A change is as good as a rest....but can I just have the rest next time please!

I don't like the post below, it's not reflective of how I am feeling today but when I sat down to write, this is what came out. Self-pity is something I try to avoid especially in this blog which was supposed to be focussed on the HoPE in HPE but also it seemed wrong not to post this because it's all true and even though it might not be how I want people to see us, it's us.

I hate Winter.

Viral infections abound in Winter, everyone has them. In fact mention to anyone with young children that your daughter has a viral infection and you will be undoubtedly be met with 'oh gosh ours too, isn't it horrid'.

The pre-op 'smile'

Naturally in our infinite wisdom we chose deepest winter to affect the biggest change to Mojo's daily life so far by having her feeding tube (gtube) fitted. Actually as previous posts have mentioned this was in fact attempt three with previous tries being thwarted by illness. As it transpired attempt three should also have been halted by illness but it was a teeny fledgling illness which was yet to make its presence felt. So instead we learnt what happens when you take a teeny fledgling viral infection, pass an intubation tube past it during an operation, transporting it straight into the lungs. You are left with a horrible, raging, dangerous chest infection. In Mojo's early days someone told me that it is usually complications from things like chest infections which kill children with HPE, it's something which unsurprisingly has stayed with me and every time I hear 'chest infection' my blood runs cold.

Like father, like daughter!

To cut a very long, complex, story short our short hospital stay became our longest stay to date and the six weeks which have followed have been incredibly hard work. Probably the hardest yet. Mojo has been sick at least twice a day for 6 weeks. Twice a day. SIX WEEKS. She still cannot breathe through her nose and therefore cannot sleep for any period of time without waking making a heart-breaking frustrated screaming noise. The only way to ease this is to intercept it as soon as she starts to become unsettled, which has meant that one of us (and usually my husband as I'm still breastfeeding baby Ce) has slept on a very small camp bed next to Mojo's bed every night. Six weeks.

Since the operation Mojo's illness combined with her inability to breathe through her nose has meant that the feeding tube which was meant to be an emergency-only fluid top up tool has become her primary and indeed, most days, only source of nutrition. She no longer chooses to drink anything by mouth. I am still praying that this is a short term thing that will improve once the breathing problems ease. As for the vomiting, I'm still trying to find some answers.

Needless to say the start of this year has been exceptionally hard work. Yet when people ask I still find myself saying the same thing.
'How are you all'
'Oh we're fine, Mojos not been so good but we're okay'
It's because it's impossible to explain what it's like living this life. This knife-edged, sleep deprived, relationship testing, sanity pushing daily wade through treacle. So you put on your game face and you go to work.

Then you have a good day. Mojo wakes up and she's slept for more than two hours in a row, she's in a good mood, smiling, laughing. She doesn't throw up her breakfast, or her lunch. She chats away in Makaton to you. She's well enough to do a normal activity like go to the swings or even the cinema. She comes home and wants to play games and read books. Then you feel like everything might just be okay. Even if by bed time she's been very sick and is struggling again to breathe as she tries to fall asleep, you feel just that bit better about the world.

If things continue to improve the way they have been in the past few days it may well be that Mojo will be able to take up the nursery place she was due to have at the start of January and some semblance of normality will once again reign in our house. Even if it is a house with sick bowls in every room (including measuring jugs to measure the sick so we know how much fluid to replace!) and we're up to our elbows in disposable (pah!) syringes.

I know that things are finally getting better and I know that because I'm here and I'm writing this.

I know things are better because for the first time since she was born Mojo has a sodium level is the same as you or I, which is completely down to the extra fluid intake the gtube facilitates. I know things are better because she has put on weight despite all the illness and the vomiting. Primarily I know things are better because I can see it in her face and in her smile.

I also feel, all too keenly, that things could be much, much worse. This winter has been savage for many of our HPE friends with long hospital admissions, terrifying life threatening illnesses and in a few cases life taking illnesses. When I think of those people I feel ashamed that I have effectively whinged for an hour about a chest infection.

Next year we're off to the Caribbean for the winter and I will post pictures of Mojo sipping mojitos rather then banging on about woe-is-me!

Right...I have a nursery lunch box to buy.

Happy Old Year!

About this time of year each year I put together a photo album. An old school one with proper printed out pictures and sticky film pages. I love photo albums. Since Mojo arrived I have been very diligent in documenting her life for obvious reasons. Most years it seems as though time has flown and little has changed. Creating the album for 2014 however has been quite a different experience. I am always telling people (anyone who will listen) how amazing Mojo is and how well she is developing and how much she is achieving but the enormity of what she has achieved in just one year has really astonished me this year.

We as a family have been quite busy achieving our own communal goals. Growing a human - from scratch! Building an extra room in our home and all the various moving out and packing up that involved. Working. Planning. Sweating the small stuff. All the while quietly in the background Mojo has been growing, learning, achieving, developing in her casual, extraordinary way. How is it only a year ago that she couldn't use Makaton other than hand-over-hand when now she is teaching most of her therapists (and us) new words everyday. The fact that she can now communicate so effectively with us and with others is such a HUGE deal and it has crept up on me. Because Mojo's development is so gradual and in small, determined, steps the magnitude of it is sometimes lost among the chaos of daily life. Until you sit down and absorb a years worth of photographic evidence.

POINTY FINGER!!!!

This month Mojo is going to be starting Nursery.

NURSERY, on her own, three days a week. Every professional we meet describes her as bright. Clever. Sociable. My personal favourite came for our very beloved Portage worker who's amazing tutorage Mojo graduated from in December. She said in her handover document to the nursery that it is very easy to underestimate Mojo but don't be fooled as she is MUCH more capable than people expect. I can even include myself in that statement.

Look mum two hands

We had just two hospital admissions last year (and both back in March). Don't get me wrong we had our fair share of close calls and periods of observation in A&E. All told however it demonstrates that we are getting better at managing the medical side of our journey. We spend so much timing beating ourselves up about how we cope with Mojo's medical needs that it would never occur to me to pat ourselves on the back for just how amazing it is that despite the fact that she was ill from February to July almost consistently we only spent 10 days in hospital.

Mojos latest report from Small Steps (an amazing charitable organisation which runs conductive education sessions for Children with physical needs) told us in no uncertain terms how proud we should be of how much she had achieved in the space of a term. Weight bearing through both her arms and legs. Tolerating rolling, standing, kneeling with less resistance every week. I'm painfully aware, particularly given the experience of watching a conventional child develop with graceful ease that we currently have the pleasure of with baby Ce, that it's hard to imagine quite how much effort goes into achieving such apparently straightforward things but trust me it's monumental. The tenacity, patience and bloody hard graft that Mojo displays in the course of one year is more than I will need in a lifetime.



At a tea party just like the other kids!

Right now I could explode with pride and happiness. I won't though, I'll just get back to my photo album construction and praying quietly for 2015 to live up to the joys, laughs and awesome achievements of 2014.





Multi purpose wash baskets!

An Afterthought on Portage Graduation:

Just before Christmas I saw a look on a strangers face that was so familiar it gave me goosebumps. We were at one of the three thousand Christmas parties Mojo was invited to. The look I saw at the party was on the face of a new parent. His son was at a Portage social for, what I presume was, the first time as he looked to be only a few months old. The look was one of awe. I could see so clearly on his face that he was getting that wave of  *oh my God we're not alone! There is a community here and it is amazing and loving and fun and safe* The father had such a huge dewey eyed smile. I remember the first time I felt it. It's always the group singing that does it and add Christmas songs into the mix and you're looking a very potent emotive experience. I wanted to give him a hug and say 'I know isn't it AMAZING, You're going to be looked after' (I didn't). It seemed such an appropriate end to our Portage experience, especially given that we have come so vary far from those early experiences ourselves. As with so many of the people who have worked closely with Mojo it is impossible to find the right words to thank them enough for what they have done and continue to do. So you just say thank you give them a hug and know very well that you will always be grateful for the things they have done for your family.

OH MY GOD!!!! Holding herself up on a MOVING ride. I'm holding my heart to stop it exploding!

It's beginning to look a lot like chaos!

For the past few nights just as I'm falling to sleep I've had that horrible stomach churning, unsettled feeling. The one that is a mixture of nausea, fear, anxiety and even excitement. I was trying to identify why it's happening, looking for a specific thing to blame it on. I started running through the list of things I was worrying about. It was when I'd managed to mentally list about a dozen things including, impending Botox (Mojo not me!!), impending Gastro Surgery, baby's first immunisations and development checks, 3rd birthday plans, nursery induction and even Christmas shopping that I realised that perhaps, just perhaps it was a culmination of all of the above!

So first things first, I've discovered a silver lining that I never knew existed which is always nice. When one is dealing with a conventional baby there is a genuinely mind blowing amount of advice, methods, routines, plans and books to follow. I remember being so envious of my friend who had a book called 'what to expect in the first year'. I felt hard done by that with Mojo nobody could tell me what to expect in the coming days, let alone the coming year. Imagine having a book which will tell you what to expect and what to do and how to get it right I thought. Lucky bloody 'normal' mums. Well, not so much it turns out. In fact it turns out that being able to disregard all baby advice and competitive parenting because your baby is not expected to behave conventionally is very liberating and in fact not having a book to beat myself up with first time around was a huge blessing in disguise. Admittedly it was a very convincing disguise but now with hindsight and a conventional baby on my knee I can see it clearly. So it is with huge self discipline that I am attempting to shelve the books and do exactly what we did the first time around and baby number two like a tiny unpredictable human without worrying too much about 'what to expect'. (I reserve the right to ignore this high horse approach when I'm googling 'baby cross eyed normal?' at 3am)

Adjusting to life with newborn aside we've had a month of anti-climactic stress and diary juggling caused primarily by Mojo not being well enough to have her scheduled surgery this month. We spent three hours waiting to 'check in' to hospital only to be told by the anaesthetist that Mojo's cold would mean that if he had to put her under he would 'almost certainly put her in intensive care'. Urmmm yeah, okay, lets not then!!! So after lots of preparing both her and I for it we now have to wait until days before her 3rd birthday for the rescheduled operation. In the meantime tomorrow brings her first Botox injection to try and help her hip movement. The side effects list includes a 'flu like' illness. Excuse me while I bang my head repeatedly against this wall. Can one buy shares in Calpol??

It was Children in Need last week and once again I found it very surreal to find myself associating so closely with the appeal films, you know the ones that make you cry because of how hard life must be for these children and their parents. Despite directly benefitting from fabulous projects which are funded by the charity I find it very difficult to reconcile her as a 'disadvantaged child'. Not least because we have done so much fun stuff amidst all the medical chaos. Seaside mini breaks, parties, Halloween fun, swimming and cycling with Wheels for Wellbeing. As ever no amount of illness or procedures can dampen her mood or compromise her beaming smile.

Wheels for Wellbeing!

There's a lot going on. my memory is shot and despite baby being an amazing sleeper the sleep deprivation of night feeding does take it's toll. As always at this time of year the weeks seem to be flying by and the to-do list of jobs that I usually enjoy such as Christmas shopping or birthday cake baking feel a bit heavy. That's the best word for it, heavy. Hopefully once the operations and procedures are completed and we can focus on the nice elements of December things will seem easier.

Have you ever read a more melodramatic excuse for not bothering with Christmas cards this year! Honestly, I don't know what I do with my time.







 

Strawberry fun!

Two's Company

I thought it would be more confusing. I thought I'd feel divided, halved, conflicted. I couldn't imagine how it would feel loving anyone in the same way I love Mojo.

I thought Mojo would be confused, jealous, even cross. How could a child with a reasonably unquantifiable understanding of what was happening learn to share the limelight she has been bathed in for almost three years. How would she cope with sharing me, sharing her daddy, sharing her home.

When will I learn that Mojo simply hasn't read the manual about how she is 'supposed' to behave or react.

Baby sister's arrival was lengthy, exhausting and culminated in a short stay for her in special care. The irony of this was not lost on me even in my drug addled exhausted state. They must be mistaken as this was my 'healthy' baby, this baby wasn't destined for special care. It was hours before I got to meet her, to hold her and to feed her. The flood of maternal love, as warming as stepping into a hot bath and as exhilarating as any other human experience, overwhelmed me with its force.

The feeling of meeting my second daughter was to be one of two overwhelming meetings that day. Introducing my daughters to each other was indescribably beautiful.

My girls. Together.

When Mojo was born and throughout her first year every 'first' that she achieved was a moment that I captured in my heart, banked and treasured. I knew that no matter what happened nobody could take any of these memories from me. We accepted each first as a potential last and only.

Never did I ever dream that one day we would be able to experience her first meeting her baby sister. Nor could I have imagined the instant love and adoration that I would see between them. And yet. Peering into the cot with an equal measure of excitement and amusement (Mojo found baby's wriggling hilarious, like she was a moving dolly!) there she was. No longer my baby, my grown up girl. Memory banked firmly in my heart.

Naturally now, I battle my internal pessimist thinking it must all be too good to be true, there must be disaster looming around the corner. So when one week into life with two Imogen became ill, stopped sleeping and drinking and took to heartbreaking whimpering in pain and discomfort, it was almost like I'd willed my fears into reality. As it transpired however we coped. We had to call in the reinforcements (eternal thanks to both Mojo's grandmothers who took turns staying up all night soothing her) but we coped.

Now we are fully recovered the ever familiar mantra of one day at a time is very much back in play. Not in the same way as it was when life felt precarious but rather the way that I imagine all new parents feel no matter what the needs of their children!

The future, both short and long term feels a bit daunting. We have gastro tube surgery scheduled in a matter of weeks and the ball is rolling for our EHCP (care plan for schooling) meanwhile I am very much aware that babies don't sleep for 8 hours of each day for long!! Repeat mantra.

Diagnosis Day #3

Sometimes 2nd August 2011 feels like yesterday sometimes it feels like a million years ago. Either way the memories and emotions it evokes are the same. Staring at the grain of the wood of the table on which I laid my head after putting the phone down. Before the immediate shock wore off, before the crying began, before, really, the magnitude of the conversation had hit, before I'd even called Bill just those few seconds of blank shock. Those few life-changing seconds of comprehension. That's mostly what I remember.

Today however is not about that. Or at least it's not about rehashing and reliving that. Today it's about recognising how far we have come. It is remarkably easy to forget, to become focussed on the problems of daily life and the barriers Mojo faces. Reminding myself of what we (like all of the friends we have since met who experienced the same diagnosis meeting) were told about our unborn baby, brings into very sharp focus quite how truly completely and spectacularly awesome our little girl is.

So in the spirit of a picture saying a thousand words (believe me I could!) here is my nod to this year's diagnosis anniversary using the words of the consultant in that first diagnosis meeting.

"It is very unlikely that your baby will survive to term"




Beginning to believe baby has not received memo!

"If it does it will have little or no quality of life"

Hanging with my daddy. Quality.

"It is unlikely your baby would be able to perform basic functions such as breathing and swallowing"

Breathing while I swallow this enormous ice cream

....and this pasty!

"The front of the brain is where we store our personality and your baby's fore brain is completely fused seriously damaging all the faculties we store there"

When I grow up I want to be a princess.....

...OR a ukulele playing Buzzy Bee?

"Any kind of normal life cannot be expected"

Is it normal to beat mummy at bowling?

or play with my farm?



or wave on the waves?

and finally, as I have to say I really did like our consultant and he wasn't being intentionally completely wrong....

"Of course there are sometimes miracles..."

 

Thankfully for us the only element of the whole meeting which turned out to be accurate was the bit about miracles. Our amazing girl. Our miracle.

Bad Days, Good Days and Pregnancy Haze

The delay in updating the blog over the summer is simple. There have barely been two days together when life has been consistent enough to allow me to compose any sentient thoughts.



The Bad (days)

It's been a difficult year so far. It's fair to say that since March Mojo has been ill on and off. General consensus is that she has simply picked up every available virus from upper respiratory to chest infections to gastroenteritis you name it she's had it. When she is ill life is exhausting, it is completely impossible not to fear the worst every time you sit in A&E. The Ng tube has been in and out like a kind of depressing hokey cokey. The pattern has generally been 10 days ill 5 days well. Despite it's repetition all year every time we get to day five you think, this is it, this is her coming out the other side of this hideous run of spring viral infections. Then when the next one arrives it is twice as depressing as the previous one.

The Bad (nights)

So why therefore has the blog not been filled with epic whinging and self-pitying lamentations I hear you ask. Well because on those days when she is well and happy she is SO well and happy that it's impossible to feel sorry for yourself. She has holidayed, played, developed, laughed and lifted our spirits immeasurably with each good day.

Posts that have been started and never completed as my mood changed include, the dawning of visible disability with the arrival of our wheelchair and our increased use of the Ng out and about. The impact that has on people's approach to Mojo and the realisation that accessibility, which I've always assumed in this day and age would be a given, really is not. An especially wallowing post about the number of A&E's we have seen this year. A post about how Mojo's achievements in signing and speech & language are so spectacular that it borders on embarrassing when we meet with the therapist and have to amend her targets monthly!

The Good 

So aside from the vacillating stress levels relating to Mojo's daily life has been the small matter of an ever advancing pregnancy. There has barely been time to think about baby other than at a strictly practical level. No, I can't get the wheelchair in or out of the car. Yes, my breathing is very compromised thanks to baby being breech and wedging her head firmly into my ribcage. Yes, I am ready for bed at 5pm. No, Mojo is not. Even recently..no, I cannot stay on my feet when I stumble carrying both my babies and yes, 17 stiches in my knee hurt. Bit of a wake up call that one. Do not even get me started on the current heat wave, oh England with your quirky unpredictable weather, how I have raged at you.

I have adjusted to my default position of exhausted tightrope walking while balancing three thousand

The Good

things on my back. I can't pretend it's been much fun. My poor husband who struggles more than I do to stay positive on the dark days (he would be the first to admit he is easily tripped into his pit of despair) has been the one holding us all up on the tightrope. It makes for quite a surreal reality but one in which I am daily grateful that I married him as I firmly believe there are many who wouldn't be able to cope with such unrelenting demands.


Then, as always, just at the point when I'm feeling the most badly done to, someone comes along and says something which pulls me swiftly from self-pity back to a crystal clear appreciation of what I have and how grateful I should be for it. On this occasion it was a conversation with my best friend who spent the afternoon with mojo and I this week and allowed me to talk her ear off about all my woes. We found ourselves talking about why pregnancy was so much more physically demanding this time around despite the emotional side being so completely different. She said, 'I remember when you were this pregnant last time your only wish was that you would get to meet your baby even if it was only for a few minutes you wanted to know her in the world' It was a simple shared memory intended to make me feel better about how crappy I was feeling. It almost took my breath away with the rawness of remembering how it felt to have that as my only wish. For that to be all I dared hope for. Looking at the smiling, babbling little girl sitting on the sofa laughing at the telly and remembering that I wasn't supposed to get to keep her, while feeling her little sister kicking madly knowing that I was allowed to expect to keep this baby, took away any physical aches, stresses and exhaustion and replaced them with the overwhelming gratitude and joy that used to be how I greeted every day. What in the name of all that is holy do I have to complain about. Me, my girls and their amazing daddy are so very happy. Yes there are bad days, bad weeks and sometimes bad seasons but no amount of bad can take away the good that we have even on the days when you have to look really bloody hard for it.

A Crisis About Confidence

We have entered unknown territory. This week was the second time we found ourselves sitting outside a sonographer's room awaiting a 20 week scan. The first time it had been exciting, we were focussed entirely on the finding out whether our baby was a boy or a girl. That is what the 20 week scan is for, right? Talk about being unprepared. Instead that scan began the chain of life-changing events and diagnoses which brought us our miraculous Mojo. Needless to say the experience second time around was somewhat different. Braced is probably the best word. We sat, braced and quiet as the time ticked by until our appointment.

Fortunately our experience second time around was completely different. 'Normal' isn't a word I like to use in relation to people, primarily because there is such a negative connotation to being abnormal. I generally use conventional because being unconventional sounds much cooler, much more like a decision we've taken not to follow the crowd. Saying all of that there was, of course, something remarkably surreal about hearing the word 'normal' in relation to our new baby. Sitting squarely along the 50th centile for all her sizes and weight. Very, very, conventional.

The relief and happiness I initially felt was accompanied by a really complicated mix of emotions that I wasn't really expecting. I was reminded all over again of how random Mojo's condition is. Ultimately we now know that there is no specific genetic reason for her HPE, she could have had a very different life. By being relieved that our younger daughter isn't, as far as we know, going to have any of the fundamental and life limiting difficulties that our elder daughter has does that betray Mojo? Is it wrong to be happy about it?

It is very much unknown territory to feel able to prepare for a new baby. We never did during the first pregnancy. We couldn't. We prepared for a new kind of life but it was one without the baby I was carrying. This time we can prepare, decorate, have entire rooms built on our house! Last time we didn't do NCT or anti-natal classes, as one doctor said to us 'It may be very painful to hear other mums complaining about their healthy pregnancy experiences'. He was right of course.

How do we deal with a conventional baby. I understand that they move around of their own accord and don't stay where you left them, that they answer back and that they get really heavy!! Will we be unimpressed by their motor skill achievements. So you can walk...well you would be able to walk because all of your brain works!

Ultimately I know that none of this will be an issue because in the same way as I worried incessantly about how we would cope with a non-conventional baby, we will cope with a conventional one in the same way. One day at a time. I also know that the one person who will struggle the least with the new addition is Mojo who will love her little sister like no baby has ever been loved (in her distinctive, slightly bite-y style).

I suppose every mother expecting her second child has days when she cannot imagine loving another child as much as she loves the one she already has, while simultaneously knowing that she just will. My case just comes with added conflicted feelings.

As for Mojo the last couple of months have been really hard work, she has bounced from one viral infection to another, piling them on top of each other and dallying dangerously with dehydration every other day. Surgery is now on the cards to give her a g-tube which will allow us to keep her hydrated during the periods of illness and hopefully limit hospital admissions. I hate the idea of her having a permanent hole in her little tummy but know deep down that it's for the best. The combination of surgery and pregnancy hormones will be a fun one. We meet with the surgical team next month so time will tell.

In the mean time after all this drama, it's back to our unconventional normal for a while thankfully!


Easter Egg Hunting!