Freddie's Mum

A Mum's perspective on having her baby diagnosed with the Mitochondrial Disorder: Maternally Inherited Leigh's Syndrome (MILS) and Infantile Spasms.

[freddieos-mum]

Mother’s Day

A huge Happy Mother’s Day to all the Mummies everywhere. Today is so hard for some people. Just because your child has grown their Angel wings it doesn’t make you any less of a Mummy. It must also be unbearably hard if your own Mother is no longer here to hear how much you love them - but they know you do. Not mention all the women desperate to be called Mummy and having a difficult journey, or know it can’t happen naturally. You are all amazing. Big love to you all.

(P.S. sorry for the silence, website is in progress and I want to make sure I’m happy with it before I give out the address).

[freddieos-mum]

In the last month or so Freddie Cheese has discovered his index finger on his right hand (lazy lefty is always much further behind on milestones) and it’s amazing, not only does he was to point at everything when you’re reading a book but he also has the strength to press buttons on his toys. Along with his strengthened index finger has come the ability to pick items up with his pincer (mainly food) and his pinch has reached a new level of pain. For a child whose fine motor skills have always been extremely poor this is huge, literally huge! It means the way he plays has changed and he understands the power of the point (when they point and you have to say what it is their pointing at). I’m currently enjoying watch him repeatedly press Beat-Bos buttons then pointing to his eyes/tummy in turn and looking for me to say the word. This child continues to amaze me daily. Not only have his fine motor skills improved but he’s also making progress with sounds and communication. Freddie can now produce the ‘T’ sound, often just saying ‘tttttttttt’ to himself. He can say Mama and Dada and he knows who we are, he’s called out ‘mama’ a couple of times when he’s wanted me. There’s a few other sounds he can make but, in more general terms, he tries to repeat sounds we make when we talk to to him. He also understands ‘cuddle’ if I ask him if he’d like a cuddle or I say ‘mama cuddle’ he will roll over to me and hold his arms up if he’d like a cuddle, if he’s sitting on my lap he’ll throw his arms around my neck and nuzzle in, or he’ll make it perfectly clear he doesn’t want one. We think he understands quite a lot of words. Ultimately it’s about repetition and making things simple for him, which we do. We also use a handful of makaton signs which he is starting to get (extra thanks to Mr Tumble) and he can sign ‘friends’, he’s also got much better at waving/clapping. He’s started moving his hands more and we think he’s trying yo use more signs but we’re not sure what they are yet. Basically, Master Cheese is coming on leaps and bounds! It’s genuinely incredible to witness but I can’t help but have a lump in my throat about what might be around the corner. I guess that will always be the way though, it certainly doesn’t take away from our enjoyment of now.

[freddieos-mum]

Today...

we went to Broomfield Hospital for an appointment with Freddie’s dermatologist, we arrived 20 minutes early so decided to grab a drink before we went through to the waiting room. I took Freddie over to a table with a couple of sofas in the corner whilst James joined the queue. I thought I’d take a photo of Master Cheese as I’d already decided I was going to write a post about what the appointment schedule was these days. A general update on our lives.

Anyway whilst, minding my own business, chatting to Freddie and taking a couple of photos a lady came and sat opposite. I didn’t really pay much attention but Freddie kept looking at her. She took her coat off then got up the join the queue to order her coffee, as she stood up she looked me straight in the face and said ‘all people do these days is take photos of their kids, I’m glad it wasn’t like that when I was younger’. Then off she went to get coffee.

I was so taken aback by her comment that I silently watched her walk off. Now, I know we live in a time of technology/social media and people document more aspects of their lives. There’s a generation that have inbuilt that if they don’t photograph a situation/event/party and make it public then it didn’t happen, or they didn’t enjoy it and people build artificial lives of pure happiness to portray through social media when it’s not true. I realise there is so much bullshit out there and I realise that is very sad. (I’m actually quite intelligent you see). I have also questioned, at various stages, as to whether I should make Freddie’s face so public. I way up pros and cons of sharing our journey and whether it’s in his best interest to have his face in papers, on social me etc. I am strict in some respects and I don’t like other people posting pictures of Freddie publicly. I do expect, at some stage to receive some for of criticism for writing a blog and having social media accounts featuring Freddie. It’s a subject that I would discuss if people were interested/curious about my motives, however, I will not tolerate a random dig from somebody who doesn’t know me or anything about me when I am minding my own business with my son.

By the time James returned I was stewing and getting really annoyed. I briefly explained my encounter to him and said I was going to say something when she returned. He told me that he thought I should and confirmed that he thought she had been rude.

I could feel the adrenaline pumping as she returned so I can’t recall word for word what I said but it was along these lines;

Me ‘Excuse me I was really taken aback by your comment about me taking a picture of my son, not that it’s any of your business, but my son has a rare genetic condition and a low life expectancy so if I want to take a photo of him I will’

Lady ‘I was just saying a comment; it’s what people do these days...’

Me ‘It was rude and it’s none of your business’

Lady ‘People say things, people say things to disabled people all the time..’

Me ‘what on earth has things people say to disabled people got to do with it?’

I think then it was along the lines of she gets things said to her because she is disabled... and something about how I haven’t asked about the comments people make (to her)... at that point I was very quick to point out my son is severely disabled and I don’t need to ask about what people say to her...maybe I told her it’s irrelevant (if I didn’t I should have!)... then I remained quiet for a minute and said ‘If you have inappropriate things said to you even more reason why you shouldn’t say anything to others, and if someone tells you you’ve upset them you should be able to say you’re sorry because you know what it feels like.’

I’d lost her by this point, she had twisted her body away from me to check her phone and read her book. Clearly giving me the message loud and clear that she didn’t really give a shit what I had to say and didn’t really care that I found her rude. I suspect it’s what I looked like, in my teens, when my parents tried to tell me off and I didn’t really give a shit.

Usually, after an encounter like that, I’d like to think I’d made someone think twice for the future but sadly I think she was just a miserable lady that felt entitled and carried a chip on her shoulder because of the way she has been spoken to at various stages in her own life. That does not make her attitude okay and if I didn’t have Freddie with me I would’ve totally lost my shit (the fact James was sat there rubbing my back whilst I was talking almost made me explode as it was) and not stayed as calm and composed as I did.

Afterwards I asked James if I handled it okay and he told me he was proud of me, so that’s a win.

Thankfully it’s Tuesday which means Yoga so after winding myself up again I am now off to find some calm and relaxation...

Namaste

[freddieos-mum]

2017...

was another year of knowing mitochondrial disease exists, another year watching it fight against our boy, feeling the heartache and loneliness that comes with it. Before this disease came into our lives, I guess, New Year was a time of hope, positivity and fresh starts. I can’t enter a new year with the same hope or optimism anymore. Of course there are moments of hope but I can’t look at a 12 month calendar and have hope or ambition for that length of time. Is that something that happens with age anyway? Or is it just the disease which has changed me? I know that those 12 months will be filled with as many highs as lows, they’ll be lots of laughs as well as tears. I just have one ask 2018, please, this time next year let Freddie Cheese still with us, please allow us to celebrate another Mothers Day, Fathers Day, birthdays and Christmas as a family. I promise I won’t waste any opportunities and we will live life to the fullest if you’ll let us.

2017, I will take from you our memories; we went to Brighton, Cologne, Paris, Centre Parcs, I completed Tough Mudder and two 10k runs to raise awareness for The Lily Foundation, as well as a radio interview about mito donor IVF and a newspaper interview about Freddie to support Jeans for Genes, Freddie had a gastrostomy fitted but he grew stronger, started eating and chewing better than ever, he discovered his index finger which means his pincer (and pinch) have improved ten fold, he can manoeuvre himself with purpose and empty the DVDs under the TV, he’s not had a seizure for eleven months (although I won’t hold my breath), he spent less time in hospital than 2016, we’ve taken him bowling, he’s been in a trailer on a bike, he says ‘dada’ and ‘mama’, he can sign ‘friends’ and he’s completed a term at nursery only having one session off because of illness, he’s been to numerous local shows, seen a musical and been to an art gallery in London, and he can sit unaided for his longest time ever (but not indefinitely). Most of all, we have laughed, we have laughed a lot. I actually think we have laughed harder than we’ve cried this year. That is an achievement in itself.

Tonight, I will take a moment to think of all the warriors (and their families) who lost their fights this year. Little heroes every single one.

Enjoy your celebrations everyone, after my curry I am off to bed... and I’m sure I will watch the monitor closely and enjoy listening to the sound of Freddie’s breathing for a little while before I fall asleep.

[freddieos-mum]

Our Christmas in a nutshell ; Annual Freddie & his stocking picture (look at his bed hair!), a few from our lunch out (which lastest four hours and Freddie was a superstar - meal was incredible too!), then a few from The Christmasaurus which we went to see in London. Freddie’s first proper musical and he loved it, wanted to stand and dance.

[freddieos-mum]

Christmas Eve at last...

I’ve been so excited about Christmas this year. Partly, I think, because we had such a shit summer I really needed hope of some stable time and something to look forward too, partly because I just bloody love Christmas! Our life tends to go to crap when we allow ourselves to look forward to something (especially holidays - they tend to involve hospitals in some capacity) so it reaches the stage you’re scared to look forward to anything, even the shortest amount of time, and constantly trying to manage our own expectations if we allow ourselves to.

Anyway, thank goodness Master Cheese has had a stable September-December (did you know this timeframe is the toughest in the year for bugs and illness? Absolutely horrific for vulnerable kids/people). I’m sure it’s a combination of antibiotics, steroid inhaler and his enteral feeds containing the exact nutrients he is suppose to be having that have contributed to his stability. He’s had one overnight stay in hospital. This time last year we had been in and out several times in December alone - including Christmas Eve! He had a chest infection over Christmas. We are immensely grateful, and it means we have been able to enjoy him and watch him grow.

Tomorrow we are spending the day just the three of us. We are eating out for lunch and going to have a very relaxed day. It’s worked out that way by chance but it’s the Christmas Day I would’ve picked given the opportunity. Just us, on our terms, quietly doing our own thing. I think back to a year ago we were still coming to terms with Freddie’s diagnosis plus he was still seizing regularly. Life was extremely intense and everything was terrifying. It’s not so intense now (it’s still pretty terrifying) plus I think we know a bit what we’re doing and I’m much confident in my role, not only, as Freddie’s mum but also his carer.

Whatever comes next I’m taking this moment (whilst James puts him to bed) to be grateful for the last few months. Tomorrow I know I will annoy James by taking too many photos, I will find myself gazing at Freddie Cheese knowing I’m going to want to try to remember everything and I will probably annoy him by kissing/squeezing him, and constantly telling him how much I love him. Christmas genuinely isn’t about the gifts under the tree, it’s about the people you are spending time with over the holidays and making memories with the people you love.

On that note, a very Merry Christmas to all.

(For the record, I’ve not even had a drink yet!)

(And, James I was joking about the presents, you got my list, right?!)

[freddieos-mum]

Tonight we’ve returned from a stay at The Treehouse...

Whilst it was lovely, because Freddie slept like a dream and it was full of wonderful Christmas festivities, these stays are usually tinged with a bit of sadness too. This time was no exception and the first time I’ve returned home shedding a few tears.

Last month our respite was cancelled because a family were staying due to the nursing staff giving ‘end of life’ care to a child. This month we were able to stay on the proviso that we didn’t need any nursing cover for Freddie overnight and would care for him ourselves. The family were still there you see which meant the nursing staff, understandably, had other priorities. Usually we look after him overnight when we stay anyway however, on this occasion, we had been planning to ask to leave him so we could go out for dinner but it really didn’t matter. Instead we went to Waitrose for breakfast. Now I love a Waitrose (especially one linked to a John Lewis Home Store) so it was all good. Ultimately we still had one on one time and that is the main thing we try to get when we stay, it doesn’t really matter what it’s doing.

Anyway, it’s not my place to discuss any details but this stay has made me think a lot about Freddie and when we reach the dreaded ‘end of life’ stage.

Will he know he’s dying? Cognitively, will he understand what is happening? Will he be scared? Will he be in a vegetative state? I had always presumed he would by the time we reached the hospice for ‘end of life’ but maybe not? How long will it take? How will we cope? How will it feel? What time of year will it be? How quickly will he deteriorate? I always presumed it would be a very gradual thing and we’d know we were heading in that direction, but I guess it doesn’t always work like that? Even our experiences with him up to this point prove he change so quickly, but will life and death be that quick for him? How will we know it’s time and he definitely won’t improve again? Just so many things going around in my head. None of which we can actually be given a definitive answer at this moment in time.

Life is so cruel. I see these children, really sick children, and I feel they should be enjoying life and being able to live carefree. No tests. No alarms or reminders for medication. No hospital schedules. No equipment. I don’t usually say this but it’s not fair. They’ve not had a chance to live. Tonight I feel heavy hearted for the families currently receiving such essential care and help, the ones that have needed it previously and the ones that will need it.

I was supposed to be going out tonight, into London Town to see Pete Tong. I’ve not been into London for a night out since before I had Master Cheese - I don’t think?!! Although I just feel like I want to be at home. Suddenly it’s never seemed so important to be around to hold Freddie in my arms when he wakes up and snuggle up to him. When you don’t know how many cuddles you have left you need to be available to soak up every second of every one you’re offered. Thankfully, with him, I think they’ll be a lot. If there’s one thing my boy loves it’s a cuddle (Takes after his father in that respect, personally I like my own space and not to be man handled too much).

Anyway, on the back of this immensely happy post, I hope you all have a wonderfully festive weekend.

[freddieos-mum]

Our Normal...

Life, as always, has been a bit chaotic recently. I naively thought once Freddie started nursery I'd have more 'time' - I'm rapidly concluding time is actually an illusion. I suppose, the truth is, I try to do more with all this 'time' I have. This means I go running and clean the house on Monday's (James takes Freddie and collects him on a Monday because he works from home), if there's any surplus time I run errands or cook food to freeze. It's actually a very productive day but just not very creative. My website is still no further along, my blogs still haven't be copied over... blah blah blah. Then we come to Wednesday (nursery day number two) which is chaos. James is in Brighton on Wednesdays so by the time I've got Freddie to nursery and returned home it's usually 10:30/11 - maybe later if I have to stop at the shops. Once I'm home I have enough time to clear up after the carnage that is breakfast, maybe do a load of washing, pack a swimming bag and have some lunch then I'm leaving the house again at 13:10 to collect him and drive to Ipswich for hydrotherapy at The Treehouse. We finally get home around 17:00. It's an intense day for both Freddie and me. James usually gets home once Freddie's asleep and I'm normally exhausted. Unfortunately The Treehouse only offers hydro on a Wednesday so there’s no flexibility to move it. It's something we'll keep reviewing and if it's not working we'll have to stop.

So, that is a summary of nursery days but rest of the week I look after Master Cheese, whether that's just playing at home, play dates with friends, therapy appointments or various other appointments. It's amazing how much more stressful it is trying to fit life in during the remaining three days of the week. Not to mention the fact that Freddie is shattered Tuesdays and Thursdays (the days after nursery) so I need to make sure that he has plenty time to sleep.

The biggest bonus is that he loves nursery and I love taking him. His face lights up when he sees his friends and key workers. It's beautiful to see. Sixteen months ago we didn't realise this milestone would be possible, but here we are and I'm bloody grateful. Something I took for granted when I was pregnant was that our son would go to nursery. I am of the opinion it's good for children to socialise with their peers, and to learn to respect adults other than their parents or family members. I still have those views but Freddie's situation is obviously quite specialised and I like that his nursery is a mix of additional needs and mainstream children. Personally, I'm not keen for him to he institutionalised into a 'special' only facility any time soon. He learns a lot from mainstream kids (and has excelled since starting nursery as well as having his PEG fitted) not to mention the fact mainstream humans, of all ages, can learn an awful lot from our special community.

The point of me writing was to try and summarise why I've not been blogging or updating you so much... essentially it appears we’re too busy being normal (whatever the hell normal is). In all seriousness, I love all these mundane milestones. I love that Freddie goes to (and really enjoys) nursery. When you’re the mother of a special needs child, to a certain extent, you can find yourself excluded from things. For whatever reason. You also reach a stage where you have less (sometimes nothing) in common with mums of mainstream kids because your child won’t hit developmental milestones on par with theirs and they have zero idea what it’s like to mother a special needs or medically dependent child. It can be tricky to navigate socially. To me, not only is nursery a break for both me and Freddie but it also adds another dimension to both of our lives. It’s something else to talk about, focus on and be grateful for... plus it’s routine and anybody that knows me well knows I like a bit of routine. Our fear, back in September, when he started was whether he would pick up too many bugs and become too poorly to go. If that were to happen the Doctor that heads up symptom management for The Treehouse had warned us we may have to withdraw him as his health it more important. Thankfully (touch wood), his prophylactic antibiotics seemed to have worked wonders so far this winter meaning he’s only missed one session of nursery for illness plus one week post his gastrostomy operation.

As I’ve written before, I like these periods of calm and normality immensely. I like just focusing on now and the biggest stress at the forefront of my mind being whether we’ll be late arriving for nursery. James and I have often discussed how our lives will never be carefree again, usually in context of how we didn’t actually realise how carefree our lives were before. I guess you always think whatever you’re worrying about is pretty major until something life changing happens. Anyway, I’m enjoying our quiet time for now. Everything seems still and life is calm in terms of the mito shit... and long may it continue.

[freddieos-mum]

I will update you all with Freddie’s latest progress and achievements in a proper post shortly, but whilst he’s finishing his breakfast feed I thought I’d upload some pictures of the first time he saw proper snow!

Our Sunday was very festive and consisted of playing in the snow, watching a Christmas film and decorating gingerbread men! We were supposed to get our Christmas tree but that was put on hold. Partly, due to the weather but also because our delightful cats, Gizmo and Gray, are absolute buggers and remove the decorations plus knock our fake tree over regularly.

Anyway, Freddie enjoyed the snow until I threw a snowball at James (who was holding the Master) and part of it hit the lil guy in the face resulting in tears so we swiftly returned into the warm. Kind of messes with the Lapland trip I had planned on the 'making memories' list I have. Hopefully we'll have some more snow and I can refrain from trying to throw some at James.

[freddieos-mum]

It’s Christmas time again so can only mean one thing… gingerbread! I love baking with Freddie, especially gingerbread. I don’t have one of those fancy mixers* everyone uses these days so when we bake and something needs to be the consistency of breadcrumbs that is achieved how my mum taught me… with your fingers! We got messy and everyone (cats included) ended up eating raw mixture but it was fun, plus they turned out pretty well.

(*James feel free to buy me a KitcheAid)

[freddieos-mum]

Whilst driving to The Treehouse this afternoon...

I watched my gorgeous, strong & determined little boy sleeping as I contemplated life. Firstly, how quickly the last few weeks had passed. It's been nice; Freddie Cheese is stable, actually, if I'm going to be honest he's thriving. I was looking at him trying to match him with the boy we watched deteriorate in front of our eyes from June. I couldn't. He's completely different now. He's so strong (his sitting record is around 3/4 minutes) and he can manoeuvre himself around the floor in record speed if he wants something. It's privilege to see. He's such an amazing kid.

Unfortunately, all the positive things don't necessarily make things easier. You see, when Freddie is poorly or has a period of regression - we cope. James and I pull together, we function on adrenaline, draw on Freddie's strength and we survive. That's what we have to do, so that's what we always do. As a matter of course we then reflect on events at a later date - when we have more 'time'. I think that's why this period is tough, because we've been reflecting. We've talked about the summer, we've discussed Master Cheeses achievements since then and we've cried. It may sound surprising that there have been tears now, when everything is going to well. The truth of the matter is that I'm very aware a regression could happen again, at any time and next time maybe he won't fight back like he has this time, perhaps it'll be too much, or maybe it'll take longer? Who knows what will happen next time... and there will be a next time, sadly.

It doesn't mean I'm not grateful and I don't appreciate this period of stability. I guess, what I am trying to say is that I appreciate it ten fold. By thinking of the summer and what he went through makes me even more appreciative of all the achievements, all the cheekiness and trouble he's getting in to now. My heart, as always, is bursting with such love and admiration for my son.

[freddieos-mum]

Wednesday, when I picked Freddie up from nursery..

his key worker gave me a laminated sheet of three photos she wanted to show me of his day. When I glanced at the photos I was surprised to see a little girl sitting with Freddie in two of them, one of which she was cuddling him. I asked who it was as I didn't recognise her... until I looked closer and saw she was wearing a Disney princess dress. The dress rang a bell as I saw her that morning. I only saw her because I turned to look at who had made Freddie's face light up so much and there stood this little girl in her princess dress. After I dropped him off I spoke with James and told him about the little girl Freddie was clearly fond of.

You see, having a none verbal child means I don't know who Freddie is fond of, who he's friends with, or who he plays with. He can't come home and tell me about his day or who he sat next to at lunch. I know no names other than the ones I've picked up being there. On top of that he has one-to-care, so his key worker isn't also responsible for another child or two so it's not like I'm aware of children he would interact with. I know he loves nursery. I see his face when we arrive. I know he adores his key workers as I see the way he looks at them. I've even witnessed children talk to him, say hello when he arrives. It's not the same though, it doesn't compare to you're child being able to tell you what they did and who with.

Seeing these photos made me emotional. It was lovely to see someone Freddie is friends with and them interacting. Then I knew why he smiled so much when he saw her - he was saying hello. It was an insight into his day, and it was extremely reassuring. He does have friends, they do play with him and they do like him. That's all any Mum wants, especially a Mum of a child that is socially very different, for them to be okay and have friends.

[freddieos-mum]

Costa cake date with my best boy ❤️ We’ve not done this for a long time. Also, look at that pincer action- what a hero.

[freddieos-mum]

The highs and lows of Mito...

That Friday lunch time in early July when I took Freddie to hospital believing he needed his sinuses cleared out and was told they were changing him to enteral feeding immediately it was such a shock. As I've mentioned before, James and I knew it would happen 'one day' but we believed one day was still quite a way off. Of course I knew his development had regressed, I could see his head control was poor and I knew he wasn't as strong as he had been. Looking back, I'm not sure whether I thought I could rectify it myself or whether I just didn't understand how far it had gone.

Over the summer, part of coming to terms with enteral feeding also meant grieving certain aspects of our lives. Firstly there were family meals around the table, something which I had emotionally invested in during my pregnancy. We never ate around a table growing up and I have had various battles with food during my life, but I had reached a stage I enjoyed cooking and enjoyed mealtimes. I was looking forward to taking care of my own family in that respect. As well as that Freddie and I had our routines, one of which was late afternoon snuggle on the sofa and biscuits together. Moving to a life where Freddie's food when into a tube and he couldn't manage more than a yoghurt orally would be another period or readjusting and grief. It didn't only affect me, it affected James too. We have always enjoyed meals out but avoided eating out or with people all summer. It was too hard. Mealtimes weren't happy times for anyone in our house.

The thing about mito is, you do grieve and you do readjust. You have to. That's just the way it is. You refocus on the important things that matter and you concentrate on the happy moments and the positives. More than anything it's remembering that it's about him, it's about Freddie not me.

Then the game changes again!

Master Cheese has been getting stronger since he's been enteral fed and even more so since the gastrostomy has been fitted. Physically he's come on leaps and bounds. Not just that but he's rediscovered his love for oral food. He screams with delight if he sees someone eating - he wants it too. We've started giving him more and testing him slightly with what he can manage. He's using his tongue to push food around his mouth and chewing, quite possibly, more than he ever did before. He still has a long way to go in terms of regulating how much he puts into his mouth one go, but then he's always had that problem. Don't we all? Sometimes I shove all the chocolate in mouth because I don't want to share too.

Anyway, to cut a long (sorry it's already been dragged out) story shorter, for the first time in almost four months we sat around the table and ate a roast dinner together today. Freddie had his own bowl as well as vegetables to pick up and eat. He thoroughly enjoyed himself and James and I savoured every moment of that meal. The type of mealtime we thought was gone forever in our house.

I know it will go, I know mito will get it's own way eventually but every time our amazing boy puts his mind to something he gives us more precious memories together. Whats more, the pressure is off in terms of making sure he gets enough oral food. Eating is purely for enjoyment.

Like everything else, I use to take family mealtimes for granted. I never ever will again and I intend to make the most of the ones we have.

[freddieos-mum]

This is a photo of breakfast time for Freddie... this is our normal. Breakfast consists of; levetiracetam, omeprazole, erythromycin, glycopyrronium bromide, co-quinone 10, Frebini original (or fibre, depending), water and a yoghurt! This is just breakfast, he has more medications repeated throughout the day plus movicol, inhaler twice daily and every other week he has azithromycin. I'm not even going to list his eczema creams or routine. Also to note, each time he's hooked up to a Frebini feed he's attached to the pump for 50 minutes. Sometimes I forgot how normalised we are to this routine. Thought of a weetbix and sippy cup of water seem like a different life.

[freddieos-mum]

So much for staying away from hospital...

Last week Freddie caught a cold. Nothing serious or dramatic just a cold, although it left him pretty upset and needing regular calpol. Nights were rough and tearful but day time he's was okay - just a little withdrawn at times. I thought we would get through common cold without any problems (which would be a milestone in our house). Unfortunately, I was wrong.

We had a particularly rough night Friday with him coughing lots and struggling to settle. A couple of times I thought I heard a wheeze and was concerned he may be breathing quickly but decided to try and let him sleep as/when he could in the hope everything would settle.

Come morning he was in great spirits but his breathing was faster and a wheeze evident. James called CAU to check in before we gave him his inhaler (which we give ad hoc when he's wheezy). He's had a salbutamol inhaler for around 13/14 months. We don't use it every day, only when his chest is bad or he has a wheeze. Usually we go onto a pretty intense schedule four hourly. It's not uncommon for children his age to need one to help try and expand the airways a little when they're struggling.

Anyway, by mid morning his breathing ended up so rapid I decided to get him off to sleep in the hope it may improve. In hindsight maybe not so clever as the airways tighten when we sleep but my thought process was he'd be resting and not rolling around. He slept for 2.5 hours and steadily declined with both wheeze and breathing, then woke up with a temperature. So James called CAU again and we headed to hospital.

Thankfully the Registrar on was a Doctor that happens to know Freddie very well. He confirmed his entire chest sounded wheezy and he was working harder than normal to breath. What he couldn't confirm was whether it was a bacterial or viral infection. The inhaler wasn't making a huge difference so he decided to increase it to every two hours and give him steroids.

He had a horrendous night in hospital Saturday night but slept the majority of Sunday to make up from it. Thankfully, his sats had remained okay so he didn't need any oxygen or further intervention. In true Freddie style, with every passing hour since we'd arrived at CAU, the day before, he had been improving. His breathing was still noisy but his resp rate was normal and he was okay in himself. When the consultant came round we agreed that they wouldn't do anything further in hospital that we couldn't do at home (plus we have various equipment like sats monitoring at home) so he was happy to discharge us.

Freddie still isn't 100% but he's okay in himself which is the main thing. It never stops surprising me how quickly things can change for him. I'm so grateful we have open access to the hospital as well as the medical support around us.

[freddieos-mum]

Experiences...

I had an interesting experience with Freddie earlier this week. I took him into town as I had some errands to run and whilst we were there I decided to look in a few shops that had sales on for Christmas presents. Now, Master Cheese bloody loves a shop (like his mother) he does love to have a good old look at what's on offer (pull anything and everything within reach off of shelves) and, of course, all the people. Sometimes I wonder if he thinks people have been placed on this planet to shower him with attention the way he stares and smiles trying to catch peoples eye!

So, we were browsing and he was getting very excited. I mean squealing very loudly and very high pitched whilst trying to lunge forward and grab hold of anything from the shelf. Usually this is met by other shoppers cooing and telling me he's gorgeous, or noting how happy he is, sometimes people tell me to enjoy it as time goes too quickly. Recently I've found people asking 'how old is he?' quite awkward as when I say '2' you can see the confusion in their faces (because he acts younger than two) then I'm not sure how much detail to go into. Is it acceptable to say 'oh yes, I know he doesn't act 2, he has special needs'? I'm comfortable saying that but I don't really want to have to deal with the people I've then made uncomfortable by saying it. So I just let them be confused and we both say nothing further. It's always the same sequence.

Anyway, back to the story, I had an over-excited Freddie on my hands and there were two women shopping with a teeny baby (I think one was the grandma - so that is how I will refer to her in my account), the grandma looked up and just stared at Freddie. He was oblivious. I wasn't. She remained silent and just watched him, his every move and his every squeal, with the only thing I can describe as disgust on her face. She didn't see me looking at her at first. I didn't have long to think about how to react. I was shocked and I wanted to ask if she had a problem but I didn't want to be confrontational. I've already made a concious decision that I don't ever want to come across confrontational with people over Freddie as I want to educate people and, in my experience, people don't learn in that way. So I just laughed, kissed his head and said something like 'I love you Freddie, always so happy'. and the grandma looked away without making eye contact with me. Then we left.

It's made me think, a lot! You see to me Freddie is Freddie, he can squeal when he's excited and sometimes that's very loud. Personally I love it. I love that he gets so happy and that he finds such enjoyment in little things. Of course those little things arent normal if you compare him to another two year old but it hadn't really crossed my mind that now people may already put him in the 'special needs' category when they looked at him. Which is what I believe the grandma was doing. I'm not sure how I feel about that. I wasn't prepared. I knew they'd come a time people would realise he's in a wheelchair (not a buggy) and it's already a bit awkward when people try to talk to him, expect him to wave goodbye or make passing comments about him wanting to get out and run around. Those things I can shrug off without having to explain and there's no judgement. I felt like the grandma was judging him and it left me a bit speechless if I'm honest.

I'm constantly learning with Freddie, not only about him and this disease but also about the world. I knew, one day, I would have hurdles to cross with people's reactions to him but I didn't realise 'one day' would happen so soon.