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