Watch Me Walking.....

Once again, it's been ages between posts!  I don't think I've ever mentioned that Darcy is the 4th (youngest / last!) child in our family, so I'm always busy!

I guess the most exciting thing I have to blog is that Darcy is now walking, and has been for about four weeks now.  We call him "Wobbly Bob" as he is still very much all over the place, but he's doing incredibly well, and can even climb up ladders, as I discovered when I found him sitting atop his brother's bunk bed.  So our goals in relation to mobility are running, hopping, jumping, and walking on un-even surfaces and up or down stairs - none of these he can do yet, but we are certainly well on his way.

Darcy's inital diagnosis of CP Diplegia was moderate, but we feel he now falls into mild, as he's had the time to catch up on a developmental basis, due to his prem background.

We still have lots of sleep issues.  We occassionally get a full nights sleep, but most nights I am still up at some dreadful hour with him.  We have recently applied for Respite Services, so that we can have some caring funds to assist us in getting a couple of good nights sleep.

Overall, Darcy's CP has taken a bit of backburner, as we are currently going through diagnosis for Aspergers (or at least something on the Spectrum), Sensory and Auditory Disorders, and Vacant Seizures.  None of these things have been confirmed as yet, but we are in the process.

It's a little early to diagnose Aspergers or Autism Spectrum Disorders, but since he already shows such strong characteristics, we have commenced the process.  It can also take up to approx. 9 months to get through all the testing and appointments, so the Paed has suggested we get started now.

Appointments coming up include a Neuro Appt, and probably a MRI and Brain Activity Scan, Paed Psych Appt, 2 Year Corrected Development Review, along with our normal weekly activities including CP Playgroup, Hydrotherapy, Physio, OT and Speech.

His vocab is fantastic and he knows lots and lots of words, but struggles to put them together or communicate with words....we are definitly amazed at his ability to mimic and say words though!

I think that's about it at the moment.  Botox and any Leg/Foot Accessorries have been put on hold, to see if he can continue to deveop without them.

Love Rach.

Wow - Time Flies......

It's been so long since I blogged.....life has just been incredibly busy.

We are officially part of the Cerebral Palsy Society now, and the ladies have all been so lovely.  We are on a weekly schedule of Physio, and sporadic OT and Speech assistance.  We have been invited to participate in the 0 - 5 years Playgroup and Hydrotherapy starting next week, and although I'm a little nervous, we're going to attend.  I guess I just feel that compared to so many of the CP kiddies, we are pretty lucky.  Yes, life is much harder than it would be if he didn't have CP, but as his speech, eating and overall upper body abilities are all good, I kind of feel that we don't belong as much as those that have children with a more severe disability.  Saying that, it does feel like I've had a baby forever now.  I still have to carry Darcy everywhere (obviously), I don't have a toddler who can run around or walk to the park, we obviously haven't even contemplated toilet training, and he still sleeps in his cot, as until he can walk, he can't go into a toddler bed.  Hopefully there will be other Mums with kiddies of a similiar age / disability there!

Whilst Darcy has been diagnosed with Diplegia, we're not 100% sure.  We still haven't had a MRI or any X-Rays, and he refuses to allow anyone to examine him.  He gets the occassional tremor, and full body stiffness when tired or sick, so we are waiting until he either gets friendlier, or they feel it's time to put him to sleep, so they can examine him properly, and make a more formal diagnosis.  I feel it's more than Diplegia, but we'll have to wait and see.

We've had loads of accomplishments since my last blog.  He can stand holding on to something, walk along the couch sideways, sort of walks holding my hand for about 5 steps (and then gets tired).  He can zoom around the house pushing a little trolley thing, but tires quickly.  He lacks 'core' terribly, and we are trying to improve that.  Whilst he sits very well, he does tend to be off balanced and rock, and has to catch himself with his arm, or simply lean on it.

His speech is great.  He says loads of words now - although I'm sure this is mostly due to having two older brothers and a sister.  He's not really putting many words together, but names lots of things - light, ball, truck etc.

His eating is also pretty good - and he's in love with dry Nutri-Grain at the moment.

Sleep - not so good.  I'm going to leave it another four weeks, and then if necessary talk to the Sleep Team at the CP Society.  We're in desparate need of some more sleep.  He seems to cry out a lot in his sleep, and I wonder if he's experiencing cramps or something at night.

He's still very clingy....but hoping that will improve a little over the next few months.  He goes to daycare once a week, and whilst hates drop off, he loves being there, and is always having a ball when I pick him up.

No word on when Botox will start as yet, but we are thinking it will be about Feb next year.

That's about all, I think!!  Talk soon!  I've put some pictures below of Darcy dressed up for his cousins 1st Birthday Party last month. :)

Lots of Waiting!

I haven't blogged recently, as there hasn't really been much happening!  The Secretary in the Mobility Unit at PMH has been lovely, and very informative and helpful, and we have an appointment scheduled for late April.  We also have an appointment scheduled at the CP Society that week, and the Social Worker (from the CP Society) will be coming for a home visit just after Easter.  Hopefully, once we have been through all the formal testing, we will be able to create a plan moving forward.

In the meantime, we have moved house to be closer to hospitals, therapy options, family and friends, so it's been a pretty big last few weeks for us as a family.

I found this the other day : 

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, hundreds of women will become mothers of special children.

Did you ever wonder how mothers of special children are chosen?

Somehow I visualize God hovering over the Earth selecting His instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
‘Armstrong, Beth, son. Patron Saint, Matthew’
‘Forest, Marjorie, daughter, Patron Saint, Cecilia.’
‘Rutledge, Carries, twins. Patron Saint, Gerard.’
He’s quite used to profanity.’ Finally He passes a name to an angel and smiles.
‘Give her a special child.’
The angel is curious. ‘Why this one, God? She’s so happy.’
‘Exactly,’ smiles God. ‘Could I give a special child to a mother who does not know how to laugh? That would be cruel.’

‘But does she have patience?’ asks the angel.
‘I don’t want her to have too much patience, or she will drown in a sea of self-pity and despair. Once shock and resentment wear off, she’ll handle it.’
 
I watch her today. She has that sense of self and independence that are so rare and so necessary in a mother. You see, the child I’m going to give her has his own world. She has to make him live in her world and that’s not going to be easy.’

‘But Lord, I don’t think she believes in you.’

God smiles. ‘No matter I can fix that. This one is perfect. She has just enough selfishness.’

The angel gasps. ‘Selfishness? Is that a virtue?’
God nods ‘If she can’t separate herself from the child occasionally. She’ll never survive.
Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realise it yet, but she is to be envied.’

‘She will never take for granted a spoken word. She will never consider a step to ordinary. When her child says ‘Mummy’ for the first time she will be witnessing a miracle and know it. I will permit her to see clearly the things I see- ignorance, cruelty, prejudice and allow her to rise above them. She will never be alone. I will be at her side every minute of the day of her life because she is doing my work as surely as she is by my side.’

‘And what about her patron saint?’ asks the angel, his pen posed in mid air.
God smiles. ‘A mirror will suffice.’ 

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