2011 review xx

YEAR 2011

Year started with a normal hot summer has been a slow year and lots of negatives and loss.

NOAH

Noah started the year with an oximetry test and oxygen is going very well for him. Has stabled his growth and increase his development. In May Noah had his adenoid surgery which helped his snoring a real lot. Although was so many months ago were still not sure if it has fixed the issue. His results from his last oximetry study should be in for January.

Noah 2^nd birthday was a blast he is so much more interactive he had so much fun with the kids. Were shocked how much he has grown and how strong and smart he is.  

Noah has his usual ANZAC day parade but this time he walked with Aaron.

Noah's speech has come in leaps in bounds by mid year he had a few words and after a Vit D boost he is now copying words. Still very difficult to understand but were trying to teach his basic sign this will hopefully help us to understand him but also deal with the issues we have had with his frustration and severe head banging.

Noah has started child care now and loving going. He is in the toddler room and socializing really well. His speech has increased and his ability to understand some more directions. Very proud of our little man

KRISTIN

Decided that it was time to go back work had been 9 months since surgery and boredom and Noah were driving me nuts. Seemed like a easy idea but had to get the OK from a OT first with a function evaluation test. Took 3 hours to take the test and the results were not brilliant. With no luck of anyone hiring me I went to an agency Cream of the crop. During the interview for an RN position they asked me to apply for trainer in their RTO. I hurried through my Cert IV in TAE and was employed as a trainer in Aged care and disability. First lot of students were a handful but I enjoyed teaching. I was then chosen to develop and deliver Community Services to SERCO Inverbrackie Detention Center. Was a brilliant learning experience. Unfortunately November there were no more student so I was put on LWP and still have no work. I started back at Kensington RCF in December as a treatment manager 3 days a week but I really miss training. 

IN April Rachel and I joined the local netball team the Gemini’s. I play in the seniors competition and although a few close calls have not hurt myself and feeling much more confident with my body.

AARON

Aaron now become at stay at home dad with me working for most of the year full time. He has done very well and midst making the house work started to study his Cert IV in Disability. He completed the certificate and was employed at SCOSA as an access worker. He has remarkable to get through the hard study, home expectations, Noah and now work.

RACHEL

Rachel started the year in year 2 at school and as always flew through every challenge thrown at her. She started netball also and has really enjoyed the sport she is very eager to play more and has made a huge contribution to the team.

JACOB

Jake has flow through Reception shocking everyone who his ability for math’s and reading. He did extremely well until term 4 when his grommets fell out and infection started again. His hearing is very low and is due to have surgery next year to take his adenoids and put grommets back in. Jake had his 6^th birthday at HJs with 6 friends and had the best time. Seems weird my baby boy being so grown up now he lost his first tooth

KEELEY

Keeley started school in term 4 and was cradled by Rach and Jake into the life of a school girl. She has done very well in her education but has also been struggling with Alison and life.

FAMILY

We are so proud to announce the arrival of Casey Paige 17/7/11 daughter to Kate and Todd who also got engaged this year. Mum, Dad and Casey are all doing well.

Mum and Dad came back to Australia then left again for a quick holiday in Thailand. They have been driving up and down the coast to visit us. Liam and Jess made a huge decision and moved to Australia from UK this month. Cant wait to see them and meet Jess. Ryan came down for Xmas after not seeing him for so many years to see his 2x in one year has been so special and I know Mauro would have loved to see us happy reunited again.

Very sad news was Pop (Robert Pocock) died peacefully with his 2 daughters and grandchildren by his side. Was a quick death and I was so privilege to have been there with him and be part of his life.

Extremely sad new was my cousin Mauro Amato drowned at 31 years old was at the same time Pop died. Was an extremely tragic time for my family and Ryan and Liam flew to Australia for the search and funeral. I was so happy to see my brothers but so sad to loose my cousin. Has really affected the whole family and I sent my love to Aunty Dorothy and Uncle Corry.

So up and down year been some hard finacial issues and loss and grief but so much joy and happiness as well

Looking forward to 2012
Love Aaron, Kristin, Rachel, Jacob, Keeley and Noah

The very sad side of having an IDchild

Noah the head banger!

Is not funny in anyway but Noahs got some behaviour issues. Due to inability to speak when he gets frustrated he smashes his head on the floor out of frustration and wont stop. He has a permanent bruise and egg on his forhead.

Beause with PPS he feels no pain at all he doesnt realise the extent of the damage he is doing.

Yesterday we ended up at the GP after he hit is so hard he split the back of his head.

We have Cando coming out Tuesday to try and work out some sign langague for him so he can learn to communicate. We also have the OT to work out his sensory complications which is normal for a child with VIP as the use other senses to combat their site. going to get a referal for a helmet to be made.

Has become a serious issue now and is so embarrising for us all.



Doctors 2011

Prof Haslam - neonatalist
Dr Brain Conway- paed
Dr McGregor- Gentitist
Dr Fairchild- Endo
Pr Kennedy- Pulmonary
Dr Deppa T- Optomology
Dr Schembrie- ENT
Dr Wong- GP
OT- Adele

milestones

5 weeks- 2kg

14 weeks- 3kg

19 weeks- Sucked thumb

20 weeks- Smiled

23 weeks- 4kg

23 weeks- Rolled Back to Front
24 weeks- Laughed


25 weeks- slept from midnight to 7am!

25 weeks- started solids

26 weeks- Rolled Front to Back

7 months- 5kg

8 1/2 months- crawling

9 months- sitting assisted

11 months- Said Dad- 2 teeth

11 and 1/2 months- 6kg

12 months- blows raspeberries, kisses noises, sitting


12 months- Says Mum

13 months- Walks with walker, claps hands

14 months- 4 teeth

15 months- 7kg

19 months- 8kg

25 moths - kg

25 months- Adnoid Surgery

28 Months: Says shoes, hey, yay- weight 10 kg

2.5 years- 11kg,

Diagnosis

• Peters Anomaly - Peters anomaly is a rare form of anterior segment dysgenesis in which abnormal cleavage of the anterior chamber occurs. Involving the central or entire cornea*
• Failure to thrive- When not more precisely defined, the term often implies pediatric usage. In MeSH, the term is to refer to an infant or child. In children, it is usually defined in terms of weight, and can be evaluated either by a low weight for the child's age, or by a low rate of increase in the weight. * 
• Periventricular leukomalacia (PVL), or white-matter injury is a form of brain injury characterized by the death of white matter near the cerebral ventricles due to damage and softening of the brain tissue
• Ventricle dilation
• *Hydrocephalus- "water on the brain," the "water" is actually cerebrospinal fluid (CSF) — a clear fluid that surrounds the brain and spinal cord. The excessive accumulation of CSF results in an abnormal widening of spaces in the brain called ventricles. This widening creates potentially harmful pressure on the tissues of the brain. *
• Peters Plus- Peters plus syndrome is an inherited condition that is characterized by eye abnormalities, short stature, developmental delay* (recesive glycsosylation defect)
•   Endoscopic Dacryocystorhinostomy - A rigid endoscope is inserted into the nasal cavity to the lacrimal sac via the lacrimal duct to explore and confirm the nature of the obstruction. The nasal mucous membrane is incised and removed, to allow for the creation of a window on the lacrimal sac and upper nasolacrimal duct. A portion of the lacrimal and maxilla bone is removed and using a blade, a vertical incision is made in the lacrimal sac and nasolacrimal duct. Silicone tubes can be inserted to assist long-term patency.
• Low Oxygen Levels when Sleeping 0.5Lpm at night
• Short Stature (LOW IGF1)

• Vit D deficency

2 and half

Noah now weights a giant 11kg and in the 3rd % for his weight and 1% for his height.

O2 going great and made him sleep much better

Has now started child care 2 days a week

Vit D deficient

Little to no talk- babble

Understand things well

Our little Champion Wombat

Where did the time go!

Noah hit 10kg this month. He learnt to talk to say : hey, up, shoes, he says noises which shows: Rachel, Jake, Keeley. thank you, drink

Noah has become quiet a agro boy yelling and screaming. He is very clever learning how things work. His vision is going well and besides when tired can do most things and has good symatry with his strength. He has started child care and loving other kids. Can push pull and yell like any other 2 year old... SO PROUD

Peters Plus Sydrome. Is a genetic disorder which features partial corneas or damaged so Noah can only see through small parts in his right eye. His left eye has minimal vision and has no tear duct so his eye weeps all the time. He can not handle glare.
The sydrome also can affect the brain where Noah has 20% which is damaged or not there this affects his right side giving him weakness and issues were get to understand luckily their first diagnosis of Cerebral Palsy didnt occure.
His heart is not normally shapped and often can go into arthymia causing blue episodes or seizures. The sydrome also causes growth retartdation and kidney faiulre his left is the poor one.
Genetically his DNA is not not structered properly meaning his development is delayed and brain issues are common like epilepsy, tumors and bleeds. He has had a brain bleed and has scaring affecting his speech.Noahs nose and head is not formed properly meaning he has to be on oxygen and may never come off it.
He is one of 14 kids in the world we know of and none in Aust and genetically we have 1 in 4 chance if we were to have another child and most likely would end up with more miscarriages or prem birth.
Yet he is the happiest child in the world. His sibblings have made him strong and determined and taught him things we never thought you would learn. Cognitively he is ok knowing how things work but due to brain damage also forgets things quickly.
He is stubborn, determined and joyful and knows nothing of his special little life.
Adele from Cando comes 2x a month so do assessments and work on skills for Noah to increase his use of his eyes and his development. Currently he weight 10.4kg and development is a 15months old physcially and mentally. Noah also attend little learners playgroup for blind children. Cando provide us with councelling, services for noah and activities like zoo trips for the other kids. Noah is also supported by disabilites SA, mytime, WCH, clown Drs, Star light foundation, CarersSA, Julie at Wendys Ingle farm....
we have a very supportive family and friend network and have met some wonderful people thru FB groups and 5am coffees at the front of the hospital. We thank everyone and organisations who support us.
my biggest thankyou goes to Aaron, Rach, Jake and Keeley without us you guys Noah would not be where his today xx

Hosp Admission- surgery - adnoids

Lovely Flowers from Aaron to me for Noahs surgery xo

 Pre Surgery fun in the toy car

 Posrt surgery sleeping. Went well Adnoids removed..

EASTER 2011- family pics

ANZAC DAY 2011

NOAH is 2!

We say goodbye~ Mauro Amato and Robert Pocock 2011

Tragety struck for the family who Mauro went missing while fishing in VIC and Pop (Robert POCOCK who died 5 days later) May you both live in our hearts and thoughts 4EVA

**********

MAURO AMATO

5 days later he was found and brought home and burried by his partner, sisters and parents

and all his cousins from all round the world.

(letter was held in his shirt pocket from us)

Dear Mauro, Been a week today since you passed away. Been really hard for us but so happy they found you and you can come home.

I cannot imagine life without you, i was so lucky to have you in my life and so close to us.

I will never forget the fun we had as kids. The hours we spend playing Kings and Queens and building cubby houses. Your engernerring skills were far better than mine as you cubby still stands.

I want to thankyou for  looking aftrer me in high school, i loved seeing you  every day and the fun times we had the CBC and SMC friends.

Thanks for coming to my weddings, for piercing my belly button, for a life time of making me laugh till I wet myself.

Your too young to have left this world, you were always there, a protector for me and boys. PLease continue to watch over me. You will never be forgotten or not bring a smile to my face, even writting this letter reminds me of the gigglingi n class with the letters you wrote.

Im sorry i didnt come to your memorial.... but today we do our best to be with oyur famiuly members still here and grieve and rejoice in your life

I PROMISE to take care of Aunty Dorothy and Uncle Corry and keep as close eye on Nicole and Deanna. Being 2nd eldest I will do it with your humor and caring nature.

I dont want to stop writting. I dont want to loose myself in sorrow. So keep me smiling please, cause everything reminds me of you.

Take care and fly free with the people who loved you past and present.

Your COUSIN and BEST friend,

Kristin

**********

BOB POCOCK- POP

We are so sad to say that 'POP'= Robert Pocock Died. A brillaint Grand father to Aaron and Great Father to Noah and the other kids.

Miss you

POP

POPs paver at Alberton- Never Forgotten BORN AND BRED PORT ADELAIDE MAN

OMG where did the time go?

Here are the photos of the last few months... Noah cheeky Man

Bowling for Xmas from Marions Mum... Ah Noah as usual doesnt understand "you cant" or "shouldnt be able too"

Mum and  Noah

I feel terrible for the fact we have not updated let me put it on photos.. Noah has done well. Has overcome all the issues he faced and lead us to believe he is a man!