EMAIL TO EVERYONE SPECIAL
Firstly, were very sorry we haven’t been good at communicating, last years issues with Noah were very hard to talk about. I tried to keep my blog up to date so people knew what was going on but I know lots of people were left out or didn’t find out stuff for a long time. I really apologies for this and hope now we have better idea of Noah’s diagnosis communicating and accepting it will be a lot easier. I hope this email also gives you the information we might have forgotten to say. As time has gone on were doing much better with accepting and communicating. I guess the feeling of being alone and ashamed has gone. We thank everyone’s constant support and love for making us realize that.
PLEASE feel free to email, call, knock on the door, yell….. contact us anyway because sometimes we forget who knows and who doesn’t (must be the 4 kids yelling constantly makes our memory go weird) We are happy to discuss stuff and want everyone to feel welcome to know what’s going on..
I cannot thank you enough though for the support you have given us. We know we had a rough time and even though we didn’t want to talk or accept Noah’s issues everyone still were there for us. We cannot thank you enough for this. At the end of the day was everyone support which made us keep going.
Our run down:
Noah: was born 21/4/09 at 30 weeks and 1 day weighing 3.1lb (1450grams). He was in hospital for 5 weeks until he came home. At 5 weeks we found the hazes over his eyes and he was diagnosed with PETERS ANOMALY. After this we asked for tests for PETERS PLUS SYNDROME (a related syndrome) He had a heart scan which showed his left ventricle was enlarged. He had a brain ultrasound which shows he has 'dead' patches where his brain doesn’t develop normally (right side weakness) and he has Failure to thrive (where he doesn’t grow) and he has lack of muscle tone due to his brain issues so they made the diagnosis he has Peters plus Syndrome. We are due to see a genetic specialist in 2010 to confirm this and work out the risks to the other kids and family. Very unfortunate both Aaron and I are carriers and gave us a 50% chance of having a child with PPS.
Noah is at the hospital 2x a week for appointments to help him with his issues. He currently weight 5.1kg.
So in 2010, Noah will have to go under a General Anesthetic to see how his eyes and vision are. At this time he will also have an MRI of his brain to see how affected he is by his abnormalities. Noah's specialist Professor Haslam will be handing him over Dr Conway, a paeditirican from Royal Melbourne Hospital coming back to WCH. He has worked with kids with Peters before. He is also able to see us long term and coordinate our care during admission unlike Prof Haslam. Noah will also be doing intense Physio (for his muscle development and strengthen his right side), OT (teaching his to use his eyes to the best possibility and using hearing and touch as primary interaction) speech pathology (to work on this eating and talking) neurology (brain) cardiology (heart) nutrition (work out increase to make him grow) genetic (genes)
Keeley turned 3 in September and had a difficult year with lots of issues surrounding her development. In November Keeley told us she was being sexually abused by her mothers boyfriend. Families SA took her out of her mothers care and put into our care. Child protection and the police are also involved and so far she has told them all. Were now waiting for the lawyers to open so we can go to court to apply for full custody. As much as were being 100% supported by child protection, families SA and SA police were still very nervous about her returning to their care. So we will see what happens. Is very stressful but were managing.
Jacob turned 4 in October and spent his first birthday away from me (with Micahel) he had a great time there. He had his 4 year old hearing test which came back pretty poor. He saw an ENT and is due to have grommets put in on the 12th of January. This should half his issues if not he will be fitted with hearing aids in February. Jake also changed child care centers this year to a local multi cultural center. Has been the first center to ever explore Jake behavior issues and find what he is good at. We now know Jake is very talented with puzzles and does 200 piece puzzles without help this has also decreased a lot of his frustration. Were very proud. In February he is due to start Kindy and Valley View which is a speech and language kindy for kids with hearing impairments. The DECS have been wonderful and organized speech pathology for him too.
Rachel turned 6! Can you believe we have a 6 year old? she finished reception this year and is loving school. She is doing extremely well with her reading. Her confidence has gone thru the roof and she is riding with Aaron and real lot. She is loving her sports now and loves to compete. She is looking forward to next year being in year 1. She has made some wonderful friends and enjoyed growing up and becoming interested in fashion and shoes (no idea where she gets that from?)
Aaron has been doing his lawn mowing round. He has quiet a few clients now and enjoying working for himself and the flexibility around the families needs. He has taken to riding his bike to de stress. In 2009 Aaron, Geoff, Paul and Mike did the amazing race to raise money for Noah's vision charity. They did very well and raised over $4000 and had a great time. 2010 I am sure the boys (or girls) will do the race again.
Kristin last year from me has been lots of doing things for Noah. He came off his Naso gastric tube in October which meant I could stop expressing 5x a day and breast feed him. Due to his condition he needs constant monitoring and attending to the hospital. He has had 3 admission in his short life. Luckily Aaron has been able to look after the kids while I have with Noah. While juggling life I have ‘my time’ but doing my Cert IV in Assessment and Training. This will mean I can teach nursing. I do I external part time so I fit it in while Noah is asleep. I also have been attending mums groups to do with NICU babies, babies with disabilities, breastfeeding and vision impairment groups. Has been a good support system for us and done lots in teaching us how to best deal with our new life and feel less alone.
Until now I thought bad things only happened in movies but now I know everyone has rough patches and it makes you stronger and more wise. We have met the most wonderful people thru our journey and life long friends we have made. Most surprising of all is the fact 99% of support for new people comes from the internet, usually Face book. The Peters anomaly group and Peters Plus Syndrome groups are wonderful and so nice to meet other parents with kids with special needs. Being that Noah is the only child in Australia and Peters Plus and one of 3 in SA with just Peters Anomaly we dont get a lot of information. The internet has made the world so small which has been wonderful for us.
As for 2010 we are hoping for a much more relaxed year with less “days of our lives” times. We want to thank everyone for the support, love, thoughts and prayers you have given us were very thankful.
We hope 2010 is a wonderful year for you and is safe, healthy and exciting year.
Will keep you posted on what is happening
All our love
Kristin, Aaron, Rachel, Jacob, Keeley and Noah
Noah with Olivia (11 weeks) his God sister
Noah's developing so much more than expected. Although he still only 5.2kg he rolling around to get things. He can grab with both hands but prefers the left. He is focusing on small objects like a fly on the floor. He follows movement of his hands and objects. He can get up on his knees and slightly crawl. His head control is much better and has less blue episodes. I have requested a new physio for Noah I want someone who is easier to see and gives me ideas. Even after his brain scan said he may get cerebral palsy I am not seeing an evidence at the omen. He has learnt to cough and grunt when wanting attention. He listens so well and any slight noise he knows exactly what’s going on.
Overall very proud and relieved with his development.
Noah has become very cuddly too. Kids are loving it and so are we. kids call him Noey Joey most of the time cause he is a baby Wombat. I have a terrible feeling he is going to grow up thinking he is not human....
