So it’s been over 6 months since I updated my blog post from last year and I have finally found some time to sit down and give you all an update on how things are progressing with Mia and what’s been happening.
I am going to start off with covering all the clinical bits and where we are and what’s been going on. Not long after my last post Mia was booked in to have an MRI scan as recommended by GOSH. This I can only describe as one of the worst experiences and stressful days I’ve ever had. Mia had to be sedated and the sedation didn’t work to cut a long story short our local hospital hadn’t been communicated to properly around Mia’s additional needs and things just weren’t in place that should have been so Mia was partially sedated but not enough to go in for the MRI so it didn’t happen and we wasted a whole day at hospital awaiting for this to wear of and it was at this point I had come to the end of my patience, with what I could only describe as a lack of urgency in helping my daughter and a few choice words were exchanged and things then got sorted but I will come back to this point later in this article as my view on things has changed somewhat since this incident.
We went back to the local hospital few weeks later for a second attempt at the MRI and this time it was a success still not a pleasant experience for us or Mia but it had to be done and has been. The results came through relatively quickly and they found that Mia does have excess white matter on the brain which basically means it is underdeveloped for a baby of Mia’s age however what it did confirm was that Mia didn’t have Jouberts syndrome which is a large abnormality of the brain sometimes linked with LCA. So on one side we were happy but on the other what does this excess white matter mean? The consultants basically said it could be just be to do with the fact she cannot see and her Brain is not developing as quick as it should be. At this point we already had an appointment in to see the Neuro disability team linked with the Visual impairment team at GOSH who basically did an assessment on Mia as to where she is with her development and where they would expect a child with a visual Impairment to be and it was agreed she was behind. They then decided to do about 8 specialist different blood tests on Mia which have since come back with no abnormalities. Which on one hand was a good thing on the other the question we ask is where next? Will we ever get to the bottom of this? We were also referred to the Genetic specialists at Guys hospital who also could not find anything out of the norm.
I will come back to where we are with Mia clinically later in the article. But I want to talk a bit about our life’s and how have they have been in general as I said in my previous blog we would continue to have our up and down days and this is very true and unfortunately there probably have been more down days than ups at the moment There have been countless number of days where I have thought about how much I miss ‘normal’ as it were and think will things ever be ‘normal’ I’m slowly and must admit very slowly coming to terms with the fact they probably never will be or should I say our normal as they say will be very different to everyone else’s normal for those who don’t have children with special needs. Don’t get me wrong I am great believer in trying to keep things as normal as possible and still try and live our lives as we did previously this includes going camping in our campervan and I must admit Mia loves the outdoors and really takes after her dad here.
The thing I find the hardest is seeing other children of younger age to Mia doing things and more than what Mia can do. Mia is still unable to sit up unaided or crawl or move around and as I’ve said when you see babies and children of a younger age doing this and more it’s a real personal challenge to overcome. I’m not sure I ever will as when Mia can do what the other kids can do there will be something else I guess I will want her to be doing but i guess that’s all part and parcel of a Dad wanting to be proud as punch on how great there daughter is, but I do find myself skipping through pictures of children on social media etc. just so I don’t have anything to compare Mia to, They are getting excited at less than a year there little one is able to near enough stand up and I get excited at Mia being nearly 2 and she can roll over and also jump in a door bouncer. Your whole perception and views on children’s milestones and progression goes out the window and I find myself having to turn a blind eye to other children. I’m not afraid to admit this is the hardest thing that I have to deal with on a daily basis and at the moment I’m not sure of a way to get over that currently.
As I have said before things have not been easy the last 6 months Mia seems to be picking up illnesses left right and centre and I think this maybe to do with her diet and issues around feeding and drinking and throw in the added needs and care she needs when she is ill they can be some of, if not the hardest days ever. I have to hold my hands up here that i find these days hard to cope with Mia and Mum Jo really has to be a rock around her then and she does an amazing job.
All of the above problems and challenges could very easily turn a weak person into maybe going down a path in their life that wouldn’t be the right one and what I’m talking about here is turning their back on it all running away, maybe turning to spending every night in the pub and turning to booze, maybe break ups in the family etc. and trust me most of the above have crossed my mind and maybe if I had been in this situation when I was younger maybe that’s what would have happened. What I have found is to try and keep myself busy (not that Mia doesn’t keep me busy) but things outside the house and a break from the commitment I have to Mia which doesn’t just involve going to the local pub which those that know me know how much I enjoy that. A couple of things I have got involved in over the last 6 months was I took up running and ran the London Marathon for VICTA back in April I have always been a keen cyclist but cycling can take a lot of time out of your day although I am also training for ride London which is a 100 miles in a day around London at the end of July, whereas running I can have days where I may need a break out the house to clear my head and just go for a run. Secondly I thought I would like to give something back to the local community so I found myself training and am now fully operational for Kent Search and Rescue (KSAR) who are a charitable organisation that assist the emergency services in the search and rescue of missing vulnerable people. I am now on call with them 24 hours a day 7 days and 365 days a year and I must admit I do get a real sense of giving back or helping when I have been out searching for a families loved one. Both the above activities have really helped me focus my mind and give me a little respite for my life away from Mia but ultimately she is my number 1 priority right now but I do think it’s important to try and have something outside of what we as a family are going through to keep focused. So if there is a suggestion I can make to anyone find something away from home life to get you out and about.
I said earlier i would come back to the clinical diagnosis with Mia reason for this is we have now got a whole team of people involved in Mia’s local community care these include Physiotherapists where she has also had some hydrotherapy which she loved. Visual impairment teachers, occupational therapists, dieticians and last but no means least Portage. All of these people are coordinated by a key worker that Mia has and although they do a good job for us with Mia they really do a lot of work behind the scenes to cross communicate Mia’s needs and progress etc. The reason I’m talking about this team is I had found myself constantly chasing paediatricians and GOSH for answers and what’s next? When will they tell me what’s wrong? Why can’t they tell me what’s wrong? And it’s becoming rather tiresome and stressful and sense of lack of achievement as to getting an answer and I am starting to think we may never get an answer and even if we do what if anything can be done to put it right? So I now find myself trying to spend my time making sure Mia is getting the best of the best support and help to make her life the best it can possibly be and one of these things is we may also be applying for a buddy dog from Guide dogs for Mia to help encourage her to be mobile and confident. What I am getting at here is maybe there is a time in your life you kind of have to get on with what you have been dealt and make it the best you possibly can and not keep chasing something you may never know or get an answer on Don’t get me wrong I still put pressure on the doctors but what’s more important is making sure my time and energy is devoted to making Mia’s life happy and the best if not better than it currently is on a daily basis. One thing I do know for sure our little girl does laugh and smile and is happy and that’s what keeps us going every day. Mia is Mia and will do what she wants to do and can do when she is ready I’m sure.
Anyway think that’s enough of an update for now it’s Father’s Day after all and I going to put my feet up and relax and get ready for my trip to Glastonbury on Tuesday J which one day when Mia is older she will be joining me to. I hope to come back with some more news in the coming months on the life of my gorgeous little princess Mia-May