I hope that some time soon he will learn bed is a lovely, safe place to be without the negative association it has with being itchy.
 |
| So much healing! |
Saturday, May 13, 2017
A POST FROM OUR BOYS
My name is Oscar. I am seven.I have eczema. It hurts. Does your skin hurt?
In the night I sometimes go into my Mum and Dad's bed because I get itchy.
I have a soft toy dog called Barkey Bark. He is also seven like me.
Sometimes when I feel scared I pat Marvin our toy sheep. He is very special.
Pretty much every night I have cream on, I don't like it at all. I have to try and not itch lots so my skin will heal. I hate eczema but I have to deal with it. I can't eat cheese and bread. I am trying egg again but only sometimes. Charlie sometimes goes to cafes but I can't eat anything there so I can't go. It makes me sad. It makes me sad when other kids bring cupcakes to class and eat them in front of me.
My skin looks good now but when I was younger it was not good. I was very very itchy. I have a greenstone. I have had it for two years.
My name is Charlie. I am five. I don't have eczema. If I did I would feel left out like Oscar and Harry. I like playing with lego sets. I like drinking smoothies, they are yummy.Sometimes I have cream on to make my skin soft and my skin won't feel dry.
It's bad that Oscar and Harry have eczema because they itch and it makes more eczema.
Sometimes when my Mum drops me off at school I feel sad.
My name is Harry. H-a-r-r-y.Sunday, May 7, 2017
STILL FULL OF ALLERGIES!
We got Oscar's allergy test results back this week. Everything is the same still except for egg white wasn't detected. This was previously low with the last Rast test but the intolerant test that we got sent to America was exceptionally high. I don't really know what this means! We have decided to play around with egg yolk initially and see what happens. The nurse told us Oscar's IGE levels were exceptionally high at 3019. The normal level for children is under 100. I told her that was great news as they used to be 4020! Oscar is quite upset as he was hoping he might be able to eat cheese and yoghurt. When we told him his results he said "But I've never eaten cheese in my whole life. He actually has, four years ago and obviously can't remember what it tastes like. We have tried some of the dairy free cheeses but they haven't been well received!
Oscar has managed to start the night off in his bed all week. He still itches and wants to go into our bed but we are standing firm on him having to fall asleep in his bed at the start of the night. This has been the first week back for Term 2 and Oscar has woken up at a normal time in the morning and has been on time every day! He's still slow as a snail getting ready but seems much more settled and happier to go to school.
Harry's doing so well. His stomach is nearly healed. He is sleeping well and is now saying every night before bed that he's going to sleep in his bed all night long. Not quite the case yet but certainly heading in the right direction.
I mentioned in my last post about the incident at kindy with Harry getting his hands on a birthday cupcake. I sent an e.mail to Harry's kindy asking if they would consider asking parents to bring in non food treats for Birthdays. The staff had a meeting about this and believe the cultural part of sharing food is important so they will be keeping things the same. I challenged this answer by asking if cultural is more important than health, not just Harry's. Some weeks there are multiple Birthdays and cakes and food treats are being handed out to children. According to
the Ministry of Educations first chief education health and nutrition advisor, Grant Schofield, the average N.Z child consumes 17 teaspoons a day! Click here to read MOE's new health advisor's article
A scary thought!
Anyways long story short I ended up in tears as it is upsetting knowing my children have to feel excluded for no fault of their own. The main issue for me is I have no control in an environment where people I don't know are handing food out. That really is a scary situation for us. Unfortunately some food for our children is poison to their wee bodies and people who haven't encountered allergies don't get that.
I want children to be able to celebrate their Birthday at Kindy. I really do, but believe it doesn't have to be with food. Children wouldn't care in the least if they were given a piece of cake or a balloon.
However Kindy want to make Harry feel included so have offered to do some baking with him at Kindy that they can keep in the freezer so there will always be something there for him.
I was asked by a friend if it was me that had an issue more than Harry. I thought long and hard and realised it's both of us. He's the one that gets upset and I'm the one that has to pick up the pieces. I did ask him what he wanted when children at kindy are eating birthday treats and he replied with "I want to eat cupcakes too".
I feel like everyday we have to fight to keep our children healthy. After all these years you would think we would be well accustomed to this. I guess it has mostly become routine but every now and then we have to go into battle a bit harder than usual. I'm sure anyone reading this that deals with allergies on a daiy basis will understand this and know how isolating it can feel.
At the end of the day we have to do what we can to try and keep our children healthy and happy.
Oscar has managed to start the night off in his bed all week. He still itches and wants to go into our bed but we are standing firm on him having to fall asleep in his bed at the start of the night. This has been the first week back for Term 2 and Oscar has woken up at a normal time in the morning and has been on time every day! He's still slow as a snail getting ready but seems much more settled and happier to go to school.
Harry's doing so well. His stomach is nearly healed. He is sleeping well and is now saying every night before bed that he's going to sleep in his bed all night long. Not quite the case yet but certainly heading in the right direction.
I mentioned in my last post about the incident at kindy with Harry getting his hands on a birthday cupcake. I sent an e.mail to Harry's kindy asking if they would consider asking parents to bring in non food treats for Birthdays. The staff had a meeting about this and believe the cultural part of sharing food is important so they will be keeping things the same. I challenged this answer by asking if cultural is more important than health, not just Harry's. Some weeks there are multiple Birthdays and cakes and food treats are being handed out to children. According to
the Ministry of Educations first chief education health and nutrition advisor, Grant Schofield, the average N.Z child consumes 17 teaspoons a day! Click here to read MOE's new health advisor's article
A scary thought!
Anyways long story short I ended up in tears as it is upsetting knowing my children have to feel excluded for no fault of their own. The main issue for me is I have no control in an environment where people I don't know are handing food out. That really is a scary situation for us. Unfortunately some food for our children is poison to their wee bodies and people who haven't encountered allergies don't get that.
I want children to be able to celebrate their Birthday at Kindy. I really do, but believe it doesn't have to be with food. Children wouldn't care in the least if they were given a piece of cake or a balloon.
However Kindy want to make Harry feel included so have offered to do some baking with him at Kindy that they can keep in the freezer so there will always be something there for him.
I was asked by a friend if it was me that had an issue more than Harry. I thought long and hard and realised it's both of us. He's the one that gets upset and I'm the one that has to pick up the pieces. I did ask him what he wanted when children at kindy are eating birthday treats and he replied with "I want to eat cupcakes too".
I feel like everyday we have to fight to keep our children healthy. After all these years you would think we would be well accustomed to this. I guess it has mostly become routine but every now and then we have to go into battle a bit harder than usual. I'm sure anyone reading this that deals with allergies on a daiy basis will understand this and know how isolating it can feel.
At the end of the day we have to do what we can to try and keep our children healthy and happy.
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