A Rohan Update

I thought it was about time for a little Rohan update, seeing as he's just seemingly had a huge leap in development. He just keeps blowing us away really with what he's achieving and I just wanted to make sure I documented it.

So where to start, I guess the biggest and the one we have been working towards is walking. Rohan has been using his little walker for a while now, I guess properly since around September and October and has just been gaining in confidence ever since. He seems so much more stable on his legs and just goes whizzing about, and that was great but he couldn't change direction or move the walker in any other direction other than forwards that was until one day he just decided that he could. He dragged it to one side to move it and then it all just seemed to click into place! Later that day I took him to the sports centre for Theo's swimming lesson and only took his walker in, and with a few more practice lifts and drags he suddenly mastered being able to turn it in any direction he wanted! I couldn't believe it and had to hold back the tears and just wanted to run and tell people what he'd just learnt because I was so proud! Since then he's not looked back and is getting so confident with it. I've been trying to encourage him to use it as much as possible and ditching the buggy whenever possible so he gets used to walking places and not just being sat down and wheeled around everywhere.

This confidence on being on two feet hasn't just been limited to his walker though, as he's pulling himself up and cruising everywhere he can and even taking tentative steps (whilst still holding on!) between furniture which is so good to see his confidence growing. He's suddenly surprised us too by taking a few steps completely unaided between us! I couldn't believe it when it first happened, it was almost like hang on, we've been waiting for so long for this moment, I've had dreams about it where I've woken up and had to remember that it wasn't real to then suddenly see him wobbling along on his own was just something else. I think it took a while to sink in really. We've just been working so hard to get his confidence up, making sure he's walking around supported by us or his walker as much as possible to get used to being up on his feet that I'm so happy to see some of it start to pay off, but at the same time I have to remind myself that it's still going to be such a slow process to him actually being able to walk properly. If we've learnt anything in the three years we've known Rohan, it's that he does things in his own time and his own way. Yes he can suddenly surprise you by a sudden leap, but that line won't always follow an upward ark; it will do loop the loops, zig zags and go forwards and backwards. I don't want to feel like I'm being negative, more just reminding myself to be realistic before I get too excited about him walking and picturing our summer with him bounding over the beach etc. Plus he's pretty stubborn and won't do something if he doesn't want to!


 So let's move on to communication shall we? This boy is learning pretty quickly at the moment and seems to be understanding so much more which is great, the only problem is interpreting what he wants and how to teach him the correct signs back. He gets pretty insistent on wanting things and actually has developed a pretty annoying habit of just making a whinging sound until he gets what he wants. I'm desperately trying to teach him as many signs as I can and we're working on a little picture book so he can identify objects he may want, but I know it's all going to take time. He's not really developed any clear speech sounds yet, but he definitely has different ways of making sounds for the things he wants or in different situations. He'll wave hello and goodbye on request, will stick out his feet when you ask him to put on his shoes, he'll lift up his arms when you say "arms up" and has just started point to different parts of his face when you ask where something is (he doesn't always get it right but you know it's a start!) His little pointy finger emerged at some point last year and I really love that he can point to things now, and press buttons and all sorts, it really is the sweetest! He can choose between objects, will respond when you ask him if he wants to go to bed/have a bath/have food/play/ask for more. He likes you to sing a lot and will often ask for more singing, his favourite song being wind the bobbin up! He can sign book and will go and choose which one he wants out of the whole shelf and at bedtime will go and pick one then bring it to you, turning himself around and snuggle into your lap with his bottle, he'll then turn the pages or lift the flaps or just listen to the whole story (which in itself is amazing for his concentration!) and it really is my favourite thing to do with him. Rohan also picked up the sign for biscuit remarkably quickly...I wonder why and now asks for it and will sign please too, I'm desperately trying to get him to sign Mummy but so far it's not going in, cheers for that Rohan! Other signs include: cat, dog, more, finished, milk, food, banana, book, bath, sing, go, brother and tv.

He started doing a little movement which I think came from me counting to three on my fingers and saying ready steady go, so now when he sits at the top of a slide, in a swing or at the side of a swimming pool he'll make a little pointy finger and move it backwards and forwards so you say: ready steady go! At the go he points to the side and hopefully actually moves, but you know, this doesn't always happen! But it's very sweet and he just loves it, I really feel like it's his little game and it's good when we both understand the rules. His confidence with playing and being outside has grown massively too, and whilst he does still like to sit and observe other children he is pretty keen to explore and join in a bit more too, it really does depend on what sort of mood he's in! I take him to a little play group in the village and sometime he'll sit in the middle of the floor, with something to chew on and just find great delight in watching the other children zoom about. Other times he'll get himself in a little car and push himself backwards (we're nearly there on moving forwards but it takes a lot more effort!) or climb up the little slide or go along on a car ramp. He will sit himself down for snack time and join in with the other children at the table and I just love to see him doing the same as all the other kids. He really is so sociable, and at nursery and his childminder they say that's what he likes doing the most, watching and taking it all in.


We had an audiology appointment recently, following up from his last on in November when they tested his hearings after he had grommits put in. They found that they weren't really working all that well and in fact he just had a lot of wax and congestion and thought that his hearing aids wouldn't really help the situation either, so he's been without them since September. This time around they found that whilst he was still congested he was hearing more or less most of the sounds he needs to and actually his underlying hearing if perfect it's just that pesky middle ear congestion making it harder, but they decided that he still didn't really need the hearing aids which is positive. So fingers crossed once the warmer weather starts to arrive he'll be a little less congested.


His eating is more or less going well, he can tolerate a lot more solid food now like rice cakes, bread and toast. He definitely has a massive sweet tooth so I know we'll have to watch that one as he gets bigger. I'm trying to introduce him to different types of fruit as so far he will only really eat banana, the same with other vegetables. He will of course have vegetables in his meals, but they're more all mixed together as he's still on fairly soft toddler style meals. I think we missed a lot of that whole weaning process in the beginning of getting him used to different textures and colours as we were just so worried about his weight from his constant sickness, it really hit my confidence and I was just so concerned about getting food in him and him keeping it down that it didn't really happen. I hope it's not too late now and that his stubbornness doesn't make it even trickier as I know going forwards his diet and weight are going to be really important to keep on top of as he gets older.

But for now we're in an alright place, he is more or less sleeping through the night every night, he's making such progress with his physical skills and communication so now we just need it to continue really. We just need to stop the whinging and horrendous noise that he makes so we can not feel so tense when it happens as it really is intense. I feel a little like we've found our feet, things are a bit more stable and I just hope it continues in this way. I know there's probably a million other things I need to update on that I've forgotten, but I know if I don't press publish on this now it will be months out of date and then I'll never get round to writing an up to date one!




A Rohan update


So where to begin...over the past few months I had been slowly adding to a big long update post and was just ready to publish when I did something stupid (when I thought I had the text backed up) but managed to wipe the whole thing. So here we are, back to square one.

I’m so desperate to keep this blog alive, to keep recording but sometimes I do wonder whether it’s dying its own death on its own. Self-sabotage. Maybe that’s something that’s happening to blogs in general. I mean this blog has never had a huge following but I guess it’s had a steady amount of readers who like to check in, and for me it seems like a much more permanent (aside from my most recent error!) form of recording than an Instagram post. I tend to do much shorter updates over there, but I do like being able to expand a little more but perhaps I should try and keep it to shorter sections here as to not make the task of writing a massive post too daunting and therefore taking me MONTHS to complete.

So, let’s talk about Rohan’s development, or really if you want to get technical, his gross motor skills.

I can’t remember really where he was when I last updated but suddenly it seems as though he’s really clicked with walking and wanting to be on his feet. At the beginning of the summer we were given a walking frame by his physio which, like most things with Rohan has taken a little while for him to get used to. It started ok, he was keen and liked being congratulated but we only used it for really sort tester periods at home, but he still preferred to bum shuffle about and even started crawling more often. There were moments where he frightened himself a little when it became unstable when he lent against the back of it and therefore became a little resistant to using it, but we persevered and I started to take it with us to his nursery settings to try and get him used to using it in as many environments as possible. 

I guess I should add that one of the things that changed with his walker was that I became a little more confident in taking it out with us. It's such a massive and bright obvious thing and it screams for attention, and it's not out of embarrassment but me being self conscious. I didn't want an extra thing to make us stand out or to mark us as different so it's really taken me quite a few months to build up that confidence to take it out in public. We started just by taking it to our local park where I know most of the people who go there, and therefore they know Rohan too and whilst I know that else where people would either be curious or well meaning I perhaps wasn't ready to have to have the conversation as to why he needed the walker or what it was for. I spoke a little about this on my instagram and it's so true that sometimes it's just exhausting to always have to have answers prepared, to have a little script that you default to and it just felt like another thing I needed to build up to and add. Sometimes I just dream of going out without feeling like I need to be armed with all these things, sort of just needing an invisibility cloak or a shield to just be able to blend in a little more. But then slowly things shifted and I knew we needed to incorporate Rohan's walker into our everyday to encourage him to use it more and get him used to being on his feet and walking places instead of being carried (also my back will thank me) so it became more important than any of my own hang ups.

And really since then we've not even had to have that many conversations, I've had smiles and comments of how sweet he looks from adults and innocent questions from children, and actually you know what, I'm so proud of Rohan just being able to be around and do things that other kids are doing, with his walker alongside him. I think it's great that perhaps those kids will go home and not think twice about it or the next time they see another child using one, and actually the more open and using it in public the better as the more normal it seems.


We also started to encourage him to walk with us holding his hands, which probably isn’t the best for him to practice balance, but in my head, it was getting him used to the idea of being on his feet and taking steps instead of being on his bottom, and this mixed with him using his walker has hopefully helped him build confidence with being on his feet more. He’s been pulling himself up onto furniture for a while, from kneeling then standing and then experimented with a little cruising. Now he’s fully able to cruise around furniture, and even taking little steps (whilst still holding on) between gaps. I’ve seen him take a few tentative hands off also and balance on his own for a few seconds too! All exciting stuff. He's become a master stair climbing now too, after a month or two of practicing, which I was actually surprised at how quickly he picked it up! We've now had to install a stair gate as he became so ninja like at climbing them that a few times we had no idea he'd got himself up and found him half way up the stairs! Whoops...He's not mastered going back down them yet but I guess we'll figure that one out. He also decided that he doesn't mind crawling on all fours and does a mix between that and bum shuffling, to be honest I'd rather he crawled so he didn't ruin so many pairs of trousers as they all eventually get massive holes in the bum. 

The thing is with Rohan, is that he is developing. Every day he seems to try or gain confidence in his abilities but it’s just at such a slower rate, it’s like everything is protracted or in slow motion, and it’s like viewing things through a magnifying glass. What with Theo may have taken a few weeks takes months and months with Rohan which means we notice every single detail and little change, which is amazing actually as you can really see the process it all goes through.
I feel like we’re heading in the right direction, I just hope that he continues working on his confidence in his abilities and becomes a little more daring at what he’s willing to try.



His fine motor skills are coming along pretty nicely too, he recently discovered his pointing finger and I don’t know why but I find it the cutest thing ever. He’s started to point to things a little and know taps on things like my phone with it, which means perhaps we can start playing a few more games with him like that. He’s got pretty good hand control and can pick up most objects and use a pincer grip, he can also feed himself and knows where his mouth is, he can use a spoon and fork also and is really working hard to load them himself too. 

I think it's all so promising and it seems like only a matter of time before perhaps he will take a few steps and I just can't wait for that day! It's so strange, I've had a few dreams where Rohan has taken steps, or said his first word and it all seemed so natural and normal and the feeling was so joyus. It feels weird to wake up and remember after dreams like that, like I almost have to check that it didn't happen for real. I know he'll get there in his own time but there's still a part of me that is impatient for it, I want him to suddenly one day just get it and start walking and whilst I know that's not our reality I would be lying if I wasn't impatient sometimes. I just have all these moments and pictures in my head that I can't wait for; him to toddle over to my open arms, him to walk by my side holding my hand, him to run around the park or play on the beach. I know it's all there waiting to happen, but sometimes I want it to be now.

But for now we're so proud of how far he's come! 



A Rohan update


So where to begin...over the past few months I had been slowly adding to a big long update post and was just ready to publish when I did something stupid (when I thought I had the text backed up) but managed to wipe the whole thing. So here we are, back to square one.

I’m so desperate to keep this blog alive, to keep recording but sometimes I do wonder whether it’s dying its own death on its own. Self-sabotage. Maybe that’s something that’s happening to blogs in general. I mean this blog has never had a huge following but I guess it’s had a steady amount of readers who like to check in, and for me it seems like a much more permanent (aside from my most recent error!) form of recording than an Instagram post. I tend to do much shorter updates over there, but I do like being able to expand a little more but perhaps I should try and keep it to shorter sections here as to not make the task of writing a massive post too daunting and therefore taking me MONTHS to complete.

So, let’s talk about Rohan’s development, or really if you want to get technical, his gross motor skills.

I can’t remember really where he was when I last updated but suddenly it seems as though he’s really clicked with walking and wanting to be on his feet. At the beginning of the summer we were given a walking frame by his physio which, like most things with Rohan has taken a little while for him to get used to. It started ok, he was keen and liked being congratulated but we only used it for really sort tester periods at home, but he still preferred to bum shuffle about and even started crawling more often. There were moments where he frightened himself a little when it became unstable when he lent against the back of it and therefore became a little resistant to using it, but we persevered and I started to take it with us to his nursery settings to try and get him used to using it in as many environments as possible. 

I guess I should add that one of the things that changed with his walker was that I became a little more confident in taking it out with us. It's such a massive and bright obvious thing and it screams for attention, and it's not out of embarrassment but me being self conscious. I didn't want an extra thing to make us stand out or to mark us as different so it's really taken me quite a few months to build up that confidence to take it out in public. We started just by taking it to our local park where I know most of the people who go there, and therefore they know Rohan too and whilst I know that else where people would either be curious or well meaning I perhaps wasn't ready to have to have the conversation as to why he needed the walker or what it was for. I spoke a little about this on my instagram and it's so true that sometimes it's just exhausting to always have to have answers prepared, to have a little script that you default to and it just felt like another thing I needed to build up to and add. Sometimes I just dream of going out without feeling like I need to be armed with all these things, sort of just needing an invisibility cloak or a shield to just be able to blend in a little more. But then slowly things shifted and I knew we needed to incorporate Rohan's walker into our everyday to encourage him to use it more and get him used to being on his feet and walking places instead of being carried (also my back will thank me) so it became more important than any of my own hang ups.

And really since then we've not even had to have that many conversations, I've had smiles and comments of how sweet he looks from adults and innocent questions from children, and actually you know what, I'm so proud of Rohan just being able to be around and do things that other kids are doing, with his walker alongside him. I think it's great that perhaps those kids will go home and not think twice about it or the next time they see another child using one, and actually the more open and using it in public the better as the more normal it seems.


We also started to encourage him to walk with us holding his hands, which probably isn’t the best for him to practice balance, but in my head, it was getting him used to the idea of being on his feet and taking steps instead of being on his bottom, and this mixed with him using his walker has hopefully helped him build confidence with being on his feet more. He’s been pulling himself up onto furniture for a while, from kneeling then standing and then experimented with a little cruising. Now he’s fully able to cruise around furniture, and even taking little steps (whilst still holding on) between gaps. I’ve seen him take a few tentative hands off also and balance on his own for a few seconds too! All exciting stuff. He's become a master stair climbing now too, after a month or two of practicing, which I was actually surprised at how quickly he picked it up! We've now had to install a stair gate as he became so ninja like at climbing them that a few times we had no idea he'd got himself up and found him half way up the stairs! Whoops...He's not mastered going back down them yet but I guess we'll figure that one out. He also decided that he doesn't mind crawling on all fours and does a mix between that and bum shuffling, to be honest I'd rather he crawled so he didn't ruin so many pairs of trousers as they all eventually get massive holes in the bum. 

The thing is with Rohan, is that he is developing. Every day he seems to try or gain confidence in his abilities but it’s just at such a slower rate, it’s like everything is protracted or in slow motion, and it’s like viewing things through a magnifying glass. What with Theo may have taken a few weeks takes months and months with Rohan which means we notice every single detail and little change, which is amazing actually as you can really see the process it all goes through.
I feel like we’re heading in the right direction, I just hope that he continues working on his confidence in his abilities and becomes a little more daring at what he’s willing to try.



His fine motor skills are coming along pretty nicely too, he recently discovered his pointing finger and I don’t know why but I find it the cutest thing ever. He’s started to point to things a little and know taps on things like my phone with it, which means perhaps we can start playing a few more games with him like that. He’s got pretty good hand control and can pick up most objects and use a pincer grip, he can also feed himself and knows where his mouth is, he can use a spoon and fork also and is really working hard to load them himself too. 

I think it's all so promising and it seems like only a matter of time before perhaps he will take a few steps and I just can't wait for that day! It's so strange, I've had a few dreams where Rohan has taken steps, or said his first word and it all seemed so natural and normal and the feeling was so joyus. It feels weird to wake up and remember after dreams like that, like I almost have to check that it didn't happen for real. I know he'll get there in his own time but there's still a part of me that is impatient for it, I want him to suddenly one day just get it and start walking and whilst I know that's not our reality I would be lying if I wasn't impatient sometimes. I just have all these moments and pictures in my head that I can't wait for; him to toddle over to my open arms, him to walk by my side holding my hand, him to run around the park or play on the beach. I know it's all there waiting to happen, but sometimes I want it to be now.

But for now we're so proud of how far he's come! 



Processing surgery


Last week Rohan had surgery planned to locate and try to descend his testes, and I wanted to write about and share it on here, to in fact help me process what went on.

I had a little wobble a few days after, I felt anxious and insecure about my photography business but now I know it was just an outlet. Once we got settled in back home we just spent the first few days doing nothing, I made Rohan a little nest in our bed and he sat and watched cbeebies again for the whole morning and just resting, I was exhausted too. I think the adrenaline keeps you going for a few days and it's when you stop that it becomes worse. Your brains starts to go over all that had just happened and sometimes it all gets a bit much. When you're in hospital you have to go into survival mode, you have to speak to doctors and nurses all the time, you have to keep strong and have a brave face all the while you know that this isn't exactly a normal experience. Then when you finally get home it all starts to just settle a bit more and feelings, worries and your anxieties start to bubble to the surface. I always like that bucket of water analogy, where it feels as though you keep adding splashes and drips of water (worries) here and there until suddenly the bucket is full and the last thing that you add just starts off the leak until the whole load tips over and everything comes gushing out. That's often what happens with me, I think I try so hard to keep it altogether that every once in a while it all becomes too much, when I stop for a while or something trivial upsets me it all comes out. I know it's not the best way to deal with things, but often I feel like I just have to get on with things, I don't have the time to stop and process things, and often I'm a little scared to, but I think now I know the warning signs and I need to make sure I give myself the time and space after something like surgery and hospital stays to process all that happened. Even if that means just writing out the experience and letting the words flow from my fingers and put down on paper (keyboard!) all that happened.

 So perhaps I should give a little back ground to this whole story.

When we found out Rohan's diagnosis of his genetic syndrome we looked at the characteristics and saw that one of the most prominent was that most boys will be born with undescended testes. Looking back at his birth notes it was noted that he was in- fact born with then descended as they were felt at birth. We didn't really think too much else of it, as life caring for him took over. It was only at a paediatrician check up did I mention it again because in those first few weeks of getting him home and washing him in the bath did I realise that I couldn't feel them. She had a little check and couldn't really feel them either, but located one just above the sack. Nothing more really came of it though as again I think his other health problems took a front seat.


When we moved a little while later and were assigned a new paediatrician, I again raised my concerns of still not being able to feel anything. Again he was examined and the new paediatrician said that he thought he could feel them, but I wasn't convinced. Finally a year or so later we saw him again and I repeated my worries and after perhaps a more thorough examination the paediatrician decided that actually he couldn't locate them either. So maybe they moved up and down and all around, or maybe it's actually quite hard to correctly confirm whether they are there or not, but we were finally referred to urology for an utlrasound that happened over the summer.

Again because undescended testes aren't really a life threatening problem right now, we had to wait to see if we had the all clear from the cardiology point of view, because it needs surgery to descend them. Even though it's not anything urgent it is important to get done as if the testes are left in the abdomen then they can cause growths that can become dangerous. It's also important for hormone development as he gets older and anything we can do to help Rohan, we want to do.

So after we got the all clear that this surgery wouldn't put any unnecessary pressure on the heart or get in the way of cardiac surgery we were given the go ahead. The ultrasound had managed to locate one of the testes but the other was proving elusive. We were sent away being told that the doctor would review his results. I didn't really think too much else of it, as immediate surgery wasn't mentioned, I just thought of it as a some time in the future thing, but a few weeks later we got a call saying that there had been a cancellation on the surgery list and would we like to take the place, but the date was for the day before Theo started back at school and we didn't think it fair to have all this going on when we were trying to Theo ready and prepared, so we declined it. But then we got a call a week later saying that there had been another cancellation and the date was for the following week. I didn't agree straight away as I think I needed to consider all the implications and our schedule, but in the end we decided that there was never really a perfect time to have surgery and actually the sooner the better before it gets to winter and the dreaded cold season. We were told it was usually just a day case too, so we didn't think it would impact too much, well as much as any sort of procedure can. So we agreed.


Last Wednesday rolled around pretty quickly and Rob and I headed into Bristol with Rohan on Tuesday evening to stay at his parents as we were due in hospital at 8am (whilst Theo was looked after by his Oma at home) We had originally been given a time of 12pm to arrive and be on the afternoon surgery list, but actually again at the last minute we received a call to say they wanted us on in at 8. We weren't really given any more information than that, and usually we receive a letter stating starvation times before admission etc but as the time changed so close to the day there wasn't chance, so we just assumed it was the usual 6 hour starvation period and that his surgery had been moved to the morning, which is what they had said. But when we arrived there was quite a lot of confusion as to why he was actually there at 8am as he was still on the afternoon list. They mentioned in fact that they thought he may need cardiac review before the surgery, but now I'm thinking that perhaps they got this confused and mistook the earlier instructions of waiting for cardiac sign off to go ahead (which we already had!) to add to the confusion even more we were then told that ENT had requested to also do surgery at the same time, under the one general anaesthetic.

So you can imagine, at around 9 or 10 in the morning, after none of us having eaten (including a very confused and upset Rohan who didn't understand why he couldn't eat or drink) we were let in on all the information. Again as a bit of a back story we had requested ENT intervention way back at the beginning of the year through our respiratory consultant, as I believed that perhaps quite a few of Rohan's issues, mainly his constant snotty nose, loud breathing and snoring, obstructed sleep apnea and glue ear were probably down to having large adenoids and tonsils. We were referred thankfully and they agreed to do the surgery and he was approved for the funding and we were told hopefully it would be in the Spring or Summer. And then we waited and heard nothing. We probed a few times and again heard nothing. Then suddenly without pre-warning, we were told that they in fact wanted to perform the surgery on that day, and it would require an overnight stay and monitoring.

To say we were shocked was an understatement, I think we were still trying to get over the original miscommunication of the time mix up and trying to work out whether we could in fact give Rohan any food or water, and then this. We always pack for the possibility of an overnight stay anyway, as you never know, but we definitely hadn't prepared for this amount of surgery. In a way I guess it's a good thing it all happened to quickly, as when you have a date of surgery looming over you for months it's like a black cloud, you know it's coming, you know it'll be tough but you know you've got to do it. I was fairly worried about the adenoid and tonsillectomy as I didn't know how Rohan's body would cope. His airways are weak as it is and I've probably been a bit scared by seeing in the facebook support group for RTS a little boy around the same age as Rohan have the surgery and needed to be in intensive care for a few weeks after. I mean in general the surgery isn't that major as surgeries go, I mean it's not open heart or brain surgery, but it's still a risk in top of all the other risks that their little bodies pose. As with a lot of children with genetic syndromes their anatomies can be a little different and their bodies may react in different ways to the norm.


But we didn't really get the chance to think all this through. It made sense to have it all under one GA, to only go through the recovery once and again to do it sooner rather than later, after all we had been waiting since the Spring. So we agreed. I felt awful that we were agreeing to put Rohan under so much strain, to go through pain and the recovery without him knowing anything about it. It's one of the toughest bits of this all, not being able to explain to him. Him not knowing why we're at hospital, totally unaware of what's going to happen, him finding it confusing that he's asking for food, milk and water (all with beautiful signing) and us saying no when we usually say yes. It's so hard to be read the risks, to sign the consent forms knowing that something could go wrong and that you were the one that let that happen. You know it's all for the best in the long run and it will hopefully make his health and daily life better, but still it's hard.

Soon enough the time for his surgery came around (at the time it seems like an age you have to wait when you have an upset child, but we did manage to distract him for a while in the playroom) at 2pm. He'd not slept or eaten so was pretty unhappy, but we carried him down to theatre. They let both of us into the anaesthetic room this time as I think they felt we'd been through enough that morning. This is the bit I always hate. The bit where you have to literally hand your child over to someone else. To hold him in your arms as he's confused yet again as to where he is and why there's all these people hovering over him and they place the mask on his face. We try and soothe him as best we can, him on my lap, Rob helping him be relaxed. This time he fought the mask a little and took his time to settle but then eventually his eyes start to close and his little body goes limp. Then you have to lift him on the bed and are told you can give him a little kiss. I stroke his hair and try and take in as much as his little body as I can. I know it's only going to be a few hours, but there's always, always that tiny voice at the back of your head that says something could go wrong. You try and ignore it, but at the same time it's very real so you all in a second take in as much as you can and will yourself to leave his side. Then you get ushered out the door and then you wait.

We'd not eaten all day, so we headed into town. The adrenaline keeps you going and we did some errands and looked in some shops and walked round and round until our feet hurt and we decided that we should go back and collect our things and wait in the new ward. It's a ward we've been to many times before, so in a way it's good for it to feel familiar. Around 5.30pm the ENT surgeon comes to find us to tell us that it all went well, which is the biggest relief. This was the longes time he's been under general, and the longer you wait the louder that little voice gets, so as soon as you get any news you can finally relax a little. Not long after that we got the call from recovery where we went down to collect him. Rohan was asleep when I arrived, being wafted with oxygen. He looked so little lying in the big bed. Thankfully he wasn't covered in too many wires and things, but he just looked tired. We were then wheeled back round to our ward and transferred to a cot and hooked up to the machines and oxygen.

By all accounts both surgeries went pretty well, the first part for his testes was always going to take the longest as it wasn't clear exactly what they would be able to do. First they had to find the testes by inserting a camera into his stomach, then if they found them they had to decide the best course of action. They managed to locate them both, and one they were able to bring all the way down in  his scrotum but this had to be done through an opening, so he has a fairly big scar where they did that. The other was a lot smaller, but they couldn't move it all the way down because of blood vessels, so they did what they call a stage one, which means it's likely he'll have to have this operation repeated in six months. We've got to go back in three to check how both testicles are doing as there's a chance they might not survive the move. The adenotonsillectomy also went well and the surgeon said that his adenoids were very big, so we're hoping that once the swelling has gone down we might start to see a difference in his breathing and runny nose. He also had grommets put in his ears to help with his glue ear and therefore hopefully his hearing, it might mean that he won't need to have his hearing aids whilst the grommets are in.


So after all the initial settling in Rohan was left to just sleep, but we noticed that his breathing was pretty laboured, but the doctors didn't seem too concerned at that point. I think it was pretty clear he was drowsy and swollen and just needed to sleep, so they adjusted his c-pap machine to a higher level than we have at home and let him have oxygen too. As he still had his cannula in they hooked him up to an IV with fluids, as he'd not had anything to eat for over 12 hours or much liquid but was far too out of it to offer him any, and we didn't want him to get dehydrated, he also had IV paracetamol. Rob had gone home to see Theo once it was clear that he was fairly settled, then we had the changeover for the night shift. With that came a new wave of observations and an outreach nurse who was concerned about his breathing. She brought in some other doctors to observe him and she wanted to start doing some other tests, but I felt in my gut that really what he needed was not to be prodded with needles and have a blood gas taken, which would inevitably distress him and break up his sleep and prolong his recovery. There were a few other things thrown around which all included disrupting him, putting him tubes, suctioning and trying other machines, all of which I said I didn't think would do more good than bad. I know I'm not a doctor and these people are obviously trained way more than me, but at the same time I know Rohan, I know that his body has just been through a lot, he's getting over the anaesthetic, his nose and throat must have been swollen but at the same time his breathing wasn't the worst I'd seen it and I wasn't too concerned about him. I think by now I have a pretty good idea of when he needs more help than we can give him and when a good time to have more medical intervention is, but I didn't think it was needed. I know that suctioning him just causes him to bleed in his nose causing more blockages, trying to put a tube down his nose to open his airways would distress him and cause bleeding and disturb his already really sore nose and surgery wounds and trying another breathing machine would mean waking him up and fussing him and disturbing his rest even more, which in my head was what he needed the most.

The doctors seemed to agree just to let him be and keep an eye over him overnight, because really we knew why he was breathing the way he was. It wasn't like the other times we've brought him in because of his laboured breathing (when he's had nasty viruses and completely blocked upper airways) it was because of the surgery, the anaesthetic and just being exhausted.

I made up my bed on the not-so-comfy pull out chair bed and tried to get some sleep. His Sats did keep dropping but he was bringing them back up pretty well on his own and they were only fleeting. It was worrying though, I did have vision of whats happened before, where the oxygen doesn't work and he would need more intervention and I really didn't want to see him become unwell. But thankfully after a bit of an up and down few hours he seemed to settle a little more around 2am and I  managed to sleep on and off until about 7am when he woke up. He still seemed pretty miserable when he woke up, and still didn't want any milk, but he'd also managed to pull his cannula out of his foot in the night but they had decided to keep it out, which was a good sign I guess. He eventually took some pain killers orally mixed in with water, then seemed to brighten up a little. He sat up in his cot watching Cbeebies whilst doctors did their rounds, he had observations and then eventually got pretty tired again and had a little nap. I think he managed to have some milk in this time too which was a relief. They wanted to see how he was during his nap as to what the plan would be, and we started him off without oxygen but soon after it was clear he needed a little bit, and his breathing was a still a little laboured, but again he settled after a while and wasn't so bad.


After a few hours he woke up and again had more pain killers to perk him up, I took him to the playroom and we even went outside and he had a go on a ride on car and seemed happy to be out of his room. I didn't want to push it though so after about an hour we returned to our room and waited on news. The doctor had said that she wanted him to stay in one more night for observation, which I would've been happy to do, but I also felt like I knew he'd be happier at home. She came again to speak with us and said that really she'd like Rohan to go home on his base level of care, which I totally understand but really that could take days, which in fact it did. He wasn't being offered any more treatment than we could give him at home and I felt confident that he was going in the right direction but all he needed was rest and to be comfortable. Rohan loves being at home and you can tell how much happier he is when he's here. I would never push for us to go home unless I felt 100% sure we could manage him, and if we couldn't then I would always bring him straight back to hospital. I explained this all to the doctor and hesitatingly she agreed. I know that she had Rohan's health at the forefront of her concerns but I also know that the doctors have to do everything by the book and obviously if something were to happen to Rohan then I could turn round and blame them. But I know also that I know my child and in my gut I knew that he needed to be at home to rest properly without the constant disruption that hospital gives, to be able to be cuddled in bed, to have all his comforts and just to rest.

I don't want this to sound like I don't respect the doctors opinion, because I totally do, I'm very aware of the amazing job they do and that of course they are so much more knowledgable than I am. It was very much a decision made between us and I'm very grateful that she was open to listening to my opinion. The Children's Hospital and the NHS have always been amazing to us. Despite little annoyances here and there on the whole I know without it we'd be in a much worse position. The fact that he had this emergency surgery for free, all the before and after care, food, equipment, medicine and the equipment we have at home is all for free. I will never ever take that for granted.

So eventually after getting all our discharge letters we were let out, about 7pm and made our way home, back to our beds.


We spent the next few days, which were thankfully the weekend so Rob was around too, just staying at home and resting. We had to make sure that Rohan stayed away from places where he might catch a cold and he is more vulnerable after this surgery. He was also really not back to himself, still tired and groggy and just needing us to be close and giving lots of cuddles. The nights did get slowly better and after the first two more unsettled night we noticed that his breathing was calmer and his need for oxygen slowly decreased until we realised that we'd not turned it on for two nights in a row. I'm so glad I followed my guy and knew that all he needed was to rest and slowly been weaned off, but rest in the comfort of his own home where we could stay in bed with him and cuddle and be there.

We're on week two now and he seems to be pretty much back to normal thankfully. We're still not pushing things as I'm fully aware that it can take a good few weeks for everything to be normal, but already we've seen some really good results - like a lot less snot! 

Processing surgery


Last week Rohan had surgery planned to locate and try to descend his testes, and I wanted to write about and share it on here, to in fact help me process what went on.

I had a little wobble a few days after, I felt anxious and insecure about my photography business but now I know it was just an outlet. Once we got settled in back home we just spent the first few days doing nothing, I made Rohan a little nest in our bed and he sat and watched cbeebies again for the whole morning and just resting, I was exhausted too. I think the adrenaline keeps you going for a few days and it's when you stop that it becomes worse. Your brains starts to go over all that had just happened and sometimes it all gets a bit much. When you're in hospital you have to go into survival mode, you have to speak to doctors and nurses all the time, you have to keep strong and have a brave face all the while you know that this isn't exactly a normal experience. Then when you finally get home it all starts to just settle a bit more and feelings, worries and your anxieties start to bubble to the surface. I always like that bucket of water analogy, where it feels as though you keep adding splashes and drips of water (worries) here and there until suddenly the bucket is full and the last thing that you add just starts off the leak until the whole load tips over and everything comes gushing out. That's often what happens with me, I think I try so hard to keep it altogether that every once in a while it all becomes too much, when I stop for a while or something trivial upsets me it all comes out. I know it's not the best way to deal with things, but often I feel like I just have to get on with things, I don't have the time to stop and process things, and often I'm a little scared to, but I think now I know the warning signs and I need to make sure I give myself the time and space after something like surgery and hospital stays to process all that happened. Even if that means just writing out the experience and letting the words flow from my fingers and put down on paper (keyboard!) all that happened.

 So perhaps I should give a little back ground to this whole story.

When we found out Rohan's diagnosis of his genetic syndrome we looked at the characteristics and saw that one of the most prominent was that most boys will be born with undescended testes. Looking back at his birth notes it was noted that he was in- fact born with then descended as they were felt at birth. We didn't really think too much else of it, as life caring for him took over. It was only at a paediatrician check up did I mention it again because in those first few weeks of getting him home and washing him in the bath did I realise that I couldn't feel them. She had a little check and couldn't really feel them either, but located one just above the sack. Nothing more really came of it though as again I think his other health problems took a front seat.


When we moved a little while later and were assigned a new paediatrician, I again raised my concerns of still not being able to feel anything. Again he was examined and the new paediatrician said that he thought he could feel them, but I wasn't convinced. Finally a year or so later we saw him again and I repeated my worries and after perhaps a more thorough examination the paediatrician decided that actually he couldn't locate them either. So maybe they moved up and down and all around, or maybe it's actually quite hard to correctly confirm whether they are there or not, but we were finally referred to urology for an utlrasound that happened over the summer.

Again because undescended testes aren't really a life threatening problem right now, we had to wait to see if we had the all clear from the cardiology point of view, because it needs surgery to descend them. Even though it's not anything urgent it is important to get done as if the testes are left in the abdomen then they can cause growths that can become dangerous. It's also important for hormone development as he gets older and anything we can do to help Rohan, we want to do.

So after we got the all clear that this surgery wouldn't put any unnecessary pressure on the heart or get in the way of cardiac surgery we were given the go ahead. The ultrasound had managed to locate one of the testes but the other was proving elusive. We were sent away being told that the doctor would review his results. I didn't really think too much else of it, as immediate surgery wasn't mentioned, I just thought of it as a some time in the future thing, but a few weeks later we got a call saying that there had been a cancellation on the surgery list and would we like to take the place, but the date was for the day before Theo started back at school and we didn't think it fair to have all this going on when we were trying to Theo ready and prepared, so we declined it. But then we got a call a week later saying that there had been another cancellation and the date was for the following week. I didn't agree straight away as I think I needed to consider all the implications and our schedule, but in the end we decided that there was never really a perfect time to have surgery and actually the sooner the better before it gets to winter and the dreaded cold season. We were told it was usually just a day case too, so we didn't think it would impact too much, well as much as any sort of procedure can. So we agreed.


Last Wednesday rolled around pretty quickly and Rob and I headed into Bristol with Rohan on Tuesday evening to stay at his parents as we were due in hospital at 8am (whilst Theo was looked after by his Oma at home) We had originally been given a time of 12pm to arrive and be on the afternoon surgery list, but actually again at the last minute we received a call to say they wanted us on in at 8. We weren't really given any more information than that, and usually we receive a letter stating starvation times before admission etc but as the time changed so close to the day there wasn't chance, so we just assumed it was the usual 6 hour starvation period and that his surgery had been moved to the morning, which is what they had said. But when we arrived there was quite a lot of confusion as to why he was actually there at 8am as he was still on the afternoon list. They mentioned in fact that they thought he may need cardiac review before the surgery, but now I'm thinking that perhaps they got this confused and mistook the earlier instructions of waiting for cardiac sign off to go ahead (which we already had!) to add to the confusion even more we were then told that ENT had requested to also do surgery at the same time, under the one general anaesthetic.

So you can imagine, at around 9 or 10 in the morning, after none of us having eaten (including a very confused and upset Rohan who didn't understand why he couldn't eat or drink) we were let in on all the information. Again as a bit of a back story we had requested ENT intervention way back at the beginning of the year through our respiratory consultant, as I believed that perhaps quite a few of Rohan's issues, mainly his constant snotty nose, loud breathing and snoring, obstructed sleep apnea and glue ear were probably down to having large adenoids and tonsils. We were referred thankfully and they agreed to do the surgery and he was approved for the funding and we were told hopefully it would be in the Spring or Summer. And then we waited and heard nothing. We probed a few times and again heard nothing. Then suddenly without pre-warning, we were told that they in fact wanted to perform the surgery on that day, and it would require an overnight stay and monitoring.

To say we were shocked was an understatement, I think we were still trying to get over the original miscommunication of the time mix up and trying to work out whether we could in fact give Rohan any food or water, and then this. We always pack for the possibility of an overnight stay anyway, as you never know, but we definitely hadn't prepared for this amount of surgery. In a way I guess it's a good thing it all happened to quickly, as when you have a date of surgery looming over you for months it's like a black cloud, you know it's coming, you know it'll be tough but you know you've got to do it. I was fairly worried about the adenoid and tonsillectomy as I didn't know how Rohan's body would cope. His airways are weak as it is and I've probably been a bit scared by seeing in the facebook support group for RTS a little boy around the same age as Rohan have the surgery and needed to be in intensive care for a few weeks after. I mean in general the surgery isn't that major as surgeries go, I mean it's not open heart or brain surgery, but it's still a risk in top of all the other risks that their little bodies pose. As with a lot of children with genetic syndromes their anatomies can be a little different and their bodies may react in different ways to the norm.


But we didn't really get the chance to think all this through. It made sense to have it all under one GA, to only go through the recovery once and again to do it sooner rather than later, after all we had been waiting since the Spring. So we agreed. I felt awful that we were agreeing to put Rohan under so much strain, to go through pain and the recovery without him knowing anything about it. It's one of the toughest bits of this all, not being able to explain to him. Him not knowing why we're at hospital, totally unaware of what's going to happen, him finding it confusing that he's asking for food, milk and water (all with beautiful signing) and us saying no when we usually say yes. It's so hard to be read the risks, to sign the consent forms knowing that something could go wrong and that you were the one that let that happen. You know it's all for the best in the long run and it will hopefully make his health and daily life better, but still it's hard.

Soon enough the time for his surgery came around (at the time it seems like an age you have to wait when you have an upset child, but we did manage to distract him for a while in the playroom) at 2pm. He'd not slept or eaten so was pretty unhappy, but we carried him down to theatre. They let both of us into the anaesthetic room this time as I think they felt we'd been through enough that morning. This is the bit I always hate. The bit where you have to literally hand your child over to someone else. To hold him in your arms as he's confused yet again as to where he is and why there's all these people hovering over him and they place the mask on his face. We try and soothe him as best we can, him on my lap, Rob helping him be relaxed. This time he fought the mask a little and took his time to settle but then eventually his eyes start to close and his little body goes limp. Then you have to lift him on the bed and are told you can give him a little kiss. I stroke his hair and try and take in as much as his little body as I can. I know it's only going to be a few hours, but there's always, always that tiny voice at the back of your head that says something could go wrong. You try and ignore it, but at the same time it's very real so you all in a second take in as much as you can and will yourself to leave his side. Then you get ushered out the door and then you wait.

We'd not eaten all day, so we headed into town. The adrenaline keeps you going and we did some errands and looked in some shops and walked round and round until our feet hurt and we decided that we should go back and collect our things and wait in the new ward. It's a ward we've been to many times before, so in a way it's good for it to feel familiar. Around 5.30pm the ENT surgeon comes to find us to tell us that it all went well, which is the biggest relief. This was the longes time he's been under general, and the longer you wait the louder that little voice gets, so as soon as you get any news you can finally relax a little. Not long after that we got the call from recovery where we went down to collect him. Rohan was asleep when I arrived, being wafted with oxygen. He looked so little lying in the big bed. Thankfully he wasn't covered in too many wires and things, but he just looked tired. We were then wheeled back round to our ward and transferred to a cot and hooked up to the machines and oxygen.

By all accounts both surgeries went pretty well, the first part for his testes was always going to take the longest as it wasn't clear exactly what they would be able to do. First they had to find the testes by inserting a camera into his stomach, then if they found them they had to decide the best course of action. They managed to locate them both, and one they were able to bring all the way down in  his scrotum but this had to be done through an opening, so he has a fairly big scar where they did that. The other was a lot smaller, but they couldn't move it all the way down because of blood vessels, so they did what they call a stage one, which means it's likely he'll have to have this operation repeated in six months. We've got to go back in three to check how both testicles are doing as there's a chance they might not survive the move. The adenotonsillectomy also went well and the surgeon said that his adenoids were very big, so we're hoping that once the swelling has gone down we might start to see a difference in his breathing and runny nose. He also had grommets put in his ears to help with his glue ear and therefore hopefully his hearing, it might mean that he won't need to have his hearing aids whilst the grommets are in.


So after all the initial settling in Rohan was left to just sleep, but we noticed that his breathing was pretty laboured, but the doctors didn't seem too concerned at that point. I think it was pretty clear he was drowsy and swollen and just needed to sleep, so they adjusted his c-pap machine to a higher level than we have at home and let him have oxygen too. As he still had his cannula in they hooked him up to an IV with fluids, as he'd not had anything to eat for over 12 hours or much liquid but was far too out of it to offer him any, and we didn't want him to get dehydrated, he also had IV paracetamol. Rob had gone home to see Theo once it was clear that he was fairly settled, then we had the changeover for the night shift. With that came a new wave of observations and an outreach nurse who was concerned about his breathing. She brought in some other doctors to observe him and she wanted to start doing some other tests, but I felt in my gut that really what he needed was not to be prodded with needles and have a blood gas taken, which would inevitably distress him and break up his sleep and prolong his recovery. There were a few other things thrown around which all included disrupting him, putting him tubes, suctioning and trying other machines, all of which I said I didn't think would do more good than bad. I know I'm not a doctor and these people are obviously trained way more than me, but at the same time I know Rohan, I know that his body has just been through a lot, he's getting over the anaesthetic, his nose and throat must have been swollen but at the same time his breathing wasn't the worst I'd seen it and I wasn't too concerned about him. I think by now I have a pretty good idea of when he needs more help than we can give him and when a good time to have more medical intervention is, but I didn't think it was needed. I know that suctioning him just causes him to bleed in his nose causing more blockages, trying to put a tube down his nose to open his airways would distress him and cause bleeding and disturb his already really sore nose and surgery wounds and trying another breathing machine would mean waking him up and fussing him and disturbing his rest even more, which in my head was what he needed the most.

The doctors seemed to agree just to let him be and keep an eye over him overnight, because really we knew why he was breathing the way he was. It wasn't like the other times we've brought him in because of his laboured breathing (when he's had nasty viruses and completely blocked upper airways) it was because of the surgery, the anaesthetic and just being exhausted.

I made up my bed on the not-so-comfy pull out chair bed and tried to get some sleep. His Sats did keep dropping but he was bringing them back up pretty well on his own and they were only fleeting. It was worrying though, I did have vision of whats happened before, where the oxygen doesn't work and he would need more intervention and I really didn't want to see him become unwell. But thankfully after a bit of an up and down few hours he seemed to settle a little more around 2am and I  managed to sleep on and off until about 7am when he woke up. He still seemed pretty miserable when he woke up, and still didn't want any milk, but he'd also managed to pull his cannula out of his foot in the night but they had decided to keep it out, which was a good sign I guess. He eventually took some pain killers orally mixed in with water, then seemed to brighten up a little. He sat up in his cot watching Cbeebies whilst doctors did their rounds, he had observations and then eventually got pretty tired again and had a little nap. I think he managed to have some milk in this time too which was a relief. They wanted to see how he was during his nap as to what the plan would be, and we started him off without oxygen but soon after it was clear he needed a little bit, and his breathing was a still a little laboured, but again he settled after a while and wasn't so bad.


After a few hours he woke up and again had more pain killers to perk him up, I took him to the playroom and we even went outside and he had a go on a ride on car and seemed happy to be out of his room. I didn't want to push it though so after about an hour we returned to our room and waited on news. The doctor had said that she wanted him to stay in one more night for observation, which I would've been happy to do, but I also felt like I knew he'd be happier at home. She came again to speak with us and said that really she'd like Rohan to go home on his base level of care, which I totally understand but really that could take days, which in fact it did. He wasn't being offered any more treatment than we could give him at home and I felt confident that he was going in the right direction but all he needed was rest and to be comfortable. Rohan loves being at home and you can tell how much happier he is when he's here. I would never push for us to go home unless I felt 100% sure we could manage him, and if we couldn't then I would always bring him straight back to hospital. I explained this all to the doctor and hesitatingly she agreed. I know that she had Rohan's health at the forefront of her concerns but I also know that the doctors have to do everything by the book and obviously if something were to happen to Rohan then I could turn round and blame them. But I know also that I know my child and in my gut I knew that he needed to be at home to rest properly without the constant disruption that hospital gives, to be able to be cuddled in bed, to have all his comforts and just to rest.

I don't want this to sound like I don't respect the doctors opinion, because I totally do, I'm very aware of the amazing job they do and that of course they are so much more knowledgable than I am. It was very much a decision made between us and I'm very grateful that she was open to listening to my opinion. The Children's Hospital and the NHS have always been amazing to us. Despite little annoyances here and there on the whole I know without it we'd be in a much worse position. The fact that he had this emergency surgery for free, all the before and after care, food, equipment, medicine and the equipment we have at home is all for free. I will never ever take that for granted.

So eventually after getting all our discharge letters we were let out, about 7pm and made our way home, back to our beds.


We spent the next few days, which were thankfully the weekend so Rob was around too, just staying at home and resting. We had to make sure that Rohan stayed away from places where he might catch a cold and he is more vulnerable after this surgery. He was also really not back to himself, still tired and groggy and just needing us to be close and giving lots of cuddles. The nights did get slowly better and after the first two more unsettled night we noticed that his breathing was calmer and his need for oxygen slowly decreased until we realised that we'd not turned it on for two nights in a row. I'm so glad I followed my guy and knew that all he needed was to rest and slowly been weaned off, but rest in the comfort of his own home where we could stay in bed with him and cuddle and be there.

We're on week two now and he seems to be pretty much back to normal thankfully. We're still not pushing things as I'm fully aware that it can take a good few weeks for everything to be normal, but already we've seen some really good results - like a lot less snot! 

Rohan at two (and a bit!) PART ONE


I can't believe this has taken me so long to write. I don't know why and it's become one of those things that the longer I leave, the harder it is to start. Poor Rohan, I'm pretty sure there were monthly updates about Theo, but Rohan's last one was when he was 18 months. He's now 25 or is it 26 months? Or just over two for most people.

But really he's still about a year old. We had a paediatrician appointment recently where we went to discuss his general progress and talk about all the different areas in his development. I still find it really difficult to tell people his age as when I say two there's still that vast gap in what people think a two year old looks like and should be doing, and what Rohan is doing. So really sometimes I do wonder if it would be easier to say he was about a year old, as that's where he is thereabouts developmentally.

He's been mobile for quite a while now, from perhaps the end of the Summer/ September time. What started as a sort of commando crawl soon progressed into pulling himself along with his hands in sitting position, to then learning to move by just using his legs. It's not exactly ideal and crawling would have perhaps been better but I'm so happy that he figured out a way to be mobile all on his own. As usual with Rohan, nothing is quite conventional! But since he's become a bum shuffler he's managed to be pretty speedy when he wants to, and seems content at his mode of travel. Since he's become more confident in moving he's now progressed to kneeling and getting himself into a high kneeling position too. From here he is desperately trying to pull himself up to standing when holding onto something like the sofa, coffee table or us! With the smallest amount of support he will do it, but his little legs tend to not be able to get into the right position to push himself up. I'm confident he'll get there soon though, in fact the other day whilst he was standing up against the sofa he managed to do a few sides steps and cruise his way along the sofa to reach his bottle. Since writing this a few weeks ago, he has now in fact learnt how to pull himself up to a stand! I was so surprised that just out of nowhere he showed us that he can move his feet and plant them again to get to where he wants. I only hope that he continues to progress as well as he has been, as I can't wait for him to be able to walk.


I do feel like we're still stuck in that limbo at the moment, where he can't really do that much when we're outside of the house. I guess that has a lot to do with the weather as it's pretty hard to put him down when the ground is so wet and muddy, but I'm hoping now that Spring and Summer has arrived and things are a bit drier he'll be able to explore outside a little more. I want him to be able to join in with outings with us a little more and be able to reach and interact with things like everyone else. Being stuck on the ground on your bum isn't really ideal! But I'm just happy really that he has progressed, and progressed pretty far actually. Sometimes just in the space of a few weeks he just seems to be so much more confident and happy on his feet and standing. He's now added pulling himself to a stand into his normal range of movements, and something we don't have to help him with, and every day actually he's getting more confident and pulling himself up onto more and more things. There's a little leg that is also keen to get climbing, but can't quite get far enough. We've also been working on climbing the stairs, which he's so close to mastering! I just love being able to see these little steps of progress, and each time we try it really seems as though he's getting better all the time.


We recently had a speech and language therapist come to assess Rohan when he was eating and drinking, and whilst all went well we're still on very basic levels. Most of his meals are puree, and whilst he is really good at feeding himself, and even eating finger food, the gagging and being sick is still an issue. I think for such a long time we were so concerned about his weight that we were really careful about what we gave him to eat as we didn't want anything to come back up. I realise now that we totally lost confidence in his weaning because of this and have stayed at the puree stage for way too long. We also got a bit reliant on just feeding him from a pouch, as he could hold and suck it himself, but really we needed to get him used to being fed or him feeding himself from a spoon and also chewing food.

I feel, hopefully that now we've realised this, and that his weight isn't such an issue anymore thankfully, that we can start building up all of our confidences and try and expand his range of food. He's pretty good with cooked and soft vegetables that he can hold and bite small amounts of, as well as soft fruits and he seems so much more interested in what we're eating too. He's also getting pretty good at communicating what he wants and doesn't want. We've been doing makaton for a while with him, and whilst he doesn't exactly do the signs all the time, he's definitely getting the understanding. So far we only do a few basic ones with him, such as water, food, more, finished and milk. He can do water, more and finished with a little prompting. We also do a few more around home life, such as bedtime, bath, car, home, play, toys, mummy, daddy, brother and cat (which is his favourite!) He's really trying to copy a few, but most of the time just ends up clapping when he attempts a sign, but for me that's showing that he's taking it in and knows he needs to do something with his hands and slowly they'll all start to become their own sign.

He definitely has his own way of telling you he wants something, recently he's taken to bringing you objects, such as his cup for water, or taking you to the cupboard where we keep his cereal and pouches when he's hungry. He laughs when you say the thing he wants, and discards or wont even look at the objects you are offering him if it's not what he wants. He's got some very specific noises for different things and can really tell me if he wants something. He does that thing though where he will be completely fine and happy with other people, then when he sees me he starts to whinge and ask for things. I guess it's because he knows that I'm the one who understands him the most and can give him what he wants. It's nice in a way but I'd much rather the whinging didn't happen!!


Every week we have a portage worker come for a session at home, where we are really focussing on decision making, attention and shared games. So far he's still very stubborn on what he wants to play with and his attention doesn't last too long on things he hasn't decided to play with, but like with most things he's still come for far. He's really good at taking turns and sharing items such as books with us, he likes to roll a ball or drum between us and is really great at asking for help. He loves shape sorters and toys that have a really good action and reward and especially anything that lights up or makes noise. A drum is still his favourite thing, as well as people's hands. We've been working so hard on giving him confidence for doing things on his own or with his own hands, as he gets really obsessed with making other people's hands drum or bang on things. We're still a little unsure as to why he does this, but it's getting a little better. One thing we did realise is that he really likes looking in the mirror or any reflective surface to watch himself do things. It's like he almost doesn't realise that his hands can do things until he can watch himself do it in his reflection, which sort of explains why he likes to use other people's hands to do things. He also likes to get children's hands to do things, which he doesn't quite understand that he can't go up to children and just grab their hands! It's all meant with the best intentions and a lot of the time is meant as a hello or let's play together, but more often than not is done a little too forcefully and the other children don't really get it! Poor things!


But one thing he is, is really social. He loves other people and other children, and when he spots someone around his own size he will make a beeline for them and wants to interact so much. He always gives people the biggest smiles, and it is definitely the first thing that people comment on. He's definitely not a shy child and there's always quite a lot of attention on him which he loves. I love watching his relationships with people and he can be really affectionate. He leans his head to side and loves to snuggle into your shoulder, we get great big open mouth kisses too and he loves being held and cuddled. We still have to rock him to sleep or near sleep a lot of the time, and for now I love this time where his body fits in so perfectly and he snuggles in. It's not often that he's still anymore, so any chances that I get like this I take! He will put his little arms up to ask to be picked up and really likes just sitting on my hip and watching everything. He started nursery back in September and really loves going there. I've seen his relationship with his key-worker really blossom too, and it's lovely to know that he has a bond with other people outside of the family. He has also just started at a childminder once a week, which gives me a good chunk of time to myself. I think it will be a really good thing for him, to be in a home environment with a group of children of ranging ages. The other children are all 'typical' for want of a better word, where as his nursery they all have additional needs of some degree. I think the mix of two will be so good for him and he's already thriving in both places. It's not been an easy journey to get him into both, but I'll save that for another time!

I think I'll leave it here for his little development and social update, and come back (sooner rather than later I hope!) for a second update on all things medical.


 Thanks for reading!



Rohan at two (and a bit!) PART ONE


I can't believe this has taken me so long to write. I don't know why and it's become one of those things that the longer I leave, the harder it is to start. Poor Rohan, I'm pretty sure there were monthly updates about Theo, but Rohan's last one was when he was 18 months. He's now 25 or is it 26 months? Or just over two for most people.

But really he's still about a year old. We had a paediatrician appointment recently where we went to discuss his general progress and talk about all the different areas in his development. I still find it really difficult to tell people his age as when I say two there's still that vast gap in what people think a two year old looks like and should be doing, and what Rohan is doing. So really sometimes I do wonder if it would be easier to say he was about a year old, as that's where he is thereabouts developmentally.

He's been mobile for quite a while now, from perhaps the end of the Summer/ September time. What started as a sort of commando crawl soon progressed into pulling himself along with his hands in sitting position, to then learning to move by just using his legs. It's not exactly ideal and crawling would have perhaps been better but I'm so happy that he figured out a way to be mobile all on his own. As usual with Rohan, nothing is quite conventional! But since he's become a bum shuffler he's managed to be pretty speedy when he wants to, and seems content at his mode of travel. Since he's become more confident in moving he's now progressed to kneeling and getting himself into a high kneeling position too. From here he is desperately trying to pull himself up to standing when holding onto something like the sofa, coffee table or us! With the smallest amount of support he will do it, but his little legs tend to not be able to get into the right position to push himself up. I'm confident he'll get there soon though, in fact the other day whilst he was standing up against the sofa he managed to do a few sides steps and cruise his way along the sofa to reach his bottle. Since writing this a few weeks ago, he has now in fact learnt how to pull himself up to a stand! I was so surprised that just out of nowhere he showed us that he can move his feet and plant them again to get to where he wants. I only hope that he continues to progress as well as he has been, as I can't wait for him to be able to walk.


I do feel like we're still stuck in that limbo at the moment, where he can't really do that much when we're outside of the house. I guess that has a lot to do with the weather as it's pretty hard to put him down when the ground is so wet and muddy, but I'm hoping now that Spring and Summer has arrived and things are a bit drier he'll be able to explore outside a little more. I want him to be able to join in with outings with us a little more and be able to reach and interact with things like everyone else. Being stuck on the ground on your bum isn't really ideal! But I'm just happy really that he has progressed, and progressed pretty far actually. Sometimes just in the space of a few weeks he just seems to be so much more confident and happy on his feet and standing. He's now added pulling himself to a stand into his normal range of movements, and something we don't have to help him with, and every day actually he's getting more confident and pulling himself up onto more and more things. There's a little leg that is also keen to get climbing, but can't quite get far enough. We've also been working on climbing the stairs, which he's so close to mastering! I just love being able to see these little steps of progress, and each time we try it really seems as though he's getting better all the time.


We recently had a speech and language therapist come to assess Rohan when he was eating and drinking, and whilst all went well we're still on very basic levels. Most of his meals are puree, and whilst he is really good at feeding himself, and even eating finger food, the gagging and being sick is still an issue. I think for such a long time we were so concerned about his weight that we were really careful about what we gave him to eat as we didn't want anything to come back up. I realise now that we totally lost confidence in his weaning because of this and have stayed at the puree stage for way too long. We also got a bit reliant on just feeding him from a pouch, as he could hold and suck it himself, but really we needed to get him used to being fed or him feeding himself from a spoon and also chewing food.

I feel, hopefully that now we've realised this, and that his weight isn't such an issue anymore thankfully, that we can start building up all of our confidences and try and expand his range of food. He's pretty good with cooked and soft vegetables that he can hold and bite small amounts of, as well as soft fruits and he seems so much more interested in what we're eating too. He's also getting pretty good at communicating what he wants and doesn't want. We've been doing makaton for a while with him, and whilst he doesn't exactly do the signs all the time, he's definitely getting the understanding. So far we only do a few basic ones with him, such as water, food, more, finished and milk. He can do water, more and finished with a little prompting. We also do a few more around home life, such as bedtime, bath, car, home, play, toys, mummy, daddy, brother and cat (which is his favourite!) He's really trying to copy a few, but most of the time just ends up clapping when he attempts a sign, but for me that's showing that he's taking it in and knows he needs to do something with his hands and slowly they'll all start to become their own sign.

He definitely has his own way of telling you he wants something, recently he's taken to bringing you objects, such as his cup for water, or taking you to the cupboard where we keep his cereal and pouches when he's hungry. He laughs when you say the thing he wants, and discards or wont even look at the objects you are offering him if it's not what he wants. He's got some very specific noises for different things and can really tell me if he wants something. He does that thing though where he will be completely fine and happy with other people, then when he sees me he starts to whinge and ask for things. I guess it's because he knows that I'm the one who understands him the most and can give him what he wants. It's nice in a way but I'd much rather the whinging didn't happen!!


Every week we have a portage worker come for a session at home, where we are really focussing on decision making, attention and shared games. So far he's still very stubborn on what he wants to play with and his attention doesn't last too long on things he hasn't decided to play with, but like with most things he's still come for far. He's really good at taking turns and sharing items such as books with us, he likes to roll a ball or drum between us and is really great at asking for help. He loves shape sorters and toys that have a really good action and reward and especially anything that lights up or makes noise. A drum is still his favourite thing, as well as people's hands. We've been working so hard on giving him confidence for doing things on his own or with his own hands, as he gets really obsessed with making other people's hands drum or bang on things. We're still a little unsure as to why he does this, but it's getting a little better. One thing we did realise is that he really likes looking in the mirror or any reflective surface to watch himself do things. It's like he almost doesn't realise that his hands can do things until he can watch himself do it in his reflection, which sort of explains why he likes to use other people's hands to do things. He also likes to get children's hands to do things, which he doesn't quite understand that he can't go up to children and just grab their hands! It's all meant with the best intentions and a lot of the time is meant as a hello or let's play together, but more often than not is done a little too forcefully and the other children don't really get it! Poor things!


But one thing he is, is really social. He loves other people and other children, and when he spots someone around his own size he will make a beeline for them and wants to interact so much. He always gives people the biggest smiles, and it is definitely the first thing that people comment on. He's definitely not a shy child and there's always quite a lot of attention on him which he loves. I love watching his relationships with people and he can be really affectionate. He leans his head to side and loves to snuggle into your shoulder, we get great big open mouth kisses too and he loves being held and cuddled. We still have to rock him to sleep or near sleep a lot of the time, and for now I love this time where his body fits in so perfectly and he snuggles in. It's not often that he's still anymore, so any chances that I get like this I take! He will put his little arms up to ask to be picked up and really likes just sitting on my hip and watching everything. He started nursery back in September and really loves going there. I've seen his relationship with his key-worker really blossom too, and it's lovely to know that he has a bond with other people outside of the family. He has also just started at a childminder once a week, which gives me a good chunk of time to myself. I think it will be a really good thing for him, to be in a home environment with a group of children of ranging ages. The other children are all 'typical' for want of a better word, where as his nursery they all have additional needs of some degree. I think the mix of two will be so good for him and he's already thriving in both places. It's not been an easy journey to get him into both, but I'll save that for another time!

I think I'll leave it here for his little development and social update, and come back (sooner rather than later I hope!) for a second update on all things medical.


 Thanks for reading!



Rohan at 18 months


So we've reached 18 months of Rowieness. It's that age old quandary of not quite believing it's been a year and a half already, but at the same time how has he not always been here with us? This little boy with more sparkle and joy than a unicorns toenail, and that's saying something.

I thought that I might manage to squeeze in a little update, to try and record the way he is now. I know that it's been so quiet over here recently, but I so want to try and capture this moment in time and record all that we love about this special little boy.

Things are obviously still so different to how we thought they would be, in fact I just went back to look at some old post's of when Theo was a similar age, and how different it was. He was hurtling towards toddlerhood, whilst Rohan is very much still a baby. But compared to the beginning of the year, these past few months have just been so much better. Looking back at photos it's so hard to believe he got as poorly as he did. I guess because it was a gradual thing, him just getting hit by cold after cold slowly wearing him down. Of course I feel so guilty that perhaps we should have got help sooner, but when it's your everyday sometimes it's hard to take a step back and really see that it's not quite right. So after a shaky start to his first year on this planet, I feel like he's finally doing ok.

Last month he finally had his PDA closure, third time lucky and all went really well. He recovered quickly, and as it was only keyhole we were home by the next morning. We've not had a follow up yet but when we do it will be interesting to see how its effected the function of the heart, but so far so good. He has been hit with another cold it seems, as he's been pretty snotty once more, but fingers crossed it seems to be on its way out now. He's been cutting teeth for what seems like months too, with four at the bottom and now two making an appearance at the top.


In terms of development we're still working on the whole moving thing. His sitting has improved dramatically and we've been practising our physio daily making him more balanced and in positions where he can try and move. Whenever I have him on my lap he's wriggling and lunges or scoots his little bottom to try and get to something, so eager to move. But when you put him on the floor he's more than happy to just sit. He can roll over and over now, each way so gets himself about in that way, and is getting so much better at propping himself up on his front and supporting himself and using his arms to play. I feel like we're (hopefully!) on the brink of some sort of movement, but at the moment he just seems to get so tired when we try our physio. I think it's because his little muscles have to work twice as hard as normal (due to hypertonia and mobility) and all those normal movements just take it out of him. But nevertheless we will persevere and get there one day! I'm just happy that he seems so much more interested in his surroundings and toys. He loves picking toys up, turning them over, passing them between his hands, taking things in and out of baskets, banging toys especially his glockenspiel and anything that makes noise. He loves a good maraca and whenever he shakes it he turns to look at you to see if you're dancing. This boy also LOVES praise, so whenever he does something well we somewhat over enthusiastically say 'yey, well done!' and his little face breaks out in a massive smile.

He's getting better at communicating what he wants and doesn't want, as well as being interested in other people and children. He shakes his head, pushes things away and throws things if he doesn't want them, and will lunge and reach and grab for the things he does. He's getting better at choosing options, but more often than not the toys will end up being chucked on the floor, and he'll have a little look to see where they've gone! He makes gurgling sounds pretty much all of the time, he sounds like a little cooing dove and we ALWAYS get comments whenever we're out and about. People generally think it's a sweet noise and comment on how happy he sounds, and whilst I do love it, it is constant. It also reminds me that the noise isn't completely normal and am pretty aware that by now Theo was starting to say a few words and Rohan is nowhere near and we're not even sure how much speech he will have. It's just one of those things that we have to daily go through, and whilst the comments are always positive and it's lovely that people are so interested, I feel like I'm constantly putting on a bit of a fake smile as I guess it's still a bit of a sore point. But we'll get there.


He does love other people and children though, Theo of course being his favourite. He loves to just sit and watch Theo run around, and he loves a good bit of slapstick. If anyone is doing falling, jumping, bouncing etc he will sit in fits of giggles watching them. It really is the sweetest thing! If there are other babies near to him he will learn and reach over to them and try and grab them. I'm trying really hard to make sure he's being a bit more gentle as he is very much in the grabbing and pinching stage and it actually really hurts! (I can't really wear my hair down at the moment as it's just too painful when he pulls!) He's also obsessed with glasses and anyone who wears them  as he likes to pull them off! He's just learnt how to give kisses though, and now whenever I pick him up I'm met with a big open mouth slobber on the cheek or lips. He likes to grab your head and pull you in too and its very cute. I love that he wants to show his affection! He's also a very good cuddler and will properly snuggle his head into your shoulder when you're carrying him. He likes to reach out to other people too and have them give him a cuddle. This boy is affectionate.

I just love how much more he's interacting with everyone and everything. He is obsessed with cups, glasses and bottles of water. If he spots one on the table then he'll lunge and try and grab it, so much so that he can now manage his own open cup really well and has great control when lifting it and tipping it the right amount. He still manages to dribble lots of it down his front but is so much better at drinking it and controlling it when he puts it down too. He can feed himself well too, but I think I might have to save feeding for a whole other post, as there's a lot to say.

So there we are, our little Rohan. I think it's easy to say that without a doubt the number one thing that gets commented on is how happy he is. He gives everyone winning smiles and is usually pretty contented, if not getting slightly frustrated that he can't move!

Happy 18 months Rowington, you are very loved.

Rohan at 18 months


So we've reached 18 months of Rowieness. It's that age old quandary of not quite believing it's been a year and a half already, but at the same time how has he not always been here with us? This little boy with more sparkle and joy than a unicorns toenail, and that's saying something.

I thought that I might manage to squeeze in a little update, to try and record the way he is now. I know that it's been so quiet over here recently, but I so want to try and capture this moment in time and record all that we love about this special little boy.

Things are obviously still so different to how we thought they would be, in fact I just went back to look at some old post's of when Theo was a similar age, and how different it was. He was hurtling towards toddlerhood, whilst Rohan is very much still a baby. But compared to the beginning of the year, these past few months have just been so much better. Looking back at photos it's so hard to believe he got as poorly as he did. I guess because it was a gradual thing, him just getting hit by cold after cold slowly wearing him down. Of course I feel so guilty that perhaps we should have got help sooner, but when it's your everyday sometimes it's hard to take a step back and really see that it's not quite right. So after a shaky start to his first year on this planet, I feel like he's finally doing ok.

Last month he finally had his PDA closure, third time lucky and all went really well. He recovered quickly, and as it was only keyhole we were home by the next morning. We've not had a follow up yet but when we do it will be interesting to see how its effected the function of the heart, but so far so good. He has been hit with another cold it seems, as he's been pretty snotty once more, but fingers crossed it seems to be on its way out now. He's been cutting teeth for what seems like months too, with four at the bottom and now two making an appearance at the top.


In terms of development we're still working on the whole moving thing. His sitting has improved dramatically and we've been practising our physio daily making him more balanced and in positions where he can try and move. Whenever I have him on my lap he's wriggling and lunges or scoots his little bottom to try and get to something, so eager to move. But when you put him on the floor he's more than happy to just sit. He can roll over and over now, each way so gets himself about in that way, and is getting so much better at propping himself up on his front and supporting himself and using his arms to play. I feel like we're (hopefully!) on the brink of some sort of movement, but at the moment he just seems to get so tired when we try our physio. I think it's because his little muscles have to work twice as hard as normal (due to hypertonia and mobility) and all those normal movements just take it out of him. But nevertheless we will persevere and get there one day! I'm just happy that he seems so much more interested in his surroundings and toys. He loves picking toys up, turning them over, passing them between his hands, taking things in and out of baskets, banging toys especially his glockenspiel and anything that makes noise. He loves a good maraca and whenever he shakes it he turns to look at you to see if you're dancing. This boy also LOVES praise, so whenever he does something well we somewhat over enthusiastically say 'yey, well done!' and his little face breaks out in a massive smile.

He's getting better at communicating what he wants and doesn't want, as well as being interested in other people and children. He shakes his head, pushes things away and throws things if he doesn't want them, and will lunge and reach and grab for the things he does. He's getting better at choosing options, but more often than not the toys will end up being chucked on the floor, and he'll have a little look to see where they've gone! He makes gurgling sounds pretty much all of the time, he sounds like a little cooing dove and we ALWAYS get comments whenever we're out and about. People generally think it's a sweet noise and comment on how happy he sounds, and whilst I do love it, it is constant. It also reminds me that the noise isn't completely normal and am pretty aware that by now Theo was starting to say a few words and Rohan is nowhere near and we're not even sure how much speech he will have. It's just one of those things that we have to daily go through, and whilst the comments are always positive and it's lovely that people are so interested, I feel like I'm constantly putting on a bit of a fake smile as I guess it's still a bit of a sore point. But we'll get there.


He does love other people and children though, Theo of course being his favourite. He loves to just sit and watch Theo run around, and he loves a good bit of slapstick. If anyone is doing falling, jumping, bouncing etc he will sit in fits of giggles watching them. It really is the sweetest thing! If there are other babies near to him he will learn and reach over to them and try and grab them. I'm trying really hard to make sure he's being a bit more gentle as he is very much in the grabbing and pinching stage and it actually really hurts! (I can't really wear my hair down at the moment as it's just too painful when he pulls!) He's also obsessed with glasses and anyone who wears them  as he likes to pull them off! He's just learnt how to give kisses though, and now whenever I pick him up I'm met with a big open mouth slobber on the cheek or lips. He likes to grab your head and pull you in too and its very cute. I love that he wants to show his affection! He's also a very good cuddler and will properly snuggle his head into your shoulder when you're carrying him. He likes to reach out to other people too and have them give him a cuddle. This boy is affectionate.

I just love how much more he's interacting with everyone and everything. He is obsessed with cups, glasses and bottles of water. If he spots one on the table then he'll lunge and try and grab it, so much so that he can now manage his own open cup really well and has great control when lifting it and tipping it the right amount. He still manages to dribble lots of it down his front but is so much better at drinking it and controlling it when he puts it down too. He can feed himself well too, but I think I might have to save feeding for a whole other post, as there's a lot to say.

So there we are, our little Rohan. I think it's easy to say that without a doubt the number one thing that gets commented on is how happy he is. He gives everyone winning smiles and is usually pretty contented, if not getting slightly frustrated that he can't move!

Happy 18 months Rowington, you are very loved.

Living with developmental delay


I thought it was probably time for a Rohan update, but I wanted to talk a little bit about how our lives are, surrounding his developmental delay.

I've spoken before about how we know that this is part of his syndrome, but most of the time I try not and focus on it and compare to where he "should" be, but in fact try and focus on what he can do and how he is developing in his own way and in his own time. Which is fine, like most aspects of his care and about him, at home when we're in our bubble, but stepping outside of that comfort zone is hard.

I don't even have to actually step outside of my home to feel the pangs of jealously and comparison, all I have to do is have a quick scroll through my social media to see babies born around a similar time to Rohan, walking around, saying their first words and generally becoming full blown toddlers. There are even babies born way after Rohan who are now further ahead in development than he is. I know I shouldn't let it, but it hurts me. I'm not saying that the parents of these children shouldn't share their milestones and everyday goings on, they have every right, but it still doesn't stop the feeling of unfairness. That old emotion coming back to get me.

I know that all children develop in different ways, and that hopefully he will walk and talk (but the fact that we even have to say hopefully, when normally you don't even think about the fact they might not be able to) eventually, and some may even look at Rohan's development and compare that to their own children, it's natural I think, but it's not really talked about. It's hard to admit that he's behind, or that there's something causing these delays. All leading back to the fact he's different, things are harder and not straightforward.

So here we are, he's now 16 months but still around the age of 7-8 months developmentally. He has low muscle tone which means his body has to work so much harder to support itself. I actually forget how old he is often because when people ask his age I just give a vague answer of "just over a year" when I don't feel like going into it, or there's not really time. I'm not sure how long I can keep this up for to be honest, but I've still not perfected our story or how much to say and when. I don't really mind telling people, it's just I feel awkward. He does still look babyish to me, but his face is starting to show different, more grown up features so it's going to become obvious soon that he's not really only one.

For complete openess here is what he can do. He can roll back to front, and sometimes front to back (unless he gets his arm stuck). He can stay sitting for long periods of time, but we have to put him in sitting position, his legs are usually straight and pretty rigid, and he spends a lot of this time counter balancing himself. He can use both his arms to play in this position though, and will use a good pincer grip and transfer items between his hands. He's started to learn that he can drop and throw objects, and will look for them after he's dropped them. He uses his arms to communicate a lot of the time what he wants, by reaching, gesturing and lunging. He can pick objects up and move them aside to get to what he wants. He's starting to weight bear more whereas before if you tried to stand him up his legs would just go up. When he's on his front he can prop himself up on his elbows and use his hands to play, he likes to open flaps and turn pages in books. He can feed himself with his bottle and now his sippy cup, he also likes to use other objects such as his stacking cups to 'drink' out of. He likes to make our hands clap together, but hasn't worked out how to clap his own, even though recently I've seen movements that look like the start of it and waving.

We've been having weekly play and physio sessions where we are working on the transition between sitting and lying, and back again. He's doing pretty well at turning himself from sitting with his legs straight, to side sitting, with his legs bent to the side which then can lead to him kneeling, and supporting himself with his arms. He's struggling a little bit with the other way, which is to get up from side lying and push himself up with his arms. The thing is, is I can't remember the "normal" way of doing this. I can't remember how Theo got himself into sitting, then to lying and then to crawling. It's like it all happened too fast, but Rohan is in slow motion. He gets so tired too, his little body having to work twice as hard, and he's stubborn. He doesn't like to be put in positions he doesn't want to be in. It's hard to see him like this, and I think we all want to see him on the move.

I just don't think I even anticipated the impact of him being developmentally delayed. I mean day to day it doesn't cause us many problems, it's just hard work. It's hard because we have to practice with him everyday, hard because he gets frustrated and stuck and I feel like we have to move him room to room with us and just plonk him down when we need to get stuff done (with toys!)
It's hard emotionally too, to constantly compare, or think how nice it would be for Theo to be able to play with him a little more, to see them sitting and playing or Rohan toddling after Theo in the garden. It's hard to have to try and cover it up, or try and explain, or answer questions. I also think it's just a constant daily reminder that he has this syndrome, and that he's different. And whilst I love so many things about Rohan that make him him, I just wish he wasn't so delayed. I hate to say that because I can't change it and it's not his fault, but it's the way I feel a lot of the time.

I do celebrate and get so excited when he learns something new, and I know each milestone for us will be such a big occasion. But for now I guess I just have to embrace the extended baby phase for a little longer. I know we'll get there in our own way and time, and for now Rohan can continue distracting everyone from his lack of movement by his lovely smile.



Living with developmental delay


I thought it was probably time for a Rohan update, but I wanted to talk a little bit about how our lives are, surrounding his developmental delay.

I've spoken before about how we know that this is part of his syndrome, but most of the time I try not and focus on it and compare to where he "should" be, but in fact try and focus on what he can do and how he is developing in his own way and in his own time. Which is fine, like most aspects of his care and about him, at home when we're in our bubble, but stepping outside of that comfort zone is hard.

I don't even have to actually step outside of my home to feel the pangs of jealously and comparison, all I have to do is have a quick scroll through my social media to see babies born around a similar time to Rohan, walking around, saying their first words and generally becoming full blown toddlers. There are even babies born way after Rohan who are now further ahead in development than he is. I know I shouldn't let it, but it hurts me. I'm not saying that the parents of these children shouldn't share their milestones and everyday goings on, they have every right, but it still doesn't stop the feeling of unfairness. That old emotion coming back to get me.

I know that all children develop in different ways, and that hopefully he will walk and talk (but the fact that we even have to say hopefully, when normally you don't even think about the fact they might not be able to) eventually, and some may even look at Rohan's development and compare that to their own children, it's natural I think, but it's not really talked about. It's hard to admit that he's behind, or that there's something causing these delays. All leading back to the fact he's different, things are harder and not straightforward.

So here we are, he's now 16 months but still around the age of 7-8 months developmentally. He has low muscle tone which means his body has to work so much harder to support itself. I actually forget how old he is often because when people ask his age I just give a vague answer of "just over a year" when I don't feel like going into it, or there's not really time. I'm not sure how long I can keep this up for to be honest, but I've still not perfected our story or how much to say and when. I don't really mind telling people, it's just I feel awkward. He does still look babyish to me, but his face is starting to show different, more grown up features so it's going to become obvious soon that he's not really only one.

For complete openess here is what he can do. He can roll back to front, and sometimes front to back (unless he gets his arm stuck). He can stay sitting for long periods of time, but we have to put him in sitting position, his legs are usually straight and pretty rigid, and he spends a lot of this time counter balancing himself. He can use both his arms to play in this position though, and will use a good pincer grip and transfer items between his hands. He's started to learn that he can drop and throw objects, and will look for them after he's dropped them. He uses his arms to communicate a lot of the time what he wants, by reaching, gesturing and lunging. He can pick objects up and move them aside to get to what he wants. He's starting to weight bear more whereas before if you tried to stand him up his legs would just go up. When he's on his front he can prop himself up on his elbows and use his hands to play, he likes to open flaps and turn pages in books. He can feed himself with his bottle and now his sippy cup, he also likes to use other objects such as his stacking cups to 'drink' out of. He likes to make our hands clap together, but hasn't worked out how to clap his own, even though recently I've seen movements that look like the start of it and waving.

We've been having weekly play and physio sessions where we are working on the transition between sitting and lying, and back again. He's doing pretty well at turning himself from sitting with his legs straight, to side sitting, with his legs bent to the side which then can lead to him kneeling, and supporting himself with his arms. He's struggling a little bit with the other way, which is to get up from side lying and push himself up with his arms. The thing is, is I can't remember the "normal" way of doing this. I can't remember how Theo got himself into sitting, then to lying and then to crawling. It's like it all happened too fast, but Rohan is in slow motion. He gets so tired too, his little body having to work twice as hard, and he's stubborn. He doesn't like to be put in positions he doesn't want to be in. It's hard to see him like this, and I think we all want to see him on the move.

I just don't think I even anticipated the impact of him being developmentally delayed. I mean day to day it doesn't cause us many problems, it's just hard work. It's hard because we have to practice with him everyday, hard because he gets frustrated and stuck and I feel like we have to move him room to room with us and just plonk him down when we need to get stuff done (with toys!)
It's hard emotionally too, to constantly compare, or think how nice it would be for Theo to be able to play with him a little more, to see them sitting and playing or Rohan toddling after Theo in the garden. It's hard to have to try and cover it up, or try and explain, or answer questions. I also think it's just a constant daily reminder that he has this syndrome, and that he's different. And whilst I love so many things about Rohan that make him him, I just wish he wasn't so delayed. I hate to say that because I can't change it and it's not his fault, but it's the way I feel a lot of the time.

I do celebrate and get so excited when he learns something new, and I know each milestone for us will be such a big occasion. But for now I guess I just have to embrace the extended baby phase for a little longer. I know we'll get there in our own way and time, and for now Rohan can continue distracting everyone from his lack of movement by his lovely smile.



Preparing for heart surgery

So tomorrow is the day. I've been meaning to write something before about Rohan's up coming surgery but somehow it's not happened. I'm not sure whether it's just because I've not had time, or that I've not wanted to make time. I've not wanted to write about it because I didn't really want to admit to myself that it's happening. Because like always my general thinking is that if I don't think about it too much then it's not really happening...you can see what a great philosophy that is.

The surgery itself is pretty straightforward, if he ends up having it at all. Last week we took Rohan to hospital for his pre-admission checks. It was a long morning spent doing all sorts of things such as a chest X-ray, ECG, an echo (ultrasound) of his heart, blood tests, observations and talks with the specialists. He had a slightly raised temperature and has been a little snotty again (like always) but we found that he's cutting a tooth a few days before so that could all be related to that. We spoke to the hospital yesterday to check the results of his blood and swab tests to see if he had any viruses or bacterial infections, both of which were clear, so I guess all we can do now is turn up and see what they say on the day. Tomorrow.

Tomorrow, tomorrow tomorrow.


It seems like such a massive marker, his life before having any surgical procedure and what is to come afterwards. We're hoping it makes a difference, we've been told that this sort of thing can really cause a big turn around in many ways (good ways) so we're hoping for that. But again this is all just speculation, as when we spoke with the cardiac consultant he said that it's not even 100% that they will do the procedure they have set out to do. That is to close his PDA (the duct that he doesn't need) by keyhole surgery. Once he's gone under general anaesthetic they will then do a number of tests including dye to check blood flow and to check the pressures of the heart. They'll then measure the size of the duct and decide whether the device they can use to close it will fit, and actually whether this is the best thing for his heart. They may decide that by closing it, it will put too much pressure on the heart, or that his arch needs looking at too. There are so many maybe's. If it's all straight forward and he has the device to close it the whole thing should be over in a few hours, and he'll be sent to recovery.

So we're just in limbo, unsure of what's ahead, unsure of whether it's going to happen, of what's going to happen and what the results will be. Then there's risk, not much as it's simple surgery, but there's always risk. There's heightened risk for Rohan, for the anaesthetic, for the procedure, for everything because of everything else he's got going on. But if it can all work out to help him and make things better. He's been under general before and was fine, and the risk is still a small one, but it's scary all the same. To sign a consent form to say you know the risks, but are ok for them to do it anyway, his life in their hands. It's scary. I don't want that decision or power.


I don't know what I will be like when he's away from us, I think I'll need distracting. We'll have to say goodbye, hopeful that it will be only a few hours before we see him again but all the while the unspoken fears and thoughts will be there. What ifs and hope nots. I can't even write it here. I don't want to tempt anything. So he will be fine.

That's if it happen's at all. I feel thankful that we've had all this time before anything surgical, considering we thought he would have to have something in the first week of his life. But now we're here, with everything crossed that it all goes ok and we'll have our sweet baby boy back in our arms not long after.


Wish us luck.

Preparing for heart surgery

So tomorrow is the day. I've been meaning to write something before about Rohan's up coming surgery but somehow it's not happened. I'm not sure whether it's just because I've not had time, or that I've not wanted to make time. I've not wanted to write about it because I didn't really want to admit to myself that it's happening. Because like always my general thinking is that if I don't think about it too much then it's not really happening...you can see what a great philosophy that is.

The surgery itself is pretty straightforward, if he ends up having it at all. Last week we took Rohan to hospital for his pre-admission checks. It was a long morning spent doing all sorts of things such as a chest X-ray, ECG, an echo (ultrasound) of his heart, blood tests, observations and talks with the specialists. He had a slightly raised temperature and has been a little snotty again (like always) but we found that he's cutting a tooth a few days before so that could all be related to that. We spoke to the hospital yesterday to check the results of his blood and swab tests to see if he had any viruses or bacterial infections, both of which were clear, so I guess all we can do now is turn up and see what they say on the day. Tomorrow.

Tomorrow, tomorrow tomorrow.


It seems like such a massive marker, his life before having any surgical procedure and what is to come afterwards. We're hoping it makes a difference, we've been told that this sort of thing can really cause a big turn around in many ways (good ways) so we're hoping for that. But again this is all just speculation, as when we spoke with the cardiac consultant he said that it's not even 100% that they will do the procedure they have set out to do. That is to close his PDA (the duct that he doesn't need) by keyhole surgery. Once he's gone under general anaesthetic they will then do a number of tests including dye to check blood flow and to check the pressures of the heart. They'll then measure the size of the duct and decide whether the device they can use to close it will fit, and actually whether this is the best thing for his heart. They may decide that by closing it, it will put too much pressure on the heart, or that his arch needs looking at too. There are so many maybe's. If it's all straight forward and he has the device to close it the whole thing should be over in a few hours, and he'll be sent to recovery.

So we're just in limbo, unsure of what's ahead, unsure of whether it's going to happen, of what's going to happen and what the results will be. Then there's risk, not much as it's simple surgery, but there's always risk. There's heightened risk for Rohan, for the anaesthetic, for the procedure, for everything because of everything else he's got going on. But if it can all work out to help him and make things better. He's been under general before and was fine, and the risk is still a small one, but it's scary all the same. To sign a consent form to say you know the risks, but are ok for them to do it anyway, his life in their hands. It's scary. I don't want that decision or power.


I don't know what I will be like when he's away from us, I think I'll need distracting. We'll have to say goodbye, hopeful that it will be only a few hours before we see him again but all the while the unspoken fears and thoughts will be there. What ifs and hope nots. I can't even write it here. I don't want to tempt anything. So he will be fine.

That's if it happen's at all. I feel thankful that we've had all this time before anything surgical, considering we thought he would have to have something in the first week of his life. But now we're here, with everything crossed that it all goes ok and we'll have our sweet baby boy back in our arms not long after.


Wish us luck.

A Rohan update: Part two

Once we did get home he did really well for a good few days and seemed much like his normal bright self. I'd forgotten how much he giggled and smiled when he's feeling well and it made me realise that he'd been pretty poorly leading up to this point. But by the following week he seemed to be struggling once again. We had our cardiac clinic on the Tuesday and after they had finished all of his checks, ecg and echo we mentioned to his cardiac consultant that we were worried once again. She suggested that we get him chest X-rayed, then take him round to A&E to be looked at. We did all this, and whilst his X-ray looked clear and ok, they wanted to keep him in for observation. So we waited to be moved to the small ward off of A&E, and I stayed the night. It was a horrible unsettled night and Rohan slept so badly, as did I.

Regarding the cardiac check up, everything still looked the same as it did, and his breathing problems aren't really attributed to his heart. They discussed that they do want to surgery on his PDA, which is the duct that all babies are born with, but which closes shortly after birth. Rohan's is still there and open and quite large so they want to close that. They think that it will only have to be keyhole surgery which for us is a relief. Then I guess they'll just closely monitor his aorta after that. His consultant mentioned that his duct still being open probably isn't helping his breathing trouble as it's making his lungs a bit wetter than normal with too much blood being directed there. So hopefully the surgery will help too.


When were told after our initial night in that Rohan was going to be admitted we asked what their plan was and mentioned that he responded really well to CPAP before and this is what we thought he needed. They we hesitant to do this as that would mean him being admitted to PICU, which they didn't think was needed. Again it was blocked airways due to his cold, and he was kept on oxygen like at home. He did ok but just kept on having really unsettled nights. We were in a bay with up to three other children, and it's not quiet to say the least. I felt so conscious and guilty every time Rohan woke up crying, which he did often as he was finding it hard to breathe. He was so uncomfortable and because his sats dipped every time he went into a deep sleep we found ourselves changing his position, or stirring him out of it, so I don't think he ever had a full, good nights sleep. We stayed in that bay for a week, and were almost discharged on the Monday as his oxygen requirement overnight was getting less and they seemed happy with him. But then something happened, I'm not sure how but a combination of things like him having a stomach upset and resulting vey sore bottom and so many nights of broken sleep that that night he had the worst night. He was waking every half an hour, I didn't get into bed until 3am. After that night I realised that he needed something more than just oxygen as he was really struggling. Rob came into hospital to swap over with me so I could go home and sleep, but I made sure that he was going to start pushing for them to do something more for him.


I hate that we had got to this point, where we had to get cross and really push for what we wanted. I appreciate everything the NHS has done for us and don't ever want to seem ungrateful, but sometimes as a parent you know what your child needs. Obviously we're not medically trained and I have so much respect for the jobs that all the staff do, but we couldn't stand back and have another night like the previous one and watch him suffering without a plan to help more. I returned home and Rob took over to what was another eventful night. After us asking for more they decided to finally try and few different things, first off the optiflow machine, which didn't help, then an NPA tube to hold his airways open, which didn't go in right and just caused him to gag all the time, so out it came. His nose was then all scratched up from this and he was just generally in a bad way. It seemed as though no-one really knew what step to take next, but he was eventually moved to the HDU part of the unit (and his own room) as they were going to attempt the NPA again in the morning. But somehow during that time they finally realised that yes, he needed CPAP, and a move down to PICU was imminent.

When I heard this news I wasn't worried, I was thankful that he was finally going to getting what he needed. Obviously he was in a bad way, but in my mind he was only going to be on PICU because that was the only place he could have CPAP used to begin with. But it was scary going back there. Because we couldn't stay on the ward both Rob and I returned home that evening, for the first time in over a week, but it brought back so many of those memories of leaving him there when he was so small, when we had no idea how long he was going to be in for or what was happening. But this time was different at least, we knew he responded well to CPAP and that when he was awake he was well. When we arrived after he'd been moved they had put down an ng tube, as well as an IV cannula in his hand. This I think was the most shocking, as it had been so long since he'd needed something like this. We were still unsure as to why he actually needed the ng, because he was still able to take food orally, but I think on PICU its more or less standard practice to put them in, just in case they need direct access etc. Suddenly he wasn't just Rohan having a little trouble breathing when he was asleep, he was in full on intensive care, with wires, tubes and machines. But I felt relieved. Relieved that we had finally been listened too, relieved that he finally looked so much more settled when he was asleep, and relieved too I guess that we could get a few nights of good rest. Leaving him was obviously so hard, but we were both so exhausted.


I've lost count of how long he was on PICU for, maybe three days or so, but as it was the weekend things all went quiet and we were left to more or less just get on with his care as usual, all the while just waiting for the new week to start and work towards getting off the ward. We again insisted that if he was showing signs of wanting milk orally that he be allowed to, as we'd worked so hard to get him taking his milk that way that we didn't want to relapse. And he did show that he wanted it and soon we were making our way back to his normal feeding schedule. We sat in our bubble of our routine and playing when Rohan was awake, he charmed the nurses with his smile and was generally pretty happy and content like usual. It was a relief to have him back but I felt strange being on intensive care with a baby who didn't look like he should be there. So many things were going on around us, people's lives going through unthinkable things, seeing families day in day out sitting with their sick children. It's a world I wish I'd never been invited into, to see behind those doors where things are so black and white but at the same time not straight forward at all. Where lives are changed and there is sadness as well as victories.

Eventually we were discharged from PICU and moved back up to HDU, with his CPAP. We were waiting on one lady to return to work so she could train us on the machine which we would take home with us. The weekend passed without much drama, just more waiting. You get used to a certain amount of just waiting around for one thing or another in hospital. We've worked out that really you need to add a few hours or a day or two on to most onto any timeframe that they give you. I feel like I've been a bit down on the care and the NHS in this post, so I just wanted to stress that however frustrating it can be and how long sometimes we have to wait, we're just so thankful for all that the hospital, doctors, nurses and everyone has done for us and continue to do. It's hard to imagine what our lives would be like without every single one of the services that we get, the equipment and medicine that we receive, all for free. Yes it can be ever so slightly frustrating sometimes, but when you realise how much they are doing, how over stretched the services and staff are then suddenly it doesn't seem too bad.


So after our weekend we waited a few more days and eventually got signed off on the equipment, and all of a sudden we were free to go. It felt a little surreal to just be able to walk out and be free. And there we are, our second hospital stay. It was the first of March, and the beginning of a month of recovering, for me both physically and mentally. I really don't think I processed any of what had been going on, just being in the mindset of just keep going and dealing with each day as it came. We were functioning on very little sleep, stress of seeing our boy in distress and juggling Theo and normal life. It took me a lot longer than I thought it would be realise what we'd just been through and the affect it had on us all. Rohan was doing a lot better, but we were still struggling with his sickness and a few weeks ago it all got too much. I think it all caught up on me, and after a few nights of bad sleep, exhaustion kicked in and I admitted defeat. It's scary when you don't really feel in control of your emotions or able to be there properly for your children's needs, but thankfully we were once again listened too and with the help of a lovely GP we were set up with new medication. I think I felt I just needed someone to listen. So that's where we are, but now we're facing our next challenge that is cardiac surgery next week, but I think I'd better write another post about that soon...

A Rohan update: Part two

Once we did get home he did really well for a good few days and seemed much like his normal bright self. I'd forgotten how much he giggled and smiled when he's feeling well and it made me realise that he'd been pretty poorly leading up to this point. But by the following week he seemed to be struggling once again. We had our cardiac clinic on the Tuesday and after they had finished all of his checks, ecg and echo we mentioned to his cardiac consultant that we were worried once again. She suggested that we get him chest X-rayed, then take him round to A&E to be looked at. We did all this, and whilst his X-ray looked clear and ok, they wanted to keep him in for observation. So we waited to be moved to the small ward off of A&E, and I stayed the night. It was a horrible unsettled night and Rohan slept so badly, as did I.

Regarding the cardiac check up, everything still looked the same as it did, and his breathing problems aren't really attributed to his heart. They discussed that they do want to surgery on his PDA, which is the duct that all babies are born with, but which closes shortly after birth. Rohan's is still there and open and quite large so they want to close that. They think that it will only have to be keyhole surgery which for us is a relief. Then I guess they'll just closely monitor his aorta after that. His consultant mentioned that his duct still being open probably isn't helping his breathing trouble as it's making his lungs a bit wetter than normal with too much blood being directed there. So hopefully the surgery will help too.


When were told after our initial night in that Rohan was going to be admitted we asked what their plan was and mentioned that he responded really well to CPAP before and this is what we thought he needed. They we hesitant to do this as that would mean him being admitted to PICU, which they didn't think was needed. Again it was blocked airways due to his cold, and he was kept on oxygen like at home. He did ok but just kept on having really unsettled nights. We were in a bay with up to three other children, and it's not quiet to say the least. I felt so conscious and guilty every time Rohan woke up crying, which he did often as he was finding it hard to breathe. He was so uncomfortable and because his sats dipped every time he went into a deep sleep we found ourselves changing his position, or stirring him out of it, so I don't think he ever had a full, good nights sleep. We stayed in that bay for a week, and were almost discharged on the Monday as his oxygen requirement overnight was getting less and they seemed happy with him. But then something happened, I'm not sure how but a combination of things like him having a stomach upset and resulting vey sore bottom and so many nights of broken sleep that that night he had the worst night. He was waking every half an hour, I didn't get into bed until 3am. After that night I realised that he needed something more than just oxygen as he was really struggling. Rob came into hospital to swap over with me so I could go home and sleep, but I made sure that he was going to start pushing for them to do something more for him.


I hate that we had got to this point, where we had to get cross and really push for what we wanted. I appreciate everything the NHS has done for us and don't ever want to seem ungrateful, but sometimes as a parent you know what your child needs. Obviously we're not medically trained and I have so much respect for the jobs that all the staff do, but we couldn't stand back and have another night like the previous one and watch him suffering without a plan to help more. I returned home and Rob took over to what was another eventful night. After us asking for more they decided to finally try and few different things, first off the optiflow machine, which didn't help, then an NPA tube to hold his airways open, which didn't go in right and just caused him to gag all the time, so out it came. His nose was then all scratched up from this and he was just generally in a bad way. It seemed as though no-one really knew what step to take next, but he was eventually moved to the HDU part of the unit (and his own room) as they were going to attempt the NPA again in the morning. But somehow during that time they finally realised that yes, he needed CPAP, and a move down to PICU was imminent.

When I heard this news I wasn't worried, I was thankful that he was finally going to getting what he needed. Obviously he was in a bad way, but in my mind he was only going to be on PICU because that was the only place he could have CPAP used to begin with. But it was scary going back there. Because we couldn't stay on the ward both Rob and I returned home that evening, for the first time in over a week, but it brought back so many of those memories of leaving him there when he was so small, when we had no idea how long he was going to be in for or what was happening. But this time was different at least, we knew he responded well to CPAP and that when he was awake he was well. When we arrived after he'd been moved they had put down an ng tube, as well as an IV cannula in his hand. This I think was the most shocking, as it had been so long since he'd needed something like this. We were still unsure as to why he actually needed the ng, because he was still able to take food orally, but I think on PICU its more or less standard practice to put them in, just in case they need direct access etc. Suddenly he wasn't just Rohan having a little trouble breathing when he was asleep, he was in full on intensive care, with wires, tubes and machines. But I felt relieved. Relieved that we had finally been listened too, relieved that he finally looked so much more settled when he was asleep, and relieved too I guess that we could get a few nights of good rest. Leaving him was obviously so hard, but we were both so exhausted.


I've lost count of how long he was on PICU for, maybe three days or so, but as it was the weekend things all went quiet and we were left to more or less just get on with his care as usual, all the while just waiting for the new week to start and work towards getting off the ward. We again insisted that if he was showing signs of wanting milk orally that he be allowed to, as we'd worked so hard to get him taking his milk that way that we didn't want to relapse. And he did show that he wanted it and soon we were making our way back to his normal feeding schedule. We sat in our bubble of our routine and playing when Rohan was awake, he charmed the nurses with his smile and was generally pretty happy and content like usual. It was a relief to have him back but I felt strange being on intensive care with a baby who didn't look like he should be there. So many things were going on around us, people's lives going through unthinkable things, seeing families day in day out sitting with their sick children. It's a world I wish I'd never been invited into, to see behind those doors where things are so black and white but at the same time not straight forward at all. Where lives are changed and there is sadness as well as victories.

Eventually we were discharged from PICU and moved back up to HDU, with his CPAP. We were waiting on one lady to return to work so she could train us on the machine which we would take home with us. The weekend passed without much drama, just more waiting. You get used to a certain amount of just waiting around for one thing or another in hospital. We've worked out that really you need to add a few hours or a day or two on to most onto any timeframe that they give you. I feel like I've been a bit down on the care and the NHS in this post, so I just wanted to stress that however frustrating it can be and how long sometimes we have to wait, we're just so thankful for all that the hospital, doctors, nurses and everyone has done for us and continue to do. It's hard to imagine what our lives would be like without every single one of the services that we get, the equipment and medicine that we receive, all for free. Yes it can be ever so slightly frustrating sometimes, but when you realise how much they are doing, how over stretched the services and staff are then suddenly it doesn't seem too bad.


So after our weekend we waited a few more days and eventually got signed off on the equipment, and all of a sudden we were free to go. It felt a little surreal to just be able to walk out and be free. And there we are, our second hospital stay. It was the first of March, and the beginning of a month of recovering, for me both physically and mentally. I really don't think I processed any of what had been going on, just being in the mindset of just keep going and dealing with each day as it came. We were functioning on very little sleep, stress of seeing our boy in distress and juggling Theo and normal life. It took me a lot longer than I thought it would be realise what we'd just been through and the affect it had on us all. Rohan was doing a lot better, but we were still struggling with his sickness and a few weeks ago it all got too much. I think it all caught up on me, and after a few nights of bad sleep, exhaustion kicked in and I admitted defeat. It's scary when you don't really feel in control of your emotions or able to be there properly for your children's needs, but thankfully we were once again listened too and with the help of a lovely GP we were set up with new medication. I think I felt I just needed someone to listen. So that's where we are, but now we're facing our next challenge that is cardiac surgery next week, but I think I'd better write another post about that soon...

A Rohan update: Part One

So it's been a long while, and I guess a lot has happened. I feel like I really want to keep up with the blog but it's just been one thing too many recently and I've found that writing out short updates or thoughts on Instagram have kept my feelings level, but there gets a point when I just need to write it all out.

These past few months have been tough, I was, as always hoping that this new year would be kinder to us, but alas I don't ever think wishful thinking is going to be the answer. In a way I've come to realise I need to just stop torturing myself when thinking that things will be easier, or if our lives were different and comparing my situation to others. I just need to accept the now and that this is the life we are living and I don't really have much control over the bigger things that happen, I just need to make the small changes to make the everyday a little easier. Without sounding like a teenager there is something interesting to remember about trying to live the life you've been given (yolo and all that) because really what else can we do? I'm not going to magically change Rohan's condition, things won't ever just change overnight to how we think they should be and I'm sad to admit that I think things will always be on the harder side for us. Maybe they won't be hard all the time, but for some reason this life has chosen us so I might as well try and make the most of it.


Anyway, that out of the way I guess I should try and record a little of what has been happening over the past few weeks, to try and start processing it all. I don't really feel like I have even began to, sometimes you feel like you're coping and it's all just carrying on like normal, but then something stops you in your tracks and you realise that actually the carrying on part is just a way of staving off really letting yourself feel the weight of what's been happening. But how do you begin that process? I wrote a little about how on Friday I got a sudden urge to have a big cry, to let the events of the last few weeks off my chest a little, where the tension has been held tight for fear I guess of letting it go and it all coming apart. The cry still hasn't happened, the tension is still there but with talking and sharing my feelings it's beginning to ease a little.

So, to carry on with the story and update, Rohan has spent about two and a half weeks in hospital over the last month or so. Just after his birthday in the middle of January I took him to the doctors as he was still not getting over a cold and coughing quite a lot. His weight was dropping due to the coughing and subsequent vomiting that comes with it. He was prescribed some antibiotics and we hoped he get better. He then perhaps caught another cold on top of that, and when we had a our Respiratory review a week or so later he was still suffering. When he was weighed we were so heartbroken to see that he had dropped quite a significant amount of weight and looked visibly skinny. We were given some different antibiotics and what was thought was just blocked upper airways from all the snot. We did mention to our consultant that we were a little worried as it seemed as though his oxygen saturations were dropping lower than usual overnight, but not much more was said on it and we were hoping the antibiotics would help shift things.

A few days later we travelled down to Devon to stay with Rob's grandparents for a little break, but by Saturday it became pretty clear that he wasn't very well. We tried our hardest to carry on like normal, but once we'd put him to bed, he just kept on dropping and staying low with his sats. He looked like he was working pretty hard to breathe too, so I decided enough was enough and he needed to go to A&E. It's scary admitting that you can't give the help your child needs, that you are not enough and knowing that he needs medical help. I was scared about going back to hospital, and I think the trauma and anxiety from when Rohan was first born and our long hospital stay was returning. But I knew we had done the right thing.

We were seen straight away and taken to resus where he had an oxygen mask and seemed to settle a little. He had a high temperature and was still working hard to breathe though. It's difficult going to a new hospital where they don't know him and having to explain his condition to various people. But the team were great and we were eventually moved to the children's ward to stay overnight for observation. By the time we got there it was getting into the early hours of the morning and we were all exhausted. Rohan just wanted to sleep and so did we. We decided that as only one of us could stay that I should drive back to Teignmouth and sleep whilst Rob stayed. The plan was to put him on a machine to help with his breathing, they also tried to put in an IV cannula but couldn't get access at all, so he had to have an IO needle which went into his bone marrow in his leg via a needle being screwed in. I'm so glad I wasn't there to see this happening and I'm not sure I could've handled it. I think it quickly became clear that he needed something else to help him breathe and he was moved to the HDU unit to have CPAP. When I first heard this it filled me with fear, because this is the machine that he was very first put on the night after he was born and remained on for a good week or so in intensive care. It made me worry that it was all happening all over again.

The next morning I returned and was so happy to see that he looked so much more settled. He'd had sleep, fluids and antibiotics and it all seemed to be helping. I think that first day he slept almost constantly. The ward was very quiet and we had lovely nurses and doctors to ourselves, as well as a room so we could both stay. Rohan did really well and recovered quickly and by the next day was off the cpap and didn't require any oxygen. He eagerly wanted milk and was showing signs of his normal happy self once more. It was such a relief. I think he stayed one more night for observation and then he was discharged. It helped ease my anxiety a lot that he could just have such a short stay and quick recovery and then be deemed well enough to go home. We thought we were over the worst of it and that hopefully now we would just take it easy at home.


I had no idea that once we got home we'd be back a week later. I can't believe that we managed a whole year without going in again after Rohan was born, so it all felt surreal but familiar to be there again. Once again we felt split between our two children and of course the anxiety and trauma surrounding Rohan's birth and hospital stay were there just below the surface. But you just have to carry on, you have to make arrangements for childcare and know that you'll miss bedtimes and it breaks your heart to not be all together, but you just do it anyway because what other choice do you have? I feel worried that this may be our future now, trying to avoid hospital stays during the winter and having to go through this all over again. I feel bad for Theo that he has to endure this, that he has no choice and however well he seems to understand it and handle it, I know it's having an effect and coming out in other ways. He still needs us, he misses his brother and I'm sad that this may be a reoccurring thing over the next few years. I'll try not to think about it, but it's always there at the back of my mind.

Part two of the update coming shortly...

A Rohan update: Part One

So it's been a long while, and I guess a lot has happened. I feel like I really want to keep up with the blog but it's just been one thing too many recently and I've found that writing out short updates or thoughts on Instagram have kept my feelings level, but there gets a point when I just need to write it all out.

These past few months have been tough, I was, as always hoping that this new year would be kinder to us, but alas I don't ever think wishful thinking is going to be the answer. In a way I've come to realise I need to just stop torturing myself when thinking that things will be easier, or if our lives were different and comparing my situation to others. I just need to accept the now and that this is the life we are living and I don't really have much control over the bigger things that happen, I just need to make the small changes to make the everyday a little easier. Without sounding like a teenager there is something interesting to remember about trying to live the life you've been given (yolo and all that) because really what else can we do? I'm not going to magically change Rohan's condition, things won't ever just change overnight to how we think they should be and I'm sad to admit that I think things will always be on the harder side for us. Maybe they won't be hard all the time, but for some reason this life has chosen us so I might as well try and make the most of it.


Anyway, that out of the way I guess I should try and record a little of what has been happening over the past few weeks, to try and start processing it all. I don't really feel like I have even began to, sometimes you feel like you're coping and it's all just carrying on like normal, but then something stops you in your tracks and you realise that actually the carrying on part is just a way of staving off really letting yourself feel the weight of what's been happening. But how do you begin that process? I wrote a little about how on Friday I got a sudden urge to have a big cry, to let the events of the last few weeks off my chest a little, where the tension has been held tight for fear I guess of letting it go and it all coming apart. The cry still hasn't happened, the tension is still there but with talking and sharing my feelings it's beginning to ease a little.

So, to carry on with the story and update, Rohan has spent about two and a half weeks in hospital over the last month or so. Just after his birthday in the middle of January I took him to the doctors as he was still not getting over a cold and coughing quite a lot. His weight was dropping due to the coughing and subsequent vomiting that comes with it. He was prescribed some antibiotics and we hoped he get better. He then perhaps caught another cold on top of that, and when we had a our Respiratory review a week or so later he was still suffering. When he was weighed we were so heartbroken to see that he had dropped quite a significant amount of weight and looked visibly skinny. We were given some different antibiotics and what was thought was just blocked upper airways from all the snot. We did mention to our consultant that we were a little worried as it seemed as though his oxygen saturations were dropping lower than usual overnight, but not much more was said on it and we were hoping the antibiotics would help shift things.

A few days later we travelled down to Devon to stay with Rob's grandparents for a little break, but by Saturday it became pretty clear that he wasn't very well. We tried our hardest to carry on like normal, but once we'd put him to bed, he just kept on dropping and staying low with his sats. He looked like he was working pretty hard to breathe too, so I decided enough was enough and he needed to go to A&E. It's scary admitting that you can't give the help your child needs, that you are not enough and knowing that he needs medical help. I was scared about going back to hospital, and I think the trauma and anxiety from when Rohan was first born and our long hospital stay was returning. But I knew we had done the right thing.

We were seen straight away and taken to resus where he had an oxygen mask and seemed to settle a little. He had a high temperature and was still working hard to breathe though. It's difficult going to a new hospital where they don't know him and having to explain his condition to various people. But the team were great and we were eventually moved to the children's ward to stay overnight for observation. By the time we got there it was getting into the early hours of the morning and we were all exhausted. Rohan just wanted to sleep and so did we. We decided that as only one of us could stay that I should drive back to Teignmouth and sleep whilst Rob stayed. The plan was to put him on a machine to help with his breathing, they also tried to put in an IV cannula but couldn't get access at all, so he had to have an IO needle which went into his bone marrow in his leg via a needle being screwed in. I'm so glad I wasn't there to see this happening and I'm not sure I could've handled it. I think it quickly became clear that he needed something else to help him breathe and he was moved to the HDU unit to have CPAP. When I first heard this it filled me with fear, because this is the machine that he was very first put on the night after he was born and remained on for a good week or so in intensive care. It made me worry that it was all happening all over again.

The next morning I returned and was so happy to see that he looked so much more settled. He'd had sleep, fluids and antibiotics and it all seemed to be helping. I think that first day he slept almost constantly. The ward was very quiet and we had lovely nurses and doctors to ourselves, as well as a room so we could both stay. Rohan did really well and recovered quickly and by the next day was off the cpap and didn't require any oxygen. He eagerly wanted milk and was showing signs of his normal happy self once more. It was such a relief. I think he stayed one more night for observation and then he was discharged. It helped ease my anxiety a lot that he could just have such a short stay and quick recovery and then be deemed well enough to go home. We thought we were over the worst of it and that hopefully now we would just take it easy at home.


I had no idea that once we got home we'd be back a week later. I can't believe that we managed a whole year without going in again after Rohan was born, so it all felt surreal but familiar to be there again. Once again we felt split between our two children and of course the anxiety and trauma surrounding Rohan's birth and hospital stay were there just below the surface. But you just have to carry on, you have to make arrangements for childcare and know that you'll miss bedtimes and it breaks your heart to not be all together, but you just do it anyway because what other choice do you have? I feel worried that this may be our future now, trying to avoid hospital stays during the winter and having to go through this all over again. I feel bad for Theo that he has to endure this, that he has no choice and however well he seems to understand it and handle it, I know it's having an effect and coming out in other ways. He still needs us, he misses his brother and I'm sad that this may be a reoccurring thing over the next few years. I'll try not to think about it, but it's always there at the back of my mind.

Part two of the update coming shortly...