The common cold. How I hate the common cold! Harry always seems to have a cold from the minute it starts to cool down until its so hot he's running around naked he's sneezing and coughing all over the place.
Sam and I have tried everything to prevent it, it never works. Every winter guaranteed. So we've learnt how to help the poor little mite through it.
Here are our top tips.
1. Calpol Vapour Plug-in and Nightlight - This is a lifesaver! How we ever got by without it I will never know! There are no medicines as such in it, but the aromatic oils of Chamomile and Lavender help your child to sleep, meaning more time for recovery. Each refill lasts 8 hours and we ALWAYS have spares in the house.
We turn ours on just as Harry is getting in the bath, with his bedroom door shut so the oils gently fill his room for when he's ready to get out of the bath and into bed. Harry always sleeps much better when we use this, and I have to say, I've been known to steal it for our room if I'm feeling a bit rough from it all too!
Please be aware this is not suitable for babies under 3 months or pregnant women.
2. Olbas oil for children - Again, this just contains decongestants, but if Harry is feeling a bit bunged up we will put this in an oil burner (usually 1 drop in some water) in whatever room Harry is in. This makes it better for all of us to breath and Harry is usually a lot happier once we have this going! You can also add a few drops to a tissue and hold this close to your child's nose, but Harry never sits still long enough for that to work!
Again, not suitable for babies under 3 months.
3. Tissues with Balsam - Running noses means millions of tissues. We all know how sore your nose can get with the continuous wiping. Imagine how bad it is for our little ones. Balsam tissues aren't going to prevent the sore nose completely but they will definitely help more than tissues without.
4. Calpol and Ibruprofen - We all know what these are for! But I live by Calpol for Harry.
5. Fluids - My Nan has always said to me, 'Feed a cold, starve a fever'. I don't know how true this is but I do know it is almost impossible to get Harry to eat anything when he's feeling poorly, so I always try to make sure he drinks plenty. It helps to soothe his poor throat and keeps something in his stomach if we have a day where he will refuse all food. I will try to fill him up with milk and squash as well as water because he is missing out on all the vitamins he would normally take in if he had eaten.
6. Steam - Steam is the best quick relief for a child with a cold. Turn on your shower - quite hot! Close the bathroom window and shut yourself with the child in for 5 minutes at a time. It will open up the sinuses and help to breathe. Try not to stay there, especially with smaller children, for too long as it will dehydrate. Also, make sure to hydrate yourself and your child after to avoid feeling worse!
Let us know if you have any other tips to help out a child with a cold!!
Telling our family Harry has downs.
Sam and I have always had so much support when it comes to raising Harry. And we will always be beyond grateful for every single person.
Telling our families about Harry's diagnosis was hard. It wasn't something anyone had ever expected, with us being so young, and let's be honest, you don't ever think it will happen to you.
I remember after the doctor had spoken to us about running the tests. I couldn't think. The first thing I did after getting back to my hospital room was calling my mum.
My mum lived just over 100 miles away at the time. When we told her I was pregnant she had planned to come down for the last two weeks of my pregnancy, but I had put her off. You can't know for definite when you will go into labour and I didn't want her to get excited, book time off work and come down, for me to go 2 weeks over. So when we told her Harry was in NICU she again offered to come down and again I put her off, what could she do? She wasn't able to visit Harry for the first week or so and she would have just been sitting at mine for the whole time she was down, with me and Sam at the hospital. But at that moment, making that phone call, I just wanted her here. She didn't get to meet Harry until just after he turned a month old with having to book the time off work and everything and while she wasn't here I felt kind of alone. She had missed the majority of my pregnancy and didn't get to meet my little boy for a month.
She lived that far away until recently. The 1st of September she officially moved back here and its been fantastic. I know she feels like she has missed out on so much of Harry she's trying to make up for it. Sam and I are super lucky that my mum now has Harry one day a week and my sister has him another now so we can save so much money on our nursery bill.
My mum was so amazing when we told her about the doctors thinking Harry had down's. Her first words were, 'So? Who cares' She has never seen why it would be a problem. And she has always been one of Harry's biggest cheerleaders.
Telling my dad was harder. We waited until we got our confirmed diagnosis before we worried him because we knew he would worry.
I have to say, my dad really shocked me. We felt it was best to gather at my grandparents (this has always been a meeting place for my family. If we need a gathering place its always at Nan's!) with my grandparents and dad there. I remember sitting at my nan's dining table, with everyone surrounding Sam and I. I think they had all expected something about Harry being in NICU. I think my dad was convinced he was going to be there for months. And we just came out with it. 'Harry has Down's syndrome.' My dad and my nan cried. I think my mum did too, to be honest, but I wasn't there to see that. We explained that right then we were just focusing on getting him well enough to come home, and we didn't know what Down's syndrome meant for us.
I dread to think what happened when we left.
But my dad did something I never expected of him. My dad has always been a typical Cockney. An East Londoner through and through, but he was confused and concerned. Normally this would just frustrate him, but he got in contact with the local SEN school's headteacher (i think he was a friend of a friend) and he had a meeting, he learnt everything he could about downs. And then when we also got the Klinefelters syndrome diagnosis he did the same. He learnt everything he could. I don't think my dad will ever know how much I love him for that. My little boy is my dad's world, and he wouldn't have it any other way. Growing up I never imagined getting my dad to babysit my children, but now, seeing him with Harry, I couldn't imagine not asking him to look after Harry when I need a break. My dad has given up nights out, football games and events he has brought tickets for, to look after my little boy when I ask. He's always happy to give us lifts and is one of the two other people, that aren't me or Sam allowed to pick Harry up from the nursery. I think my dad is one our biggest supporters, and I know he would do absolutely anything for Harry.
I was never really involved with how Sam told his parents. I was in a state, with having had no sleep while going through my six days of pre-labour and everything going on with Harry. Sam pretty much took over telling everyone to be honest. He has always been my rock and I don't think I have ever needed him more then I did in those weeks Harry was in NICU.
Sam told his parents when they came to the hospital to visit Harry. He sat them down in the atrium while I was in with Harry, wishing I could touch him. We were never concerned about how Sam's parents would react. We knew they would look past all of that and see Harry for who he was.
We are incredibly lucky to have the support we do from Sam's parents. They have done more for us then we care to admit, and I don't think I will ever be able to thank them enough for it all, but most of all I will never be able to thank them enough for how they love Harry. I don't think I've ever told them how grateful I am to have them as my in-laws.
Sam's mum has been one of our biggest help. Not only does she do EVERYTHING for Harry when we visit, but she was also there for us during my pregnancy whenever we needed some help. She became my support while my mum wasn't able to be here. I'll never forget the first day I was having contractions. Sam called his mum, just to update and they travelled back from their caravan that very night so his she could sit with us at the hospital if we needed anything.
Sam's mum is also a great help thanks to her experience with children with special needs. Sam's mum used to work for the Visual Impairment service and has lots of experience with children with special needs. Although she hasn't done it for a fair few years she is still our first port of call if we are concerned with anything to do with Harry. She may get sick of the many questions but she never lets on. She is always there if we need her.
Sam's dad is one of Harry's favourite people and we know that he loves Harry just as much as Harry loves him. He lights up whenever he sees our little boy and it's amazing to see them together. I know he will teach Harry to be just as cheeky as Sam is and to tell some brilliantly terrible jokes but I honestly wouldn't have it any other way!
I will always be thankful for our family and how they are with our beautiful little boy. I feel good knowing he has all of these people to support him through everything life is going to throw at him. I know his life may be hard at times, but I also know with the family he's got he will get through anything.
Why I blog...
This blog post is not something I would usually write, and honestly, I must have started this post a million and one times since starting this blog.
Today I want to talk about why I started this blog and my future goals with it.
When I was pregnant, Sam and I had discussed social media and the internet and how much we want Harry on things like Facebook. We weighed up the pro's like having my mum, brother and sister and all of our extended family we don't see often, be able to keep up with his goings on, but ultimately we had originally decided we didn't want pictures of Harry on the internet.
Then we got Harry's diagnosis.
With getting the diagnosis of Down Syndrome and Klinefelter's Syndrome, and learning how rare it is for a boy to have both, we found that there was little information out there to help and reassure us, and we got thinking. What if we had gotten a prenatal diagnosis? All we would have had to go one was the information the doctors would give us, which let's be honest, is not the most reassuring. Would we have made the decision to end the pregnancy? Would we still have our amazing little boy? I would like to think we would have still gone ahead, but can we ever really be sure? And what happens now, when someone learns their child is 1 in 4.5 million and has both syndromes? How can we help that family?
And so Raising Harry was born.
I have always wanted to write, it has always been my dream, and so starting a blog seemed like the most natural thing in the world. It wasn't a type of writing I had ever tried before, but slowly I've been getting used to it.
Writing has also had a massively positive effect on my mental health. I drove into this blog July 2017 when my depression had reached an all-time low and I couldn't work and barely even left the house, and slowly, blog post by blog post I was starting to feel like myself again. I've still got a long way to go with my mental health, but I'm getting there and this blog really does help.
As for the future with the blog, I'm not really sure what I want. Six months ago I would have told you I want to turn it into my full-time job, which I would still love, but I also love my job right now so I'm not too fussy if that didn't happen anytime soon. It would be nice to have some brands sponsor a few posts and I'm working really hard to get noticed (So PLEASE share the blog if you like reading! It doesn't seem like much but it honestly helps, and I'm eternally grateful of every person who shares!)
But the ultimate goal for this has been to help people, if we can reassure just one other family who gets a diagnosis of Down Syndrome or Klinefelter's Syndrome or even both, I will be happy with that.
Questions we get asked about having a child with special needs
Happy October!!
Did you know October is Down Syndrome awareness month?
For my first post in October, I wanted to answer some questions Sam and I get asked a lot since we had Harry and got his diagnosis.
1. The first question we always get asked is, did you know when you were pregnant?
No, we made the choice while I was pregnant that we didn't want to know. It was a really personal choice for us but we researched the process of the testing and decided that if the results of the first test came back high risk we weren't comfortable with getting other tests, with the risk that comes with them, and so refused all testing. If the NIPT had been widely available when I was pregnant we would have chosen that because it comes with 0% chance of miscarriage.
2. How is having a child with Downs different to having a 'normal' child?
The real answer to this question is, honestly, how would we know? We only have Harry but we have always strived to treat him the same as we would have treated him if he had not had downs syndrome. Obviously, this hasn't always been possible, but we want Harry to grow up feeling like an equal to any brothers, sisters or cousins that may come along in the future.
3. Oh, aren't kids with Down Syndrome always happy and cuddly?
Have you seen Harry when we turn Paw Patrol off? Or tell him no? He has just as many tantrums as any other 2 year old! Sometimes I think he's worse. Don't get me wrong he will smile at every person in the street who gives him a little attention and he is such a flirt! But he certainly can strop and tantrum like the best of them!
4. So does he talk yet?
Yes and no, Harry can say words but at the moment he prefers to use his signs. He communicates perfectly with everyone who knows Makaton and we can carry a simple conversation with him, but he uses his words when needed. And since he moved to the toddler room at nursery he babbles constantly! Can't shut him up lately!
5. And finally, the most common question Sam and I get asked. Will you have more kids?
The answer to that question of course is Why wouldn't we? Our plan has always been to have two children, and of course Harry has different needs to other children and we have a slightly higher chance of having another child with special needs but our family doesn't quite feel complete without a little brother or sister for our monkey. I know, seeing him with his little cousin and any other babies he sees, Harry is going to be the very best big brother ever!
So that completes the first of my posts for World Down Syndrome Month 2018!! Happy October!!
Did you know October is Down Syndrome awareness month?
For my first post in October, I wanted to answer some questions Sam and I get asked a lot since we had Harry and got his diagnosis.
1. The first question we always get asked is, did you know when you were pregnant?
No, we made the choice while I was pregnant that we didn't want to know. It was a really personal choice for us but we researched the process of the testing and decided that if the results of the first test came back high risk we weren't comfortable with getting other tests, with the risk that comes with them, and so refused all testing. If the NIPT had been widely available when I was pregnant we would have chosen that because it comes with 0% chance of miscarriage.
2. How is having a child with Downs different to having a 'normal' child?
The real answer to this question is, honestly, how would we know? We only have Harry but we have always strived to treat him the same as we would have treated him if he had not had downs syndrome. Obviously, this hasn't always been possible, but we want Harry to grow up feeling like an equal to any brothers, sisters or cousins that may come along in the future.
3. Oh, aren't kids with Down Syndrome always happy and cuddly?
Have you seen Harry when we turn Paw Patrol off? Or tell him no? He has just as many tantrums as any other 2 year old! Sometimes I think he's worse. Don't get me wrong he will smile at every person in the street who gives him a little attention and he is such a flirt! But he certainly can strop and tantrum like the best of them!
4. So does he talk yet?
Yes and no, Harry can say words but at the moment he prefers to use his signs. He communicates perfectly with everyone who knows Makaton and we can carry a simple conversation with him, but he uses his words when needed. And since he moved to the toddler room at nursery he babbles constantly! Can't shut him up lately!
5. And finally, the most common question Sam and I get asked. Will you have more kids?
The answer to that question of course is Why wouldn't we? Our plan has always been to have two children, and of course Harry has different needs to other children and we have a slightly higher chance of having another child with special needs but our family doesn't quite feel complete without a little brother or sister for our monkey. I know, seeing him with his little cousin and any other babies he sees, Harry is going to be the very best big brother ever!
So that completes the first of my posts for World Down Syndrome Month 2018!! Happy October!!
Going back to work
Maternity leave for me was one of the hardest periods of my life. I loved spending time at home with Harry, getting to know him and learning how to be his mummy. During my maternity leave, I didn't have to worry about trying to get time off for any of Harry's appointments and I should have been the happiest I have ever been, but I wasn't.
Postnatal depression had taken hold. I rarely left the house unless someone forced me. In fact, I rarely even got dressed. Sam would come home from work to find me and Harry in front of the TV with the curtains still shut, still in our PJ's. The house was a mess and so was I. We had no money because let's face it maternity pay is awful. It just was not a good time for us. It had gotten to the point where I felt like I needed to go back to work.
I had already made the decision that I would be returning to work full time. It was an easy decision, we needed the money to pay for childcare and to live. Sam had just started on the path to his career, so I was the main breadwinner for a short time.
My first day back at work was scary. I had always been really good at my job, but after having nine months off I was a little rusty, and so much had changed while I was away, but the biggest thing was something I hadn't even considered. I was leaving Harry with a perfect stranger. For over 40 hours a week, someone else would be looking after my baby boy. I don't think it hit me until I saw my rota for my second week back at work.
I didn't cope very well at the end of my first day back at work. In fact, I pretty much had a complete breakdown, with tears and screaming and all the other horrible things that I'm embarrassed by now, but back then I clearly needed it. I honestly think that was the moment it hit me that I had completely wasted my maternity leave being depressed, it wasn't until around a month before I went back to work that I finally admitted I had a problem, and I still wasn't right. If I'm honest I probably wasn't in the right mind to go back to work, I wonder sometimes even now if I am now, almost three years down the line.
It took me a long time to finally feel better about being away from Harry for so much of the time. It also took me finding a job I love. I hated the job I returned to, which made going every day even harder. It also took us finding a nursery we love. One that we trust all the way. If we hadn't found that perfect mix I honestly don't think I would still be working at all, with Sam having a great job now. I work now because I want to not because I need to, and that really makes all the difference.
I still work full time now. I tried part-time for a little while but to be honest, I found I was bored and frustrated. I love my job and Harry loves his nursery, maybe in a few years when we start thinking about another baby I'll consider cutting down my hours, but for now I'm really in a good place and happy with where my life is going!
Postnatal depression had taken hold. I rarely left the house unless someone forced me. In fact, I rarely even got dressed. Sam would come home from work to find me and Harry in front of the TV with the curtains still shut, still in our PJ's. The house was a mess and so was I. We had no money because let's face it maternity pay is awful. It just was not a good time for us. It had gotten to the point where I felt like I needed to go back to work.
I had already made the decision that I would be returning to work full time. It was an easy decision, we needed the money to pay for childcare and to live. Sam had just started on the path to his career, so I was the main breadwinner for a short time.
My first day back at work was scary. I had always been really good at my job, but after having nine months off I was a little rusty, and so much had changed while I was away, but the biggest thing was something I hadn't even considered. I was leaving Harry with a perfect stranger. For over 40 hours a week, someone else would be looking after my baby boy. I don't think it hit me until I saw my rota for my second week back at work.
I didn't cope very well at the end of my first day back at work. In fact, I pretty much had a complete breakdown, with tears and screaming and all the other horrible things that I'm embarrassed by now, but back then I clearly needed it. I honestly think that was the moment it hit me that I had completely wasted my maternity leave being depressed, it wasn't until around a month before I went back to work that I finally admitted I had a problem, and I still wasn't right. If I'm honest I probably wasn't in the right mind to go back to work, I wonder sometimes even now if I am now, almost three years down the line.
It took me a long time to finally feel better about being away from Harry for so much of the time. It also took me finding a job I love. I hated the job I returned to, which made going every day even harder. It also took us finding a nursery we love. One that we trust all the way. If we hadn't found that perfect mix I honestly don't think I would still be working at all, with Sam having a great job now. I work now because I want to not because I need to, and that really makes all the difference.
I still work full time now. I tried part-time for a little while but to be honest, I found I was bored and frustrated. I love my job and Harry loves his nursery, maybe in a few years when we start thinking about another baby I'll consider cutting down my hours, but for now I'm really in a good place and happy with where my life is going!
A Harry update - August 2018
So, I'm not exactly sure if I've done one of these before but I wanted to write a quick post to let you know all about Harry's updates!!
Milestones Harry has hit recently;
By recently I'm talking the last six months or so. Ask any parent, seeing their child hit any milestone is a huge deal, but for me, I feel that Harry has to work slightly harder to hit his milestones and so I feel all the prouder when he does!
Going back six months Harry was barely able to weight bear on his legs and couldn't crawl. He was barely able to sit unaided and couldn't move from laying to a sitting position. He now can sit unaided confidently, pull himself into a sitting position, bum shuffle, crawl (in his own special way) and is just starting to walk! We are beyond proud of him.
Harry has also picked up Makaton like a star! He can communicate exactly what he wants with his favourite signs being 'cake', 'sandwich' and 'Tumble' (Thanks Mr Tumble). He also says words such as 'mama' 'dada' 'harry' 'cake' 'nanny' 'grandad' and his favourite word 'HIYA' but he seems lots more comfortable signing at the minute.
Healthwise Harry is doing fab! He was diagnosed with sleep apnea back in May which we were referred to Addenbrookes hospital for. His ENT consultant (ear, nose and throat) said that although Harry's adenoids are larger than normal he didn't feel that was what was causing the breathing problems and diagnosed Harry with Rhinitis and prescribed a steroid nasal spray which definitely seems to be helping! He still has the odd episode but nothing compared to what it was like before the spray! He also doesn't constantly have a running nose which is AMAZING!
When Harry was born he was diagnosed with a PDA or Patent Ductus Arterisus (hole in his heart) which had been getting smaller. Finally, on our most recent cardio appointment, we found out this has completely closed up!
However, while checking for the PDA Harry's heart doctor noticed something new. An AVSD. This is a hole in the heart that is common in children with Downs but wanting to be sure of what he was seeing and what the best course of action was with it, the doctor referred us to Great Ormand Street Children's Hospital (GOSH) for a second opinion.
GOSH are the best there is when it comes to treating children, and we were happy to be in such great hands, but as a parent, there is nothing scarier than being told your child will be seeing a consultant at GOSH. You only really get referred there when its something serious, so knowing that there was some real concern about this AVSD was honestly a horrible time. Waiting for that appointment has been the longest two months of our life.
Harry has now had his appointment with the amazing consultant from GOSH who looked in depth at Harry's heart and told us that right now, its not causing him issues and is so small he feels he would be doing more damage than good going in to repair it, which honestly was the best thing I've heard all year! We know the likelihood is that Harry will eventually need this hole and leak repair, but doing it when he is bigger means that they can do keyhole surgery rather than open-heart meaning the risk is a lot less! So we are back at six monthly reviews for his heart and now he will be seen by GOSH rather than his old heart doctor but we are thankful for the little successes!
One of the biggest thing happening for Harry right now is his transition into the toddler room at the nursery. Normally children only stay in the baby room until they are two, however, between us and the nursery staff, we decided that when he turned two, Harry just wasn't ready for the transition and so the nursery said that they would keep Harry in baby room for a while longer. So about a month ago, the girls asked us to come in for a meeting where they told us they thought Harry was ready to give moving up a try! He's had a few sessions so far and the plan is to move him up permanently in September!
All in all, Harry is doing pretty brilliantly!! I will try and post one of these updates every 6 months or so, so keep your eyes out for them and all of the other posts in between!!
Milestones Harry has hit recently;
By recently I'm talking the last six months or so. Ask any parent, seeing their child hit any milestone is a huge deal, but for me, I feel that Harry has to work slightly harder to hit his milestones and so I feel all the prouder when he does!
Going back six months Harry was barely able to weight bear on his legs and couldn't crawl. He was barely able to sit unaided and couldn't move from laying to a sitting position. He now can sit unaided confidently, pull himself into a sitting position, bum shuffle, crawl (in his own special way) and is just starting to walk! We are beyond proud of him.
Harry has also picked up Makaton like a star! He can communicate exactly what he wants with his favourite signs being 'cake', 'sandwich' and 'Tumble' (Thanks Mr Tumble). He also says words such as 'mama' 'dada' 'harry' 'cake' 'nanny' 'grandad' and his favourite word 'HIYA' but he seems lots more comfortable signing at the minute.
Healthwise Harry is doing fab! He was diagnosed with sleep apnea back in May which we were referred to Addenbrookes hospital for. His ENT consultant (ear, nose and throat) said that although Harry's adenoids are larger than normal he didn't feel that was what was causing the breathing problems and diagnosed Harry with Rhinitis and prescribed a steroid nasal spray which definitely seems to be helping! He still has the odd episode but nothing compared to what it was like before the spray! He also doesn't constantly have a running nose which is AMAZING!
When Harry was born he was diagnosed with a PDA or Patent Ductus Arterisus (hole in his heart) which had been getting smaller. Finally, on our most recent cardio appointment, we found out this has completely closed up!
However, while checking for the PDA Harry's heart doctor noticed something new. An AVSD. This is a hole in the heart that is common in children with Downs but wanting to be sure of what he was seeing and what the best course of action was with it, the doctor referred us to Great Ormand Street Children's Hospital (GOSH) for a second opinion.
GOSH are the best there is when it comes to treating children, and we were happy to be in such great hands, but as a parent, there is nothing scarier than being told your child will be seeing a consultant at GOSH. You only really get referred there when its something serious, so knowing that there was some real concern about this AVSD was honestly a horrible time. Waiting for that appointment has been the longest two months of our life.
Harry has now had his appointment with the amazing consultant from GOSH who looked in depth at Harry's heart and told us that right now, its not causing him issues and is so small he feels he would be doing more damage than good going in to repair it, which honestly was the best thing I've heard all year! We know the likelihood is that Harry will eventually need this hole and leak repair, but doing it when he is bigger means that they can do keyhole surgery rather than open-heart meaning the risk is a lot less! So we are back at six monthly reviews for his heart and now he will be seen by GOSH rather than his old heart doctor but we are thankful for the little successes!
One of the biggest thing happening for Harry right now is his transition into the toddler room at the nursery. Normally children only stay in the baby room until they are two, however, between us and the nursery staff, we decided that when he turned two, Harry just wasn't ready for the transition and so the nursery said that they would keep Harry in baby room for a while longer. So about a month ago, the girls asked us to come in for a meeting where they told us they thought Harry was ready to give moving up a try! He's had a few sessions so far and the plan is to move him up permanently in September!
All in all, Harry is doing pretty brilliantly!! I will try and post one of these updates every 6 months or so, so keep your eyes out for them and all of the other posts in between!!
Harry - More than a diagnosis
Harry is almost two and a half. He is almost 3ft tall and weights 11kg. His favourite food is bread, or maybe cake (its the sign he knows best for sure!) and he LOVES to watch Mr Tumble and Paw Patrol.
But why am I telling you all of this?
Because Harry is a person in his own right. He is a cheeky monkey with an attitude that puts me to shame! But most importantly, Harry is Harry, he is more than a diagnosis.
When we first meet people we introduce Harry and I can always feel the questions, they know something is different about him but they don't want to ask, in case they are wrong or in case I go off on one I guess, but I always want them to see Harry as Harry so we don't mention his diagnosis until someone asks, which honestly doesn't always happen. It usually comes about when they mention how small he is (he is comfortably in 18-24 month clothes) or ask why he isn't walking yet (we're getting there!). When we do say that Harry has down syndrome we always get the same responses;
'Oh, I'm so sorry'
'They are the most loving, happy kids aren't they'
'So what's it like?'
and I have to be honest, every single one of these responses bothers me. I understand that people haven't got a clue what to say when they hear that and I try not to let it get to me. There are things that i always want to say;
'Don't be sorry! There's absolutely NOTHING wrong with him!!'
'No, he can be a stubborn little monkey and has a stinking attitude sometimes, just like all the other 2-year-olds out there!!'
'Honestly, it's like having a 2-year-old. We don't know any different!'
I think its really important to remember that a diagnosis doesn't mean that a child, or a person of any age, any less of a person. and whatever their diagnosis, it doesn't define who they are!
Because Harry is a person in his own right. He is a cheeky monkey with an attitude that puts me to shame! But most importantly, Harry is Harry, he is more than a diagnosis.
When we first meet people we introduce Harry and I can always feel the questions, they know something is different about him but they don't want to ask, in case they are wrong or in case I go off on one I guess, but I always want them to see Harry as Harry so we don't mention his diagnosis until someone asks, which honestly doesn't always happen. It usually comes about when they mention how small he is (he is comfortably in 18-24 month clothes) or ask why he isn't walking yet (we're getting there!). When we do say that Harry has down syndrome we always get the same responses;
'Oh, I'm so sorry'
'They are the most loving, happy kids aren't they'
'So what's it like?'
and I have to be honest, every single one of these responses bothers me. I understand that people haven't got a clue what to say when they hear that and I try not to let it get to me. There are things that i always want to say;
'Don't be sorry! There's absolutely NOTHING wrong with him!!'
'No, he can be a stubborn little monkey and has a stinking attitude sometimes, just like all the other 2-year-olds out there!!'
'Honestly, it's like having a 2-year-old. We don't know any different!'
I think its really important to remember that a diagnosis doesn't mean that a child, or a person of any age, any less of a person. and whatever their diagnosis, it doesn't define who they are!
How to save money on your monthly food bill!
So, let's talk about food shopping. It's not something I have always been comfortable talking about due to the sheer amount of money we used to spend because like most people it was way too much!
So when we looked at booking our wedding we realised we needed to save money somewhere otherwise we would never be able to have the day we wanted and the first thing we wanted to look at was our food bill.
Sam and I do things differently to most people we know where we shop monthly rather than weekly, this is something we have always done probably because we have always been paid monthly and find that easier, but it used to be that we were paying our well over £200 a month on our main shop and then popping into the shops at least once a week to top up, which for two adults and a toddler is absolutely ridiculous! We now only spend on average £90 a month and only really top up with bread a milk as we need it! Heres my tips for how to save money on your food bill!
1. Don't take your children shopping! We always used to take Harry shopping with us and I have always been terrible for buying him whatever he sees that he wants. If he saw something and asks for it which generally ends up in our trolley, which can cost a lot of money each shopping trip! Now we tend to go shopping when he is at nursery or when he is being looked after by one of his grandparents (THANK YOU!) because I then don't feel the need to buy him loads of stuff if he isn't there!
2. Think about changing where you shop. I know this isn't the easiest for everyone because you may not be able to shop around but this honestly for us was the biggest money saver! We have always shopped at Tesco, ever since we moved in together it was just what worked for us but it can work out quite expensive so we decided to give Aldi a try and honestly it has to have been the biggest money saver!
3. Ditch the brands! We haven't really been big brand shoppers but there are definitely things that we liked certain brands of, such as Hovis bread and Heinz mayo but we've learnt that those things can work out pricey and Aldi don't generally sell them which meant that we would have to shop at different shops, and who can really be bothered with that? so now we just buy whatever Aldi have and it is so much cheaper and easier!
4. Meal plan! I know, you are all rolling your eyes at me but seriously do it! I've lost count of the number of times I've had to go shopping for random meals because we hadn't brought enough to last the month. And always in these top-up shops will I buy things we don't need because I just fancy them. Now before we go shopping Sam and I will sit down and write out our meal plan for the month. I'm not saying that we stick to it religiously but we always now have enough food to last us and know exactly what we need.
5. Check what you've got in before you go! The number of times we have gone shopping and been convinced that we need beans (i don't know why but it's always beans) to get home to at least four tins! What a waste of money! So now before we go, after we have done our meal plan we look through our cupboards and freezer to see what we actually have in and how good it is. I also try to sort out our cupboards once a month, even though it doesn't always work out that way just so I know whats in there and we don't end up over buying anything. We also usually find we have enough to last a few meals, meaning we won't be spending as much in the shop!
6. Write a shopping list - and stick to it! I know, I can feel the eyes rolling again. Who hasn't given you that advice? But who actually follows it? Because honestly I am the worse person for impulse buys and it took us a good few months to get to the point of remembering our list every time and even longer to get me to stick to it! Sam has had to be very strict at this point but I think I'm finally there and we've definitely noticed a big difference!!
7. Bulk buy toiletries and dry food - Our biggest saving has been on pasta, rice and toilet rolls by buying in bulk. Last month we brought 24 toilet rolls and I believe it came to £5.24. We have barely made a dent in these in the month and a half and probably won't need to buy more in next months shopping either. Also, the 3kg bags of pasta and rice tend to last us up to two months. Definitely a great bargain for £3 a bag!
8. Use cheaper cuts of meat - This one was hard for me. I am seriously a fussy eater. I don't normally like chicken on the bone so would only eat chicken breasts, however, we have noticed that the price difference between breast and thighs so for meals like curry's we use thigh meat as we eat a curry at least once a week! We've also swapped our mince from beef mince to a mixture of beef and pork mince we found in Aldi. It's about £1 a kilo cheaper and honestly, once it's in a spag bol or chilli, I don't even notice it, and I HATE pork.
9. Bulk out your meals with veg - Every meal in our house now either has veg mixed in, like spag bol, chilli or pasta or comes with a side of veg. This means the meat stretches and can usually be used for a lunch for us or a quick meal if Sam is on a funny shift where it used to only last one meal. We have also noticed since doing this we snack less and are fuller for longer!
10. Avoid jars of sauce and ready-made food. It doesn't take that long to make a spag bol or chilli from scratch, it's cheaper and its better for you! Also when Harry gets a little older it will be something we can do together to help him get involved in the kitchen!
So those are my tips! Did I miss anything that you do to save money? Let me know!
Also don't forget to check us out on Facebook, instagram and Youtube!
So when we looked at booking our wedding we realised we needed to save money somewhere otherwise we would never be able to have the day we wanted and the first thing we wanted to look at was our food bill.
Sam and I do things differently to most people we know where we shop monthly rather than weekly, this is something we have always done probably because we have always been paid monthly and find that easier, but it used to be that we were paying our well over £200 a month on our main shop and then popping into the shops at least once a week to top up, which for two adults and a toddler is absolutely ridiculous! We now only spend on average £90 a month and only really top up with bread a milk as we need it! Heres my tips for how to save money on your food bill!
1. Don't take your children shopping! We always used to take Harry shopping with us and I have always been terrible for buying him whatever he sees that he wants. If he saw something and asks for it which generally ends up in our trolley, which can cost a lot of money each shopping trip! Now we tend to go shopping when he is at nursery or when he is being looked after by one of his grandparents (THANK YOU!) because I then don't feel the need to buy him loads of stuff if he isn't there!
2. Think about changing where you shop. I know this isn't the easiest for everyone because you may not be able to shop around but this honestly for us was the biggest money saver! We have always shopped at Tesco, ever since we moved in together it was just what worked for us but it can work out quite expensive so we decided to give Aldi a try and honestly it has to have been the biggest money saver!
3. Ditch the brands! We haven't really been big brand shoppers but there are definitely things that we liked certain brands of, such as Hovis bread and Heinz mayo but we've learnt that those things can work out pricey and Aldi don't generally sell them which meant that we would have to shop at different shops, and who can really be bothered with that? so now we just buy whatever Aldi have and it is so much cheaper and easier!
4. Meal plan! I know, you are all rolling your eyes at me but seriously do it! I've lost count of the number of times I've had to go shopping for random meals because we hadn't brought enough to last the month. And always in these top-up shops will I buy things we don't need because I just fancy them. Now before we go shopping Sam and I will sit down and write out our meal plan for the month. I'm not saying that we stick to it religiously but we always now have enough food to last us and know exactly what we need.
5. Check what you've got in before you go! The number of times we have gone shopping and been convinced that we need beans (i don't know why but it's always beans) to get home to at least four tins! What a waste of money! So now before we go, after we have done our meal plan we look through our cupboards and freezer to see what we actually have in and how good it is. I also try to sort out our cupboards once a month, even though it doesn't always work out that way just so I know whats in there and we don't end up over buying anything. We also usually find we have enough to last a few meals, meaning we won't be spending as much in the shop!
6. Write a shopping list - and stick to it! I know, I can feel the eyes rolling again. Who hasn't given you that advice? But who actually follows it? Because honestly I am the worse person for impulse buys and it took us a good few months to get to the point of remembering our list every time and even longer to get me to stick to it! Sam has had to be very strict at this point but I think I'm finally there and we've definitely noticed a big difference!!
7. Bulk buy toiletries and dry food - Our biggest saving has been on pasta, rice and toilet rolls by buying in bulk. Last month we brought 24 toilet rolls and I believe it came to £5.24. We have barely made a dent in these in the month and a half and probably won't need to buy more in next months shopping either. Also, the 3kg bags of pasta and rice tend to last us up to two months. Definitely a great bargain for £3 a bag!
8. Use cheaper cuts of meat - This one was hard for me. I am seriously a fussy eater. I don't normally like chicken on the bone so would only eat chicken breasts, however, we have noticed that the price difference between breast and thighs so for meals like curry's we use thigh meat as we eat a curry at least once a week! We've also swapped our mince from beef mince to a mixture of beef and pork mince we found in Aldi. It's about £1 a kilo cheaper and honestly, once it's in a spag bol or chilli, I don't even notice it, and I HATE pork.
9. Bulk out your meals with veg - Every meal in our house now either has veg mixed in, like spag bol, chilli or pasta or comes with a side of veg. This means the meat stretches and can usually be used for a lunch for us or a quick meal if Sam is on a funny shift where it used to only last one meal. We have also noticed since doing this we snack less and are fuller for longer!
10. Avoid jars of sauce and ready-made food. It doesn't take that long to make a spag bol or chilli from scratch, it's cheaper and its better for you! Also when Harry gets a little older it will be something we can do together to help him get involved in the kitchen!
So those are my tips! Did I miss anything that you do to save money? Let me know!
Also don't forget to check us out on Facebook, instagram and Youtube!
Why we chose NOT to get Harry christened
When we had Harry we had a lot of questions about when we were getting him christened. Our answer was always the same, we aren't.
When I was born in the early 90's, it was just the done thing. I have been christened, my sister and brother have both been christened, Sam and his brother are christened and all of the kids I grew up with were christened. So when we announced we were pregnant it was just assumed that our child would be christened too.
Sam and I talked about this lots when we were pregnant, and even more, after Harry was born. We aren't religious in the slightest, in fact, the only time I have ever been into a church was to attend christenings of younger siblings or other children in our social group growing up. We felt that if Harry, and any other children we may have in the future, wanted to be christened later on in life we would respect that and of course, it would happen, but while he is too young to make that decision, we would not be christening Harry.
It was an important decision for us because we felt that a christening really didn't mean anything as we do not believe.
I know there are plenty of reasons that people christen their child. Some come from families like mine and it is just expected. Others feel like it will make the child feel left out if they are not christened because all of their friend's children are getting christened. Some do it because there is a belief that their children will be able to go to better schools with religious views. And then there are the people who do it because they are strongly religious and that is what is done.
After speaking to some other parents about why they made the choice they did about christenings, these are some of the answers we got.
Cheryl from http://mummyof5miracles.com/ said 'I chose naming ceremonies for my children as I am not religious in the slightest but still wanted them to have a special day. Instead of godparents they have supportive parents.'
Amy Treasure (https://www.amytreasure.com/) said 'I think it makes sense not to christen children unless you are a person of faith.'
And Rachel, from https://lukeosaurusandme.co.uk/, said 'I've not been christened and I'm not religious so wouldn't christen my children. I think they can make their own decisions when they are older'
So there are lots of people who chose not to christen their children, but that doesn't mean its wrong to if you chose to. It is your choice.
I know there are plenty of reasons that people christen their child. Some come from families like mine and it is just expected. Others feel like it will make the child feel left out if they are not christened because all of their friend's children are getting christened. Some do it because there is a belief that their children will be able to go to better schools with religious views. And then there are the people who do it because they are strongly religious and that is what is done.
After speaking to some other parents about why they made the choice they did about christenings, these are some of the answers we got.
Cheryl from http://mummyof5miracles.com/ said 'I chose naming ceremonies for my children as I am not religious in the slightest but still wanted them to have a special day. Instead of godparents they have supportive parents.'
Amy Treasure (https://www.amytreasure.com/) said 'I think it makes sense not to christen children unless you are a person of faith.'
And Rachel, from https://lukeosaurusandme.co.uk/, said 'I've not been christened and I'm not religious so wouldn't christen my children. I think they can make their own decisions when they are older'
So there are lots of people who chose not to christen their children, but that doesn't mean its wrong to if you chose to. It is your choice.
How I handle being a mum and working full-time
Working full-time and being a parent was never something I had planned on doing. It was my intention when I got pregnant with Harry was to stay home for a year after he was born and then to work part-time while he got some socialisation at a nursery, but plans don't always work out the way you think they will.
Going back to work full-time is what worked out best for me and my family. This doesn't mean that all parents should work full-time after having a baby, different things work better for different people. But for my own sanity, full-time work is what worked out best.
Having not planned for me working full-time, Sam and I had no idea how we were going to make it work with the shifts he works. Because I don't drive we needed to work out how we were going to get Harry to nursery and me to work on time when Sam wasn't there to do drop offs. We are so incredibly lucky to have the support of family around.
Our typical work morning, when it's just me and Sam goes a little something like this;
Harry normally wakes up around 5am (not my favourite time for him to wake. I miss the time that he used to get into bed with me and go back to sleep) Sam's usually still at home at this point so he gets a cuddle for half an hour while I get to wake up slowly, and then Sam gets ready for work and I get up and start getting Harry ready. Once Harry is dressed he goes into his room and plays with his toys (his room is more like a playroom with a bed, to be honest) while I get myself ready. Usually, by this point, Sam has left and we have about an hour before Harry is picked up and I have to leave for work. We are really lucky with Harry's nursery that he gets all of his meals provided so I don't give him breakfast during the week because it messes with his routine at nursery so we normally sit either in mine and Sams room or in the living room watching TV(Usually Mr Tumble, even though I really hate it) and I finish getting ready and if I have time do a quick spruce up of the downstairs if its needed. The Harry is picked up, usually by Sam's dad as he works on the same site as Harry's nursery and I go to work.
If its a weekend and I need to work its usually the same sort of routine, and Harry will go to either Sam's parents house or my dad's until one of us is finished work. He LOVES nursery or going to his grandparents. He gets spoilt ridiculously and it feels like a treat to him.
I wouldn't be able to work full-time without the support we get from our family. I know I haven't mentioned my mum in this but she helps as much as she can living over a hundred miles away. Whenever she visits she will wake with Harry, take him if we need it and give us a break even if its so I can have a glass of wine without feeling guilty. We are forever grateful for all the help and support we have from our family, not only with picking Harry up when we have no way to get him to or from his nursery, but giving us a break when things are overwhelming us and being there to talk to when we need it. I don't think we could have ever done this without them all! So shout out to Harry's grandparents who are literal god sends!!
Going back to work full-time is what worked out best for me and my family. This doesn't mean that all parents should work full-time after having a baby, different things work better for different people. But for my own sanity, full-time work is what worked out best.
Having not planned for me working full-time, Sam and I had no idea how we were going to make it work with the shifts he works. Because I don't drive we needed to work out how we were going to get Harry to nursery and me to work on time when Sam wasn't there to do drop offs. We are so incredibly lucky to have the support of family around.
Our typical work morning, when it's just me and Sam goes a little something like this;
Harry normally wakes up around 5am (not my favourite time for him to wake. I miss the time that he used to get into bed with me and go back to sleep) Sam's usually still at home at this point so he gets a cuddle for half an hour while I get to wake up slowly, and then Sam gets ready for work and I get up and start getting Harry ready. Once Harry is dressed he goes into his room and plays with his toys (his room is more like a playroom with a bed, to be honest) while I get myself ready. Usually, by this point, Sam has left and we have about an hour before Harry is picked up and I have to leave for work. We are really lucky with Harry's nursery that he gets all of his meals provided so I don't give him breakfast during the week because it messes with his routine at nursery so we normally sit either in mine and Sams room or in the living room watching TV(Usually Mr Tumble, even though I really hate it) and I finish getting ready and if I have time do a quick spruce up of the downstairs if its needed. The Harry is picked up, usually by Sam's dad as he works on the same site as Harry's nursery and I go to work.
If its a weekend and I need to work its usually the same sort of routine, and Harry will go to either Sam's parents house or my dad's until one of us is finished work. He LOVES nursery or going to his grandparents. He gets spoilt ridiculously and it feels like a treat to him.
I wouldn't be able to work full-time without the support we get from our family. I know I haven't mentioned my mum in this but she helps as much as she can living over a hundred miles away. Whenever she visits she will wake with Harry, take him if we need it and give us a break even if its so I can have a glass of wine without feeling guilty. We are forever grateful for all the help and support we have from our family, not only with picking Harry up when we have no way to get him to or from his nursery, but giving us a break when things are overwhelming us and being there to talk to when we need it. I don't think we could have ever done this without them all! So shout out to Harry's grandparents who are literal god sends!!
Why we chose Nursery for Harry
Something I always said before we had Harry was I didn't want him going into childcare. My view was 'I'm not having children for someone else to raise them' It was something that had been drilled into me, mum's stayed home while dad's earned the money, however, life just isn't like that anymore.
I have never been the type of person who is happy to stay at home all day every day, relying on Sam to bring in the money, feeling like I have to ask for every little thing that isn't essential because he earns all of the money. And if I'm being honest Sam has never been comfortable with that either, from the very beginning we have been equals and its never been a case of 'his' and 'mine', it has always been 'ours'.
So while I was on maternity leave and bored out of my mind before Harry was born, I was desperate to get back to work. I hated being home while all of my friends were working. I must have watched pretty much everything Netflix had to offer at the time and still was bored. Sam would have a day off and I would demand to do something, anything to get me out of the rut I felt I was in.
Once Harry was born, and especially in the three weeks he spent in NICU, I couldn't imagine leaving him. He was tiny and so precious, and he needed me, but a couple of months after we finally got to bring him home, I was itching to get out there. I had gotten to a point with my PND that I rarely got dressed, the curtains very rarely got opened and poor Harry was getting very little stimulation from me. Sam knew something had to change, and so in the August after Harry was born, I got back in touch with work and told them I was coming back in October when my maternity pay ran out. Thankfully I had four weeks holiday to use before the December and so we arranged for me to take those at the end of my maternity meaning I didn't actually have to go back until the November.
After that phone call, I got myself to the doctors, was diagnosed with depression and started my tablets to try and help me get my head straight.
Sam and I had had a long conversation about whether I would be returning to work full or part time. This was difficult for me as I had felt, and still do, that I had missed out on so much time with Harry when I had let my depression get so bad. I wanted to do part-time, but financially with childcare costs on top of everything else we needed to pay out for, we just couldn't see how we would make it work so I agreed to return to work full-time.
Then we needed to decide on childcare for Harry who at the time was only six months old, and i was concerned that, with his 'special needs' we needed somewhere they had experience with children with special needs. We used a childminder for a while but Harry didn't seem to be getting on there and so we decided to change to a nursery.
Looking at nursery's were scary. We didn't know what we needed to be looking for, what questions we needed to ask, what was a good price and things like that.
We looked at a few that were ridiculously expensive and with both of us on a decent wage we weren't going to get much help with paying for it, so those were out.
Then we found THE ONE. It wasn't too expensive, was perfectly located and had everything we were looking for. So we bit the bullet and went for it.
Harry's first full day with out us i must have checked my phone a million and one times before lunch but when we picked him up and saw the smile on his face we knew we had done the right thing and if I'm being honest we have never looked back. He moves from the baby room to toddlers in September and i could cry thinking about leaving the girls behind that have helped him. I have always said without them Harry wouldn't be where he is now. They have taken everything in their stride with him and he is now such a confident, happy little boy now.
I am thankful I needed to go back to work. It has given me time to be Kat and not just mummy. It has meant Harry has friends and i know he's safe. It means he gets the support he needs to develop. And we love it.
Packing for and surviving labour!
It has been more than two years since I packed my hospital bag, but I was thinking about it the other day and how hard it was finding what I should put into it! So I decided to write this post for all the first time mum's out there about to pack their hospital bag and wondering what the heck they should put in it.
The first thing I would say about putting in your hospital bag is food. After 6 days of being in slow labour and food making me throw up and almost 10 hours in active labour kitchen in my hospital was closed and once I was taken to the ward, Sam was sent home and all they had to give me to eat was an egg and cress sandwich. Safe to say I was not impressed. In the slightest. So make sure you have plenty of food with you! No matter what it is TAKE FOOD!
Next, I would suggest getting yourself down to your nearest Primark and get what I call a granny nighty. I practically lived in mine for the week I was in the hospital after giving birth. They look hideous but my gosh are they comfy when you are all stretched out and sore!
Obviously, you need the normal things that will be on every list. Maternity pads and breast pads. I used Tesco's own for mine and they were great.
Huge knickers are also a must!!
Take a flannel to keep yourself cool whilst in labour. No matter what time of the year it is that you will be giving birth because giving birth makes you HOT!
Phone chargers are important not just for you but for your birthing partner too. It could be a LONG TIME. I would also suggest packing food and something for your birthing partner to do. I didn't want Sam near me and he got a little bit bored (which lead to his phone dying). Also, you will get a million and one texts asking if there is any news. Do not feel that you need to answer these. You are in labour. You will tell them when there is news.
Loose clothing is a good idea for after birth as you have no idea how sore you will be. Again I went to Primark for these and paid £2.50 for a pair of black leggings. Lifesavers!
I wouldn't go overboard with packing your bag though. Most women are home the same day as giving birth as long as there are no issues!
Good luck!
The first thing I would say about putting in your hospital bag is food. After 6 days of being in slow labour and food making me throw up and almost 10 hours in active labour kitchen in my hospital was closed and once I was taken to the ward, Sam was sent home and all they had to give me to eat was an egg and cress sandwich. Safe to say I was not impressed. In the slightest. So make sure you have plenty of food with you! No matter what it is TAKE FOOD!
Next, I would suggest getting yourself down to your nearest Primark and get what I call a granny nighty. I practically lived in mine for the week I was in the hospital after giving birth. They look hideous but my gosh are they comfy when you are all stretched out and sore!
Obviously, you need the normal things that will be on every list. Maternity pads and breast pads. I used Tesco's own for mine and they were great.
Huge knickers are also a must!!
Take a flannel to keep yourself cool whilst in labour. No matter what time of the year it is that you will be giving birth because giving birth makes you HOT!
Phone chargers are important not just for you but for your birthing partner too. It could be a LONG TIME. I would also suggest packing food and something for your birthing partner to do. I didn't want Sam near me and he got a little bit bored (which lead to his phone dying). Also, you will get a million and one texts asking if there is any news. Do not feel that you need to answer these. You are in labour. You will tell them when there is news.
Loose clothing is a good idea for after birth as you have no idea how sore you will be. Again I went to Primark for these and paid £2.50 for a pair of black leggings. Lifesavers!
I wouldn't go overboard with packing your bag though. Most women are home the same day as giving birth as long as there are no issues!
Good luck!
Sleep Apnea
As you may be aware, after asking for a sleep study for what feels like months, in January Harry was diagnosed with Sleep Apnea. I had absolutely no idea what this was or any questions that we should ask about it so, while we are awaiting his ENT appointment in Cambridge I decided to do a little research.
What is sleep apnea?
Sleep apnea is the phrase or name used to describe the condition in which a person stops, or has interrupted breathing in their sleep. In serious cases, this can happen hundreds of times a night and this means that the body, and more importantly, the brain will not be receiving enough oxygen, causing health issues.
There are two different types of Sleep apnea; Obstructive sleep apnea (OSA) and Central sleep apnea (CSA)
Obstructive Sleep Apnea
This is when the airways are blocked while the person is sleeping, usually by the adenoids or tonsils, or is blocked when the soft tissue in the back of the throat collapses, again blocking the airways. This is the most common type of sleep apnea.
Central sleep apnea
This type of sleep apnea is less common but much more serious. This is where the brain doesn't signal the muscles to do what they need to in order to breathe. This is usually caused by an instability in the respiratory control centre.
We are very lucky in the way that Harry has OSA and this is easier to treat. After seeing an ENT (ear, nose and throat) specialist in Cambridge we found that Harry's sleep apnea is more than likely caused by the fact he has Rhinitis, which is an irritation or inflammation of the mucous membrane in the nose, which explains why Harry always has a runny nose! So we are trying a steriod nasal spray to see if that helps any.
We will, of course, keep you updated!
What is sleep apnea?
Sleep apnea is the phrase or name used to describe the condition in which a person stops, or has interrupted breathing in their sleep. In serious cases, this can happen hundreds of times a night and this means that the body, and more importantly, the brain will not be receiving enough oxygen, causing health issues.
There are two different types of Sleep apnea; Obstructive sleep apnea (OSA) and Central sleep apnea (CSA)
Obstructive Sleep Apnea
This is when the airways are blocked while the person is sleeping, usually by the adenoids or tonsils, or is blocked when the soft tissue in the back of the throat collapses, again blocking the airways. This is the most common type of sleep apnea.
Central sleep apnea
This type of sleep apnea is less common but much more serious. This is where the brain doesn't signal the muscles to do what they need to in order to breathe. This is usually caused by an instability in the respiratory control centre.
We are very lucky in the way that Harry has OSA and this is easier to treat. After seeing an ENT (ear, nose and throat) specialist in Cambridge we found that Harry's sleep apnea is more than likely caused by the fact he has Rhinitis, which is an irritation or inflammation of the mucous membrane in the nose, which explains why Harry always has a runny nose! So we are trying a steriod nasal spray to see if that helps any.
We will, of course, keep you updated!
5 wishes for Harry's Future
Sam and I are often asked what school we will be hoping to send Harry to, special needs or mainstream? It seems important for people to know and, even though they have no idea what they are talking about, to question our answer.
Our answer has always been the same. Whatever works for Harry. He currently attends a mainstream nursery and is blooming there, so ideally we would love for a mainstream school to work for him. We swore when we found out his diagnosis that we would never treat him any differently then we would have if he didn't have Down's syndrome or Klinefelter's syndrome, and we have worked hard to keep to that as much as possible. So it always confuses me that people question why we would attempt mainstream schooling. If it doesn't work, we step back and reconsider, as we always have with Harry.
This got me thinking, What things are really important for us to aim for with Harry. What dreams do we have for his future, this is the list we came up with;
1. Do well in school. For this one we aren't talking about grades necessarily, I mean that we want him to be involved in things, like teams or after school clubs, making friends and just generally enjoy school. For me, this is what doing well in school means.
2. Achieve. We are very much in the frame of mind that Harry is a person, and as such we try not to dictate things for him, such as things like which football team he will support (I have refused point blank to let anyone buy him anything to do with football teams) or what we want him to be interested in. if he wants to be a dancer, go for it, if he wants to be a poet good on him. We really have no preference, but the most important things for us is that he works hard and gives it everything he's got to achieve his dreams.
3. To be accepted. This is a great fear for us. It took a long time for us to accept that, as much as we treat him as normally as possible there are people we know who don't and who he will come in contact with in the future who won't. To them he is different. I work hard every single day to try and raise awareness in the hope that Harry will never meet people who will treat him badly because of his diagnosis.
4. He lives in a world that he feels safe in. As an adult and a parent, I am shocked at all the things in the world that make me scared or feel unsafe. I wish I could protect Harry from these things forever, but most of all I want him to feel safe walking down the street or driving a car and the things that scare me aren't there when he's out in the world on his own.
5. That he can look after himself. This one is my most important and actually didn't come around because of his diagnosis. Sam and I aren't going to be around forever, and I want to leave Harry, as well as any other children we may have, with all the skills he will need to look after himself when we are gone. I want him to know the value of money and that nothing is handed to you on a plate. That bills need paying and debt is a dangerous thing. I want him to be able to cook and use the washing machine and all the other things that come with 'Adulting'
What's in my toddler's changing bag?
I've seen a lot of these video's on Youtube and decided to do my own version here on the blog. These are some of my favourite video's to watch, mostly because I'm nosy, but also because I'm always worried I'm not carrying the right stuff for Harry. So hopefully, if you are looking for what to pack in your changing bag for your toddler, this will give you some ideas.
Let's start with the bag we use itself. When Harry was around 14 months old the original changing bag we used broke and we started looking at new bags for him. With him starting nursery we wanted something he could take with him that would last for the entire time he was there and so decided that a normal baby changing bag just wouldn't work for us, and we didn't want to spend that kind of money, as many of them are between £60 and £120, on something that just wouldn't last, so we started looking at backpacks. This in itself came with its own set of dilemmas, do we go for a character backpack, like paw patrol, and risk him growing out of paw patrol before we finished with the bag or a nice simple one? It needed to be big enough to carry all of the bits he needed at 14 months but small enough that he could carry it himself if he wanted to once he started walking. I looked everywhere and FINALLY found myfirstyears.com. I had heard about them before and eyed up a few things but I had never seen the backpacks. It had everything that we had been looking for and I loved that we could personalise it too! I fell instantly in love with the blue star design and for £30 with free personalisation, it felt like a steal! I'm actually looking into ordering another bag in a different design because I honestly feel that they are perfect! (you can find Harry's backpack here https://www.my1styears.com/large-personalised-star-backpack.html)
Now let's move on to changing bag essentials. Nappies first of all. We like to keep at least six nappies in Harry's changing bag at any one time, just to be safe and to ensure he has enough when he is at nursery. Currently, Harry is in size 5 nappies and we use the mamia brand from Aldi as we have since birth.
Choosing the right nappies was a very important decision for Sam and me when we found out we were having Harry. Price, although we didn't want to be spending huge amounts on them, was never the point so we did lots of research into finding what people believed was the best nappies and mamia came up time and time again during this searching so we decided to give them a try, especially after Sam's cousin had her baby in the January of 2016 and recommended them to us over Pampers which she had used first of all. In a pinch, Harry has used Pampers but we have found that they have leaked and even gave Harry a rash once.
Wipes are the next most important thing in Harry's changing bag and we always ensure there is at least one pack in the bag at all times, depending on how full the pack is sometimes two. We are using the Tesco baby ultra soft fragrance-free wipes but this was not always the case.
At our baby shower, we were brought a johnsons gift pack which along with bath things had a pack of their Johnsons baby extra sensitive wipes. We used these from when Harry was about six weeks old once we felt he didn't need for us to use cotton wool and water anymore. However, after a few months, we noticed that wherever we were using the wipes on Harry like to wipe his face or hands and cleaning his nappy area, he was getting irritated skin and so we decided to try out some different wipes and found that the Tesco ones worked for him.
For a nappy cream, we use the Palmers cocoa butter bottom butter. This again was a gift from our baby shower and although expensive (£3.75 for 125g) you only need the tiniest bit and this is the only cream that helped with Harry's nappy rash. Sudocreme was recommended to us by dozens of people, including my mum, we found that it dried out Harry's skin and actually made the rash and irritation worse so we stopped using it and tried the bottom butter, and honestly have never looked back even though its incredibly hard to find for some reason (although its available from Sainsburys here; https://www.sainsburys.co.uk/webapp/wcs/stores/servlet/gb/groceries/palmers-bottom-butter-125g?langId=44&storeId=10151&krypto=M%2FtWXsSl6S75epnWtsCQsX5H0vFaV2OTMK0cPtWIEozLJyCKV1G%2BevzNwyUMuJAv8YV0L5Nfek0npezW8zZ2WC1ga0T4efwy5wsOvv%2FaYcg9bfho85SSHqa1d5gBquuVuU7XufyzcwvKJSLS2ZtbAstCJ6hqAec4JlVacI4hgno%3D&ddkey=https%3Agb%2Fgroceries%2Fpalmers-bottom-butter-125g)
Becuase we are using the backpack as Harry's changing bag, it obviously doesn't come with a changing mat. The one from our old changing bag had seen better days and so we found this one (https://direct.asda.com/george/baby/changing/red-kite-on-the-go-travel-changing-mat/050178435,default,pd.html) in the Asda baby event that I think works brilliantly, making quick nappy changes easier with a pocket for a nappy and wipes if you need it
We always a full set of spare clothes for Harry in his changing bag, no matter where we are going we always have spare trousers, t shirt and vest at the very least. We also try to carry a dribble bandana bid and a pull over bib if we are going to be eating anywhere because we all know what toddlers are like!!
Having a child with a low immune system makes me slightly obsessive about keeping Harry healthy, and so you will always find antibac wipes and hand sanitiser in my changing bag. I wipe down every public changing table and highchair we may use with the antibac wipes and always use hand sanitiser if I feel like I have touched something that may not be as clean as I would like it, such as bus bells or shop door handles, and even use it after washing my hands after a nappy change or going to the toilet myself. I wouldn't call these essentials but for me its very important to keep everything as clean as possible. I adore the detol antibac wipes and always try to by the bumper packs if i can, but also recently have been loving the Wilkos antibac wipes in the fuji apple and apricot sent, at 50p a pack you can't really go wrong and they smell amazing!
When Harry is out and about with us we obviously take his sippy cup. Harry is really funny about sippy cups and so we usually take two choices with us. Recently I ordered the easter surprise box from Nuby which came with an insulated version of their 360 cup. Harry uses the munchkin version at nursery but doesn't like it when his drink goes warm and so with the insulated one keeping his drink chilled for up to 12 hours he has been really enjoying this one, so much so that I went out the other day and purchased a back up just in case (you can Harry's cup here; https://www.nuby-uk.com/view-product?path=66_150&product_id=1501 with different designs on the nuby uk website!)
The second cup that we like to take with us is the Tommee Tippee sports bottle. We searched high and low for a sippy cup that Harry would take to and after months of trying (we thought we had it with the nuby sip and grip but it seemed to be too fast flowing for him) I stumbled on this in Wilkos one day. I liked the look of the spout as it was similar to a bottle. We decided to give it a go and haven't looked back since! They have recently redesigned the range and so the two that Harry has you can no longer get but the new design can be found here (and they are super cute) https://www.tommeetippee.co.uk/product/sports-bottle
For snacks to take around with us, Harry adores Ella's kitchen fruit pouches, especially now he has worked out how to eat them himself without a spoon. We also love the Kiddylisious smoothie melts or the Bear fruit paws as they are super healthy and basically just fruit. We call them Harry's sweets and he feels like he is getting a real treat if we pull these out, and we feel great because he's eating something healthy (not that he doesn't have the odd 'naughty' treat or meal!)
And that, on most days is what you can find in our changing bag! Hope you've enjoyed this peek and if you were struggling with what to pack this gives you some ideas!
Let's start with the bag we use itself. When Harry was around 14 months old the original changing bag we used broke and we started looking at new bags for him. With him starting nursery we wanted something he could take with him that would last for the entire time he was there and so decided that a normal baby changing bag just wouldn't work for us, and we didn't want to spend that kind of money, as many of them are between £60 and £120, on something that just wouldn't last, so we started looking at backpacks. This in itself came with its own set of dilemmas, do we go for a character backpack, like paw patrol, and risk him growing out of paw patrol before we finished with the bag or a nice simple one? It needed to be big enough to carry all of the bits he needed at 14 months but small enough that he could carry it himself if he wanted to once he started walking. I looked everywhere and FINALLY found myfirstyears.com. I had heard about them before and eyed up a few things but I had never seen the backpacks. It had everything that we had been looking for and I loved that we could personalise it too! I fell instantly in love with the blue star design and for £30 with free personalisation, it felt like a steal! I'm actually looking into ordering another bag in a different design because I honestly feel that they are perfect! (you can find Harry's backpack here https://www.my1styears.com/large-personalised-star-backpack.html)
Now let's move on to changing bag essentials. Nappies first of all. We like to keep at least six nappies in Harry's changing bag at any one time, just to be safe and to ensure he has enough when he is at nursery. Currently, Harry is in size 5 nappies and we use the mamia brand from Aldi as we have since birth.
Choosing the right nappies was a very important decision for Sam and me when we found out we were having Harry. Price, although we didn't want to be spending huge amounts on them, was never the point so we did lots of research into finding what people believed was the best nappies and mamia came up time and time again during this searching so we decided to give them a try, especially after Sam's cousin had her baby in the January of 2016 and recommended them to us over Pampers which she had used first of all. In a pinch, Harry has used Pampers but we have found that they have leaked and even gave Harry a rash once.
Wipes are the next most important thing in Harry's changing bag and we always ensure there is at least one pack in the bag at all times, depending on how full the pack is sometimes two. We are using the Tesco baby ultra soft fragrance-free wipes but this was not always the case.
At our baby shower, we were brought a johnsons gift pack which along with bath things had a pack of their Johnsons baby extra sensitive wipes. We used these from when Harry was about six weeks old once we felt he didn't need for us to use cotton wool and water anymore. However, after a few months, we noticed that wherever we were using the wipes on Harry like to wipe his face or hands and cleaning his nappy area, he was getting irritated skin and so we decided to try out some different wipes and found that the Tesco ones worked for him.
For a nappy cream, we use the Palmers cocoa butter bottom butter. This again was a gift from our baby shower and although expensive (£3.75 for 125g) you only need the tiniest bit and this is the only cream that helped with Harry's nappy rash. Sudocreme was recommended to us by dozens of people, including my mum, we found that it dried out Harry's skin and actually made the rash and irritation worse so we stopped using it and tried the bottom butter, and honestly have never looked back even though its incredibly hard to find for some reason (although its available from Sainsburys here; https://www.sainsburys.co.uk/webapp/wcs/stores/servlet/gb/groceries/palmers-bottom-butter-125g?langId=44&storeId=10151&krypto=M%2FtWXsSl6S75epnWtsCQsX5H0vFaV2OTMK0cPtWIEozLJyCKV1G%2BevzNwyUMuJAv8YV0L5Nfek0npezW8zZ2WC1ga0T4efwy5wsOvv%2FaYcg9bfho85SSHqa1d5gBquuVuU7XufyzcwvKJSLS2ZtbAstCJ6hqAec4JlVacI4hgno%3D&ddkey=https%3Agb%2Fgroceries%2Fpalmers-bottom-butter-125g)
Becuase we are using the backpack as Harry's changing bag, it obviously doesn't come with a changing mat. The one from our old changing bag had seen better days and so we found this one (https://direct.asda.com/george/baby/changing/red-kite-on-the-go-travel-changing-mat/050178435,default,pd.html) in the Asda baby event that I think works brilliantly, making quick nappy changes easier with a pocket for a nappy and wipes if you need it
We always a full set of spare clothes for Harry in his changing bag, no matter where we are going we always have spare trousers, t shirt and vest at the very least. We also try to carry a dribble bandana bid and a pull over bib if we are going to be eating anywhere because we all know what toddlers are like!!
Having a child with a low immune system makes me slightly obsessive about keeping Harry healthy, and so you will always find antibac wipes and hand sanitiser in my changing bag. I wipe down every public changing table and highchair we may use with the antibac wipes and always use hand sanitiser if I feel like I have touched something that may not be as clean as I would like it, such as bus bells or shop door handles, and even use it after washing my hands after a nappy change or going to the toilet myself. I wouldn't call these essentials but for me its very important to keep everything as clean as possible. I adore the detol antibac wipes and always try to by the bumper packs if i can, but also recently have been loving the Wilkos antibac wipes in the fuji apple and apricot sent, at 50p a pack you can't really go wrong and they smell amazing!
When Harry is out and about with us we obviously take his sippy cup. Harry is really funny about sippy cups and so we usually take two choices with us. Recently I ordered the easter surprise box from Nuby which came with an insulated version of their 360 cup. Harry uses the munchkin version at nursery but doesn't like it when his drink goes warm and so with the insulated one keeping his drink chilled for up to 12 hours he has been really enjoying this one, so much so that I went out the other day and purchased a back up just in case (you can Harry's cup here; https://www.nuby-uk.com/view-product?path=66_150&product_id=1501 with different designs on the nuby uk website!)
The second cup that we like to take with us is the Tommee Tippee sports bottle. We searched high and low for a sippy cup that Harry would take to and after months of trying (we thought we had it with the nuby sip and grip but it seemed to be too fast flowing for him) I stumbled on this in Wilkos one day. I liked the look of the spout as it was similar to a bottle. We decided to give it a go and haven't looked back since! They have recently redesigned the range and so the two that Harry has you can no longer get but the new design can be found here (and they are super cute) https://www.tommeetippee.co.uk/product/sports-bottle
For snacks to take around with us, Harry adores Ella's kitchen fruit pouches, especially now he has worked out how to eat them himself without a spoon. We also love the Kiddylisious smoothie melts or the Bear fruit paws as they are super healthy and basically just fruit. We call them Harry's sweets and he feels like he is getting a real treat if we pull these out, and we feel great because he's eating something healthy (not that he doesn't have the odd 'naughty' treat or meal!)
And that, on most days is what you can find in our changing bag! Hope you've enjoyed this peek and if you were struggling with what to pack this gives you some ideas!