Picture Filling.

The picture is emerging now.

Lucy had her ultrasound this afternoon. Another painful but necessary examination in order to fill in the gaps in our knowledge of her diagnosis of torticollis. It took a little over twenty minutes and she coped with it surprisingly well - except for one moment where the technician manipulated her head a little to far in an effort to expose her neck causing her to flinch and cry out in pain. Fortunately we were able to settle her fairly quickly there-after but she was pretty hesitant.

A doctor examined the scans as they were being performed and he hung around until they were completed. He put me at ease by explaining what he was seeing. 

The upshot of it all was as we expected. The right SCM muscle (the neck muscle running from up behind the jaw down to the collar bone) was thickened and significantly shorter than the left - accounting for the marked tilt Lucy has with her head favoring one side. Thankfully, there was no sign of any lesion or tumor that would account for her deformity, so you can imagine the relief there. Also, the technician took a look at her skull, examining the sutures or joins between the bones. They all appeared normal with no over lapping or deformity which means that, with time and intensive physical therapy, it should correct itself.

I brought her home this afternoon with a mixture of relief and emotion and I lay with her on the lounge room rug while she ate my nose and yanked on my beard.

This has been the first real scary experience we've had as parents with either of our children. And I don't mind saying it has knocked the stuffing out of both my serioso and I.

We're still unsure about how to approach the issue of the pediatrician. That keeps changing from one hour to the next...which probably means we'll end up not doing anything. I don't know if that's a good thing or not but right now, I think I'd rather focus on Lucy and getting her right again. Prolonged anger is just a waste of energy in the end anyway. 


We would rather deal in relief right now. Relief that it's just straight up torticollis without there being anything more sinister in play. That was the biggest thing for me. Our emotions have been all over the place and it has made us both extremely tired and a little fragile. Tears have come easily.

The picture fills in and we can go forwards.

DFA.

The Crooked Face, I Love So Much.

There is only happiness, a care free spirit, an innate sense of love received unconditionally. As she commando drags herself across the floor of our home, she has no idea of what is going on, of the worry that her loved ones bare on her behalf. Man, she can grab a good beard and pull!

For all intents and purposes Lucy goes on, day by day - the happy little infant she has always been. And that alone warms mine and my serioso's hearts and makes the events of the past few days seem lesser overwhelming. But I'm pissed off - and I know it probably does me no good. But I am none-the-less.

Lucy had her first physiotherapy session to assess the degree of torticollis and to structure a plan to try and stretch that abnormal muscle to try and get her back on track. It wasn't pretty but she bared up well. It involves gentle manipulation of the neck in an effort to work the sternocleidomastoid muscle, to lengthen it and hopefully make her skull symmetrical once more - or, more precisely, make it symmetrical for the first time.

Excuse my French but fuck me! How could have this have been missed.

Sorry...

It's like, 2 in the morning as I write this. I'm tired and I'm emotional. I have thought of nothing else these past few days.

Anyway. Our homework with Lucy is to spend an hour each day, using some techniques to encourage her to turn her head in the direction that will facilitate the stretch. My serioso brought a colored rattle with little beads inside that will provide some visual stimulation for Lucy and keep her interested in the exercises. Already, she is displaying a fiercely independent streak and doesn't always do what she's supposed to. I think we may have a firecracker on our hands...which is probably a good thing huh?

To watch her play on the floor, to crawl (aka drag!) herself across it, to sit up and hold herself up in the sitting position using her hands to stabilize her little body the degree of asymmetry is stark. It's going to take a lot of work to get this right again. 

My serioso and I have talked about what to do with regards to the pediatrician. And we've struggled with this. We've swung from being angry and wanting to write a sternly worded letter, to ringing the office and seeking a meeting, to shaking our heads and wondering if we should just let it go. We do have a routine follow up booked for August and I have half a mind to ring the office next week to see if the date can be brought forward. Again it seems to be somewhat of a dilemma. We also have an ultrasound booked for Monday next week and we have decided to go ahead with it. I need to rule out any possibility of a lesion. That's the thing that is scaring the shite out of me right now. The weight of expectation is terrible.

We see the physiotherapist again in a little over a week. That is something less daunting but I know it's going to hurt Lucy. I can take a lot of things but the tiny little yelp of my own daughter...well, that is gut wrenching.

To look into the crooked face, I love so much and see pain...

DFA.

The Tortoise Collar

So today we had the appointment with the Doctor to find out what Lucy is dealing with. The verdict wasn't really nice but at the very least we know a little more now. Lucy has been diagnosed with a particularly nasty torticollis - that is to say "wry neck" in the old terminology. 

Torticollis, in Lucy's case in particular, is a condition where - because of a malposition in the uterus during development and/or trauma during birth and delivery - one of the muscles in her neck has been damaged quite badly and this has caused her not only to favor turning her head to one side but to have it hang down to one side when in an upright position. Added to this is the rather worrying realization that, because she has for so long favored one side because of the damaged muscle - sternocleidomastoid muscle - her head has taken on an asymmetrical appearance - it's seriously been pushed out of shape. One side of her forehead is more prominent than the other and the back of her head has a protrusion that makes it look out of shape. Neither myself or my serioso actually noticed this initially. I kinda thought something about Lucy's head shape was amiss some weeks ago but I pushed it aside, focusing more on the increasingly alarming situation with her head positioning. 

We are now going to embark on an intensive physiotherapy regime with Lucy in an attempt to see if the muscle in her neck can be "stretched", whether the torticollis can be corrected. An ultrasound has also been planned to see how badly the muscle has been damaged or if there is any sort of lesion that might also have exacerbated Lucy's predicament.

The physiotherapy sessions are painful - as the first one last evening proved. Lucy yelped at the manipulation that had to be applied and the exercises that we've been given to do at home don't make for a very nice experience. Unfortunately this has been left to go on much too long and the degree of deformity of the muscle is greater than it otherwise would have been, had we been able to get to the bottom of this sooner.

I feel awful. 

Awful that I didn't twig myself that Lucy was indeed in trouble and awful that I didn't act sooner in getting Lucy seen to. As a nurse I should have picked this up. And I have to say that I am a little angry at our pediatrician. We took Lucy to see the pediatrician a couple of months ago on the advice of my MIL who is a nurse/midwife herself and who suggested that this needed to be gotten to the bottom of. At the time, however, the pediatrician dismissed our concerns as those fired up by an overly exuberant grandmother.

We paid $160 to be told that. 

The diagnosis that was made yesterday was by our GP (our "Becker" - American friends), a well versed and highly experienced medico in children's medicine who came to the diagnosis after a thorough examination of Lucy. 

We were bulk billed for that (i.e. Medicare). 

I've half a mind to call or write our pediatrician to let them know that we feel very let down by their lack of judgment. But that won't really solve Lucy's problems now. I just hope and pray that, because of my own failing in identifying this sooner as well as others missteps, we haven't caused Lucy lasting damage.

To those of you who have sent us messages of support in the last little while - each and every one of you are beautiful people and I thank you.

DFA.