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 |
I love your underlying adoration of Wriggles that comes through loud and clear in this post. She's a lucky girl and I can imagine her as a young lady reading these posts and thinking: I can't believe you went through all that with me Mum.
ReplyDeleteThe bit about those standard letters on "Your child will now be doing....." really got to me. We had one of those not to long after Adam had been diagnosed as severely hearing impaired, "Your child will now start recognizing their own name, turn to loud sounds, sing Handel in four part harmony, give extensive speeches at the United Nations...." Ok so I got a teeny bit sarcastic there. As I recall, that was one of those letters I tore into tiny little shreds before putting it as far into the bin as I could.
ReplyDeleteI admire your strength coping with each new twist and turn in Wriggles path and hope things become smoother for you both soon. x