Reminders of “Come What May”

Yet again Facebook had thrown up another one of those “On This Day” pictures. Yet again my emotions were mixed.

The now year old photo is a beautiful one. A photograph capturing a lovely moment between Father and Son. The Photograph was taken by myself and at the time exact time I snapped the shot I was truly all wrapped up in the emotion of the moment.

It is just that looking back at the photo it reminds me why this photo was taken, not ‘Why did i take a beautiful photo next to a beautiful fountain’ I mean it reminds me why we were even there?

The reality is that this photograph was taken in Regents Park. We had decided to take some time out and have a walk around the park to try to clear our heads after a very long and stressful hospital appointment. The appointment was at The Royal Orthopaedic Hospital London. We were there due to a newly discovered ‘problem’ had shown up via Owen’s annual hip x-ray.

The majority of children with Cerebral Palsy develop spasticity, in which their muscles tighten involuntarily, causing stiffness. Spasticity in the muscles around the hip places abnormal forces on the hip-joint, eventually causing the hip to dislocate from the socket. It is therefore very common for children with Cerebral Palsy to develop hip disorders over time.

Owen’s left hip wasn’t fully dislocated but had moved slightly out of the joint. This is  called “Hip Subluxation” also called a “Partial Dislocation”. 20171026_164604410829793.pngAfter a day of waiting for a more senior consultant to see us it was decided Botox, or a lesser operation to release the tendons would not be beneficial. Major surgery would most likely be needed. Owen was not in pain and at the time was not affecting his quality of life so they and we agreed to leave it for now as the hip was only slightly “Out” and it may well just stay in the same, slightly “Out” position. They said major surgery is on the cards but not at that present time.

In ambulatory children, hip dislocation can be a detriment to walking. In non-ambulatory children, sitting balance, skin breakdown and diaperring can be hindered by hip dislocation.
We have towards the end of this current year noticed a difference in Owen regarding his tightness in his leg muscles, his legs are crossing more and he just doesn’t look symmetrical. We are really fearful what our next upcoming ‘hip’ appointment will reveal. We are trying to prepare ourselves for the likely fact that Owen will need major surgery to correct this, But I am currently also not trying to think too much about it as it sends me in a complete panic.20171026_1650381087182585.png

This year of waiting, hoping and seeing has been hard. Owen is non verbal and we worry we will miss him giving us clue that he is in pain. Every time he has a period of unexplained crying or seems in pain I fear it is his hips. Recently he has quite a lot of illnesses, At the start of them I never really know what they are about, but I am always on full alert whether he is in pain due to his hips or whether his bowel malrotation has re-appeared (despite having surgery to fix it). It is strangely a relief that it was the beginnings of another familiar chest infection that made him so upset. The feeling of relief is short-lived as you then start to panic that this chest infection will be THE bad one. Despite Owen being out of school more than in school this last term with sickness bugs, chest infections and feeding issues we do feel extremely lucky that all this was treatable at home, especially after hearing some recent really sad news. We are always forever thankful and never take anything for granted.20171026_164919160483415.pngHaving said that the thought of having another hospital stay is playing heavily on my mind. It is a fear that never goes away. Living with the thought that at any moment for many different reasons you child could end up in hospital means you can never fully be free.

I realise to some this blog post is almost a year too late, I have been sitting on my worries regarding his hips for a year now. I sometimes, when I have no answers find it is easier just to keep your worries to yourself. I almost feel like by not telling people I am protecting them. The fact I may need support and comfort does not come into it. My whole focus is Owen and trying to do the best for him.  I hope what ever the outcome of the very near next appointment, it will be what is best for Owen. I fear the truth of what that may mean for him, But I know whatever it maybe I will be by his side every step of the way.  “Come What May”

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One thought on “Reminders of “Come What May”

  1. My daughter also has CP, and also has a left hip subluxation. She’s 15 and fortunately verbal (very!) so can tell us when it’s painful. She has actually been better recently – she has botox in her hip flexor & we are waiting for her to be admitted for an intrathecal baclofen pump.
    Good luck with the appointment xx

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