Welcome to the L’il Aussie Prems February / March 2012 Newsletter.
Firstly, our apologies for not producing our newsletter for the past couple of months. It has been a really busy time for the LAP community, but we are all back and firing on all cylinders.
As you are probably aware, we are busy preparing for and promoting our second “Wear Green For Prems” event. This is coming around quickly on the 4th April, 2012 – and we are hoping it is going to be as successful as the first.
To show your support, please visit the Lil Aussie Prems Shop, and purchase a green band. We have a variety of different styles, as well as our *NEW* Glow in the Dark wrist bands. There is only a limited amount of the Glow in the Dark bands, so be quick to get yours. Also, take the time to peruse our other merchandise, of which we add to continuously.
If you have visited our site recently, you will see that the new forum is up and running. There have been a few changes, but it is still an informative and fun place to seek information, support and friendship. If you are a new member, please remember to introduce yourself and your precious family. And do not forget, we also enjoy lots and lots of photos of your precious prems. If you are a long-time member, come along and say hello and lets continue to grow this vibrant online community.
We would like to offer congratulations to our members and their children who have celebrated their birthday in the month of February – Steven (32+3), Michelle, Mitchell (28w), Jackson (33w), Lee (24+3w), Aleilee (33w), Marian, Bianca, Amanda (f/t), Curtis (f/t), Noah (36w), Karli (29w), Kallum (29w), Kelly, Kimari (27w), Vanessa, Kathryn (finisterre), Ava (25+2w), Sandra, Brendan (30+1wy), Leon (f/t), Nigel (Brendan’s Dad, Smily), Krystal (TripleTime), Jacob (36w), Jessica (karennallan)
And in March we have Jackson (36w), Isabelle (25+2w), Jodie, Lou, Cazzy, Hunter (35w), Ava (25+6w) Willow (30w), Melanie, Hayley (29+2w), Byron (23w,), Isabella (37w), Ronan (27w), Natalie, Lucy (Big D), Ethan (23w), Ava (23w), Victoria (*Beema*), Matilda (26w), Mitchell (37w), Danielle (26w), Hayley (FT), Karen (karennallan), Charlie (27w), Quinten (31w), Elbereth (36w), Ronan (27w), Hannah (30w), Charlotte and Oliver (25+6w), Emily (29w), Jenna (FT), Talia R (27w), Loki (35w), Taj (32w), Melissa (Musolissa), Jonty (26+5w), Kris (34+4w), and Erin (26w)
To everyone else who celebrated their birthday in February or is celebrating their birthday in March Happy Birthday! If you or your child’s birthday is not included but should be please reply to our birthday thread on the forum so we don’t miss it next year!
Our newsletter is packed with lots of exciting things this month including our information on our Green for Prems Day, our online shop, premmie celebrations, information regarding sensory issues, latest birth announcements, premmie articles, latest forum topics, and of course, our premmie of the month. Plus lots, lots more…….
We hope you are having a great month.
You can also view our newsletter online.
Wear Green for Premmies Event
Our 2012 “Wear Green for Premmies” event is being held on the 4th April 2012. We are very excited here as the day rapidly approaches. Last year’s event attracted almost 20,000 people, and our site was awash with many photos posted of families & friends wearing a sea of green, and 1000’s of supporters wearing our green premmie wrist bands which are available via our website. It also raised much needed funds for five different support groups, all which support children. With the amazing support from all of you in 2011, over $2,000 was donated to these support groups, and we will be donating to further groups again in 2012.
For all our Facebook members out there, in mid-January our Facebook event page was launched in the hope to reach as many families as possible. We have over 5,800 already ‘attending’ the event. Please share the page with your family and friends and help spread the word of the fantastic work being done to raise funds for different groups that benefit premature babies and their families. We are hoping that this year’s event will be just as big! We will also be donating 100 x premmie gowns to hospitals in the next week. It was a massive task completed & kindly donated by Sewing Mummy, Karen Cuthbert.
Our green wristbands sport various premmie support messages that were chosen by and voted on by our members. You are able to buy these bands & other items including newborn & premmie beanies (sewn by one of our fabulous members & her mum) via our online shop. If you also wish to fundraise on the day, please do so in support of the National Premmie Foundation.
So come and join us on the first Wednesday in April, as we celebrate our children. If you have given birth prematurely, know a relative or friend that has experienced the NICU/SCN rollercoaster or lost a precious angel after being born too soon, then please join celebrate with us.
Emma’s Appeal- UPDATE
You will probably remember the appeal that was being run last year for Miss Emma. Through the generosity of our members, and members of the general public, Emma was able to attend a specialist feeding program in Denver, Colorado. Ass a parent, you would travel to the ends of the earth for your children – and this is what Emma’s family did to give her a shot at a normal life.
After spending five weeks in Colorado, Emma is now back home and attending school as a prep. She is still not eating, but has made massive steps toward that ultimate goal. You are able to follow the progress made during her time there at her blog Feeding Emma.
Emma was officially diagnosed with “Sensory Processing Disorder”. This manifests itself in many forms, and as parents of prems, a lot of us are aware of the issues surrounding this disorder. Over the following months, we will be bringing articles relating to Sensory Processing Disorder, or SPD, and hopefully start raising awareness of how common this disorder is, in not only children born premature, but also full-term babies.
Emma and her mother recently appeared on television to start promoting SPD. Click on the image below to view the video. We were also mentioned on the program! Very exciting.
If you wish to learn more about the centre attended by Emma and her family, and the work they do regarding SPD, please visit The Star Center.
Proud supporters of our Wear Green for Premmies Day
Due to the over-whelming response for bands, this year we have been lucky to be given the support of two businesses to help sell our premmie wrist bands.
Please visit Bellabee Candles & Mums Bubs & Gifts below.
Latest Birth Announcements
We all know how special the birth of a premature baby is and we welcome you to add their birth announcement on our website. We cherish all angel babies here at L’il Aussie Prems and invite you to announce the birth of your precious baby.
We encourage parents, grandparents, friends and relatives to submit a birth announcement. You are welcome to add any additional information in your announcement and we all look forward to celebrating with you.
Thomas Alexander Reece
Born on the 4th February 2012 at 28+3 weeks gestation weighing 1225 grams
Born 7th February 2012 at 28+2 weeks gestation weighing 1070 grams and measuring 37.5cm
Born 14th February 2012 at 26 weeks gestation weighing 740 grams
Born on the 15th February 2012 full-term weighing 8lb 4oz.
Born 17th February at 33+1 weeks gestation weighing 4lb4oz and measuring 40cm
Born 20th February 2012 at 33+6 weeks gestation weighing 1788 grams and measuring 41cm
Born 24th February 2012 at 33+6 weeks gestation weighing 2188 grams and measuring 47cm
Born 24th February 2012 at 35 weeks gestation weighing 2155 grams and measuring 45cm
Born 28th February 2012 at 28 weeks gestation weighing 680grams
Born 29th February 2012 at 24 weeks gestation weighing 1.38lb and measuring 31cm
Visit our website if you wish to submit your premmies birth announcement details.
Supporting Team Hayley K
Hayley was born 16 weeks early and spent her first few months in neonatal intensive care. Thirteen days after her birth, she contracted an infection that went to her brain and resulted in Hydrocephalus. Less than a year later she was officially diagnosed with cerebral palsy.
Hayley is 2 years old and is the youngest of four who loves Elmo, Dora and playing with her siblings. They raise money for educational and therapy aids and special outside play equipment so Hayley can play with her family with ease and safety but their current appeal is raising money to make their ‘bus’ wheelchair accessible.
The family are members of The Developing Foundation Inc. and participate in their fundraising programs where the proceeds of the funds raised goes directly to Hayley’s needs.
Hayley’s parents have a vision for Hayley is to be able to live independently and to contribute to society. The most important lesson Hayley teaches us is that no matter how bad things may be there is never a reason to not smile.
If you would like to help this wonderful family please visit their Facebook page or you can make a donation online.
What is Sensory Processing Disorder
As most of us know, processing sensory information is a daily activity. It occurs without us even being aware of it. We are all constantly managing sensory information from our sight, our hearing, tasting, touching and smelling. Most of us are born with the ability to receive and process these sensations, and the ability organise them into correct responses such as reacting to a loud bang, or the smell of something burning. Sensory Processing Disorder, or SPD, exists when the brain cannot organise and manage the sensory information that we are receiving. This information comes in the form of sound, touch and movement.
But are you aware that there are actually eight senses in which we rely on getting our sensory information? These are touch, smell, taste, sight, hearing, balance, body and awareness. To be able to “sensory process”, we need to have the ability to organise and interpret the sensory information we receive from all these eight senses. This should be an automatic thing, but children who have SPD cannot do this. Their brains interpret the information they receive differently, and thus they react differently. For most people, this process is automatic. Children (and adults) who have SPD don’t experience this process in the same way. SPD affects the way that their brains interpret the sensory information they receive.
So with this information, it is easy to come to the conclusion that that Sensory Processing Disorder is a complex disorder of the brain. What this means is that children who have SPD can misinterpret their everyday sensory information. Due to the lack of, or overload of information, they may seek out intense sensory experiences or they are unaware of what sensations they should be feeling and what other people experience. It also goes hand in hand with sensory-motor issues such as poor muscle development, delayed motor skills, clumsiness and stuttering.
So we can say that the term “sensory processing” includes:
- The ability of our body and brain to take in information through our eight senses: the basic five (touch, smell, taste, vision and heading), plus the “hidden three”, proprioception (sensations of body parts in relation to each other), vestibular (sense of where body is in space relative to the earth’s gravity), and interioception (sense of internal organs)
- Our ability to organise and interpret the sensory information we receive; and
- Our ability to make a meaningful response to the sensory information coming into our brains.Of course, with something as complex as SPD, it does not come in one form, but in different variants. There are the children that are over-responsive, those that are under-responsive, and those that crave sensory input (sensory seeking). It also appears in something called “Postural Control Disorder” and / or “Motor Planning Problems”. Let’s have a look at these.
Read the full article here.
Scrap For Yaz Events
Do you have a passion for scrapbooking and would like to help provide a heartbroken family with a little hope?
This March our good friends at Yasminah’s Gift Of Hope are hosting their annual event ‘Scrap For Yaz’ with locations in NSW & QLD being held on different days between the 23rd & 25th March. They need your help to create unique hand decorated journals for a family to record their precious memories and hold some very special keepsakes.
Scrap For Yaz is FREE to attend. They supply the journals and ask you to bring a smile. You don’t need to be an experienced scrapper either! The youngest person to decorate a journal was 10 years old and it was a beautiful journal that made an incredible difference to a family who lost something so precious to them. Their child….
You can also hold your own “Scrap For Yaz” with friends and family at home, just email email@example.com for more information.
Please visit Yasminah’s Gift of Hope Facebook page for the latest updates on event details.
(see location details for exact dates)
Premmie of the Month
Name: Elliot Andrej Cicimov
How was Elliot born? Emergency c section as he was breech
What was his gestation? 28+3 weeks
What was his birth weight? 1159 grams
How long was he in hospital? He was in hospital for 83 days
How was his journey whilst in hospital (any complications)? is journey was not too bad. He did get a stomach bug (infection) once or twice but no major complications, of which we are very thankful.
Does Elliot have any ongoing health issues?
Not as far as we know, he seem very happy & healthy, however we are still seeing a paed every 3 months as he only puts on weight very slowly. He now weighs 5.5kg.
(same weight as my 10 week old niece)
How is Elliot now? WONDERFUL, he is almost crawling, started teething at 4months (now has 2 bottom teeth & top two are on their way) & he is very vocal all the time (gooing & garing at us)
What has been your proudest moment since Elliot was born?Oh my gosh there have been so many, the couple that are most memorable would be the day we brought him home from the hospital, 17th sep 2011, i was so over the moon I cried happy tears for days. Also the day he started rolling over (at about age 4months = 1 month corrective) but we regard every day of his life memorable as he truly is the light of our lives now. We can’t even remember life without him.
The emergency birth of Gracee took place in Orlando, Florida, while her parents were on holiday. Their 2 boys, Jack and Will (age 3 and 2) are staying with their grandparents in Australia and have not seen their parents since they left. Neither of them have met their baby sister Gracee.
Gracee, born at 24 1/2 weeks, weighed only 1.1lb, and was 20cm long. Both mum and Gracee are unable to leave Orlando until Gracee is “full-term”.
Gracee’s parents had organised travel insurance but the agency has deemed that the pregnancy is a ‘pre-existing condition’ so they have no financial support available whilst overseas. Gracee’s hospital bills are expected to exceed $100,000.
If you wish to help this family please visit their Facebook page for updates and to offer support whilst their precious little girl continues to fight so she can come home to her family.
Rowville Premmie Playgroup (Victoria)
Premmie playgroups are a great opportunity for parents with premature babies & children to have a cuppa, chat and meet other parents in a similar situation.
Knox Premmies playgroup located in Rowville (Knox Council area) invite new families to join them. Most of those families attending are members from our forum so it is a great opportunity to meet one another.
Time: 10am – 12pm
Dates: Friday – Fortnightly (16th & 30th March 2012 etc..)
Address: Rowville Community Centre (Fulham Road) in the Tennis Pavillion room (blue/grey building) next to the tennis courts
Cost: Free to attend but you must be a member of Playgroup Victoria for insurance purposes. Forms are available at the playgroup.
Further Details: Please bring along toys for your children to play with. Coffee and tea is provided.
Each playgroup aims to provide support & friendship to families who truly understand the journey & we hope you can bring your kids along for a play.
Please contact us if you have any questions firstname.lastname@example.org
In the later years…
As our prems grow, so many new milestones are reached. Each newsletter we would like to feature not only our “premmie of the moment” but also a “later years” premmie (approx 4+ years old). Families can gain insight and inspiration of the journey ahead and learn about the steps families face years after their babies came home from hospital. Our children all travel different paths but show the same courage, strength and resilience we all know & love about them.
What was his gestation? 27+3 weeks
What was his birth weight? 1140 grams
How long was he in hospital? 110 days
How old is he now? Just turned 6 years old
Has Ronan reached all the milestones for his age? No but we have been attending therapy for years to help with his speech delay etc..
What sort of therapy services has he attended & why? Ronan was diagnosed with Sensory Processing Disorder at 2 years old, had an 18 month speech delay when he was 4yrs old, delayed in fine/gross motor skills & low muscle tone. He has seen many therapists over the years including speech therapists, psychologists, occupational therapists & physiotherapists. He is having an operation this Friday for his 2nd set of grommets. He currently has a 30% hearing loss due to fluid in his ears.
What sort of things does Ronan do that is SPD related?
Ronan “sensory craves” and after all of these years is finally learning how to self regulate himself which has been the hardest part to learn after all these years. He is also learning how to stay focused on a task for longer than 5 seconds & music always calms him down. He was not toilet trained until he was 4.5yrs old and he has just started sleeping at night without a nappy at 6yrs old. He also constantly wants to eat. We believe that this is another way he has learnt to cope & keep himself balanced.
Does he still attend therapy? No because he is now at school. I will be honest, it is terrible that just because kids start school it doesn’t mean that they are “cured”. Ronan will most likely need therapy for many more years to come but he can no longer attend early intervention because of his schooling. Everything must be privately sourced with no support or funding available. We have decided to take a year break from his therapy so he can put all his energy into school for now, then we can reassess later down the track.
When did he start school? Ronan was held back a year from starting preschool so he didn’t start school until just before his 6th birthday. It was the best decision we could have made and the progress he has made in just the 1st term of school and truly amazing.
Have their been any issues since starting school? There have been a few. Last year he took the IQ test to see if he was eligible for an aide in his class room. Sadly he was just over the cut off score so he receives no aide support. Also for the first month everyone struggled to settle into the new routine so i was picking him up each day at 1pm because he was becoming overtired and the teacher was struggling with him. He was becoming distracting to the other children and even with “time out” he just couldn’t sit down and focus. After a month we decided to extend it until the usual 3.30pm finish and i am pleased to say that he is doing SO well. He is contantly receiving stickers and stamps for being so good and each day his teacher is telling me how well he did. I was starting to become quite withdrawn and felt like i had no where to turn in supporting Ronan at school but he was the one who just suddenly before our eyes took charge and settled himself in school life without hesitation. We will be forever thankful to his school for their amazing and ongoing support towards his special needs. He is now reading to us at night after the first term and wants to go to school even on weekends!
What advice do you have for other premmie parents? The road may seem long at times but i promise that just like the NICU/SCN experience they turn around and suprise you when you least expect it. Watching Ronan walking into school on his first day was a moment we will never forget. We felt so proud of who he had become and how much he had achieved over the years to get to where he was at that specific moment in time of his life. Something we will always cherish & remember.
Let us know if you would like to share your prems journey next month!