Samuel is now 13 which is how long this site has been going! We love you Sammy bear!

"May 7th, 2008

Samuel is in the local Penrith Press along with me for the National Day of Thanksgiving which falls on mothers day. See the article here.

Samuel is disabled because he was born at 28 weeks and suffered severe brain damage. As a result he is in a wheelchair and is profoundly delayed in his learning and will be reliant on 24 hour care for the rest of his life.

Here are some interest links you can read -

This is from http://wheelsforsam.com a site dedicated to help Sam raise money for a wheelchair converted vehicle.

Our Samuel is back at school now! He is turning 10 years old this year and so is this web site! Last year was good for him as he got a brand new wheel chair. Amazing as it came from three different countries - Germany, the US and Denmark. Thanks to the Variety Club for coming to the party with the costs. We love the generosity of the club! Samuel can not walk by himself and will never be independent so he is very special to our family.

(Samuel was born at 28 weeks and suffered major complications and illness, including signifcant brain damage.)

Samuel was born seven years ago today! He is the reason for this site. He was born at 28 weeks. Today he enjoys watching videos, music and school. He is in a wheel chair and cannot speak but he makes plenty of happy sounds. He celebrated with his Aunt, Uncle and Grandma, plus mum dad and Aidan his brother. Here is a pic of Sam and dad being silly on the web cam.

Please, sign the guest book and leave your wishes! His story can be found
right here.

May 31, 2001 - Hello again, After recently going for a brain activity scan on Samuel we have found out that he has seizure activity. We were very upset as this was not the news we were after. We are unsure if this has meant more brain damage or what the effects were. This information came to hand after changing our doctor for Samuel. Our existing doctor was a little disappointing in his care of Samuel.

I believe he was just too exhausted every time we saw him. Our new doctor seems to be very pro-active in his approach. Who knows how long this activity was happening. This may have been the result of the new drug he is on to relax his muscles.

Potentially is can bring on seizure and in fact Samuel has at least two we know of. Again the concern is more brain damage. Samuel will also be getting his button soon to feed him via a direct route to his stomach. We have an appointment with a surgeon soon. His appointment with the neurologist is today so we will soon know more. I will let you know after we do.

January 2001 Update

Samuel has started school and is loving it. He is doing do well. He is a bit more tired these days but he is well looked after. He is getting input from a professionals in a wonderful environment. They do not just educate but do therapy. All the specialists he needs at the school. This is a great relief for us as therapy meant always driving around Sydney.

He also goes in to hospital on 7th February for some test to see how his muscle and bone development are going and what his digestive system is doing. He is also getting botox treatment to ease his taught limbs.

It has been a challenging period for us. We have gone through sleepless nights with Samuel waking up every 2 or so hours for many consecutive weeks on end.

The stress mounted I can tell you. Fortunately we discovered baclofen.

The drug has relaxed Samuel and meant better sleep. (Our experience only - you should seek medical advise). His limbs are loser and he does not extend as much as he did.

28th February 2000 Update

Samuel is now a TV star with an ABC documentary hopefully going to air in April this year. A science program were looking at premature birth and the many issues surrounding it. (ethical etc) After almost 2 hours of filming it will amount to about 7 minutes of TV. I think it was well worth the time. I hope it gives other parents and general society an insight to the trauma associated with having kids born so early. It also will show the risks involved. (disabilities)

We are well on the way to fund raising for Samuel's wheel chair. Our first avenue is chocolates. We will be selling many hundreds of M & M 's over the coming months. If you think you, your school or college can help then be my guest. (We are in Australia but who cares, it is a global community these days)

I will post some new photos soon including the wheel chair we need and the "space chair" I have been talking about. Samuel seems comfortable in the space chair. It is a good step towards getting used to a wheel chair as it helps him sit up for extended time periods. With school coming up in 2001 it will be vital training for him.

We are still look for a school and have rounded it down to a few. Some schools incorporate a special unit and others are dedicated to special needs kids. We still are not sure which is best for him.

Samuel will go from one to two days a week at preschool soon. Funding is being held up at the moment as a result of some oversights in the system which we are waiting to pinpoint. Karla is a little stressed about it at.

We had a team meeting today involving family, carers, social workers and therapists. We discussed what Samuel has achieved, where we need to go and how to get there. It was also an opportunity for different parties to share their experiences with each other. They may have never found out any other way. This knowledge enables them to make changes in the way Samuel's therapy is done. It can only have a positive effect.

We received a psychological report on Thursday, just before the film crew arrived. Basically, Samuel is severely delayed. He is around a one year old as far as learning goes. This has become more acute as his physical and seeing disabilities restrict and slow his development. We do not think this is set in stone as he keeps making progress gradually. He may just be behind for quite some time.

This may also mean that he is mentally disabled which we find hard to deal with. He is already seriously physically disabled. It will be very challenging but we love him dearly and he deserves our best!

We have taken it pretty hard so pray for us or send Karla a nice e-mail or card.

Terry

Samuel got wheels! A local family donated their wheel chair van that they no longer needed! What miracle! Samuel still needs plenty more fundraising in to the future but this is a huge hurdle overcome!

Sam’s Wheel Chair Car Fund

Samuel is now 11 going on 12 and currently rides in a special car seat in our family wagon. (See below)

He is getting too big to physically load in to the car, especially for Karla as you can imagine.

Samuel needs a wheelchair ready car so he can be “wheeled” in to the car, not carried at the risk of our backs and other injuries. There are plenty of options available but they are quite costly and charities do not normally donate such large amounts although they might help. We need between $50000  and $70000  thousand for such a vehicle and are looking for any amounts to help towards this. (See an example below of a car for wheelchairs)

To donate, please send via paypal any amount to carfund@preemie.info or follow the link at the preemie web site.

About Samuel

Samuel was born at 12 weeks premature and as a result of complications he suffered significant brain injury. He has a profound learning delay and severe physical disabilities. To view his story visit here. A gallery of pictures can be found here.

Other articles.

- 11 year reflection
- Dad's Misconception
- Samuel's original story!

Samuel is now 10 years old and the reason for this web site starting in 1996. He was born at 28 weeks and suffered significant brain damage and as a result can not walk, talk and really understand his birthday. So the 9th of May was a joyous but a kind of sad day because we want him to run and kick the football like the other kids.

Some stuff previously writen here -
Samuel's Story - Born 28 weeks and strggled to live.

Feelings of a Preemie Parent (published in Living Miracles)
Dad's Misconception - What all dad's should read.

Hey,

Samuel is doing well. He just needs to shake of a chest infection. Disabled kids have this issue. Mobility is a big concern with kids like this.

He continues to love school and one of his favourite teachers is leaving. You really do build trust with the teachers as Sam is so reliant on them.

For those who do not know Samuel is the reason for this site and you can read about him on the right menu. He was born at 28 weeks in 1996. The reason he was preemie is because my wife Karla had high blood pressure as a result of activated C sydrome where her bloods clots too well. So the placenta could not form correctly and therefore not support Samuel with enough blood.

She was in hostipal for a month before Samuel's birth and Samuel was in the nicu for about 90-100 days.

October 22, 2002 - Sports carnival at school. Let's hope he comes home with some ribbons!

July 10, 2002 - Samuel is on holidays right now, visiting the zoo and just having a great time.

June 9, 2002 - Little Samuel has a bit of chest cold, making it hard to keep down his food. He rarely gets sicks. Pray for him.

June 1, 2002 -Samuel helps dad celebrate his birthday. Happy Birthday dad.

May 9 , 2002 - Happy 6th Birthday Samuel! You are so special! Say Happy Birthday here!!

March 25, 2002 - Pop! The button has popped out again so it looks like day surgery. Samuel was having a holiday on the weekend when it happened. He has had high temperatures as well but they have abated. Thank goodness. The joy of disabilities.

January 30, 2002 - Samuel is back at school for year number two. Just mention the word and he gets excited. Cool!

December 30, 2001 - Samuel has just returned from a wonderful holiday with family in Canberra Australia. He has also finished his first year from school where he received an achievement award. Next year he will have some more tests on his bones to determine the extent of the osteoporosis. As result of the overnight feeds using the Kangaroo Pump he has put on 2.5 kilos.

October 22, 2001 - Samuel has a his first sports day. We all attended and had some great fun! Samuel got a first place in the wheel chair race as well. All else is well.

September 14, 2001 - Samuel's day operation went just fine to reinsert his button. His stomach was a little tender but he is great. It seems that the seizure may have been helped along by the weight that he has put on recently. Consequently the medication for the seizures was increased by the doctor.

September 12, 2001 - It aches me to write this but yesterday Samuel had another serious seizure in the morning. He was very drained but seems OK. Karla will visit doctors today for possible increase in medication. It just breaks your heart.

September 3, 2001 - Samuel has a weekend holiday at school and has a great time. We missed him though.

August 24, 2001 - Samuel is fine and will soon have his catheter replaced with the button. We can not wait as it will be so much easier! Samuel has put on 2 kilos! His face has filled out and his legs have more meat on them. The overnight feeds seem to be working.

July 26, 2001 - Samuel's catheter comes out again and Karla spends hours at the hospital. Samuel is back to school and loves it as normal.

July 21, 2001 - What a great holiday he had. Holding koalas, four wheel driving in the bush, out on the river for an adventure and Samuel saw Dr Doolittle. Great life but someone has got to do it!

July 11, 2001 - Samuel has seen the surgeon and the temporary tube will remain in for another six weeks. He will then stay overnight to have the button re-inserted. This time will allow all the wounds to heal more fully before undergoing the procedure.

July 2, 2001 - Samuel is back at school and loving it! He is on a new medication for seizures. He has appointment next week for his stomach button. We are so thankful that he is ok.

June 26, 2001 - Our little boy was admitted to hospital for a severe seizure lasting up to 4 hours. He was staying at a respite hospital for two days when it occurred.

He is ok at the moment. Karla is waiting for tests to be done. He may have to commence medication to reduce the seizure activity in his brain. We await doctors advise.

They may also address his button. He has a temporary one in at the moment which seems to work fine. It is just not as convenient.

June 24, 2001 - Samuel's button popped out by accident last Thursday and he was rushed to hospital by ambulance. He is fine and had a temporary one put in. He has an appointment in two weeks.

Fortunately his parents were more traumatised than he was. We were totally freaked out to see hole in our boy's belly. All is ok now however! It's just not the way you think a quiet Thursday night should go.

On a good note, the neurologist got the previously lost test results and feels that the seizure levels detected are not at a dangerous level. Bit of a relief.

June 19, 2001 - Samuel's "button" operation has gone well. He came home on Thursday night. He receives a formula through a tube connected to his stomach at night via a pump. It is additional thing however and greater burden for Karla however the benefits outweigh the extra time needed to administer feeds. The big advantage is drinking. We can give drinks of water and medicine direct to his stomach.

Previously this has been a major problem for Samuel. He is still in discomfort and has woken up crying at night. (more like screaming in pain) We are keeping a close eye on this. It may take a few weeks for his body to adjust. As a result he is off school for a little while until this settles.

Karla is contacting the nurse who consults in this field today. We are confident however that he will get through it. We are a little tired at the moment. Five years is a long time to do with out regular sleep. People have much worse though.

April 2001 Update

Yes after many tests Samuel has Osteoporosis. We were very upset but what can you do? Perhaps it was due to his difficulty in eating or his obvious inability to walk. Walking puts weight on bones strengthening them.

We probably will have to get a button to get more food in to him. This is a small tap connected to the stomach via the belly button so we can get much more food in to him. The tests showed he had difficulty swallowing so he does not like eating very much. As a result he is skinny. (Pretty much what we knew) The tests were valuable in seeing where he was at.

We just need to book him in. It is a short procedure but it is one more thing Karla has to look after. After all you have to keep it clean for obvious reasons.

We have another friend who has the same thing. He seems to be growing well although his disability is not quite as serious. Still this is not the norm so it is very difficult for parents seeing other kids eating, drinking and running around.

Our little Aidan is almost two and is perpetually in motion. He is has no problem eating other than the normal child stubbornness.

We however are not down and out as something can be done. Let me tell you straight that if it were not for our relationship with God and the support a church community provides I would be an alcoholic nervous case.

We are can not live alone. If you are reading this please do not allow your problem to isolate. Although people with out kids with Cerebral Palsy have little idea they can provide us with friendship and support. Do not get angry at them because they do not understand as we all were there before.

By the way his treatment with baclofen is been slightly reduced as Samuel kept getting "high". This has also caused possible seizures. He used to have them when he was quite young. It is a potential side effect of the drug. He sometimes laughs all night and does not sleep for days eventually crashing out quite suddenly. The laughing is funny at the beginning but believe me after several days it is worrying.

Several people have said. "Can I have some?" after being told he is slightly high. Fortunately after reducing from 3 per day to half twice and one in the morning it is better. It sure helps his stiffness although not entirely.

August 2000 Update

Samuel's TV special (not really focused on him but we like to think it was) did go to air in June and was fantastic. Although it was only a few minutes the whole series was a great success. Special thanks to the presenter Leigh who also attended our dinner.

Speaking of the dinner. It was an overwhelming success. We could not have dreamed for a better outcome. The auction raised some good money. Thanks to local business and sporting clubs.

We ordered his wheel chair from Denmark this week. It is called the Panther and fits well in to out boot. (our wagon was nearing death so we were forced to get a new car). It will be 8 weeks or so. What a wait for the 21st century of technology! We can go to space but it takes months to get a wheel chair from the other side of the world. The First Fleet to Australia could probably get here quicker 200 years ago.

Samuel is currently in a botox study at the Sydney Children Hospital, Westmead Sydney. It is giving his left arm greater movement and they are teaching Karla quite a bit in the process.

It has been very hard on Karla. It is a great burden is on her. We drive to my work Tuesdays. She transports Aidan to her mums and then on to the hospital with Samuel and the tilt and space chair. It is a very awkward piece of equipment. It does not fold up at all. Thankfully the wheel chair will replace it.

Samuel has basically been accepted in to the school. It is the best school in Sydney and has everything he needs.

Samuel has also started a second day at Preschool which is a miracle in its self. The funding ran out and could have been months but it some how came through. This will prepare him for school full time.

Karla will get a break. A well deserved one. Anyone who just thinks she sits around all day is gravely mistaken. She is always about helping others and looking after the two juniors. Hard work! Very Hard indeed.