Ireland Twin's Support Fund
Our amazing little twins Ollie and Caleb were welcomed into the world 7 weeks early on the 9th April 2014 at the Mater Mother’s Hospital in Brisbane.
Caleb thrived in NICU only later to find found out he has global developmental delays and is now undergoing genetic testing. His condition also includes poor growth, poor feeding, delayed speech, delayed fine and gross motor skills.
At birth Ollie was placed on oxygen support, at the time we didn’t know that you were going to have ongoing respiratory issues and require surgery to help treat these conditions. The doctors also noticed at birth that he had a club foot which is treatable but this was going to be the least of our problems.
At 2 weeks of age Ollie suffered a number of seizures and investigations started. After an MRI and a consultation with the neurological team we were told that Ollie severe bleeding to both sides of his brain and a clot in the sagittal sinus, this had also propagated to other veins. Therefore on 24th April 2014 he was officially diagnosed with cerebral palsy. At the time we were told the major part of the damage were damaged accord was within the speech and motor function parts of the brain. As Ollie grows and develops we can clearly see these are the areas where he needs most of his support.
On the 27th May 2014 Caleb came home and Ollie joined us about two weeks later on the 11th June 2014. As parents we were full of many different emotions. Ollie required full time oxygen, all feeds via a feeding tube (NG) plus we had to change these tubes every 2-3 months and he also required medication once a day to ensure he didn’t have any more seizures.
Despite all the challenges both our little baby boys have they have come a long way in their short little life’s.
Ollie is no longer on medication for seizures and only had the initial one. He has had many, many, many return visit to the hospital as he doesn’t cope well with any type of cold/flu and tends to require more oxygen support when sick. In December 2015 he had a Transpyloric tube (TPT) placed as he was unable to tolerate his nasal gastric (NG) feeds. We are now waiting for a laparoscopic fundoplication, a surgical procedure to treat gastroesophageal reflux and a percutaneous endoscopic gastrostomy (PEG), a procedure in which a flexible feeding tube is placed through the abdominal wall and into the stomach this will allow us to place nutrition (formula), fluids and medications directly into his stomach, bypassing the mouth and esophagus, to prevent reflux. Ollie is thriving with this therapy sections and enjoys the follow up's his Poppy (Grandfather) dose with him.
Caleb is now crawling and showing a strong interest in standing, he contently babbles and is undergoing hearing tests and appointments with ENT due to hearing issues/loss. He enjoys spending two days a week at Long Day Care and has made a few little friends, but misses Ollie when he’s not around. Caleb is relatively healthy however has had some return visits to the hospital due to cold/flu systems and requiring oxygen support. He suffers from moderate eczema and is still having some issues with feeding around taking solid food and drinking from a cup. His doctors want another MRI completed to see if this can help/give us any answers towards his possible genetic disability.
We try to tell both our little boys every day how proud we are of them and how much love, laugher and happiness they bring our whole family. With all these up’s and down’s we do our best to stay strong but this isn’t always easy. As parents we are very committed to giving our boys all the love, encouragement and support in the world. To be able to do this the boys will require lots and lots of specialised equipment over the course of their lives.
We are lucky enough to receive some funds from the government to purchase items that they boys require however these don’t always cover the total cost and some items are not coved at all. This where we are asking for your help, family, friends, friends of family, friends of friends and strangers. We are trying to raise funds for specialised equipment that the boys will require over this coming year along with funds for parking at the hospital and funds to help support the cost of medication and other medical bills.
Currently both the boys require glasses, calming/compression suits, oral motor devices (e.g. specialised teats, vibrating teether) a walking frame each and switch toys. Ollie also requires AFO’s (leg splints) and special socks that need to be worn with them after his surgery for the PEG he will need feeding PEG covers. Caleb may require innersoles for his new shoes, we also feel he will require surgery or a hearing aid, due to hearing loss, this is currently being investigated.
We are asking anyone who can spare it to please donate! Even a few dollars will help! If you can't donate, we ask that you please share our family story with your family and friends, on your Facebook page and other social media sites even on your email. You never know who can help.
We are much in the mindset that there are no silly questions and that people learn via asking and being educated, so please if you have any questions about the boys conditions, upcoming surgeries or equipment they need please just ask.Once again thank you for all your support, care and love for our little family.
To all of those who supported us last year in getting Ollie's 2nd Skin Suit and other items thank you again and we hope you are able to support us this year.
