The Letter I've Waited For Forever

After a wonderful day out with a friend and her new baby in beautiful Richmond in north Yorkshire, I came home with the giggle-monster (also known as Wriggles) and found a nonchalant brown envelope sitting on my doormat. 

This letter I have been waiting for in some form for a long time, at least 15 months if not more. In many ways, nearly 2 years. I didn't know what it would look like, the exact words or when it would arrive but there has been some level of expectation that it would come at some point or something similar.

In bold type, amongst some other headings read the line:

"Diagnosis: Emerging central motor defect-cerebral palsy with mild asymmetry and developmental delay"

Since our recent development review when the consultant confirmed brisk reflexes and spasticity in both legs and the left arm, I have increasingly suspected that this would happen sooner or later. Both our consultants and physiotherapists have mercifully always been very open and honest with me which has lessened the blow, although I was surprised to still feel it keenly when I read the words in black and white. It is mild enough to have taken this long to diagnose, and to look at Wriggles you would be unlikely to suspect something slightly different at first, second or even third glance. By all means, as conditions go it is far from severe and because of this is very unlikely to hold her back definitively in anything. Yes, she might have to work harder and take longer to achieve physical milestones particularly involving lower limbs, but there is no reason seen now why she should not achieve anything. So given this, why do I feel so funny?

It's a label, I suppose. Bam, slapped on. Something to live with. A name. A condition. A reason. In many ways, I welcome the "answer" but in as many ways I mourn the confirmation. I've known since practically 'term' that Wriggles finds gross motor skills more difficult and that her reflexes and some core strength is not what it could be. I suppose the surprise, if could call it that, is that this isn't something which is going to disappear. This isn't our bit of prematurity that needs to just catch up. This is something that she will carry to school, to adulthood and beyond. It invites even more unknowns and fogginess to the future.

Thankfully, cerebral palsy is not degenerative. What you see, is what you get in that as it originates in the brain, it is not going to change. 

"Children with cerebral palsy have difficulties in controlling muscles and movements as they grow and develop. The nature and extent of these difficulties may change as children grow but cerebral palsy itself is not progressive: the injury or impairment in the brain does not change. However, the effects of the brain injury on the body may change over time for better or worse. Physiotherapy and other therapies can often help people with cerebral palsy reach their full potential and become more independent." Taken from Scope's website.

In cases like ours, diagnosis is not immediate because it doesn't have to be. It isn't that Wriggles has degenerated, it is just that it was not blindingly obvious before now especially given her prematurity and frequency of illness. Many 'symptoms' of cerebral palsy can also be attributed to different conditions and developmental progress that in some cases can be resolved. We have for some while now been receiving a physiotherapy programme similar to a child with a CP diagnosis because Wriggles was displaying the traits which are treated as and when they are prominent or seen to be hampering developmental progress. Her treatment will not know differ because of this letter; it doesn't need to. It just means that everyone will be aware that there are no quick fixes and she will probably remain on the books longer than expected. It's not just going to be resolved with a ta-da! Look she's walking now! as had been thought whenever she does start walking unaided. And I think that is what stings. 

I'm so glad, grateful and relieved that the linked-up health care and services in my area have enabled her so far and will continue to; I just wish we didn't have to be in that position in the first place.

Accepting

Another appointment, another referral.

Sigh.

This time, orthotics. To be fair, it has be brewing a while and the initial referral was made a while ago, then cancelled, and now have been referred again. The physio is happily, delighted that Wriggles is pulling to stand and cruising. It is so lovely to see the professionals involved are really responsive to changes, as if they were family members or friends. The glitch is the old high muscle tone again. It has improved massively, so the hope is that with a helping hand (or foot) from orthotics we can avoid too much intervention. Her right leg which has always been the limb most affected, goes onto tip-toe and the other leg is overly flat-footed which now confusingly smacks of low muscle tone. "She always HAS liked to be confusing," our physio mused. It looks as though until this problem is sorted out, we will not be seeing any unsupported walking as essentially her legs are not strong enough to bear any weight let alone create movement.

Apparently we are likely to be looking at three options.

Option 1 (our physio's preference): supportive or modified shoes to help her feet stay in the correct places and in turn support the ankles which will align the knees and help the hips.

Option 2 (apparently likely to be orthotics preference): splints. Possibly for one leg, possibly for both.

Option 3 (a good idea but our consultant is too good at sitting on the fence for this probably): medication to control muscle tone and eliminate any spasms. I suspect because although Wriggles' problems delay her, they are really relatively mild compared to other children, that this will rule this out. Muscle relaxants seem very proactive for our chilled out medical entourage and I am not sure without a hell of a lot more information how I feel about them. 

I know when the appointment letter comes through I will feel a little bit deflated and a bit sad for Wriggles that yet again, there is something different happening for her. But on the whole, I am glad that things seem to be moving in gaining support and exploring options relatively early to hopefully ensure the older pre-school years and the future is smoother.

As time moves on, I am accepting that the magical "catch up by 2" is unlikely to be applicable to us. Wriggles is doing FANTASTICALLY and there are many areas which I have zero concerns on, but there is no way we will be getting discharged anytime soon. Her current notes record global delays and her feeding and dietary management is still very much a muddle. Ironically, when we left NICU, the consensus was she was "fine" and we would be one of the lucky families with no problems;  a clean bill of health and no developmental glitches. I know it has slightly surprised everyone who has known her since birth or the early days that she is still accumulating both referrals and needing a fair amount of input across multiple areas which will continue to be the case for the next little chunk of her life. I am not expecting to be given a specific diagnosis anytime soon or even if there is one. I suspect prematurity at least indirectly is the root of all of the discrepancies throughout development and that our recurrent admissions to hospital are also playing havoc with getting things moving (literally).

It is a bit of a shock initially to discover that what you imagined rearing a child would be like is actually going to be accompanied by lots of other things from guilt, pain, sorrow, nosiness from others, tuts, opinions, always opinions, and an endless list of appointments and professionals who have suddenly moved in as part of the family. But then again, raising any child is a bit of a foray into the unknown, whether they are a glowing picture of all that baby manuals illustrate or otherwise. The generic e-mails we get and bulletins "Your baby is now 21 months! He/she will be talking in sentences, eating five course dinners of nutritious organic fare, running around and restoring world peace in all corner of the globe" are enough to frustrate any parent who is doing their best only to realise that they are not the ones with the entire control. You cannot force any child, far less one with complications, into achieving beyond their means, beyond their time.

Would I like it if Wriggles walked? Probably, yes. Do I care that she doesn't? Not really, no. Sure, in a 100% hypothetical world where prematurity, disability and developmental setbacks don't exist, that would be super thanks. But they do, and they can affect you, or me, whether we knew or anticipated it or not. It doesn't detract from a child's perfection or innocence. It simply carves out a different path for them to walk, and as I remember all too often, that path nearly wasn't there at all.

As we head towards Wriggles' second birthday, we are slowly gathering in more professionals. At 1, we had our neonatal consultant and a physiotherapist. At nearly 2 we have traded in our neonatologist for a paediatric consultant who also doubles up in neurology, a dietician, a speech and language therapist, our beloved physiotherapist and now an orthotics personage and it is likely we will also gain a respiratory consultant. Proof that you can never plan life. I never expected to have a child with a label, either temporarily or long term. But I wouldn't swap her for the world.

Hands off: she is mine