Medical Jargon, Phone Calls & 1st Birthday

We received Darcy's Development Review Report today, as follows : 

On Examination : 

Darcy's height was 71.8cms (10th Percentile), weight 7.99kgs (<1st Percentile), and head circumference 46cms (50th Percentile).  The Percentiles are a rating mechanism.  In broad terms, 10th Percentile (and so on) means that there are approx. 10 babies within Australia at that size/height/weight.  Therefore; his weight is obviously a concern.

A Griffiths Test was carried out, and the result is that his overall development age is 10.5 months, and considering he was 12 months corrected, I was quite happy with that!

During testing Darcy banged many of the objects together or on the table, although he is now no longer mouthing toys.  He is startin gto play constructively with the brick boxes, trying to place them back in the box, is able to hold 3 cubes, but is not showing any interest in the formboard puzzles (I'm off to buy some this week, so we can practice!).  Thumb finger opposition was comlete although he had some difficulty initially picking up objects.  He is beginning to idenify objects (car, ball), and babbled freely.

Darcy is able to commando crawl and will sit when placed on the floor for some period of time with lateral propping responses well developed.  He however stiffens markedly on any handling, with a tendency to throw himself back onto the floor.

Neurological examiniation showed increased muscl tone particularly in the lower limbs, normal to brisk lower limb reflexes.  Tendency to curl his toes with limitation of dorsiflextion bilaterlly.  Decreased hip abducution.  He has a mild tendency to tilt his head, which has improved markedly recently.

Summary

Darcy's developmental progress demonstrated an overall mild delay, particularly in the area of gross motor skills and neurological examinations.  He demonstrates an intermittent increase in muscle tone, which is suggestive of an evolving cerebral palsy of diplegic pattern.

Next Report

Then we had an examination report from another Dr : Darcy appears to have moderate lower limb hemiparesis (I'm off to look that one up on google!).  He is crawling using only his arms, has evident plantar flexures of his fee, and has episodes of hypertonicity and spasm when he gets upset.  As a prem in KEMH he had multiple episodes of respiratory arrest.

Action this Week

KEMH have agreed to provide us with a further 8 weeks of free Physio :).  I have entered into a GP Management Plan, which provides us with 5 medicare rebated Private Physio sessions, and booked into a recommended Physio - Dr H.  I've contacted the local Development Centre, but they're not keen on the CP, and have told me to contact Disability Services - something I'll try to do later this week.  I've called PMH to follow up on our referral - and they haven't received it yet.  KEMH have said they have sent it.  Will follow up again in three days.  I have started to put together a medical file (suggestion from a friend!) that I can take with me to all appointments.\

1st Birthday

As Darcy is 15 months now - I thought I had better upload some of his 1st Birthday Pics.  We had a lovely bbq by the beach with family and friends. :)

Rach. xo

Prem World & an Unofficial Diagnosis

Darcy was born on Monday, 3rd November 2008 at 28 weeks gestation, weighing only 895 grams.  His early arrival was due to IUGR, a blocked ductus, and Pre-Eclampsia. 

He took a breath on arrival, and then needed to be resussitated and ventilated - something that was to happen on numerous occassions over the coming weeks.

We went through the 'normal' things that NICU/SCN parents do - major infections, lumbar punctures, digestion and bowel issues, ducts (heart problems), ROP (only stage one, thankfully), and hernia (small op).

There were tears, celebrations, anxious waits, and those dreadful midnight phone calls from the hospital, but he eventually made it home after a 12 week stay, completely off oxygen, and in time for his official due date.

Our understanding was that all was well.

At about six months, I realised that Darcy was running behind with his gross development skills (walking, sitting, crawling), and commenced physio.  He progressed (slowly), but progression was good, so we were all happy with that.

At 11 months I had that niggling feeling that something just wasn't right, and I returned to the hospital specialists requesting further information.  I actually asked if he had CP - I had done some research, and Darcy seemed to have many of the symptoms.  They said that all was well, and just keep going with the physio, and he would get there.

At 12.5 months he sat unassisted (!) just in time for Christmas, which was wonderful, and a month or so later, he started to commando crawl - using his upper body to move around the house.  We were feeling much more confident now with his progress, and had stopped worrying as much.

As part of our Prem Programme, we had a 1 year old (corrected) exam.  Basically, he was 15 months, but we base his development on his true delivery age, which would have been 12 months.  We were told at that review that Darcy had Cerebral Palsy (Diplegia), and we would be referred to the Children's Hospital.  No further information was given.

Devastated - I of couse headed to faithful google :) and started to research, with it to only end in tears!  So many questions.....would he walk?  would he look normal?  thousands of financial questions - wheelchairs, therapy, orthopedic footwear?  how will we afford to provide him with all the things he will need?  would he be teased?  toilet training? school? our future?

I am probably a little still in that mode, although I found a blog "give a girl the right shoes and she can conquer the world."  and it gave me hope.  A gorgeous little girl doing all the things she should, and an understanding of what we possibly face in the coming years.

So here I am.....blogging for the first time.....in the hope that one day, perhaps our story will help someone else.

Rachael. xo