December in photographs


So December. What a full on month hey? I do love this time of year and the build up to Christmas, there's that sort of excitement in the air and everyone is a little bit jollier. Until it all becomes too much, and the stress of it all breaks out, so as our weekends quickly filled up with trips, visits and tasks we took the opportunities to take it slow whenever they arose.

I had surgery at the beginning of the month, and to be honest it knocked me harder than I anticipated. I was exhausted. Add that to the rising amount of things I needed to do and remember, for school, Christmas and general life that I was so happy when school finally broke up. We had a few days of just the three of us, Theo saw a friend a few afternoons which gave me a little more time too. But anything compared to the craziness of moving house five days before Christmas as we did last year was better, so I reminded myself daily that at least we weren't unpacking boxes and building furniture!

We saw snow twice, the first time for Rohan, and Theo got his wish that he'd been hoping for for so long. We didn't get much at all, but a few days after Christmas we did get enough to do a little sledging up the big hill behind our village and gave Theo and I the chance to spend time together and blow out those cobwebs that being stuck inside over a rainy Christmas gives you!

I'm trying so hard to remember what else happened over the past month, but it all sort of blurs into a haze of business, visitors, eating too much, wintery walks, evenings at the pub, celebrating my birthday and staying inside being cosy. It's taken me quite a while to get back into the swing of things to be honest. I know that I want to put a bit more effort into this blog this year, as I feel what with starting my business, editing photo sessions and general life that this place became a little neglected. Fingers crossed I can keep up with it!



Here's a little video I made too, you can check out more of December on my youtube channel, as we attempted vlogmas (and made it up to day twelve! hah!)

December in photographs


So December. What a full on month hey? I do love this time of year and the build up to Christmas, there's that sort of excitement in the air and everyone is a little bit jollier. Until it all becomes too much, and the stress of it all breaks out, so as our weekends quickly filled up with trips, visits and tasks we took the opportunities to take it slow whenever they arose.

I had surgery at the beginning of the month, and to be honest it knocked me harder than I anticipated. I was exhausted. Add that to the rising amount of things I needed to do and remember, for school, Christmas and general life that I was so happy when school finally broke up. We had a few days of just the three of us, Theo saw a friend a few afternoons which gave me a little more time too. But anything compared to the craziness of moving house five days before Christmas as we did last year was better, so I reminded myself daily that at least we weren't unpacking boxes and building furniture!

We saw snow twice, the first time for Rohan, and Theo got his wish that he'd been hoping for for so long. We didn't get much at all, but a few days after Christmas we did get enough to do a little sledging up the big hill behind our village and gave Theo and I the chance to spend time together and blow out those cobwebs that being stuck inside over a rainy Christmas gives you!

I'm trying so hard to remember what else happened over the past month, but it all sort of blurs into a haze of business, visitors, eating too much, wintery walks, evenings at the pub, celebrating my birthday and staying inside being cosy. It's taken me quite a while to get back into the swing of things to be honest. I know that I want to put a bit more effort into this blog this year, as I feel what with starting my business, editing photo sessions and general life that this place became a little neglected. Fingers crossed I can keep up with it!



Here's a little video I made too, you can check out more of December on my youtube channel, as we attempted vlogmas (and made it up to day twelve! hah!)

So that was Christmas


 So it's all over, I don't think it ever really fully arrived at our house. I tried my hardest to still make it Christmassy for Theo, despite moving five days before. We did a few Christmas activities such as ice skating and taking Theo to see Father Christmas and I'm sure he was excited, but the whole thing just felt distracted. The actual run up to the big weekend saw us deep in boxes, Theo returning from Devon and my birthday. It was the busiest I think we've ever been, I barely ate a proper meal and I finally got round to putting up the tree and wrapping presents on Christmas eve. But it all more or less came together in the end. I managed to stop for long enough to soak up the excitement in Theo's face as we put out the food and drink for Father Christmas and him opening his Christmas eve presents.

He woke up early on the day, and we had to persuade him to just open one present from his stocking to let us sleep until at least 6.30am before he came into our bed and opened the rest of it. We then spent the rest of the morning trying to stop him opening ALL the presents before setting off to my mums for the night. The day itself was good, we ate, we played games, went for a walk and watched telly. What more could you want?

We spent the next few days fully relaxing. It was good to be home, to have a little space from lots of people and just spend time as a family of four. I felt for the first time in a while we were able to relax. The house was getting more sorted, we sat down for longer than five minutes and just breathed. That's what this holiday is all about right, slowing down for a few days, taking time to enjoy each other's company and just switching off. So that's what we did for the next few days, and it couldn't have been better.

Hope you all had a great time too!




So that was Christmas


 So it's all over, I don't think it ever really fully arrived at our house. I tried my hardest to still make it Christmassy for Theo, despite moving five days before. We did a few Christmas activities such as ice skating and taking Theo to see Father Christmas and I'm sure he was excited, but the whole thing just felt distracted. The actual run up to the big weekend saw us deep in boxes, Theo returning from Devon and my birthday. It was the busiest I think we've ever been, I barely ate a proper meal and I finally got round to putting up the tree and wrapping presents on Christmas eve. But it all more or less came together in the end. I managed to stop for long enough to soak up the excitement in Theo's face as we put out the food and drink for Father Christmas and him opening his Christmas eve presents.

He woke up early on the day, and we had to persuade him to just open one present from his stocking to let us sleep until at least 6.30am before he came into our bed and opened the rest of it. We then spent the rest of the morning trying to stop him opening ALL the presents before setting off to my mums for the night. The day itself was good, we ate, we played games, went for a walk and watched telly. What more could you want?

We spent the next few days fully relaxing. It was good to be home, to have a little space from lots of people and just spend time as a family of four. I felt for the first time in a while we were able to relax. The house was getting more sorted, we sat down for longer than five minutes and just breathed. That's what this holiday is all about right, slowing down for a few days, taking time to enjoy each other's company and just switching off. So that's what we did for the next few days, and it couldn't have been better.

Hope you all had a great time too!




Siblings


Oh these two, I think I've lost count of the amount of times my heart feels like its burst open from love and pride.

From that very first day when I saw Theo nervously gaze into the incubator to see his baby brother covered in wires, lights and tubes and reach out a hand to touch him only to withdraw it because he wasn't quite ready. My eyes filled with tears and my breath caught in my throat and I wanted to hug him and tell him it would all be ok. He'd waited so long to meet his brother, but that meeting was so far from anything I'd ever imagined it to be. But eventually his hand reached out again and he stroked Rohan's arm for the first time.

All the way through the pregnancy I worried about how another baby would affect Theo. Long before we knew about any potential problems, and after, of course when we worried about how Rohan's condition and potential additional care would impact on Theo. We tried to to talk to him about what was happening, to keep him involved the best we could. We had to face a conversation with him before we knew the results of the testing we had done whilst I was pregnant, to try and break it to him that things weren't as straight-forward as we'd hoped, Theo might not get to meet this baby or that he might be very poorly. It broke my heart to tell him this, over our dinner table with both Rob and I trying to hold back the tears that we eventually let come.

But you know what, I'm glad that we showed Theo that emotion, that we shared with him some of the difficulties we faced because I think it made us all stronger. The pure love and excitement that Theo has shown has been endless. From the moment when we told him I was pregnant and he took in the scan photo to nursery and broke the news to just about everyone, to the pride in introducing him when he was finally out of hospital. I overheard him trying to explain to his classmates what some of the wires and tubes were when they asked questions and something which he himself just took in his stride. It makes me well up just to think about now, all those precious moments.

He still to this day wants everyone to meet "his baby brother" and loves more than anything to show off how he can make him giggle. Because he can the most. Rohan's little face lights up whenever he sees Theo and most definitely encourages the silliness and loudness of Theo's attempts to make him laugh. But there are sweet and tender moments too, when Rohan's upset Theo will try and comfort him and now that they are both bigger and stronger he likes to pick him up and hold him (with our supervision!) to show him toys and read him books.

Through all of this there has never been any jealousy towards Rohan, and even though it's definitely not rosy all the time, their relationship, the look of adoration in each others eyes is something I could never have imagined. We don't really know what the future will hold for Rohan and indeed us all, but this bond, this relationship between them two is something I hope will only grow. So I thought I would just collect a few of my favourite photos so far of these two. How I love them so.


Siblings


Oh these two, I think I've lost count of the amount of times my heart feels like its burst open from love and pride.

From that very first day when I saw Theo nervously gaze into the incubator to see his baby brother covered in wires, lights and tubes and reach out a hand to touch him only to withdraw it because he wasn't quite ready. My eyes filled with tears and my breath caught in my throat and I wanted to hug him and tell him it would all be ok. He'd waited so long to meet his brother, but that meeting was so far from anything I'd ever imagined it to be. But eventually his hand reached out again and he stroked Rohan's arm for the first time.

All the way through the pregnancy I worried about how another baby would affect Theo. Long before we knew about any potential problems, and after, of course when we worried about how Rohan's condition and potential additional care would impact on Theo. We tried to to talk to him about what was happening, to keep him involved the best we could. We had to face a conversation with him before we knew the results of the testing we had done whilst I was pregnant, to try and break it to him that things weren't as straight-forward as we'd hoped, Theo might not get to meet this baby or that he might be very poorly. It broke my heart to tell him this, over our dinner table with both Rob and I trying to hold back the tears that we eventually let come.

But you know what, I'm glad that we showed Theo that emotion, that we shared with him some of the difficulties we faced because I think it made us all stronger. The pure love and excitement that Theo has shown has been endless. From the moment when we told him I was pregnant and he took in the scan photo to nursery and broke the news to just about everyone, to the pride in introducing him when he was finally out of hospital. I overheard him trying to explain to his classmates what some of the wires and tubes were when they asked questions and something which he himself just took in his stride. It makes me well up just to think about now, all those precious moments.

He still to this day wants everyone to meet "his baby brother" and loves more than anything to show off how he can make him giggle. Because he can the most. Rohan's little face lights up whenever he sees Theo and most definitely encourages the silliness and loudness of Theo's attempts to make him laugh. But there are sweet and tender moments too, when Rohan's upset Theo will try and comfort him and now that they are both bigger and stronger he likes to pick him up and hold him (with our supervision!) to show him toys and read him books.

Through all of this there has never been any jealousy towards Rohan, and even though it's definitely not rosy all the time, their relationship, the look of adoration in each others eyes is something I could never have imagined. We don't really know what the future will hold for Rohan and indeed us all, but this bond, this relationship between them two is something I hope will only grow. So I thought I would just collect a few of my favourite photos so far of these two. How I love them so.


So that was Summer; part three


We arrived back from our Cornwall holiday for a quick pitstop back in Bristol before heading back East, to my hometown for a friends wedding and to see my dad. It's always a weird sensation going back with my little family, showing them the places of my childhood. It was the first time Rohan had been there too, so that was good to feel like we were introducing him there. We spent a few days there before Rob, Rohan and I headed to Mersea Island for our second wedding (two in two weeks!) and had such a great time.

We passed the rest of the time spending it on little day trips to castles, walks around parks and climbing trees. It was a good Summer. Our first as a family of four and we felt so lucky to be able to take a holiday all together at last!




We decided to spend the last part of the holidays and bank holiday weekend down in Devon for one last little trip and mini holiday. Going down to Teignmouth is always such a treat, it's our little holiday home, where we know we can escape to when we need to most. We get to stay with Rob's grandparents where we're always made to feel so welcome and do all those lovely seaside holiday things. We played on the beach, went to the pier, swam in the lido, went to the zoo and of course played on the pier. It felt like we managed to snatch a little more of the summer before it was September once more and summer was over as quickly as it began...(other than it being a ridiculously warm September!)


So that was Summer; part three


We arrived back from our Cornwall holiday for a quick pitstop back in Bristol before heading back East, to my hometown for a friends wedding and to see my dad. It's always a weird sensation going back with my little family, showing them the places of my childhood. It was the first time Rohan had been there too, so that was good to feel like we were introducing him there. We spent a few days there before Rob, Rohan and I headed to Mersea Island for our second wedding (two in two weeks!) and had such a great time.

We passed the rest of the time spending it on little day trips to castles, walks around parks and climbing trees. It was a good Summer. Our first as a family of four and we felt so lucky to be able to take a holiday all together at last!




We decided to spend the last part of the holidays and bank holiday weekend down in Devon for one last little trip and mini holiday. Going down to Teignmouth is always such a treat, it's our little holiday home, where we know we can escape to when we need to most. We get to stay with Rob's grandparents where we're always made to feel so welcome and do all those lovely seaside holiday things. We played on the beach, went to the pier, swam in the lido, went to the zoo and of course played on the pier. It felt like we managed to snatch a little more of the summer before it was September once more and summer was over as quickly as it began...(other than it being a ridiculously warm September!)


A Father's day photoshoot


Seeing as father's day is just around the corner we thought we'd do a little photoshoot with Rob in partnership with Photobox. As a family we hardly have any photos of all of us together, or with one of us in the frame. Our family is a bit unusual as I tend to be the one who takes most of the photographs, (mainly because I hate being in front of the lens!) but in general most of our photographs are just of Theo and Rohan alone. So we decided to set up a little shoot in our garden, with funny props, and let Theo tell us what to do, and take photos! I must say leaving a five year old in charge of an expensive camera perhaps isn't the most relaxing task, but I think he enjoyed telling us what to do, as well as of course being in the photos himself!


In a study by Photobox they found that 58% of the nation’s families admit that Dad’s love of photography and passion for gadgets makes him the go-to member of the clan to pick up the camera.  Two-thirds (68%) of the UK parents surveyed admitted Dad takes the majority of family photos because Mum prefers it.  His efforts don’t go unnoticed, as more than half (56%) of those surveyed think his photos are much better than Mum’s. When it comes to family photos, as expected kids are always stealing the show from Dad:  Over half (51%) of parents agree one of the top reasons Dad is always behind the camera is so he can capture all the children’s best moments.  Half (47%) of photos on display in the home feature the kids and neither parent.

For a while now I've been trying to make a bit more of an effort to get photos of us with our children, but I do prefer the more candid shot so often that means one of us is out of the frame. One thing I also need to make more time for is actually getting our photos printed out and framed, as we currently have zero!

So to celebrate Father’s Day and put Dad back in the frame, for one day only photo gifting company PhotoBox will open a photo studio run entirely by kids, with Dad as the star.  Robert May, Global Marketing Director at PhotoBox, comments:  “Families are forever growing, changing, and experiencing new things together. Through photography, we can capture those special and everyday family moments so that we can celebrate them again and again. When we discovered that Dads were missing from many of the family pics, we were astounded! And knew something had to be done to rectify this. Our Kids’ studio will help put Dad back in the frame and celebrate his great moments with the family too.”

 For a chance to win a free session at the PhotoBox Kids’ Photo Studio on Saturday 25th June, you can enter the #FocusOnDad competition at www.photobox.co.uk/focusondad
  


This post is written in collaboration with Photobox

A Father's day photoshoot


Seeing as father's day is just around the corner we thought we'd do a little photoshoot with Rob in partnership with Photobox. As a family we hardly have any photos of all of us together, or with one of us in the frame. Our family is a bit unusual as I tend to be the one who takes most of the photographs, (mainly because I hate being in front of the lens!) but in general most of our photographs are just of Theo and Rohan alone. So we decided to set up a little shoot in our garden, with funny props, and let Theo tell us what to do, and take photos! I must say leaving a five year old in charge of an expensive camera perhaps isn't the most relaxing task, but I think he enjoyed telling us what to do, as well as of course being in the photos himself!


In a study by Photobox they found that 58% of the nation’s families admit that Dad’s love of photography and passion for gadgets makes him the go-to member of the clan to pick up the camera.  Two-thirds (68%) of the UK parents surveyed admitted Dad takes the majority of family photos because Mum prefers it.  His efforts don’t go unnoticed, as more than half (56%) of those surveyed think his photos are much better than Mum’s. When it comes to family photos, as expected kids are always stealing the show from Dad:  Over half (51%) of parents agree one of the top reasons Dad is always behind the camera is so he can capture all the children’s best moments.  Half (47%) of photos on display in the home feature the kids and neither parent.

For a while now I've been trying to make a bit more of an effort to get photos of us with our children, but I do prefer the more candid shot so often that means one of us is out of the frame. One thing I also need to make more time for is actually getting our photos printed out and framed, as we currently have zero!

So to celebrate Father’s Day and put Dad back in the frame, for one day only photo gifting company PhotoBox will open a photo studio run entirely by kids, with Dad as the star.  Robert May, Global Marketing Director at PhotoBox, comments:  “Families are forever growing, changing, and experiencing new things together. Through photography, we can capture those special and everyday family moments so that we can celebrate them again and again. When we discovered that Dads were missing from many of the family pics, we were astounded! And knew something had to be done to rectify this. Our Kids’ studio will help put Dad back in the frame and celebrate his great moments with the family too.”

 For a chance to win a free session at the PhotoBox Kids’ Photo Studio on Saturday 25th June, you can enter the #FocusOnDad competition at www.photobox.co.uk/focusondad
  


This post is written in collaboration with Photobox

A Rohan update

So I thought I would finally get round the writing a little update on this sweet little face! I haven't really written much about what has been going on since we brought him home about five weeks ago. I can't actually believe he's three months old. How did that happen?



He's still a very happy and contented baby, and we've seen him become so much more alert and interacting with people. His face lights up and breaks out in a big smile when he's being talked to and he even manages little gurgles and what sounds like a little laugh. One thing for sure if that cuddles are 100% his favourite thing. I think if he could lie on someone's chest all day he would, nothing makes him happier. He's getting pretty strong too, and is just about holding his head up with a little wobble here and there. I can't remember at what stage Theo was doing things, and actually it's probably a good thing as we know Rohan won't really be hitting the milestones at the same rate, and for now I'm ok with that. 

In terms of his medical side we've had a few clinics and updates including a heart and genetics. Firstly he had his first outpatients cardiac appointment with his consultant. When he was discharged from hospital there wasn't really any plan for what he would need and it was a very much wait and see what happens sort of thing. When the consultant had a look at his echo she thought that it was possible that he may need to have some sort of surgery in the near future, but what type she couldn't say. His duct (that all babies are born with but which closes soon after birth) is still open slightly and on the bigger side, which she thought might be causing extra pressure on the heart, so it might have to be closed. His aorta still hasn't narrowed as much as they thought it would, but is what they call "tortured" meaning it's not the regular arch shape, in fact it looks like the number three.  She's not sure whether that will need surgery either, but is wondering whether this could be fixed a little with the surgery to close his duct. Again we're just waiting for his case to be discussed at the big cardiac meeting and for them to review what they feel the best course. I'm not exactly sure how I feel about the prospect of surgery, I think because it's still only a concept and not actually happening yet I haven't let myself feel or think too much about it. 

His physio for his talipes is going pretty well. His still having his casts changed weekly, but his feet seem to have responded really well. Like his heart though his feet aren't exactly typical and they're not 100% sure of the full plan for his treatment. Currently I think we're coming to the end of the weekly casts, where they manipulate each foot into a better position and try and open up the creases on the bottom of his feet. So the next step is to have an ultrasound and x-ray of his feet to check whether the anatomy of his feet is normal because of his syndrome. If all is ok then they will most likely perform a tenotomy where the cut the achilles tendon at the back of the heel and then set his feet in plaster once more and wait for it to fuse back together in the correct place. Then it's another wait and see I think as to what will happen next!

So genetics, the appointment I was dreading, but didn't really need to. I feel now that it was good that we looked up his potential condition before it was officially diagnosed. I had a few terrible really low days, and since then it seems to be ok. It is what is it and none of us know what the future will be like. The geneticist told us some information about what happened to his gene, and even though it's hard to properly understand she did say to us that he doesn't have a full deletion of the particular gene, just a stop code. Which means that hopefully he is on the milder end of the spectrum for his syndrome. So whilst we still don't know how he will be, to know this is reassuring. I think at the moment because Rohan is still so little we've not really noticed any major differences in him compared to other babies, that of course is aside from all his other problems such as his feet, the feeding tube and the need for oxygen. He doesn't particularly look like he's got a genetic syndrome and who knows how his features may develop. I guess until he perhaps starts being further behind in milestones then we might notice a little more, but then again maybe we won't. He'll just do things in his own time and in his own Rohan way.

I've had quite a few people ask me now whether he was premature I guess because of the oxygen and I'm still unsure of what to say really. I don't really want to blurt out all of his medical history or the fact that he's got a syndrome because I just don't know how to put it or the best way to say it. Most of the time I just say he needs a little extra help at the moment, and people seem to understand. We're hoping he doesn't have to remain on the oxygen for too much longer, or even just have it at night as the constant lugging around of tanks is annoying. It's hard not to be able to just pick your baby up and walk around with him without having wires dangling around your feet or reaching the length of the wire. Everything takes organising and pre-planning, a trip to the shop takes twice as long (longer than usual with a baby!) with the amount of things we need to take with us. It's just not as simple as putting him in the car seat with his change bag and off we go, it takes multiple trips in and out the house to finally have everything together. We have a sleep study coming up soon where he'll be assessed once more for the sleep apneas, the main reason for him being on the oxygen. After they review the results I guess they will make a decision as to if they're going to start weaning him off or how long he might need to stay on it. 

We're still feeding him with his NG tube and a bottle. I've pretty much given up trying to get him to latch onto the breast, in fact I can't remember when I last tried. I'm still pumping but the time I have for it is slowly diminishing as it's just so impractical when we need to go out and therefore my supply is definitely dropping. I keep thinking to myself when will I stop, but I guess I will just let my body decide when it's going to stop making the milk, and I know it will make life easier when I do, but for now it's hard to let go of it. He's doing a bit better with his bottle feeding, sometimes taking half his feed, but that only seems to happen once or twice a day and sometimes he's just not interested at all. It's frustrating to say the least and I just wish that this one part of our life was a little easier. 

But here we are, that's pretty much all that is going on. I know this may sound negative towards the end and it's really not all negative all the time, but I can't pretend that a lot of it is a bit shit. I wish it wasn't the way it was, but it is. But I do love spending the day with my little babe and am relishing the cuddles as I know they won't last forever. This holiday has been lovely to see Theo spend more time with Rohan too, and my gosh they do love each other! But that is a tale for another time! 


(Yikes, well done if you made it to the end!)

A Rohan update

So I thought I would finally get round the writing a little update on this sweet little face! I haven't really written much about what has been going on since we brought him home about five weeks ago. I can't actually believe he's three months old. How did that happen?



He's still a very happy and contented baby, and we've seen him become so much more alert and interacting with people. His face lights up and breaks out in a big smile when he's being talked to and he even manages little gurgles and what sounds like a little laugh. One thing for sure if that cuddles are 100% his favourite thing. I think if he could lie on someone's chest all day he would, nothing makes him happier. He's getting pretty strong too, and is just about holding his head up with a little wobble here and there. I can't remember at what stage Theo was doing things, and actually it's probably a good thing as we know Rohan won't really be hitting the milestones at the same rate, and for now I'm ok with that. 

In terms of his medical side we've had a few clinics and updates including a heart and genetics. Firstly he had his first outpatients cardiac appointment with his consultant. When he was discharged from hospital there wasn't really any plan for what he would need and it was a very much wait and see what happens sort of thing. When the consultant had a look at his echo she thought that it was possible that he may need to have some sort of surgery in the near future, but what type she couldn't say. His duct (that all babies are born with but which closes soon after birth) is still open slightly and on the bigger side, which she thought might be causing extra pressure on the heart, so it might have to be closed. His aorta still hasn't narrowed as much as they thought it would, but is what they call "tortured" meaning it's not the regular arch shape, in fact it looks like the number three.  She's not sure whether that will need surgery either, but is wondering whether this could be fixed a little with the surgery to close his duct. Again we're just waiting for his case to be discussed at the big cardiac meeting and for them to review what they feel the best course. I'm not exactly sure how I feel about the prospect of surgery, I think because it's still only a concept and not actually happening yet I haven't let myself feel or think too much about it. 

His physio for his talipes is going pretty well. His still having his casts changed weekly, but his feet seem to have responded really well. Like his heart though his feet aren't exactly typical and they're not 100% sure of the full plan for his treatment. Currently I think we're coming to the end of the weekly casts, where they manipulate each foot into a better position and try and open up the creases on the bottom of his feet. So the next step is to have an ultrasound and x-ray of his feet to check whether the anatomy of his feet is normal because of his syndrome. If all is ok then they will most likely perform a tenotomy where the cut the achilles tendon at the back of the heel and then set his feet in plaster once more and wait for it to fuse back together in the correct place. Then it's another wait and see I think as to what will happen next!

So genetics, the appointment I was dreading, but didn't really need to. I feel now that it was good that we looked up his potential condition before it was officially diagnosed. I had a few terrible really low days, and since then it seems to be ok. It is what is it and none of us know what the future will be like. The geneticist told us some information about what happened to his gene, and even though it's hard to properly understand she did say to us that he doesn't have a full deletion of the particular gene, just a stop code. Which means that hopefully he is on the milder end of the spectrum for his syndrome. So whilst we still don't know how he will be, to know this is reassuring. I think at the moment because Rohan is still so little we've not really noticed any major differences in him compared to other babies, that of course is aside from all his other problems such as his feet, the feeding tube and the need for oxygen. He doesn't particularly look like he's got a genetic syndrome and who knows how his features may develop. I guess until he perhaps starts being further behind in milestones then we might notice a little more, but then again maybe we won't. He'll just do things in his own time and in his own Rohan way.

I've had quite a few people ask me now whether he was premature I guess because of the oxygen and I'm still unsure of what to say really. I don't really want to blurt out all of his medical history or the fact that he's got a syndrome because I just don't know how to put it or the best way to say it. Most of the time I just say he needs a little extra help at the moment, and people seem to understand. We're hoping he doesn't have to remain on the oxygen for too much longer, or even just have it at night as the constant lugging around of tanks is annoying. It's hard not to be able to just pick your baby up and walk around with him without having wires dangling around your feet or reaching the length of the wire. Everything takes organising and pre-planning, a trip to the shop takes twice as long (longer than usual with a baby!) with the amount of things we need to take with us. It's just not as simple as putting him in the car seat with his change bag and off we go, it takes multiple trips in and out the house to finally have everything together. We have a sleep study coming up soon where he'll be assessed once more for the sleep apneas, the main reason for him being on the oxygen. After they review the results I guess they will make a decision as to if they're going to start weaning him off or how long he might need to stay on it. 

We're still feeding him with his NG tube and a bottle. I've pretty much given up trying to get him to latch onto the breast, in fact I can't remember when I last tried. I'm still pumping but the time I have for it is slowly diminishing as it's just so impractical when we need to go out and therefore my supply is definitely dropping. I keep thinking to myself when will I stop, but I guess I will just let my body decide when it's going to stop making the milk, and I know it will make life easier when I do, but for now it's hard to let go of it. He's doing a bit better with his bottle feeding, sometimes taking half his feed, but that only seems to happen once or twice a day and sometimes he's just not interested at all. It's frustrating to say the least and I just wish that this one part of our life was a little easier. 

But here we are, that's pretty much all that is going on. I know this may sound negative towards the end and it's really not all negative all the time, but I can't pretend that a lot of it is a bit shit. I wish it wasn't the way it was, but it is. But I do love spending the day with my little babe and am relishing the cuddles as I know they won't last forever. This holiday has been lovely to see Theo spend more time with Rohan too, and my gosh they do love each other! But that is a tale for another time! 


(Yikes, well done if you made it to the end!)

Postcards from Devon part three

 photo IMG_4689_zpshgnall9k.jpg

So before we go on holiday next week and I have another thousand photographs to go through and share I thought I'd put up the last of our trip from Devon, from what seems like months ago! I actually think that these might be my favourite set from that trip. Rob joined us for the end of our mini holiday in the Easter holidays and we took a trip over to Dawlish Warren for a play on the seafront and perhaps a little go on the 2p machines...

After our last beach trip got cut a little short by the sea mist rolling in we were more than happy to have another paddle and play on the beach. It was great to see Theo's confidence with the waves and the sea grow over the few days, and I hope that this means over the summer when (fingers crossed!) it's warmer we can go a little further in! 

At the weekend we're heading over to Norfolk for some of our dear friends wedding and we couldn't be more excited! Following that we're taking our bell tent and camping with it for the first time along the beautiful Norfolk coast. I can't wait to show Rob and indeed Theo the places and beaches I used to visit when I was little and share my seaside experience with them. 

I have a few more posts lined up this week (hopefully!) but as of next week we're going pretty off grid with no electricity and probably not a lot of internet! I feel like I need a little holiday, and I just can't wait! 

 photo IMG_4696_zpso3tc56zx.jpg
 photo IMG_4651_zpsz3t1scb4.jpg
 photo IMG_4682_zps6ikfes51.jpg
 photo IMG_4628_zps30ghyz7t.jpg
 photo IMG_4609_zps7jjdxeuf.jpg
 photo IMG_4607_zpsqsblfsmt.jpg
 photo IMG_4677_zpsfdn7lm1g.jpg
 photo IMG_4636_zpsdihaxys0.jpg
 photo IMG_4647_zps0nlfpnu6.jpg
 photo IMG_4634_zpscwrbvvul.jpg
 photo IMG_4616_zpspady6r2i.jpg
 photo IMG_4626_zps88wccmkx.jpg
 photo IMG_4619_zpstngy6je3.jpg
 photo IMG_4642_zpstb3aqt05.jpg
 photo IMG_4674_zpsuz43bp7g.jpg
 photo IMG_4633_zpsncocpyee.jpg
 photo IMG_4687_zpsiw1d3ulp.jpg
 photo IMG_4653_zpssckf7ejr.jpg
 photo IMG_4621_zpsgjfz9kkb.jpg
 photo IMG_4605_zpsip4gm3o9.jpg
 photo IMG_4604_zpsqhthv6q8.jpg
 photo IMG_4620_zpsythfgcdi.jpg
 photo IMG_4694_zpsv1e1t3cs.jpg photo IMG_4701_zps9zmyao5a.jpg

Postcards from Devon part three

 photo IMG_4689_zpshgnall9k.jpg

So before we go on holiday next week and I have another thousand photographs to go through and share I thought I'd put up the last of our trip from Devon, from what seems like months ago! I actually think that these might be my favourite set from that trip. Rob joined us for the end of our mini holiday in the Easter holidays and we took a trip over to Dawlish Warren for a play on the seafront and perhaps a little go on the 2p machines...

After our last beach trip got cut a little short by the sea mist rolling in we were more than happy to have another paddle and play on the beach. It was great to see Theo's confidence with the waves and the sea grow over the few days, and I hope that this means over the summer when (fingers crossed!) it's warmer we can go a little further in! 

At the weekend we're heading over to Norfolk for some of our dear friends wedding and we couldn't be more excited! Following that we're taking our bell tent and camping with it for the first time along the beautiful Norfolk coast. I can't wait to show Rob and indeed Theo the places and beaches I used to visit when I was little and share my seaside experience with them. 

I have a few more posts lined up this week (hopefully!) but as of next week we're going pretty off grid with no electricity and probably not a lot of internet! I feel like I need a little holiday, and I just can't wait! 

 photo IMG_4696_zpso3tc56zx.jpg
 photo IMG_4651_zpsz3t1scb4.jpg
 photo IMG_4682_zps6ikfes51.jpg
 photo IMG_4628_zps30ghyz7t.jpg
 photo IMG_4609_zps7jjdxeuf.jpg
 photo IMG_4607_zpsqsblfsmt.jpg
 photo IMG_4677_zpsfdn7lm1g.jpg
 photo IMG_4636_zpsdihaxys0.jpg
 photo IMG_4647_zps0nlfpnu6.jpg
 photo IMG_4634_zpscwrbvvul.jpg
 photo IMG_4616_zpspady6r2i.jpg
 photo IMG_4626_zps88wccmkx.jpg
 photo IMG_4619_zpstngy6je3.jpg
 photo IMG_4642_zpstb3aqt05.jpg
 photo IMG_4674_zpsuz43bp7g.jpg
 photo IMG_4633_zpsncocpyee.jpg
 photo IMG_4687_zpsiw1d3ulp.jpg
 photo IMG_4653_zpssckf7ejr.jpg
 photo IMG_4621_zpsgjfz9kkb.jpg
 photo IMG_4605_zpsip4gm3o9.jpg
 photo IMG_4604_zpsqhthv6q8.jpg
 photo IMG_4620_zpsythfgcdi.jpg
 photo IMG_4694_zpsv1e1t3cs.jpg photo IMG_4701_zps9zmyao5a.jpg

An easter egg hunt!

 photo IMG_4717_zpsignb1smb.jpg

So now that easter has been and gone and hopefully most of the chocolate has been shoved in your face I thought I'd share our little easter egg hunt we had whilst down in Devon. Theo was away with my mum over the actual bank holiday weekend and by all accounts went on a few different hunts but hey what's one more basket of chocolate?!

We visited a perfect little woodland with a babbling stream, bridges and plenty of tree roots for hunting out the chocolate! We used this Gold bunny story book by Lindt as our treasures which I thought was perfect for our woodland setting.

Even though we're not religious and don't celebrate the christian holiday it's still lovely to get involved. We like to talk about the start of spring and the symbolism of new life and rebirth in the form of the egg and rabbit. But to a child it's really all about the chocolate isn't it? Theo's excitement was something I remember so well from my childhood, of finding little bunny footprints painted on the floor, following clues and of course finding all the chocolate!

I made a little video of our hunt, and of course took lots of photographs...



 photo IMG_4724_zpssxfn4glm.jpg
 photo IMG_4709_zpszt9erged.jpg
 photo IMG_4716_zpszjzk8im7.jpg
 photo IMG_4710_zps9mjzpduw.jpg
 photo IMG_4726_zpsyj2zzeon.jpg
 photo IMG_4725_zps9ljajett.jpg
 photo IMG_4734_zpsdshhrkdg.jpg
 photo IMG_4744_zpsovyxxcml.jpg
 photo IMG_4745_zpsv2klqfpl.jpg
 photo IMG_4758_zpsbvyz1je1.jpg
 photo IMG_4764_zpsnkrzrasr.jpg
 photo IMG_4768_zps4eulwprc.jpg
 photo IMG_4775_zpsrbrulnql.jpg
 photo IMG_4780_zps0lnyxobl.jpg
 photo IMG_4783_zpsamq4imka.jpg
 photo IMG_4793_zpsduv9klug.jpg
 photo IMG_4789_zpsvluendnx.jpg
 photo IMG_4810_zpsglbnaclx.jpg
 photo IMG_4835_zpsolzfw5el.jpg
 photo IMG_4796_zpshy2oy4wy.jpg
 photo IMG_4842_zpswijnqy3n.jpg
 photo IMG_4822_zpsdpihhfu0.jpg
You can subscribe to my new youtube channels here and here

An easter egg hunt!

 photo IMG_4717_zpsignb1smb.jpg

So now that easter has been and gone and hopefully most of the chocolate has been shoved in your face I thought I'd share our little easter egg hunt we had whilst down in Devon. Theo was away with my mum over the actual bank holiday weekend and by all accounts went on a few different hunts but hey what's one more basket of chocolate?!

We visited a perfect little woodland with a babbling stream, bridges and plenty of tree roots for hunting out the chocolate! We used this Gold bunny story book by Lindt as our treasures which I thought was perfect for our woodland setting.

Even though we're not religious and don't celebrate the christian holiday it's still lovely to get involved. We like to talk about the start of spring and the symbolism of new life and rebirth in the form of the egg and rabbit. But to a child it's really all about the chocolate isn't it? Theo's excitement was something I remember so well from my childhood, of finding little bunny footprints painted on the floor, following clues and of course finding all the chocolate!

I made a little video of our hunt, and of course took lots of photographs...



 photo IMG_4724_zpssxfn4glm.jpg
 photo IMG_4709_zpszt9erged.jpg
 photo IMG_4716_zpszjzk8im7.jpg
 photo IMG_4710_zps9mjzpduw.jpg
 photo IMG_4726_zpsyj2zzeon.jpg
 photo IMG_4725_zps9ljajett.jpg
 photo IMG_4734_zpsdshhrkdg.jpg
 photo IMG_4744_zpsovyxxcml.jpg
 photo IMG_4745_zpsv2klqfpl.jpg
 photo IMG_4758_zpsbvyz1je1.jpg
 photo IMG_4764_zpsnkrzrasr.jpg
 photo IMG_4768_zps4eulwprc.jpg
 photo IMG_4775_zpsrbrulnql.jpg
 photo IMG_4780_zps0lnyxobl.jpg
 photo IMG_4783_zpsamq4imka.jpg
 photo IMG_4793_zpsduv9klug.jpg
 photo IMG_4789_zpsvluendnx.jpg
 photo IMG_4810_zpsglbnaclx.jpg
 photo IMG_4835_zpsolzfw5el.jpg
 photo IMG_4796_zpshy2oy4wy.jpg
 photo IMG_4842_zpswijnqy3n.jpg
 photo IMG_4822_zpsdpihhfu0.jpg
You can subscribe to my new youtube channels here and here