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.