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One Year On {An Update From Kate}

Author: Guest Post

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!!

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38 thoughts on “One Year On {An Update From Kate}

  1. Kate, I follow you on Instagram and Frank’s smile always brightens up my day. This update is really interesting and I’m sure I am not the only one who knows so little about the effects of meningitis and cerebral palsy. As well as saying well done to Frank, you also need a massive pat on the back. You are doing an amazing job and I love your positive, kick ass attitude. I can’t wait to hear more x x x

    1. Thank you so much for following Claire, and for such a lovely message too!! Means the world, thank you xxxx

  2. Hi Kate, I follow you on Instagram and always think how happy Frank looks. He has amazing parents looking after him. You are an inspiration.

  3. Hi Kate, thank you for sharing your update, I love following along with you on Instagram. Frank is the most gorgeous little boy! I think you are doing an amazing job and Frank is so lucky to have you as his Mummy xx

  4. I’ve followed your instagram page for a while and your recent series on Cerebral Palsy was an eye opener for me. Thank you for sharing and helping me learn.

    Your boy is an absolute smasher and he’s got a great Mum too me thinks.

  5. Kate thank you so much for the update – very informative and you’re both amazing. Really inspiring. Love following you guys on insta. Frank is a star xxx

  6. Kate, I have been following you on Instagram for a while now after reading your very first post on RMF. You really are an inspiration. Frank’s happy little face is infectious and always makes me smile too! Such a dear little chap. You and your husband are doing an amazing job. Wishing you guys all the best x

  7. Another insta follower here! I’m so happy for you that Frank is doing so well and am in awe of your strength and positivity- I know you say Frank is a happy boy but a lot of that will be down to you as parents! xxx

  8. Well done for campaigning for meningitis awareness Kate. Your strength and positivity is such a amazing quality. Liz xx

  9. Another Instagram follower here! Thank you for sharing your story and for the positivity you show towards what I imagine can sometimes be a very trying situation. Frank looks ridiculously happy to be part of your family. Keep doing what you’re doing. Xx

  10. Thank you sharing your story with us and for talking so openly and honestly. Frank looks like a very happy boy, and will be getting his strength and determination directly from his amazing parents. Sending very best wishes to you and your family xx

  11. This brought a few tears to my eyes!

    Handsome Frank has done so well and will continue to do so with the support of the bestest mummy and daddy he could ask for! Well done guys.

  12. What a gorgeous smile your little guy has. My daughter Amelie has CP, I shared her story on RMF last year. She SDR in October last year and is doing brilliantly. It’s a tough journey, but I gain so much strength from Amelie as I’m sure you do from Frank. Thank you for sharing your story super-mama 💪🏻

    1. Hi Sarah, I remember reading your story and about your beautiful daughter. Your story really inspired me. So pleased to hear she’s doing well after the SDR surgery, I have heard amazing things about it! Unfortunately it’s not an option if the CP is caused by Meningitis, shame as it is absolutely something I would have considered!! Big love to you and your family xx

      1. Thank you Kate. It’s so important to raise awareness and you’re doing a fantastic job. Well done!

        CP can present itself in so many different ways. I’m still learning to be honest. So one type of treatment certainly doesn’t fit all!

        I’m looking forward to watching Frank’s journey on IG.

  13. Oh goodness, tears in my eyes too reading Frank’s story and the lovely comments (on the commuter train, doh!). Kate it’s so clear that you’re an absolutely fabulous mum, and also what a great campaigner you are both for gorgeous Frank and in raising awareness of meningitis and cerebral palsy. I wish you and your family all the luck and happiness you deserve! Go Frank!!

  14. You are amazing and so is Frank. Such an inspiration to other mums like me and a reminder that we should all seek out the positives wherever we can. I am looking forward to watching Frank keep on developing via your Instagram, his smile lights up my feed and I love it when his cheeky grin pops up! Xx

  15. Kate, I’ve followed you on Instagram too (since before you had Frank), and I think you’re an inspiration. You have such a positive attitude and you’ve definitely passed it on to Frank – that smile! He is such a beautiful boy. 😍 x

  16. I’m in awe after reading about your story, my little boy is coming up to a year and I can’t imagine having to deal with the additional worry and upheaval you’ve all been through, the photos of Frank are gorgeous and with such strong and doting parents I’m sure he’s going to thrive! Lots of love x

  17. Oh this brought a tear to my eyes. What an amazing mother (and I guess father too) Frank has! You seem so strong and positive. Thank you fir sharing your story and teaching so many others about meningitis and now cerebral palsy. I’m sending you lots of love from Germany!

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