A Little Frank Update

I never really know if anyone bothers reading these kind of posts and I know perhaps they’re a little out of place on an interiors blog but I can’t help thinking that over the last few months I would have found it useful to read about someone in a similar to situation so I decided just to write it in case anyone else out there might relate. So here goes…

As I’m sure most of you know by now our little Frank was very seriously ill shortly after he was born with GBS Meningitis. I’ve talked openly about Frank’s time in hospital and while I have mentioned on Instagram briefly that he has lots of appointments I’ve never really shared details on his progress.

We had a brief period of just a couple of weeks after being discharged from hospital before the follow-up appointments began and since then we’ve been back at the hospital or at the Specialist Children’s Centre almost every week for one thing or another.

Initially all of Frank’s appointments were really positive. We came out of his first physio session at 7 weeks old with only positive comments. He had an Audiology exam at 10 weeks old which he passed with flying colours, and a Cranial Ultrasound shortly after which also showed as being clear. At the first appointment with the Neurologist we were told how great it was to see such a healthy baby.

At the next physio session however, at around 12 weeks old, the therapist raised some concerns over Frank’s muscle tone and movement. For the first 10 weeks of his life Frank was on some very strong anti-seizure medication (after he had a cluster of seizures at 3 days old) which essentially meant that he was incredibly sleepy most all of the time. This obviously had an impact on his development but it also affected his muscle tone. Once he was weaned off the medication it became obvious that all of his muscles were very tight and some of his movement was not quite right. For example he would arch his back, was unable to lie on his side, he kept his fists clenched most of the time and his arms and legs would go stiff with any heightened emotion. At 3 months old these things weren’t a huge issue we were told, he may simply outgrow them and it would only be if they were still apparent at 6 months that it was any cause for concern.

It came as a shock to us. Everything previously had been so positive that we had really begun to believe that Frank was going to be one of the lucky ones that surprised everyone and made a full recovery. I came home, put Frank down for his nap and began googling everything the physio had just told us (I know, I know – never a good idea!) Every search bought up the same thing – Cerebral Palsy. It was one of the things that had been mentioned to us in the hospital as a possible after effect of his meningitis. As I read the signs and symptoms in babies, it felt like someone was describing my precious little boy – he was showing almost every single sign.

At the next appointment I mentioned that I had been reading up on Cerebral Palsy and that I was concerned that Frank was showing signs of it. I longed to be told that I was just a paranoid mum but instead the therapist simply agreed with me. She explained that generally Doctors don’t like to diagnose before the age of two, so for now now all we could do was wait and see.

I’ll admit for several weeks every spare chance I had, I would frantically google stories of children with cerebral palsy. I couldn’t just “wait and see” I needed to find a story of someone with the exact same symptoms as Frank, and find out what kind of life that child was living. But the thing with CP is that no two cases are the same, so even if I did find an account of a baby similar sounding to Frank, that wouldn’t necessarily mean that things would be the same for Frank later down the line. It took me a while to accept this and to realise that waiting really is our only option right now.

So every day we do the exercises and stretches, I put him in his special chair, we go to Physio, OT, and Hydrotherapy and we try and fit in extra swimming sessions wherever we can as the water helps his muscles relax. At times it all feels like an enormous pressure and responsibility. If we have a day out and I don’t find time to do his exercises I feel guilty, am I delaying his development, is it my fault if he doesn’t make enough progress, am I doing enough? I’m conscious that the poor boy needs to have some fun as well, it’s bad enough that he has so many appointments, I can’t spend every spare minute making him work!

The truth is we don’t yet know whether Frank has Cerebral Palsy. He does have a lot of signs, and they have persisted after 6 months. He’s developmentally delayed, that we do know. At 9 months he can’t sit up, or roll over and he’s not yet picking up toys. But he IS making progress. He’s beginning to bat at toys, and his hands are opening up more than they were previously. At our most recent appointment with the Neurologist he noted some positive movements that he said would be very difficult for a baby with CP to do. So we are hopeful. And we are learning to be patient. But most of all we are making sure we enjoy Frank and every minute of our time together.

 

Advertisements

23 thoughts on “A Little Frank Update

  1. Hi Kate, I follow you on Instagram for a long time and the story of your little boy is so touching. I wish you and him a very happy new year, his smile is a ray of sunshine !

    Like

  2. He’s a gorgeous little boy. He’s perfect whatever his future holds. That’s the same for all of us parents. A huge journey into the unknown with no guarantees, just our heart going around outside our chests, raw and vulnerable. Good luck.

    I enjoy your Instagram and have followed his story.

    Like

  3. Hi Kate,
    I knew little Frank had had meningitis but didn’t realise you had all these worries still. He’s such a precious, smiley chap and I love seeing his joyful face popping up on my ig page. I’d be exactly the same, googling away. My Barney (now 11) has learning difficulties. It’s so hard to see our babes struggle! But you are doing amazing things with all these therapies, giving him the best chance possible and we’re here cheering you on from the sidelines xxxx Sarah @birdyandpearl

    Like

    1. Thanks so much for taking the time to read and comment Sarah. Sorry that your son (love the name by the way!) had some difficulties along the way too. Sending you and your family lots of love xxx

      Like

  4. I follow you on Instagram and have followed your story of Frank, he is such a gorgeous smiley boy 😁 enjoy every moment with him, he is going to be who he is going to be and with you both as his parents he has all the support that he may need as he grows up.
    Our son has Aspergers and it’s taken me a long time to try not to worry about the things that we cannot change. Take care x

    Like

    1. Thank you so much for reading and commenting, I can imagine you must have had some worrying times with your son too. It can be incredibly hard can’t it. Sending you and your family lots of love xxx

      Like

  5. I follow you on Instagram and have a little boy who is 3 weeks younger than your gorgeous little boy. (I am also a doctor so know a little about this scenario from a medical point of view ). I have never commented on any social media, but I just wanted to post to give my support and say that you come across as a wonderful mummy! I’m sure Frank is getting the best start he can!
    We’ve had a few health issues with our little one and it really is a hard journey but, wow, isn’t it worth it?!

    Like

  6. Ahh Kate, so sorry to hear of all the trouble you have had with your gorgeous little boy. I can’t imagine how you must be feeling but sounds like you are doing everything you can and that’s all you can do, try not to beat yourself up. We’ve been trying to have a baby for 3 years without success including rounds of IVF and one angel baby lost at 12 weeks. I have no idea why things people to good people, there just isn’t a rhyme or reason in life. Big hugs

    Like

  7. Hey Kate,
    I have to say that I love these updates. It’s not just lovely house pics that make people follow you. There are tons of interiors accounts and blogs to follow but people stick around here for what you say, the way you say it, your personality and the stories you share. I know in the past people have unfollowed you for doing these very personal posts but I think they are hugely important on so many levels so thank you very much for sharing such an intimate time with us all.

    I totally love seeing Frank’s huge smiling face. You are giving him the perfect, loving home and family. Don’t worry about feeling guilty. All mum’s feel that for everything – you just have bigger worries than most. But rest assured you are doing it all right. He’s totally gorgeous and what will be will be. He will be happy, he will be loved and at the end of the day that’s what we all wish for our kids.
    Big love Em x

    Like

  8. I have only recently discovered your interiors on Insta but I just wanted to wish you all the best with your beautiful boy. I think it takes true courage to share such difficult things; courage that Frankie obviously shares with his Mum.

    Like

  9. You are doing an amazing job. Your son looks so happy and sounds as though he’s making really good progress. Keep up the great work and look after yourselves.

    Like

  10. Hi Kate
    I’ve only recently come across your IG account and was curious about Frank from your mention of hydrotherapy etc. I’ve just read this post and it really resonates. Our daughter is 6 months and a month ago a paediatrician casually mentioned she may have CP. We have the horrendous watch and wait scenario involving us watching every small thing she does and dwelling on it. Feels a bit like torture doesn’t it? And I totally get the guilt you feel when you have a busy day and don’t fit in many exercises. I’ll be following Frank’s story and wish you all the very best with his journey. Liz xx

    Like

    1. Hi Liz,
      I’m sorry to hear you are going through this as well. The waiting is just so difficult isn’t it. Frank will be 1 next week and we still don’t have a diagnosis. But I know deep down that he does have CP (as much as some family members are in denial – I’m not) is your daughter high risk for CP? Always here to chat whenever you need. I’ve met a few other mums going through the same thing on IG and talking to them has helped me so much!! xxx

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

w

Connecting to %s