Oliver update

I’ve realised that I’ve been quiet for over a month.

For a change it’s purely down to us being busy in a positive way. No hospital stays, no real Oliver stress. Just being busy.

Since the last time I wrote, Olivers seizures seem to have stopped. The fear of a phone call from nursery or family has reduced (unfortunately I think it will always be a worry) But it would appear his medication is now at the right level and keeping him balanced. We make sure that his baby Jebba has her medicine too and anyone else who’s to hand during medicine time

I’ve been spending Monday afternoons on a Hanen course. To help aid my communication with Oliver. Although he makes noise (and plenty of it) we’ve still not got any clear speech. So being able to help nudge him in the right direction is really important. There’s a number of things I didn’t realise he was doing until I slowed down and brought myself down to his level.

We have had a bit of a surprise and the chesty noise that anyone who’s met him can always hear. For those that haven’t he ALWAYS sounds like he needs to cough or clear his throat. Well SALT (speech and language) think that it may be due to a bit of aspiration so he’s now been given something to thicken all of his drinks and it seems to have helped. We can tell the days where we’ve skipped the thickener due to one reason or another. So hopefully we’ve sorted that before too much damage has been done.

Our signing has improved massively. I don’t know if it’s due to the course and me paying more attention and looking for different things or just the he’s had another leap in understanding but I now have a good idea almost all of the time what he’s after with minimal frustration.

If it was a leap then it would explain his eating habits. Feeding Oliver is a continuous stress. It’s the only part of his condition that we worry about and if he was a ‘normal’ two year old I’d put the fact he’s eating anything and everything and demanding food/having hissy fits when we won’t share, down to him being two. I honestly believe that’s exactly what’s happening. His legs have stretched out that’s for sure and cognitively he’s improving so it’s got to be why he wants the extra bits, but there’s still that tiny niggle at the back of my head that the reason he wants to eat is due to the switch in his brain no longer working.

Last week we did another ‘2 year review’ to see where we are and how we’re doing. We then did the 20 month review after ‘failing’ the other one. The only area he’s not keeping up with is gross motor skills. He can do pretty much everything a 20 month old can do skill and speech wise (or at least to some degree) but gross motor skills (physical movement) he’s in the black, not even in the grey. Which I’m ok with (I regularly have to repeat this to myself) because I am ok with it. We knew he wouldn’t be walking by the time he was two like most kids are. I think sometimes having it put down in black and white makes it just that bit harder.

The two year review was in prep for a multiagency meeting that’s happening at the beginning of March. No offence to anyone that I work with but this will probably be the most important meeting of the year for us. Getting everyone that supports Oliver into one room so that they can discuss how he’s doing, what he needs and what everyone’s next steps are. I’ve spoken to a few people about the meeting and I’m excited and worried about it. I’m grateful that we can get as many people as possible involved to help shape what’s going on but at the same time it makes me sad at the same time that I need to push for a meeting with physio, OT, Portage, SALT, local SEN team, health visitor, nursery and anyone else that we can manage to get there. I’m not ashamed to say that there’s days where I don’t want to need any of the teams to support him but I’m grateful that they do.

Now for me and my promises I made to myself at the end of the last post.

I’ve found a hobby

  • Yes I have found a hobby and I’m sticking with it. Running – who’d have ever thought my hobby would be running 😂 I’m laughing myself right now because before Christmas if you asked me if I had a hobby I’d ask if napping on the couch was one 😂 I have book club and love book club, but it’s only a meet up once every 6 weeks and I need something that I do weekly to keep me sane. I didn’t realise I’d lost my sanity until I started going. I’m not a solo runner by any means I’ve been lucky enough to find a running group that suits my needs
    • They meet regularly
    • They aren’t highly competitive
    • They’re friendly (and a laugh)
    • They’re supportive
    • They like being social

    I went on my first run on the 9th Jan. I’ve had a week off due to being ill but I’ve managed to get up to being able to ‘run’ for four miles without really stopping. I can definitely do 3 without stopping. I’m not fast and I probably resemble Phoebe from friends as I run but I feel so much better for it and it’s transferred into every aspect of my life. My head actually feels clearer. I didn’t realise that I was suffering with so much brain fog until it went away!

    The ‘my child’s a genius’ moment

    Now I’m sure you can guess by the title that I’ve hit into a stage where he’s started doing new things very rapidly.

    I don’t know whether I had low expectations for what Oliver would do and when or I just abandoned expectations and took things as they’ve come and all of a sudden so many things are happening that I’ve had a wide eyed moment and thought ‘shit my child’s a genius’

    Don’t get me wrong I don’t think he’s going to ever astonish people with his IQ and I can clearly see that he’s doing things that all other children are doing….but he’s my child and I made him (with a bit of help from Mike) and he’s doing so many new things that he’s constantly amazes me. No one tells you when you have a child much other than ‘it’s the most amazing thing’, ‘you’ve never know a love like it’ and ‘it’s hard’. I’m sure every mum has that moment where they look and go ‘bloody hell look at what you can do! I’ve only shown you that once and now you’ve mastered it’

    Photos now take a couple of takes …

    Olivers brain seems to have had more ‘sponge power’ since he’s started growth hormone. He’s grown, he’s put weight on, he’s much more vocal and now he’s ‘doing things’. He’s not walking, he’s only just (by the skin of his teeth) commando crawling. He is, however, the fastest roller in nursery and is now solving little puzzles like his lock a block and his ball tube without any problem. My new favourite is blowing a kiss, he can’t blow a kiss and what he does is comparable to a nazi salute or someone acting out taking their hat off to greet you good day BUT I know exactly what it means and now you do too! This is my favourite part of having a child, being able to look at him and know exactly what he’s after, when he’s not right. It is by far the most amazing skill (other than patience) that he’s taught me. I didn’t think it’d be him teaching me.

    He is the happiest little soul and I’ve now been informed that all visitors to the nursery have to give him a high five when they come in the room, he also loves to dance with Karen and the girls. Portage was even impressed when we started with a language bag and he managed to get all animals bar the sheep correct on the first go. He has amazing concentration and has a keen eye for where you’re hiding things and picks things up so quickly that mummy and daddy need to start watching what they say just in case!

    There isn’t really much purpose to this post other than to boast about how well we’re doing, I don’t think it’s the ‘norm’ to be as excited by ‘where’s your head?’ Or ‘can you point at the piggy for me please’ as we are but our norm is different to everyone else’s

    For the parents of all children out there, especially the ones who develop a little more in their own time rather than the doctors and health visitors schedule, enjoy every moment as I’m already starting to realise that time is going far far too fast and I wish I could slow it down!

    Often referred to as the ‘beginning of the end’ this is Olivers first forward movement. We’ve waited a lot longer than other people to get to this point….I may regret it at a later date but I say bring on the end!

    A year on

    Hoping that Oliver would just magically awaken one day and be just like all the other babies slipped away week by week, four weeks to the day of him being in the neonatal unit we were told that the consultants wanted to talk to us as our results were in. 

    Mike hadn’t come into the unit that morning as he was trying to sort out our front so that when we eventually managed to get Oliver back home we didn’t have to fight the bushes to get him out of the car.  Before leaving Mike had joked saying ‘I bet because I’m not coming up they have the results’

    We’d established a very hamster wheel routine of get up, eat a bit of breakfast, go to the hospital, stay until around 1. Go home do a few bits and then either go back for the late afternoon feed or the late night feed and a cuddle. Then go home and sleep. 

    Or at least try and sleep.

    It’s not so easy to sleep when the little sausage you carried for 9 months isn’t where he was supposed to be. 

    So this timea year ago we were hopeful we’d get some answers and be able to start making some plans. 

    We’d been told what they were testing for so had already done a little bit of research but because there were a few things we couldn’t single into anything. We’d joined a hypotonia group as we knew he was floppy and we were reaching out to see if there’s anything we could be doing to help him.

    Ward round was about to happen so after frantically messaging Mike and ringing him to tell him to get up to the hospital because they have the results, we had an agonising wait while they checked over everyone else’s baby and we waited in the parents kitchen.

    We were called through and sat down and explained that the results had come back. 

    ‘The results have come back and he has something called prader willi syndrome’ 

    You know how in films when people are told about life changing news there’s a kind of muffled silence where your brain is processing news and can’t take anything else in – well that happened

    The nurse who we spent most of our time with cried. I cried. 

    Looking back, I thought at that moment I was sad. That I was upset that we’d not got what we wanted. We wanted a baby that we could just take home. I realise now that the cry was relief. There was no more unknown of ‘what if?’ , ‘why?’ , ‘will he come home?’ , ‘if he does will it be by Christmas?’ There was a new unknown but we knew there’d be a path that others had been down.

    We made a call to my dad and Mikes mum as they were in work and then went off to do the visiting to give out our news. A comment from Mikes Mum sticks with me, ‘you seem ok with it?’ 

    I think every couple are different when receiving life changing news. Some retreat, some take a while to accept, some go into denial. I’m fortunate enough to be in a relationship where we both have a mind set of ‘let’s just get on with it’. This news had the potential to make or break us and all it did was make us stronger.

    Being compulsive planners we went straight off and found groups. Every prader willi syndrome group on Facebook and the welcome and support that we received off the families was amazing.

    When I put up our diagnosis on Facebook I mentioned that if anyone has any questions please feel free to ask. I still stand by this. After the status went up and the likes etc that was a perceived support system. Only one person sent me a message to talk to me privately about it and ask the questions that I think most people are frightened to ask. Please, please never be frightened to ask about it, it’s also never too late to ask. Don’t think because you didn’t ask questions at the beginning that you can’t ask now.

    In the past year we’ve come so far, I’ve had wobbles but when I look at where we started and how Oliver didn’t move and wasn’t able to feed and now we have a baby that you can’t take your eyes off because he can roll himself to the hallway, we may not be crawling but we are sitting independently and we can shout dada over and over and over. Sometimes we remember to shout mum but it’s mainly dada. 

    The prader willi world we thought we were entering when we were diagnosed is so far from the truth of what we are currently living.

    For any newly diagnosed parents. As scary as everything seems now, I can promise that a year down the line you may not have forgotten all those feelings of worry but they will stop. I now have a crazy one year old, who other than being a bit slower with some of the milestones that babies are ‘supposed’ to have hit by now, you wouldn’t have a clue that anything was ‘up’ with him. He smiles and laughs more than any other baby I’ve come across and he makes me feel proud every single day. 

    For those that have stuck by the three of us all the way through and regularly ask the questions about what’s going on and how is he and how we are collectively, thank you. It’s not always easy but having people that are supportive makes everything so much easier. 

    Oliver at 1 month, 6 months and 1 year old

    One Small Step for us, potentially one giant leap in research

    What a day Saturday was! This was the first of many One Small Step events that we will no doubt be attending year after year. 

    So for those that have missed Olivers JustGiving page and what we were up to this weekend we’ve walked a massive 12.5 miles to raise money for prader willi research UK 

    As soon as we’d heard about the event we decided that we would sign up. Raising money, meeting families and going to four pubs while doing both it sounds like a perfect event for us and it was! One of the pws families own a chain of pubs in Stockport and had arranged a walk that took us from one end to the other. We started with breakfast in a pub FILLED with families. There were babies, some younger than Oliver, some older, brothers, sisters, nans, grandads, aunties, uncles…..I think you’re getting the picture. 

    I wandered around to see if I recognised any faces and found Catherine and Wills group and said hello! Every time I see William he looks bigger and stronger and Catherine always looks prouder. Catherine introduced me to another PWS mum who told me that last year her 7 year old son completed the whole walk. This is her 7 year old son who has prader willi syndrome. The syndrome that is often defined with poor muscle tone and therefore the kids get tired very quickly.

    Google would never tell you that a seven year old pws child could do this, the only way you learn these things is by integrating and going to things. Google would tell you that your future is bleak and that your child will be nothing but a worry. This little was also called William. Maybe it’s in the name? Maybe it’s the growth hormone? 

    I can tell you exactly what it is, he’s a product of his environment. He has parents that will do anything and everything for him and so far every pws parent that I’ve come across will move heaven and earth to get what they need for the child and will put everything they can into making their child be the best they can be. This is by no means limited to special needs parents, this is what every real parent would do! It’s just there’s heaven, earth and just a few extra walls for special needs parents.

    We ate our breakfast of porridge and bananas and got ourselves ready to set off along with about 300 other people. All of us in our blue OSS tshirts

    We stayed back and left last, there were seven adults, five kids and two dogs so keeping to the back meant that we could all keep together and not worry about getting lost. 

    At the back was a great spot. One of our new pws heroes, William, was at the back. He kept a steady pace and to say at times I felt a little over whelmed with how well he was doing is an understatement.m

    The day took from 10am through to around 5.30pm 

    12.5 miles

    Mud and lots of it. 

    Picturesque walk ways


    Not easy emotionally or physically but we did it! Oliver has his medal and in true Olympic style gave it a bite for the obligatory paparazzi photo 


    I’ve not hidden how not inTouch and uncomfortable I am with my feelings in my posts and this day had a lot of anxiety leading up to it.  For a long time I’ve kept my anxiety hidden and for those that know me really well, you know how stressed I can get over the strangest things. Spending a day with 300 other people who I don’t know and seeing families with older children and potentially looking into our future worried me. 

    I worry a lot. 

    I play it down a lot of the time. I worry about our future, I worry how I will be perceived if I’m not having a 100% happy day. I worry about how people will react to me saying about how scary the unknown is. Mainly because they say oh you shouldn’t worry you should take each day as it comes. That is FAR easier if you aren’t stood in my shoes. As an outsider it’s always been my favourite thing to say. I don’t really say it now, well I do, but I say it to other people so they can’t say it to me. I’ve found deflecting it and getting it in there first stops it being fired at me. I’ve also found just telling people positive things also helps conversation. Mainly because being a negative nancy doesn’t really get you anywhere and doesn’t make you a joy to be around. 

    On Saturday I wasn’t a joy to be around. I found that walking on my own with my own thoughts was a bit easier. Sometimes I’m a bit odd and I’m a bit awkward. Mainly because I don’t really know what to do with myself when my brains whirring away and I get lost in my spiraling thought process. 

    I’m lucky to have a huge support network around me. 

    I’m lucky that I had a team of 10 people with me.

    I’m lucky that over 300 other people care as much about this cause as we do

    I’m lucky that these events exist to meet new families

    Basically I’m lucky 

    I’ve no idea what the total amount raised was just yet and if you’ve read my post and wonder what the sponsorship will be going towards, to put it bluntly it’s Olivers future. It’s to help families just like mine get to the bottom of how we can stop the hunger, the hunger that won’t ever go away, it’s to look into new way of treating and managing the symptoms for the children and the adults who have pws.

    Without research we will never find the ‘cure’ that we’re looking for and finding a cure starts with hope…..and money. 

    So if you could spare anything at all Oliver, Mike and I will be extremely grateful along with every other pws family in the world. They can’t all say thank you but from all of us and the support network around us thank you. The support means everything to us

    Oliver’s JustGiving page
     



    Getting from tube to no tube – April update

    So I promised that I would update everyone on how the feeding is going from time to time

    It’s been an up and down journey to say the least. 

    My last feeding post click HERE to read it.

    As a brief recap in December we were taking 15-20ml a feed by bottle and the rest through the tube. 

    We slowly managed to get this to pick up but in January/February Oliver decided that he didn’t want to take any feed at all anymore, he’d gone from taking 70ml a feed to next to nothing. He would just chew on the teat and that was it. 

    It felt like we were going backwards

    Backwards, to anyone, is not a way you really want to go. Not when we’d gone from 15/20ml to 70ml a feed. It was the complete opposite direction to what we were aiming for and when you’ve been on such a high of steady progress it brings you back down with a complete crash. 

    We had to start over.

    Back to 20ml again

    So off we went on our merry little journey again. Now if you follow my Instagram you will see how I post things and how quickly all of a sudden Oliver seems to have realised that he’s actually a baby that can function. He’s started lifting his head more, the arms and legs are all over the shop and I’ve never come across a baby that can be so easy going and smiley, yet so serious in the same breath. 

    Anyone that’s had the chance to spend time with him in the past month and a half knows the side eye that he gives as if to say ‘who even are you?’ But can also tell you that two minutes later he’s smiling and flirting away and eventually hiccuping from laughing. A laugh that can make even the bleakest and difficultest moments melt away into the background

    So now for the news that people are looking for….

    Oliver’s feeds have now been capped, he’s not to have his feeds uppped, so we’re set at 180mls five times a day. (To do with weight but that’s for another post) To those of you that don’t work in MLS that’s 6oz. So we’ve finally had time to catch up without goal posts constantly moving. We are now taking a steady 120mls for at least three feeds a day (morning and late feeds are hit and miss) so that’s just over 4oz a feed.

    That’s 2/3 of his feed

    I feel as though feeding has just clicked. I don’t feed with two bottles anymore, that’s mixing the feed in a big bottle and transferring it to a small bottle so he isn’t overwhelmed and then top up as we go along, now all one big bottle for a feed. We still have to watch his breathing as he can quite quickly become overwhelmed and get all out of sync but we are getting there! Feeds still take an incredibly long time compared to other babies his age but the fact that we are starting to become less dependent on the tube is a win in our eyes. 

    For the rubbish few weeks we’ve had for cancelled appointments (endocrine apppintment being cancelled, weaning appointment with Salt cancelled) being spoken to about doing things with tube incorrectly (through no fault of our own just incorrect advice) we’ve had this absolute little gem keeping us going and it just keeps getting better and better. Hopefully by the summer we will be tube free….but I can’t get to excited or push too hard as we don’t want to back track like earlier in the year. 

    So for those of you that see me and see that at times I feel like everything’s slowing down and we aren’t getting where we want to be with other teams….give me a gentle reminder that we’re making progress in other areas and progress  in one area is better than none.

    ….Oliver hasn’t quite grasped the idea of a jumperoo….not even the leg part we understand that. He won’t even touch the toys 😂 one step at a time and all that

    Progress, progress and more progress

    This will be attempt three of writing this post.
    Admittedly I’ve been a little up and down, this is exactly why it’s taken me three times to get this post into what it needs to be.
    Progress is not just for Oliver, since starting this blog I’ve realised that I’m growing just as much as he is. With growth comes that horrible in-between part where you’ve absolutely no idea what’s going on. I’ve been sat in it for a while which is why I’ve not really been posting any blogs
    I’ve gone from pushing and fighting and sorting and researching to settling into being a mum.

    ….Well that’s what I thought anyway, looking back at the last two edits it didn’t just click quite like that.

    About three weeks ago I did have a day where something clicked. I often have moments where things click for me. Generally when I’m not directly thinking about the subject. So on my way to my last session of baby massage I got to the top of the road and felt that all too familiar feeling of panic. Anxiety is a nightmare at the best of times but for it to kick in as you’re on your way to somewhere that you have to be social is killer. I sat in the car outside for a while so I could collect my thoughts together

    I could finally explain why I’d been feeling the way I have and it’s four words.

    I’ve lost my independence

    This is actually a huge thing for me. I’m massively independent and always have been. I enjoy standing on my own two feet and it’s gone. It’s all to do with Oliver but not at the same time. It’s not him that’s making me feel as though my legs have taken away. It’s all of the staff that support him. I’m hugely grateful for every bit of support that we’ve had but at the same time it’s hard to cope with.

    Next month I’ve been told we should be able to try him with baby rice. Probably not that exciting to most people, this IS exciting for us with all the struggles we’ve had. To do this I have to have two different health professionals present and it’s down to them whether I’m able to carry on.

    I had to ask how to wean him and when I’d be allowed.

    So far since Oliver was born I’ve made one choice without asking anyone because I’m his mum and I thought it’d be ok. I was told by the dietician that he was sleeping for too long without a feed and made to feel awful. I didn’t back down and I’ve not changed it back to the old way. I know him and he’s doing just fine with what we’re doing.

    I think with these struggles and frustrations it’s highlighting other things to me that in turn cause me frustration and upset but for all the wrong reasons. I’m feeling upset with the way I feel people are reacting to both Oliver and I. That upset is not intentional as it’s how I am perceiving something. I can acknowledge this and I can sit and tell you until I’m blue in the face that’s what’s going on. It doesn’t stop me feeling it though and I don’t understand how I can acknowledge that there’s no reason to be upset but still be upset by it.

    I had a visit from my health visitor who asked a question and pretty much opened the flood gates. As I’ve said in previous posts I not really a big crier, I often suppress feelings and deal with them all in one big go. Generally when they arrive completely unannounced and at the wrong time.

    Fortunately the health visitor is an ideal person to have this happen with, so I’ve struck lucky this time.

    I could feel it start to happen the moment I invited her in and she asked how I was.

    ‘How are you?’

    Now for other new mums out there you probably know that’s not asked very often or if you haven’t yet…you soon will. I make a habit of now asking how mums are. Not that I’m not interested in their baby but I’ve become increasingly aware that I’m often not asked. This probably helps me bury issues that need addressing because my focus is the baby and sorting him.

    There are bad days. That’s ok and I understand that now….but when your bad days are followed by seeing this….


    …they fade away.

    Since my last post I know that Oliver has made so much progress. The Photo above is enough evidence of that. Just a few weeks ago he couldn’t do this, he wouldn’t move on his stomach very much but look at him now.

    His feeding has picked up again, his personality is definitely shining through and he’s turned into a chatter box.

    We’ve been to the park and tried the swings, explored the slide and we’ve even tried our jumperoo! He can now sit in these unaided. Granted he’s not actually sitting on his own and is often leaning a little BUT in a matter of weeks he’s gone from floppy baby to regularly surprising us with how sturdy he now is. If you asked me at Christmas if before the end of Feb he’d be doing any of this I’d look at you hopeful and say ‘yes, I hope so’ while secretly thinking ‘Am I being optimistic?’


    We now have to make sure we strap him into the bouncer now, gone are the days where he would just lay there and not move. Those legs of his have enough kick in them that he wriggles down and they hang off the end so now he has to be strapped in.

    We’ve discovered the baby in the mirror. Close friends understand that. For those I don’t speak to regularly, our morning routine consists of me coming down to sort his  bottles so I pop him under the play gym and he talks to the baby in the mirror (I should really charge this baby rent) he really talks, I would love to know what he’s saying.

    Attention is now demanded. If you aren’t looking at him he shouts to get your attention and then garbles back to questions you ask. The baby that I gave birth to that responded to very little, who didn’t move or even feed has disappeared. We now have a happy, healthy, chatty, smiling little boy and other than his tube and his small lack of tone you wouldn’t think anything was wrong, he laughs, he smiles and he’s absolutely perfect in every little way

    So for my feeling of not really being a mum and being unable to make any decisions…I look at all this and realise that without me being his loudest cheerleader and without me working hard at every last thing that he needs doing, we wouldn’t be where we are right now and that’s worth my battle of losing my independence because my reward is right in front of me.

    I’ve started seeing less of prader willi and all of the problems that come with it and I’ve started seeing Oliver for who he is…that sunny little boy who’s going to talk the ear off anyone he gets near or melt their heart with the happiest smile I’ve ever come across in my life. I think this is something that only people with children or family that have additional needs will probably ever understand but it’s a huge thing and I’m so glad that it’s happened sooner rather than later

     

     

    Finding time to reflect

    So I’ve set myself the task of looking back from time to time.

    We all spend so much time fixated on achieving our next goal that we sometimes forget to look at back at where we started.

    From a personal growth point of view I think I’ve learnt how to be more open. I now can let people know how I am feeling. Something that I’ve always bottled up and pushed to one side. I’ve finally managed to use the words ‘I’m struggling’

    Before Oliver came along I’ve never ever admitted that. How can you get to 28 and never admit that you’re struggling? I haven’t even used it in terms of juggling getting a baby ready and sorting myself. I’ve used it in the emotional sense.  Struggling would probably be an understatement for how I’d felt the day I’d used it. It was a bad day, Oliver pulled his tube out, I had a mad panic to get him ready to get out of the house and up to the hospital to get it replaced and finish his feed, get home, feed myself and get myself to baby massage. I didn’t get to baby massage. I got back into the house and cried. Not because I was sad but because I was frustrated. Being a creature of habit and a compulsive planner I know how long it takes to do everything and can always plan my days so that I’m able to get out and to places on time. That went out the window. That’s an emotional strain on me straight away because I get stressed when things aren’t moving smoothly. Then to go up to the hospital to get the tube put back in after seeing his beautiful little face without a giant teddy bear sticker holding down a tube is hard. I know that he needs it, he wouldn’t survive very long without it but I love that little face, he looks so different without it.

    I think emotionally it tugs at me seeing him that way because in my head that’s how my baby should be. I’ve accepted he has what he has but it doesn’t stop me still having moment of weakness where I could be like all the other mums I know. No tubes, no extra stuff to sterilise, not having hundreds of appointments, being able to make your own judgement calls without having several different health professionals telling you that you can or can’t do that.


    I was also tired. I’ve complained about being tired before I had the baby. This is a whole different kind of tired to what I knew before having a baby. This is ‘cant find the right words’ tired, for those reading this that haven’t had a baby and think you’ve been tired. Imagine the time you were most tired, now imagine doing the same thing day in day out and loving almost every moment of it but not getting that one full sleep that you need to recharge. Before you say it,  whoever made this line has also never had a baby, ‘sleep when the baby sleeps’. Do you know what you’re doing when the baby sleeps? Everything that you’d normally try to fit in the day. Cleaning, cooking, eating, bathing and even going to the toilet.

    I seem to have digressed a little here. Anyway I’ve finally admitted when I’m struggling. I typed the text through teary eyes and flopped onto the couch and ordered a yogbar. Did you know you can get that delivered? Well I didn’t and you have to spend £10 to get it delivered. I’ve now got a stash of it in the feeezer for ’emergencies’ I realise now on reflection that:

    1. That wasn’t an emergency but I’m glad I ordered yogbar in
    2. I felt so much better for telling someone I’m struggling
    3. I wasn’t actually struggling emotionally from a mental perspective it was struggling emotionally from being tired, so very, very, very tired.

    So emotionally I have grown, I feel I may have matured and that’s why I can hold my hands up now and tell people how I feel.

    As a couple – now those who know mine and Mikes relationship know that we aren’t soppy. In fact we’re probably the complete opposite of what teenagers imagine a proper relationship is. He’s my best friend and my rock. I talk to him about everything. Probably far too much sometimes and share things that no one wants to know.

    For the highly strung individuals we are, our relationship is built solidly on trust and we’re both incredibly independent people so we both have our own friends and go on our own nights out. We have high expectations of each other that we never seem to have to discuss but we seem to maintain them without any problems.

    I knew when we found out we were pregnant that it’d change our relationship and that when the baby came it’d change our relationship again. I never realised how much having baby can change a relationship. I think we’re both now more patient with each other and I’ve found new things about him that I love. I’m so glad that we’ve both grown together and stayed just as united, if not more, with everything that we’ve gone through because it hasn’t been easy and it’s not always going to be easy but I’ve realised more than anything that no one else out there could be a better dad for Oliver.

    Now for Oliver.

    When I started this blog I’d been left in for the night while Mike went on a night out. For the first time in a month or so Mike and I had spent the night away from each other. Not for long, just a few hours but when you’ve been side by side for so long (pretty much from mid October we were like Siamese twins right up until his return to work in January) I was left with my own thoughts, which is dangerous at the best of times. In the two and a bit months since Olivers been home he’s progressed so well. I have moments where I feel like we aren’t getting anywhere but:

    • he’s gone from drinking 5mls to averaging 60mls a time and has even got up to the occassional 90mls recently.
    • He has started smiling and laughing and his little personality is starting to shine through.
    • His weight has now more than doubled since birth and he’s finally out of newborn clothes and into 0-3 month old. I did get excited I think that he was in 3-6 month clothes….he is NOT that big yet but it amused me to no end looking at the size of the 3-6 month clothes on him and remembering that’s what the new born clothes looked like when he was born.
    • He now has the most gorgeous rolls. They’re on his thighs and his little arms. I can grab his little chest and shout ‘boobies, boobies, boobies’ at him (he finds this as fun as I do) and he also finds it hilarious when I shout ‘pooooey’ when I open up a dirty nappy.
    • I’ve finally found someone who finds me funny and appreciates my daft repetitive songs.

    My post cover pic is evidence of how well he’s getting on. That skinny little baby is well and truly gone

    He came home pretty much like a little doll that didn’t really do much and he’s now a baby, he’s my baby and I’m so proud of every little thing that he’s doing. 

    Whys Roo getting in on my photo?!

    Passing the 1st centile line for weight

    Now without getting into a breast is best debate. (A fellow blogger and mum friend from The Unit at Arrowe park has looked at this debate see Here) I’d said all along that I’d like to give breast feeding a go and I’ll stick by that. It’s not everyone’s preference and I fully understand that.

    When Oliver was born he wouldn’t latch. Most babies with PWS aren’t able to latch and we very quickly learnt that he wouldn’t be able to, so I started expressing. For ten weeks I’ve continued to express. I’ve gone through days of mass milk production and days where I’ve had barely anything and cried through them. When they talk to you in the hospital they don’t tell you about the mental strain that your milk supply dropping can cause, they also don’t tell you about how tiring expressing for a baby with an NG tube can be.

    Babies who are formula fed have their bottles cleaned and filled with sterilised water ready for a feed, pop the powder in shake and go! Some even easier, they buy ready made formula and pour into their sterilised bottles and are good to go.

    Breastfed babies are a little different but mum has their supply with her and can fed on que.

    Mums who choose to solely express – generally become the insane member of the crowd. We still have all the sterilising issues of formula fed parents but we also have to sterilise our pumps that are being used 6/8/12 times a day.

    Mums who express and NG feed have the same as above but we also have two different syringes to keep clean and carry with us and litmus paper to test the tube before feeds.

    My original routine when in hospital was express when my boobs filled up and I had the opportunity to. Being in the hospital for a good chunk of the day meant that I could use their machines which are better than most of the brands that spring to mind when you think of baby bottles and accessories. I produced so much in the first instance that I filled a shelf in the unit freezer. This changed when I came home. It dropped off significantly and I had to put a few formula feeds in to keep us going. Then after being giving domperidone by the doctors my supply boosted back up, not quite to what it was but enough for me to be able to put a bottle in the freezer here and there. We came home and Oliver was on around 76mls a feed and is now on 116mls a feed. There’s a huge difference there in quantity over 6 feeds a day. I’ve started to get to a point where I can’t do the overnight expressing because I’m so tired. It’s also incredibly draining and lots of people don’t understand, especially those who haven’t breast fed. A feed now takes over an hour. By the time we try a bottle feed, get his expressed milk through the tube and then express enough for the next feed that’s at least an hour. So six hours (minimum) out of twenty four I’m feeding or preparing a feed, if you add on the eight hours sleep you’re supposed to get as well there’s fourteen of my twenty four hours gone. Ten hours left to do everything else. People seem to be frustrated with me not visiting or getting time with me. I now have a time slot of around three hours where I can do things comfortably. I can do things for longer but the discomfort that I have isn’t really worth it.

    I’d started having doubts and thought about slowly reducing my breast milk feeds down to try and make other people happy. An odd thought to have to some people but until you’ve been doing what I’ve been doing and having restrictions you cannot really judge my thought process. With Mike back at work in January I know I can’t carry on at the rate I’ve been going. I’ll never be able to leave the house between feeds, expressing, appointments, SALT visits, dietician and neonatal nurse visits and doing household chores – I should probably remind people that it’s my choice and until I decide to stop then you have to fit in with Oliver’s and my routine.

    This week oliver has finally passed the 1st centile line.

    Both I and the dietician cheered when this showed up on her graph. Olivers weight has been so low since birth that he didn’t even follow the very bottom line, he was creating his own line. The neonatal consultant had even mentioned that he may need to go on a higher calorific feed once a day if his weight didn’t pick up.

    I’ve no idea if formula would have had the same/better/worse effect. I just know that all of my efforts are working and that’s good enough reason for me to hang in there. I know that my milk will start to drop off and probably eventually disappear to nothing over the coming months but until then I’m going to stick with it.

    I think that it’s odd that he’s going to go from one extreme to another, struggling to feed to not wanting to do anything but feed. He’s doing really well feed wise now, we’re building him up and he now takes around 30-35 every feed by bottle and we’re going to start trying to add another feed in to build his stamina up. He’s finally started letting us know when he’s hungry as well which is a huge step forward for us.

    We’ve managed to cross off another goal and now we’re on our way up to between the 2nd and 9th centile to fit in with his length. Hopefully this won’t take long! 

    We will still do it, just at our own pace

    So it has been just over a month since we received Oliver’s diagnosis.

    Things I’ve learnt:

    • Everybody takes news in different ways
    • People who you didn’t expect to offer support appear
    • People you expected to give you support back off
    • At 27 years of age you can still surprise people
    • Personal experience is invaluable

    The past 8 weeks have been a rollercoaster ride. I’ve been up, I’ve been down, I’ve been numb and I’ve been completely confused by feelings. Hormones after you have a baby are all over the place anyway but having gone through what we have all been through can take its toll on you. Oddly I’ve discovered an awful lot about myself and the people who I surround myself with. I’ve friends that I thought would be crutches not appear, I’ve found that work colleagues are actually more than that and that being direct with people is probably the best way to deal with things.

    I think as a unit we have surprised a lot of people, which has surprised me a great deal. I never thought that me surprising people would surprise me and makes me wonder how I am perceived by other people or if my reaction, Mikes reaction and our reaction as couple is unusual.

    Our support network has extended since having Oliver’s diagnosis. Oddly to people we have never met. Facebook for all of its faults, has actually become one of my crutches. Not my own private profile but a group profile that we have been added in to. Having a diagnosis of something that is rare (one other case go through Arrowe Park as far as we are aware) is, as you can imagine, quite a lonely place. That lonely place we were in lasted about 4 or 5 hours. It’s not lonely when you have a facebook group full of parents who have children with exactly the same condition. Right now I feel closer to a group of people that I have never met because they completely understand every worry that I have, most have already been through it and can not only hold your hand (metaphorically) but can also guide you through, pick you up when you are down, dust you off and send you back on your merry way. One thing I can tell you about their behaviour, it’s catching. We’ve been in the group a little over a month and other families who have just had their diagnosis have come through and watching their struggle is heart wrenching. Not every one has reacted how Mike and I reacted to the news. Maybe their reaction is more honest or indeed everyone doesn’t react in the same way. Some people are more in touch with their feelings and express them more easily. The only thing I know is that these families genuinely care for each and every other family in the group and this includes us. We now belong to a small community – a supportive, praising and morale boosting group of amazing families.

    I’m a self confessed Googler, I believed that if you needed the answer, google has it. Google does have the answer to pretty much everything you need. I can tell you what Google didn’t have for us, real life experience or up to date information.

    I can imagine that if you have signed up to read this blog then you may well have read up on Prader Willi. I can tell you, hand on heart, that what you read on Google is not the reality of the syndrome anymore. The families we are now in touch with have shown us exactly what Oliver’s future is likely to be and it is 100% not as bleak as any search engine will have you believe. The families we have spoken to have shown us and told us what life will be like. This has probably been the biggest boost for us, they have been a safety net when we were falling and its something that I don’t think I can put into words how thankful we are.

    The title of this entry I originally picked ‘Just getting on with it’ because that’s exactly what we are doing. We’ve been told what is important to push for and we have started the ball rolling for each of those things. Now we can just enjoy being a family, a normal family because in reality that’s what we are. We go shopping, take the dog for a walk, have PJ days and have lazy mornings. We’ve slowed down with the compulsive checking and looking for things that we were doing early days and have relaxed into home life. This is in large part because of the Facebook group but is also due to our family and friends stabilising us. Without the time and space given to adjust and relax into this, I don’t think that we would have got to the point we are at, as quickly as we have.

    We will still do it, just at our own pace.

    Last month we didn’t think quite like this, if I am honest, it’s probably only in the last week that I have felt like this. PWS hasn’t stopped us doing anything so far, except getting out of hospital at the expected time and for now that’s exactly how it is going to stay.

    So if you see us and we look like were being a normal family, doing normal family things. It’s not because we aren’t ‘dealing’ or ‘coping’ with our situation. It’s because Oliver’s syndrome is the smallest part of our family life and we aren’t going to let it stop us doing anything that we wanted to do, if you have witnessed how far he has progressed since day one, you’ll know that Oliver is very much of the same opinion.

     

     

    Getting from tube to no tube

    Oliver is tube fed. This is due to the lack of understanding on his part of the suck, breathe swallow reflex. This is something we all take for granted as we do it without thinking. Next time you’re having a drink out of a bottle think about it while you’re chugging down your Coke or Fanta. Now imagine trying to relearn it, not an easy task.

    We feed Oliver 6 times a day with the tube at the moment and we’ve had a battle to get to the point of being able to bottle feed anything. We’ve gone from struggling to do 5ml to taking 15-20ml a session now. This mainly being down to Mike not me. For someone who generally isn’t very patient he’s worked wonders with Ollie and has got the bottle feed down to a fine art now! We’re just waiting for speech and language team (salt) to see his huge improvement in a matter of days and check we’re ok to carry on the way we are and continue to let him dictate what he can and can’t do

    For pws parents who are struggling to get their little one to feed here’s what we’ve been doing

    First we’ve had the ok to bottle feed by the salt team.

    Second we get comfy on the couch with our legs bent up  We lay Oliver on our bent knees so that he’s stable (holding in your arms can make him need to find his balance, so distract from what he should be focusing on)

    Put a timer on for ten minutes and start feeding.

    Some feeds we get five minutes in and we can see he’s had enough and stop, other feeds at the end of ten minutes he wants to keep going but we don’t want to push him and wipe him out. It’s more important to us that he tries to feed each feed than get one solid bottle done a day.

    We are making progress and he never seems to fail to surprise us with what he does. Yesterday he brought wind up no problem! There were cheers in our household and smiles all round and I’ve come to realise this is what being a parents all about. Not showing your baby off but learning to celebrate all the small things that they achieve. 15-20 ml is nothing for most new born babies and for us and our seven week old it shows a huge leap in progression that when leaving the hospital we thought would take months because of google

    Oliver 0.5 – 0.5 PWS

    We’re coming to claim that point five PWS don’t think you can keep it!
    Note: I will continue to update this post as and when we make more progress. Hopefully it won’t be long before a full bottle every feed and we can get rid of the tube