Hips don't lie (straight)

I have to confess I've had a dip recently, a period during which the positives have been that little bit harder to find. The unrelenting assault on Mojo's respiratory system has made me angry and it seems as if the smell of vanilla vomit is on everything I touch. Then there's our latest curve ball.

Our most recent hospital visit was routine. There is something comforting about the word routine that means that when you receive unexpected news it feels somehow worse. On this occasion it was a routine orthopaedic clinic. Mojo sees the orthopaedic surgery team because of her hip. Its one of those things that I've previously not given a lot of thought to because on the long list of things I should worry about its always been quite far down. Mojo's slightly misaligned right hip has never caused her any pain and the 'windswept' look it gives her body (which essentially means that she kinks left at the hips and her legs both appear to lean to the left) has never been anything other than a physio consideration that one of her legs is slightly longer than the other. Given that she was able to stand supported by a frame or gaiters and there is no reasonable expectation that she will ever walk I've dismissed this as the clinic least likely to present major problems. As it transpires, I was wrong.

To set the scene a little, because I thought this would be a quick nothing to report type clinic I had not worried too much about the fact that Mojo was not at her best. She was having a bad day for both congestion and vomiting and, whilst not unusal, meant that she was not in the mood for doctors.  Additionally, baby Ce who is dragged along to all these clinics was also tired and teething. As we went into the room there were far more people there than usual. Some of whom I had been expecting, some I had not. There were about eight of us in total (not including the children). After a brief intro to who was who in the room, which I did not hear in full as Mojo had started to scream, we began. The meeting started with a standard how are things, how have you been, what have you observed in her movements etc. All of this was conducted to a chorus of screaming and crying from both girls. Mojo, as she knew that an examination was coming, Ce, because she was, well, 13 months old and just having a scream.

An examination followed where the surgeon tried to feel how well the muscles and joints are working and stretching. Imagine if you will a child with already very high tone (very stiff muscles) in a savage rage, clenching every inch of her body and screaming as though she were being tortured and you have some indication of how accurate this assessment of her hip was. Meantime over the other side of the room Ce is throwing toys and screaming for Mama.

The last five minutes of the meeting are a bit of a blur as post examination the consultant says something along the lines of  'I have to tell you I am worried about her hip, I think it's shifting further out of the socket and I think surgery is likely at this stage' *Mojo is pulling my hair and screaming in my ear* 'We need another x-ray but I want you to know that I think it will show that it has worsened' There is a brief discussion above my head about whether an accurate x ray could be taken today. The lovely Physios argue that it couldn't be expected to be accurate given her level of distress and we are dismissed until such a time as an x-ray can be done.

I feel like this meeting has happened around me rather than with me. So many opinions and so much information, all the while all I wanted to do is get them all to shut up for just a minute so I can comfort my babies and actually engage with and contribute to the conversation around me. There is no time for that.

As we are about to leave I'm aware that within minutes of leaving the room and calming the girls I am going to re-focus and want to know significantly more information than I have been provided with. I go over to the computer where the consultant is now entering notes and over the volume of screaming and sub-conversations going on, ask her what exactly the surgery involves, what would it do. She briefly tells me that they will saw sections from both Mojo's thigh bones and reposition both her hips and she will be in a waist to ankle body cast for a few months but don't worry for now, we will see you again once we have the latest x-ray, bye. We are swept out of the room, I have Mojo and a pile of coats in one arm and the buggy on the other. The screaming continues only this time I want to join in.

As the fresh air hits me outside I feel confused and shocked and overwhelmingly sad. This was not in the plan, where did this come from? More surgery, a body cast!! How much pain will she be in? For how long? How will we operate? How will we get her in and out of the car? Will she be able to go to school? How will toileting work? Mostly I just feel angry at the way the whole clinic was managed! I shouldn't be leaving with so many unanswered questions.

So we are currently waiting for the next X-ray. In the meantime I've investigated alternatives (more Botox, different medicines, intensive Physio) and I once again feel in control of how this will pan out.

School Belle

'OH MY GOD, WHAT THE....'

Husband is doing bath/bed for baby and his distress is sincere and alarming. A familiar adrenaline rush drives me rapidly up the stairs to find him kneeling over baby running his finger over a huge purple and black bruise on her abdomen. It looked awful; internal bleeding? I looked at her incongruous smiling face and just as we started to make a plan to get her to A&E it occurred to me. Blueberries. She had eaten blueberries after her dinner. Sure enough the inside of her vest revealed a small supply of very squished blueberries. The internal bruising washed off. Order is restored. For the record blueberries make a very convincing bruise stain!

The thing that struck me was that I wasn't surprised, even though this was my medically conventional baby. Simply because it's autumn and autumn brings with it a really tangible sense of foreboding. The season change brings fresh waves of germs and autumn inevitably leads to winter. I know I say this a lot but we hate winter. The seasonal transition has already begun in our house. The vaporisers are out and the medicine cabinet (and medicine cupboard and medicine boxes scatted all over the house) is fully stocked. Secretions are our biggest nemesis. Imogen's upper respiratory system works against her all viciously, over-producing secretions and then not managing them which gives her a semi-permanent rattle on her chest, a constant runny nose and making sleep exceptionally difficult. Its amazing how over the summer you do forget how bad it is until it turns up again and you have spent three nights "sleeping" on the floor by her bed to turn her over when she screams and stop her from drowning in her own sick (caused by, guess what, secretions).

The other reason I'm so aware of the change this year is that things generally have been so completely wonderful for the past couple of months. We've had so much fun family time, so many developmental progressions and then of course there has been school.

School. For the past few weeks you have not been able to open social media without being met with a steady stream of tiny children in oversized school uniforms and exceptionally shiney shoes standing proudly in front of doors usually with the kind of smile that comes after twenty minutes of coaxing. Lets be honest we should all make the most of it because there is probably no other day of their entire school careers when there will be enough enthusiasm and preparedness to allow for a 20 minute pre-school photo shoot but I digress. I've always loved seeing these pictures I love the oversized school bags and the beaming faces.

In terms of milestones this is a big 'un and one which has been on my mind since the idea of Imogen being able to go to school was first mentioned to us. I can still remember what it felt like for the dream of school to fill me with sorrow because it wasn't Imogen's path (Bring it on!). So seeing her in a frankly enormous uniform with her very own school bag smiling proudly like the thousands of other children across the country was to put it mildly, a bit overwhelming. On her first day I dropped her off and in the car on the way home I felt lost. I spent the whole journey home thinking about all the things I hadn't mentioned to them. What if they can't understand her? Being non-verbal with a very individual often inconsistent interpretation of makaton signing means she is very easy to misunderstand and it is so very easy to underestimate her.

At the end of her first week she appeared from her classroom beaming and with some careful prompting from her teacher was able to tell me what she had done, she was even able to tell me the story in the book she had read at lunch time. She was so happy and proud and grown up and happy. So happy. So very happy. I waited until we got to the car to cry.

Respite is never a word I've been comfortable with, I wasn't sure it really existed, actual respite. There are very few people who we can leave Imogen with because of her needs and (without for a moment wishing to seem ungrateful) even those people generally require explicit instructions. Leaving her with someone for a few hours requires a significant amount of planning. I have always been responsible for what Imogen does with her day, I've supervised her diary, I've juggled her appointments, scheduled her feeds, managed her medication, I've translated her signing, I've managed her every need. Not single handedly of course, Daddy is amazing but ultimately, day to day, because I'm at home, I've been in charge. Now that we are in a school environment things have shifted. From 9am - 3.30pm I'm not in charge, in fact I don't even know what she's doing? At lunch time I have flashes of 'God I hope they don't forget to give her her medication' which is ridiculous but I'm just not used to relinquishing control. I get notes at the end of each day telling me which therapies she has had during the day. I no longer spend my week to-ing and fro-ing from St Georges. It's surreal. It turns out respite is quite different, respite is completely letting go just for a while. For a few hours, letting go and trusting that someone that I don't know IS able to care for Imogen and moreover is able help her to flourish.

For me underneath all the daily joys that school has brought with it, is the long standing relationship we have with the statistics, the initial expectations and prognosis. Here she is our school girl, looking up at her potential filled future. We are, as ever, in awe by her side.

Manual - Change - Reality

Handling.

Handling change, manual handling and handling reality all of which have been at the forefront of my mind for the past couple of weeks.

At a recent hospital appointment when Mojo's weight was taken we learnt that it had, at long last, reached the dizzy heights of the bottom of the spectrum. This means her little biro dot now sits proudly on the bottom of the range of 'normal' for her age. It feels weirdly secure, as though we have pulled ourselves up to the cliff edge after years of clinging on the edge by our fingernails. We're still on the edge of course and it's precarious and requires care and attention but we are, for now, facing the right direction.

Weight is good, weight means health, growth, development. Weight however, as it turns out, is quite heavy! Now I have a confession. I'm a wimp. I'm a tough nut emotionally these days but ask me to carry shopping or lift...well pretty much anything heavier than a cup of tea, and I complain. It's a long standing joke. When I was a Girl Guide my dad put my overnight camping backpack on me and I fell over backwards like a cartoon. A gym instructor once told me he'd never seen anyone as unbendy or as weak in the arms as me. I think he was genuinely impressed that I was surviving in the real world!!

I feel it when I go to move her from sofa to chair, when I carry her upstairs or lift her out of the bath. I feel her getting heavier. It is slow and gradual but transitional. We are moving from a time when I can carry her like a heavy baby to a time when we, and me probably sooner than most, are reliant on the wheelchair, hoists and winches. This will bring restrictions, restrictions on where we can go what we can do and where we can stay. It's a slow burning niggle at the back of my mind (and the bottom of my spine!).

With an eye to the future I have, over the years, signed up for various newsletters of companies which develop equipment and mobility aids etc. There is some amazing stuff out there to make life easier for our girl. Many of these companies offer great advice and community blogs as a resource for families.

One of these articles has sat unopened at the top of my inbox for the past few days. I read the subject line initially without thinking too much about it. But then, because it was there at the top of the pile every time I opened my computer, I kept thinking about it. It was an article aimed at helping people plan for the future and it was entitled 'What if we outlive our children?' and it sat there bold and unapologetic daring me to read it for days until I decided not to. I'm sure the article would have been uplifting in the end, exploring both options, who will take care of our children if we DON'T outlive them and how will we cope if and when we DO outlive them. I just wasn't in the right frame of mind for that rock and hard place dilemma this week.

Then, on the other side of the world a beautiful six year old girl died suddenly and our community of parents was rocked, once again, by the tragic loss of a child with HPE and the unavoidable reality check that follows. The little girl was a twin and her mother posted a picture a few days later of her equally beautiful twin sister dressed in a party frock on the way to her twin sister's 'going away' party. I wept for about 20 minutes for two children I do not know and their parents. I've not used their names intentionally as it's not my place to invade their privacy (and I sincerely hope my mentioning it doesn't), I don't know their mum, even online, but I've thought about her SO much and I've prayed so hard for her girls.

For us the 3rd August came and went this year. Four years since our baby's diagnosis landed in our lives. I found this year that it wasn't the initial meeting that I remembered, it was the follow up with an American locum doctor at Hammersmith which took place a few days later. This doctor had met other children with HPE before so we were sent to talk to her. After we looked at the MRI and talked about the likely outcomes she said 'do you have any questions' and I asked her if our baby would be able to smile. I don't know why that was what I wanted to know, but it was. Would I know if my baby was happy? As I scrolled through our recent holiday pictures that question came back to me. Would I know if she was happy....what do you think?

So as ever it is this girl and her smile that make handling possible. Handling emotionally, logistically and yes, even manually!!

All change please, all change.

What just happened?

I was braced for a fight, I had logged all the communications, I'd read up on legalities and getting what you want from an EHCP (Education Health Care Plan). I was trudging the anecdotal evidence on blogs and websites. Then the phone rang.

'Just a quick call to let you know that your draft EHCP has been sent to the school of your choice and they are happy to take her full time from September.'

I'm confident that my shock was evident.

I mean it's brilliant, we are thrilled. It's exactly where we wanted her to go. It's a specialist school which we loved when we visited, it offers so much which will meet Mojo's needs. It's bright and colourful and I'm sure this isn't on the list of Ofsted requirements but it has the loveliest 'vibe'.


After first day of nursery

But to find out in mid-July has meant that our existing provision, and I mean ALL of our existing provision is changing. I can practically feel the carpet being whipped from under us and if you'll forgive the stretching of the metaphor, the fact that it's being replaced by an equally comfortable, bigger carpet is, at present, little consolation.

With less than a week's notice Mojo attended her final Small Steps before 'graduating'. Small Steps has been such a source of support for us, firstly from a practical perspective with the classes giving us the knowledge and skill to best facilitate Imogen's physical development. Secondly and as importantly from an emotional perspective. We have felt like part of a family and part of something very special. We have attended for almost two academic years and all of us have changed so much in that time. We will miss the sessions and the people very much.

Then there's nursery. Just as she's found her swing and fully settled we have to be on our way to the next setting. I was very happy that the when I picked her up on her last day she had had her best day yet, laughing, talking playing and generally having a ball. It didn't, however, help my feeling of whiplash at the speed of this transition. Nursery has been so fabulous, Imogen has progressed so much with her confidence, her verbalising and developed other new skills like identifying letters and words, significantly nursery has given us both our first independence from each other which stirs conflicting emotions but I know how vital it is for her, that we both be able to let go!

After last day of nursery!

Moving to a specialist school means all our therapists change. We will no longer see our amazing Physio who has been with us since Imogen turned one. We will have new occupational therapists and new speech and language therapists. In fact you name it, it's changing. I'm nervous about change. Change brings uncertainty and uncertainty is well...stressful. I try and limit the number of what ifs floating around in my head at any one time but all this change has really opened the flood gates for what-if related spirals.

As if all this change isn't enough, Daddy has also changed his setting which involved a little less form filling, box checking and waiting and slightly more interviews and long discussions. The whole process reminded me of the pressures he is under as 'bread winner' I get along with my days working harder than I ever did as a paid employee not really thinking about who will pay the bills (excuse pun!). Watching him dissect what a new job would mean for us as a team and how it would affect both our day to day logistics and our finances made me realise quite how much he has on his plate. I am deeply grateful to be married to someone who would worry quite so much about how his schedule will impact on his ability to cuddle his girls and make me a brew in the morning. Gosh I do so love him.

So for now we contend with our new morning routine (turns out making my own tea in the morning is a burden I can bear for the good of the team!) and we enter our limbo summer between old and new and we sit back and once again marvel at how grown up our girl is, and how accomplished and bright and spectacular she is.



Don't know how she does it?

It's one of the things that is said most often to me. By family, by friends, by people we meet out and about and get talking to...

'I don't know how you do it'
'I don't know how you cope'

Within the community of parents of children with complex needs the answer to the question is usually very simple. You have no choice, you do it, you get out of bed in the morning and you cope and eventually you're epic hard work becomes routine and therefore looks 'easy'.

My answer to this is a bit different. While I totally accept that the having no choice aspect is very true (certainly in the beginning), for me a far more significant factor is the team we surround ourselves with. In this instance I don't mean the professionals, the doctors, the therapists, the teachers, all of whom are without doubt making it possible for us to cope. I'm talking about the 'normal' people in our life. The people, in most cases, without any experience of disability to speak of.

We cope because our family embraced Mojo long before she was born. They adore her. They treat her just like the other children in the family. They meet her where she is at, whether that is physically contorting to ensure she is included or simply facilitating family time which is accessible without being contrived. We cope because when we wobble they are there, coping for us, coping with us.

We cope because our friends take Mojo in their stride. I don't mean that they 'accept' her or even that they include her because of course they should. What I mean is that they do so without awkwardness or fear in their eyes. They ask questions unapologetically about how to move her or help her. They talk to her at an age appropriate level and, believe me, even some professionals struggle to do that with Imogen. They don't bat an eyelid about sitting with her so we can have a break. They unflinchingly pass the sick bucket when she once again throws up her feed (in fairness that wasn't anything special that particular week but that's a whole other story!!).

So usually the answer to the friend who asks how we cope is, we cope because of you.

'Like a room without a roof'

My husband and I have very strict rules about speaking too soon. You know the type of thing 'didn't they go to sleep well tonight' 'she's not been sick at all today' 'we've not been to A&E for ages' and so on. String all three together and you can pretty much guarantee yourself a wide awake, vomiting, A&E bound child.

Therefore it is one eye to the sky for falling pianos that I say quietly....things right now are great. Like really, really good.

It is one of the unspoken benefits of the lows being so low is that when the highs come they are exceptionally high and you make the effort to stop and enjoy the view.

There is nothing exceptional about why things are so good. Mojo's health has improved slightly and the vomiting has subsided at least to every other day rather than multiple times a day. This gives us a bit more freedom to be out doing things and having fun without having to take three changes of clothes, sick buckets and old tea towels. It also means that she is enjoying nursery more, learning more, generally being much happier in her new setting. There is nothing more joy inducing after weeks of dropping her off and picking her up from nursery in tears (hers not mine, although on occasions...) to suddenly find her enthusiastically taking her place for circle time without a second look to me. Picking her up covered in paint and smiles at the end of the day, signing away with stories of who she has played with and what she has done is heavenly. Suddenly that long promised feeling of respite is tangible. I can finally revel in the knowledge that our little girl is properly attending nursery like all her friends. She was affectionately described by nursery this week as a drama queen and a flirt....NO idea where she gets any of that from!

So in keeping with our make hay while the sun shines approach we have had some simply awesome family time of late. Days out at ZSL London Zoo for Special Children's Day where Imogen got to meet the amazingly lovely ladies from Singing Hands (akin to meeting One Direction for the signing child!) she had her face painted and chose the route we took around the Zoo. She taught her little sister all the animal signs and ate proper food (or animal biscuits) at our picnic. We have taken part in a community arts project building a giant cardboard tower with boxes and sellotape (search #PeoplesTower it was very cool), a completely inclusive activity where she was just one of the children helping. We've attended birthday parties, ridden the carousel at summer fairs and hosted countless tea parties for the dolls, pandas and assorted soft toys.

On top of all that we as parents have had some time out. Some time to be us as a couple and not just 'The Parents of ' as all our letters arrive to. We celebrated 10 years together with a night at an amazing restaurant and hotel and it felt like a fortnight in the Maldives. Partly because we had time away but also because we left the girls with their grandparents and nothing bad happened, the tube feeding was uneventful, they both slept and they both had a fabulous time and suddenly my worries about how we will ever be able to expect our parents to look after two kids, one with feeding tube and constant vomiting evaporated.

What is even more remarkable is that with all this fun behind us we have so much more to look forward to over the summer. We're headed to Cornwall with a gang of friends for a week, we have tickets for Elves and the Shoemaker ballet and we are even experimenting with a trip abroad at the end of the summer. In amongst all of that there is of course the inevitable weight of pending surgery dates and EHCP chasing to do as well as 'the unexpected' which we have learnt to be constantly expecting. However, our grass right now is lush and green (metaphorical grass that is, our actual garden grass is more untamed and brownish but one thing at a time eh!).

By the way my focus on Mojo for the purposes of this blog is intentional, despite rarely being mentioned her baby sister is in every way loved and cherished equally and has been busy being remarkable during this period too. Her achievements and spirit and personality are all being recorded for her in a diary for when she is older. When I watch them together I feel like my heart could burst with love.

For today I will end on a story which made my year so far that comes from the afternoon of the day my husband and I had away from the girls. We were walking around Nottingham arms around each other just generally being happy to just be in each others company without a to do list. At one stage he leaned in and kissed me, at the same time some teenage lads walked past bantering as is their want. It was a few seconds later that I processed that they had been talking to us. We'd been heckled to 'get a room' I'm not going to lie to you, we might have high-fived.

Aspiration and Aspirations

as·pi·ra·tion

ˌaspəˈrāSH(ə)n/

noun

noun: aspiration; plural noun: aspirations

1. 1.

   a hope or ambition of achieving something.

    

   • the object of one's hope or ambition; a goal.

     
     
2. 2.

   Medicine

   The action or process of drawing breath.
3. The taking of foreign matter into the lungs with the respiratory current.

 

Aspiration. I've been obsessed.

Mojo's ongoing battles with daily vomiting and heavy congestion means that every time she is sick (did I mention this was every day) she is increasingly at risk of aspiration. By that I mean the 'foreign matter' type. Essentially, the (daily) vomiting brings with it coughing and gasping for breath and as she gasps and sniffs the vomit in her nose and throat is taken into her lungs making her cough more and gag more and once she has calmed and we've replaced the fluids, the 'foreign matter' now sitting in her lungs is busy causing further damage by creating more congestion to trigger more vomiting and thus continues the mind blowingly frustrating cycle. I will spare you the details of the multi-specialist process of trying to diagnose and treat the issue other than to say that things did not go, have not gone and don't yet look to be going our way and for each day it goes on the guilt that I have not yet been able to make it better for her increases.

Meanwhile once the sick is cleaned up and the clothes changed (can you get washing powder on prescription?) there is life to be getting on with.

This month has seen our EHC Plan meeting. An EHCP for those of you who don't know is an Education Health Care Plan and it replaces the Statementing system. By all accounts it is a far preferable process and results in more tailored outcomes for the children involved but it is by no means an exact science and is still very new. The aim of the meeting is to establish Imogen's abilities, needs, requirements, aspirations, goals and then discuss what resources she will require to achieve them and then a group of people in an office at Wandsworth Council decide if she is to be allowed those resources and how much money will go into facilitating her education. Then, from what I have read up on and been told anecdotally begins the battle with the council to ensure that we can agree on a suitable package of resources and hours. It's daunting and stressful and downright surreal to begin with. I sat in a room with eight professionals (therapists, nursery teachers, educational psychologist, rep from council etc) and we discussed Imogen and her aspirations.

Don't get me wrong I like the terminology I like that I am being asked to define her aspirations and consider what I want for her but it's such a huge question. What are Mojo's aspirations. If she could talk to us what would she say? What does she want to be able to do? What can we do to help her learn? How would ANY three year old answer those questions? I truly believe that her answers right now would be along the lines of I would like to be a firefighter or maybe a penguin. I would like to be able to fly and I would like to be allowed to chew on people's hair and pull off their glasses whenever I so choose.

I was a little more measured with my actual answers and spoke very honestly. I want her to be happy and I want her to have her enormous potential harnessed and nurtured and I want her to enjoy school and make friends and I don't ever want her physical limitations to be a barrier to her learning or her happiness. We then spent an hour and a half breaking down and examining exactly what we would need to make all of that happen. It was a positive and encouraging meeting and having arrived anxious and defensive I left feeling like everyone there (with my opinion of council rep pending, based on performance) genuinely had Mojo's best interests at heart.

The meeting made me look to the future, something I rarely allow myself to do, there is too much uncertainty and too many what if's to spend too long dwelling on what may be. The version of the future it allowed me to see is one where achieving aspirations is something which we will regularly do. It allowed me to see beyond the sick buckets and the surgery.  It reminded me once again of how far we have come. My brain returns unbidden to the 'no quality of life' meeting which plays in my head all the way home.

So first things first and we will aspire to end the aspiration and then shoulders back, face forward and focus on the aspirations.