Friday, 30 October 2015

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.

Monday, 5 October 2015

School Belle


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.