Just had enough NOW

In the last 18 months i have had a baby born 10 weeks early in April, diagnosed with vision issues in May, failure to thrive and cardio issues in June, diagnosed with cyst on the brain and PVL in July, August was diagnosed with hydrocephalus,In October they found he has no tear ducts, In November Keeley ssexually assulted counselling and court started, In December Noah had his nasogasstricc tube out, January Jake had Grommet put in, March I had my first back op, April second op with spinal cord damage whcih included rehab, In May Noah as diganosied with developmental delays and Peter PLus Syndrome, June we went to court to fight for keeley with 6 weekly court cases against the perp, Sept - Noah had first eye op, Oct - now due to have a growth hormone day procedure test, Adnoids removed, sleep study, oximetry study and countless other tests. So i wonder why i have had enough of it all!

Sick Baby

Poor Noah has had it rough the last few weeks has had gastro which really knocked him round and now has conjunctivitis and brocholitis. Not fair for the poor Man. Noah saw Dr Conway last week and had some tests done. I got a call late last night to let us know he is low in growth hormones, Low in Vit D and Calcium, Bone density is per his age and neck xray showed his adenoids are blocking over 50% of his airways. Dr Kennedy called today and he is being refered to ENT for surgery and oximetry in November. Sleep study should be in Dec. Noah is weighing 7.4kg and no new developments to note

Wombats Famous!

Wombats join CanDo4Kids caper

(Taken from Messenger Newspaper 29/9/10)

AARON Merritt knew there was something different about his son Noah just two days after he was born. “We noticed a fuzz in his eye when he first opened his eyes,” Mr Merritt, of Valley View, says. “We had no idea what it was and I suppose we just felt helpless at the time.” Noah, who was born eight weeks premature, was later diagnosed with Peter’s Anomaly, a rare congenital disorder which causes blurred vision. Now 18-months-old, Noah was recently diagnosed with Peter’s Plus an even rarer form of the condition which can lead to stunted growth and facial deformities. “From what we understand there is about 70 cases of Peter’s Plus in the world and we are the only one in Australia,” Mr Merritt says. Despite the setback, Noah’s fighting spirit has seen him overcome daily challenges and three hospital visits a month. Mr Merritt says the support of charity CanDo4Kids has helped the family cope. Volunteers from the organisation, which supports families of deaf, blind and sensory-impaired children, attend medical appointments with the Merritts and visit their home each month. The organisation also runs playgroups, where Noah can mix with other sensory-impaired children. “It’s an extra person and an extra support network for us,” Mr Merritt said. “You can’t put a value on the services they provide.” Next month, Mr Merritt will form the Wombats team for the CanDo Caper, along with his father Geoff, uncle Paul and his mum’s brother-in-law Mike Edmondson. The annual event raises money for charity and will see 30 teams take on activities based on aifThe Amazing Race aif TV show. The Wombats raised $4000 for the fund last year, completing line dancing, kayaking and go-karting challenges. Mr Merritt hopes to top that effort when the event is held at secret locations across Adelaide on Friday, October 15, and Saturday, October 16. “It feels like a way of giving back because we get so much from them.” To donate to the Wombats, visit www.candocaper.com.au.

http://leader-messenger.whereilive.com.au/news/story/wombats-join-caper-for-kids/

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

*

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

* 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.

1st Eye Op- 17 months

Last Friday Noah under went his first op. Deppa had organised for Noahs tear duct to be cleared out and some vital measurements of his eyes, checking the anomaly and any cataracts.

(Pre-op not happy fasting)

Noah went in well especially after fasting for 8 hours. Deppa came out straight away to tell me it didnt work that the rod they use couldnt even get into the duct and from their testing he doesnt have a duct and will require a reconstruction at a later date. Good news was that the anomaly has lightened and no cataracts at all. His glaucloma levels were low and his eyes looked generally well.

He didnt cope so well with the gas and needed help breathing during the op but came too very quickly and didnt have any side effects.

(Post op very happy to be out and back with Mummy and Daddy)

Very glad it all over for now