More about Jack.....

This is Jack. He is now three, older brother to a baby sister, and son to some very proud parents and extended family. He has cerebral palsy, which affects him with a combination of extremely high muscle tone in some parts of his body, and extremely low in others. This has resulted in Jack currently not being able to stand or walk and he needs a carer to help him to sit and do most things we all take for granted, like bathing, toileting and dressing.

What Jack can do by himself is eat and drink, talk, sing, draw, play cars and trains, read books and play cups of tea. He loves Thomas the Tank Engine, In The Night Garden and Bob the Builder. He sings 'Twinkle Twinkle' and 'ABC' to himself at night in the dark. He is inquisitive, affectionate, boisterous, chatty, cheeky and polite. He is quite simply the son we always wished for.

As with the story of most children with disabilities, Jack's story is long and emotional. It's one which, although set with some adversity, is also full of positives and hope for the future. We don't by any means want to paint a picture of Jack as a victim - in fact we are very cognisant of the fact that many children's circumstances are far worse, be it due to disability or family or financial circumstance.

What most people don't know is three things:

1. Cerebral Palsy is a condition which does not always have an understood origin. This is the case for Jack.

2. Cerebral Palsy affects a child born in Australia every 18 hours and the effect it can have can range from mild ataxia which may be hardly noticeable, to severe impact on physical and intellectual development, including seizures, sight and hearing impairment among others.

3. Government funding for children with disabilities is meagre and difficult to access. It is a confusing and bureaucratic world of countless state and federal responsibilities, applications, justification of 'disabledness' and a dearth of appropriately trained and funded agencies and therapists. The recent productivity report into disability in Australia will hopefully change some of this with talk of a National Disability Insurance Scheme (NDIS) soon.

Enough lecturing! Let me break down Jack's story to date into some bite-sized chunks. I'll update from time to time. Thanks for taking the time for us to share our little boy with you.

The Beginning...

So we decided, after 2 years of marriage and together for 11, to have a baby. It took a year to get pregnant but finally happened. We'd spent time with my obstetrician to sound out possibilities of radiation toxicity on my eggs (I've had hundreds of xrays as a result of my Short Bowel Syndrome and kidney stones, but more on this another time...) and on the risk on nutritional deficiency for myself and the baby in utero (again, because of my SBS - didn't expect to get back to me so quickly....) which came back clear.

The pregnancy was pretty normal and although the baby was small, no problems were indicated at any scans or tests. We kept checking with the obstetrician that he was confident that I could have it naturally as I am pretty skinny with very small hips, and he exhibited breezy confidence that I could.

At 39 weeks, labour started. Contractions all day. I'm shaking my head as I write this, but I let my husband go to the pub. Yes I did. I called him after a few hours when I conceded to myself that the hot water bottle wasn't doing the job with the pain and that I needed Panadol. Afternoon into evening. Baths. Some dinner. Rocking. In the zone. Bloody show. 3am. Husband throws bags, vomit bucket and a million towels into the car. Freezing July night. Cautiously drive past drunks carousing early on Sunday morning in King St. Hospital. Only 3cm dilated. Gas. Vomit. Pethidine. Vomit. Weekend obstetrician looking concerned, asking questions. 8am. Husband worried because car is illegally parked. Want to stab him with a speculum but can only groan 'Owwwwww!'.

Finally the obstetrician told me the baby didn't look like it would fit through the birth canal and was becoming distressed and wanted to prep me for a caesarian. After giving me the epidural, he asked me to have a final try at getting him out with forceps. Jack squeezed out at about five past ten on the Sunday morning, battered and bruised, and cried. Relief.

Until a couple of hours later. Jack wasn't holding his body temperature. Hadn't had any luck feeding him. A gastric feeding tube was inserted and he was sent to the Special Care Nursery. I was still a bit knocked out and even when I fell asleep that night, only having held Jack for about an hour and not been able to give him the breast to bond, the gnawing feeling that it probably wasn't supposed to be like this hadn't hit.

In the morning the hormones were surging and it dawned on me with a clang that things hadn't gone as they described in prenatal classes. I was crying, I didn't know where Jack was, I was in pain, and no-one was telling me a thing. Rob was late coming in to see me, exhausted from the past 48 hours of no sleep.

For five days, Jack was repeatedly checked and tested by his fantastic pediatrician. He had neuro tests, hearing tests, blood tests. He was in a humidicrib for 3 days until he could keep himself warm. But I had to leave hospital without him, and I cried most of the way home.

The next two weeks are a blur of commuting daily, first with my Mum and then by myself the hour into the hospital to try to breast and bottlefeed Jack. I battled not only trying to understand the holdup with his recovery from the birth but also my own pain and incontinence from the episiotomy. I was up for hours every night at home trying to express milk to take into Jack, and was crushed that I was not successful, save for a paltry teaspoon here or there. The nurses were supportive and encouraging, but I was a mess. And no-one had even mentioned Cerebral Palsy yet.

Getting a diagnosis...

It took about 3 months before we decided to take Jack to a pediatric physio to sort out his torticollis, where his head tilted to one side, and plageocephaly, his misshapen head. His physical development was unusual - he didn't have much head control, even after a few months, he screamed when we gave him tummy time, and he didn't use both his hands or turn his head much, especially to the left. Around Christmas time, his pediatrician tentatively told me she thought he might have a form of cerebral palsy called hemiplegia, where just one side of the body is involved, and that he might walk a bit lopsided. But as the months progressed, and Jack was not sitting, rolling or crawling, she revealed that it now looked like all four limbs were involved, and a diagnosis of cerebral palsy involving all four limbs was confirmed. He was 6 months old.

It took almost a year to get to the top of the regional list for Early Childhood Intervention Services to pick Jack up. We were picked up by Scope and the therapists who visited were fantastic. But as time went on, and Jack's socialisation and language skills increased, it became evident that he needed a therapy but in a different format.

We visited CPEC in Glen Waverley and met with Claire Cotter. She generously spent a lot of time with us as we observed a session going on around us. And when we left, I sat in the car and cried. This was where Jack needed to be.

CPEC assists kids with CP by offering therapy in a small group setting at their facilities. Their staff are expertly trained. And they offered support not just for Jack but also for parents, by allowing us to meet other families, thereby sharing experiences and learning new ways to cope with the challenges. The problem was that intake into CPEC was fairly tightly controlled at a government level by zoning, and we live outside the CPEC intake region. So we began emailing and writing to various government ministers, and eventually, after causing a few headaches amongst the powers-that-be, we were accepted. Jack started in February this year and has not looked back.

Fast forward...

MRI's have not been able to detect a cause for Jack's CP - no evidence of oxygen deprivation or spinal cord injury. Genetic and metabolic tests have been inconclusive. Hip xrays show a degree of hip displasure which can affect his ability to walk. He had abductor surgery in December to partially release some tone in his legs, but which has had little effect, nor have the two Botox applications.

He has been fitted for a Second Skin suit, which will hopefully help him to stand and sit independently, and assist in his walking with a frame. We have also ordered a specialised Body Cycle which will give Jack some mobility and fun come summertime. 

Jack goes to kinder three days a week and loves it. His group is very accepting of him, and he has lots of friends. He has CPEC for 3 hours twice a week, and for the main enjoys it, particularly the singing and engaging with the group.

Every day presents new challenges. I struggle to carry him, and most of the bathing and bedtime is done by my husband. He can be stubborn and sooky and prone to tantrums, but what 3 year old isn't? But mostly he's just Jack, a happy kid with some challenges.

One week in September....

....Jack got two big things which will mark open new horizons; his Second Skin suit and his Body Cycle.  As luck would have it, they both came this week and work beautifully together.

Each of these came about because of the hard work and generosity of two organisations; MAD Foundation and the Lions Club. I have written more about both of these things via the two posts above. It's only early days but I can see already that both of these devices will have enormous impact and importance in Jack's childhood.

January 2012

Monday 30th - Last night Jack's dad made him a scooterboard. Scooterboards are used at CPEC as an alternative form of mobility and to develop upper body strength and coordination (I believe). This morning Jack has been having his first go with his own homemade scooterboard and so far, so good. We are trying to learn good ways for him to get on and off safely and easily by himself, so have forgone a safety strap so he has some independence.

Watch Jack on his scooterboard here.

March 2012

Jack has developed a lot in the past couple of months. He had Botox treatment in his left thumb, thighs and calves in January and although the results are not as defined as we would have liked, we are still seeing some lovely improvements in his range of movement and his ability, as well as motivation, to have more control over independent movement.

One thing we have been doing more of lately is kneeling, both high kneeling, as pictured above, and lower kneeling onto his heels. The beauty of kneeling is that as well as presenting an alternative position for activity, it helps to strengthen the buttock muscles, which are vital for successful standing.

For Jack, kneeling offers an interim position between sitting and standing providing a transition link from one to the other. Although he needs to be supervised and can't high kneel for too long, it allows him to get closer to his activity space as he can lean right in, as opposed to sitting.

When he gets tired with this position he can drop to low kneeling for a rest. From here he can do intermittent 'blast offs', lifting himself up and down, say, 5 times, with a burst of energy every 5 minutes, from low to high kneeling.

He can also, with assistance, transition from high kneeling to sitting on a stool when tired. From here, he can also, again with assistance, do some 'blast offs' from sitting to standing and back to sitting intermittently.

Jack's increased success in kneeling has also improve his ability to try to get from lying on his stomach to sitting. He has had good progress in combining pushing with his arms with bringing his knees up under his tummy, and then pushing back onto his heels, and then sliding sideways onto his bottom, and encouraging him to stabilise with his arms, to bring one leg around to a cross-legged sit.

It's important to note we still use the lying to sit process of lying on the back, arms over to one side, roll slightly and push up with the arms. However, Jack's success with this technique has been very slow, and although we haven't abandoned it, we saw it as neccessary to explore the alternative of pushing onto his knees, which has so far been promising.