Caleb

In 1997 Caleb was born with Myelomeningocele Spina Bifida.

Caleb also has Arnold Chiari malformation grade II which means that his cerebellum (movement & co-ordination centre, located on top of his spine at the base of his brain), had collapsed while CSF was leaking into the womb.

Caleb was born with a complete opening to his lower spine & malformed vertebrae in lower back.

The hole in the lower spine was closed the day he was born so spinal fluid didn't leak out.

About one week later, Caleb had a VP Shunt put in (drain tube) which empties excess fluid from his head (ventricle) into a cavity in his abdomen.

Caleb has a neurogenic bladder, he can't control his bowel and bladder but he has had operations to fix this. Having damaged nerves also means that he has limited to no feeling from his hips to toes

( He can't feel anything from the knee down or control lower leg movement). However, he does have 10% thigh muscle control, and he can make his whole leg move from here.

Caleb uses a wheelchair and 'K' walker to get around. He wears A.F.O's (Ankle Foot Orthotics) that help keep his ankle and feet aligned. He has also had a lot of operations to help fix his leg positions. 

Caleb also has a Latex allergy (type 1).

Caleb takes a folder with him whenever he goes to school, hospital or visiting, which has Spina Bifida related information for carers to read.

Caleb has ongoing appointments at the Royal Children's hospital.

Spina Bifida Paediatrician, Orthopaedic Surgeon, Urology Surgeon, Neurology Surgeon, Physiotherapists, Orthotics Specialists, Stomal Nurses [continence supplies].

It’s  been handy having a dad as a Registered Nurse, and a mum who knows all about his care.

Caleb's  procedures.

1.     26^th August 1997 - Closure of hole in back.  

2.      9^th September 1997 - VP shunt insertion.         

3.      15^th October 1999 - Circumcision [for catheterisation].

4.      29^th September 2000 - Left Calcaneal tendon release [placed in plaster].

5.      12^th October 2000 - De-rotation tibial osteotomies L and R. 

                                          Hip spika then leg plasters - developed necrotic heel ulcers in both feet due to plaster + Latex allergy Type 1.

6.      8th June 2001 - Left calcaneal tendon release [plaster].

7.      4^th December 2001 - Parks post anal repair [without stoma insertion-diet controlled].

8.     29^th November 2002 - R bone graft from hip- put into lateral [side] of R foot + screw [external fixator frame].

9.     31^st January 2003 - Removal of external frame [bone wedge above] infection and allergy  from bandages used for frame / fixator rods.

10.   15^th October 2003 - Cystoscopy urodynamics studies [bladder pressure] then we returned 4 hrs later to repair an ankle ulcer.                         

                                        Debrided in theatre - 2 sinus holes found in the same wound bed.

11.   14^th July 2004 - Shunt revision - flown to RCH from The Bendigo Hospital [replaced the detached valve and tubing]

12.      8^th April 2005 - Bilateral achillis tendon lengthening (both legs).

13.   10^th March 2006 - Screws placed in ankle of left foot.

14.      6^th July 2007 - Screws removed from both ankles.

15.      5^th September 2007 - Dental work on all teeth.

16.   31st January 2009 - L Tibial / supramalleolar osteotomy + valgus screw, R malleeoli screw.

Caleb, like many people with severe Spina Bifida has had many stays in hospital for things such as wound infections, fractures and shunt blockages.

Caleb gets a wish....Dec 2005

Thanks to the "Make A Wish Foundation" and "Bendigo Yamaha", Caleb's wish came true.

When 'Make A Wish' asked Caleb what he would like most of all, he asked if they can make him walk!!  after a sad no, Caleb asked if they can fix the hole in his back, obviously they cant.

After a quiet thought Caleb then asked if he could have a motorbike,...and a few months later the answer was Yes! Caleb received a Yamaha Grizzly 125cc.

The throttle is done by using his thumb and its all automatic. A big thank you to a everyone who made Caleb's wish come true.

 There are a lot of sites dedicated to explaining SB so I wont regurgitate instead follow this link to SB sites

Please feel free to Email me for face to face SB issues.

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Affect is a term used in the mental health field that means:

 ^1.A pattern of observable behaviour.      ^2.An outward manifestation of a persons feelings.     ^3.To influence changes in emotion.

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Last updated 28.2.2012 HG