14 June 2016

A Rohan update


So I thought it was time to do a little update on Rohan. I feel like these are getting more and more spaced out because it seems as though things are just slowly ticking along. But in reality, when I look back at the last update quite a lot has changed.

Firstly, he's 5 and a half months old. I just can't believe he's been with us this long, even with the hospital stay which almost doesn't feel like real time. But at the same time I can't remember life without him, this little babe who's so part of our family it's like he's always been here.

Firstly this little boy really is such a joy to be around, he will often wake from a nap with smiles and little chats and is generally a very contented baby. Those who have spent any time with us will comment how he doesn't really cry, he more just has a little grumble and a moan. But he will definitely let you know if he's not happy about something! Rob always gets a big smile and a giggle when he walks in from work, he loves to be kissed all over face and he's just so sweet. These past few weeks he's been discovering his hands, especially his thumb which he's started to suck a little. It's such a delight to see his little personality developing and he loves to have proper little chats with us.


Development wise I know he's behind what Theo was able to do at this stage, but most of the time I try and push those comparisons to the back of my mind and just focus on how he is changing and developing. He's rolled over a few times, and likes to fling his legs up towards his head, and can roll side to side most of the time. At first he hated tummy time, but with advice from the physio we have started to lie him on a cushion with his arms tucked underneath and his little head lifts well off the floor. He's still much weaker in his upper body than his lower, some of which probably came from having to lift his legs with the heavy casts on, and it does seem as though he sleeps perhaps more than normal. I think everything is slightly harder work for him so he gets more tired.

Which moves me quite nicely onto the fact that he actually does sleep through the night. So much so that I actually have to wake him up in the mornings for a feed sometimes. For me this is unheard of, I can't remember when Theo started sleeping for a stretch of more than a few hours, but it was way later, definitely not until he was over 18 months. But this has caused it's own problems as he is due a feed in the night, but trying to wake a sleeping baby overnight just seems like a foolish thing to do. Which then means I feel like I am on a constant catch up throughout the day and just feel so stressed about the whole thing and worried that he's not getting enough. We had a visit from the dietician today and have come up with a new plan that includes an overnight break, so hopefully that will help us to start getting on track with his feeds once more and stop him from losing weight.

But in terms of his actual feeding he's doing so well. We changed bottles after a recommendation and this seems to have helped massively. I actually very rarely give him any feed down the tube in the day as he will take most of his feeds, if not all, orally. The problem is the evenings when he decides he wants to sleep for the night, and we can't make him take much or any of his last feed. So for now the tube will remain. But I can't believe how well he's done, to now be in a position that if his tube does come out in the day, there's no real panic to get it back in straight away as I know he will have his milk orally. He's such a clever little champ. I'm not sure when weaning will happen, but I know it could be a little later and will be more along the puree method than the complete baby led weaning we did with Theo. But that's just one small thing in a whole list of things that are different this time around.




We're still waiting to hear news on Rohan's heart condition. So far he seems to be functioning well and it doesn't seem to be causing any problems. From our last cardiac clinic we know that they want to operate, but they just need to make a decision on what they are going or need to do and how they're going to do it. I haven't really dwelled on this too much as I feel it's just not worth getting worried about until we know exactly what and when something is going to happen. We have another cardiac clinic next week, so we might have a better idea then.

Today we had another follow up hearing test as they're trying to work out if Rohan has congestion or some hearing loss. From his previous tests they know that he does have some hearing, and some of it within the ranges for speech and language, but they haven't got a complete picture. Which meant they weren't sure whether he would need further intervention. But today we got some really good results from one ear, meaning that, hopefully, he is at least picking up enough sounds to help with his speech development and that nothing really needs to be done until he can have a much simpler test done when he's a bit older. Which is great news for us. Last week we also took Rohan to have his eyes tested and thankfully they seem to be working as they should.

So about a month ago (I think!) we had a meeting with our respiratory consultant who talked us through the results of the sleep study which we had in hospital a good few months ago now. The study was to see how his sleep apneas were now that he was having the oxygen and had grown a little bigger and older. He was pleased to say that they appeared a lot better, and was happy that he was pretty stable over night. We discussed that we thought Rohan was generally ok without the oxygen during the day time, as the naps he has are generally either on us or with us close by, and that we thought he would be ok without it. Thankfully our consultant agreed and permitted us to just use the oxygen over night and long car journeys or naps etc. We're now not due to be seen until Rohan is about one! This was such a massive step and victory for us as it meant one more thing to cart around, less tubes and wires and just so good to see Rohan progressing. It's definitely made a difference to our days and just enjoy being actually able to pick up my baby and walk into the next room without having to worry about the tubes stretching or becoming tangled.

It's all those things that you totally take for granted when you don't have all these other things going on, I feel like I definitely did with Theo. Again it's like this whole world that you never knew existed. All these people living this life, having these struggles and until you're shown a glimpse into it you can just carry on your life never knowing. I was definitely one of those people and now I feel like I'm on the other side viewing everyone else go through their "normal" lives. I wonder if that's how people viewed me? I wonder if they found themselves thinking "you have no idea what it feels like to go through this" when they overhear someone complaining about something they're stressed about. I know I probably complained about all sorts of little things with Theo because I completely get that all problems and stresses are relative but it has really opened my eyes to the sorts of things I used to get stressed and complain about compared to what we have to deal with now. This isn't meant to be a pity party or an attack on anyone, just simply a realisation that actually it's made me really think about what I do have, how lucky I am and just whether it's really worth stressing about. There are so many things that are hard in our everyday, things that you wouldn't even think about or experience in normal parenting life, but it just becomes another thing after a while that it doesn't seem worth mentioning. So when people ask how things are going I'm usually pretty stuck on what to say. I don't want to open up that big long list of things I struggle with, all the extras we have to worry about everyday, all those unseen battles and constantly having to remember that this is how your life is now and the constant wondering and comparing at how others could be so lucky and how it could have been so different. So I usually just smile and say it's going ok, it is what it is, when really it's not. Of course we have good days, where we get caught up in the everyday care of Rohan, and enjoying him as he is but there is always a voice telling me that things are different and making me wonder what our life would be like if everything had gone the way it should've. In a way it's good that we just get caught up in Rohan, because he is who he is and we don't know him as anything different and I like that. It's just as soon as we step outside and burst our little bubble that you're reminded that things are different.

I still feel funny about identifying myself as being on this other side, I find it hard to really speak the name of what Rohan has, and find myself tensing up whenever the syndrome is named. I don't think I've fully come to terms really with what he has, and how his life could be. Maybe soon I will write a little more about how I feel directly about his syndrome, but for now it's too much to think of, and like I've said before I don't like to view him through a label and instead just measuring him on how he's changing and developing and not comparing him to others. Each day he shows us that he's changing, developing and growing and for us that is enough, I just need to learn to try and not let those thoughts of what everyone else is doing or complaining about creep in. To remind myself that everyone has struggles relative to their own lives, and even though some people's challenges are harder than others, sometimes it's just important to remember what you do have.

So it feels as though we're slowly ticking items off the list of things that need to be fixed, and that feels good. I know perhaps we won't always get good news, but I hope with all my heart that things continue in this way! I want to do a proper update on his feet and to share our Talipes journey, so hopefully I'll get round to writing that soon too.

3 comments :

  1. You are brilliantly amazing and are doing so well and I just can't imagine it at all. I love you and your little family so so much, you are my brave sister and I have nothing but admiration for who you have become through this experience and little magical light that is Rohan. I can't wait to give him cuddles and kiss his beautiful shining face. The difficult things really make us who we are. And as this post sets out, you are pretty bloody amazing. All my love, my bestest friend and my darling sister. I love you to the moon and back forever <3 xxxxxxx

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  2. You are doing a great job! I remember those feelings and thoughts with Charlotte. It takes time to adjust. We decided to stop reading and researching and just to accept things as they were and it really helped albeit many years ago. Go with the flow and don't fret about the future. You're an amazing mum from what I read and should be proud. Enjoy your beautiful boy. I look forward to reading about him flourish as im sure he will continue to do xx

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  3. My life, and journey in parenthood is very different from yours. But I understand quite a lot about those inner voices. I've struggled the last two years, since the death of my mother, and a birth that (I know people say this all the time, but literally) almost killed me. I too have wondered how different life would be if things were, well different. I'm coming to understand that those voices don't mean I'm not grateful for the things that are good in my life. It just means things have been objectively hard. It doesn't mean I don't love my children. Your love for your children is apparent, I hope you make peace with that inner voice soon.
    PS my oldest has the some gumboots as Theo. Love 'em.

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