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