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.

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