Some of you may remember Kate’s glorious house from our home tour archives. More recently Kate blogged over on RMF and joins us today in our Wednesday afternoon parenting slot to talk about life after her gorgeous son Frank contracted meningitis.
Last time we spoke my little Frank was just a few weeks old, we had not long been home from hospital and were trying to adjust to normal life at home with a newborn – albeit still a little in shock after everything that had happened. Now, one year on and I just can’t quite believe where the time has gone! I’m back today just to give a little update on how Frank, and I are getting on and what the last year has looked like for us…
Going back to when we were still in hospital, a number of Doctors and Nurses tried to explain to us that this difficult experience unfortunately would not end as soon as we got home. As I mentioned briefly in my last post, Meningitis can cause a number of long term effects. We knew that as Frank had been so seriously ill it was likely that he would be left with some after effects, and so understood that we would have regular appointments with a Consultant who would monitor Frank’s development over the next three years.
Initially Frank’s recovery seemed to be very encouraging. The audiology exam and cranial ultrasound that I mentioned in my last post were both clear, his first physio session had gone really well and we were closing to having fully weaned him off all his seizure meds.
However, just a few weeks later at his second physio session, his therapist began to point out some concerns regarding aspects of his movement and development. At 12 weeks old, Frank still kept his hands fisted pretty much the entire time and his arms and legs were very stiff, and his core very weak. He could not lie comfortably on his side and was not beginning to reach out and explore with his hands as expected. We were told that as he was still young and had spent some weeks on some very strong medication, this was not an immediate cause for concern, but we were booked in for even more appointments to observe and monitor his development closely.
Both Chris and I were devastated, things had been seeming so positive and we had really begun to believe that Frank was going to surprise everyone by going on to make a full recovery.
As time went on it became apparent that Frank was quite delayed. I was going to a lot of baby groups and every week the differences between Frank and others babies his age seemed to become more obvious. We were always told that 6 months would be a crucial age and that if we had not seen a vast improvement in his symptoms by then that we may have to consider the fact that Frank had suffered a brain injury as a result of his illness.
6 months came and went and Frank still struggled with increased tone, unusual postures and persistent newborn reflexes. I had spent a lot of time researching what this all meant and every search brought about the same answer – these were all signs of Cerebral Palsy, something that had been mentioned to us while Frank was still in hospital as a possible after effect.
A few weeks later the physio came to our house and explained that she no longer thought this was something that Frank would outgrow and that her opinion was that Frank did indeed have Cerebral Palsy. As prepared as I thought I had been to be told this, I still felt sad. The last little bit of hope we had that perhaps he just needed a little more time to catch up had been taken away.
At this point we were referred for more therapies and the follow up appointments became more and more often. Our weeks are now made up of Physiotherapy, Occupational Therapy, Hydrotherapy, Speech & Language Therapy plus regular appointments with the Consultant, Neurologist and Community Paediatrician. It takes up a huge amount of our time, not to mention the fact that we have daily exercise and stretching programmes to do – all of which are crucial in helping Frank with his development and so I am very strict about!
The biggest challenge through all of this and without a doubt the thing that I have struggled with the most has been feeding. Frank can’t sit in a high chair or feed himself and we’ve had a number of issues along the way. As well as the more common problems such as reflux and a dairy intolerance, Frank also has some sensory issues meaning that he hates anything being in or touching his mouth. He has trouble with co-ordination so sucking and swallowing is a huge challenge for him – he has to work incredibly hard at drinking and eating! Understandably, this has had an effect on his weight – while he is finally back on the chart he is right at the bottom (below 0.4th centile!) and so every meal and bottle of milk is important, and if he has a bad feeding day I can’t help but worry.
More recently, he underwent tests that showed that he is taking fluid into his lungs. It is something I had been worrying about for a while and I was devastated that the test confirmed my worries. As a result, and because of his poor weight gain, we may have to consider tube feeding in the future but I am determined to do everything I can to try and avoid this if at all possible.
Despite all of this, all the challenges Frank has had to face and all those that lie ahead of him, he is the happiest little boy you will ever meet – with the most infectious smile. It sounds terribly cheesy but he has taught me so much about life, and honestly has made me a better person. I know that he is only young and so is unaware that he is different to other children, and I’d be lying if I said I didn’t worry about when he is older and is more aware, but already he has proven that he has the character and strength to deal with whatever life throws at him. He is incredibly strong and determined, and I believe that he will continue to amaze and surprise all of us with what he is able to achieve.
Towards the end of last year we took Frank back to Kings College Hospital where he spent time in the Paediatric Intensive Care Unit, to see the team that saved his life. It was an emotional day – for us and for them! Chris and I felt so proud to show them how well Frank was doing and they were delighted to see him. I also went back to the Princess Royal Hospital where we took Frank to A&E and met with the nurse who looked after us that first day. She had been so very kind to us all and it was great to see her again, under far better circumstances this time!
Several doctors have told us over the last year that had we waited just a few hours before taking Frank in that day, it is very unlikely he would be here today. As hard as that is to accept, it really does bring home just how lucky we are!!