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Help Jordan Hear

Tags:   jordan, hear

Web Site:   http://helpjordanhear.withtank.com/

Jordan was born on 15 August 2014 at only 35 weeks. Despite being a slight premature baby Jordan was given 10 out of 10 from his paediatrician. Not long after we got home from being discharged from hospital Jordan started struggling with ear infections, hardly ever put him down he was up in the arms most of the time and a lot of trips to the doctors for antibiotics for his ears including ear drops and experienced a lot of colds and flu symptoms.

From about 6 months old we started noticing that Jordan does not react to sound / rattle toys / when you speak to him. We immediately took him for a hearing test at the audiologist in Alberton were she was unable to get a reading due to the heavy fluid build-up in his ears and she immediately referred us to an ENT specialist. The ENT specialist found a huge piece (thick as BIC pen) of wax in his one ear and said that we should return within 3 weeks as this might be causing the lack of hearing. When we returned within 3 weeks Jordan’s fluid build up has worsen and the ear infections hasn’t stopped so the ENT Specialist recommended grommets as soon as possible as this has solved the problem for a lot of other kids before. At this point our little boy was only 8 months old (May 2015) and has to undergo his first anaesthetic and operation. We as parents were very concerned putting our little boy through this as we did not know how he will take the anaesthetic nor the operation. The worse thing was for me when I had to hold Jordan in my arms while they put the mask and anaesthetic on him as he screamed and fought all the way until we was fast asleep. Having to wait outside the theatre rooms not knowing how it is going was very stressful for us. Jordan took the operation well and wasn’t long after the anaesthetic worked out that he was back to himself.

Not long after the grommets were put in Jordan’s ears drained for 3 weeks on end. Antibiotics nor ear drops could get his ears to stop draining. His ears stopped draining the one morning all by itself. Some time after this we released that there has been no change in his hearing and even asked the school to do some tests as we needed to make sure of what we felt as parents, and the school confirmed that he does not react to sound at all. When returning to the ENT Specialist who done his grommets we weren’t happy with the message we received “boys are lazy and develop slower, maybe Jordan doesn’t want to hear” and reached out to Dr Duane Mol at Union Hospital. We only waited 3 days to see him as we told him the urgency and needed to find out what is going on with our little boy as we are very concerned, something must be wrong with / in Jordan’s ears. Dr Mol checked the grommets with a little camera and showed us that it is still there and working. He then did some hearing tests and this is were the first real true indication came that something is wrong with Jordan’s hearing. Dr Mol booked Jordan for an ABR Test at the Pretoria Hearing Institute. Jordan underwent another anaesthetic for the ABR Test to be done this only at 11 months old (July 2015). After the tests were completed Jorina Verster called us back into the room and this is were we got the news that no parent ever wants to hear. “Jordan is found profoundly deaf in both ears”. He can’t hear and is completely deaf. At a 120db Jordan showed no response.The more we thought of him not ever hearing our voices nor us his little voice we broke down even more.

Not knowing what was next and what the future holds for our little boy we went back to Dr Mol with the results from the ABR Test. Dr Mol gave us good news that there is a way of giving our boy hearing that he will be normal and hear us and speak as any normal child would and that cochlear implants were the way to go. He told us all about it but that there was one more test to be done before we know if he was a candidate for the implant. Jordan has to go for an MRI and CT scan to see if everything is ok for the implant. We know that MRI and CT is another big procedure to be one on Jordan but we had to find out, we had to know. This was booked as soon as possible at the end of July 2015. Jordan only 11 months old going for his 3rd anaesthetic and another big test awaits him. Even though the test only took less than an hour it felt like for ever for us sitting out site waiting hoping that all is ok with his cochlear , brain, inner ear, nerves etc because this is the test that will tell us yes your child will hear or no he won’t , ever!

The results came back as cochlear abnormal but the flued and nerves are all intact, good and well. This means that Jordan can get the implant and he will be able to hear.

We contacted the medical aid soon after this and Dr Mol wrote them a letter requesting the operation be done as soon as possible. Just when something is in reach it is swept away again just like that when te medical aid declined all costs involved with the implant due to the plan type we are on. Even after numerous emails back and forth and requesting exgratia benefits with the medical aid they refused to help or cover anything.

In between all of this Jordan was sent for hearing aids and moulds to be taken of his ears to fit the hearing aids. The hearing aids were fitting and after a week we went back to JCIC for an Hearing Aid Evolution mid August 2015 at nearly 1 year old. Wendy Deverson received no response with the strongest hearings aid at 85 – 95db and stopped the testing. There is no use delaying and running hearing aid trials as Jordan shows no response or change after wearing them. The only way now going forward is cochlear implant. The ENT Specialist, Audiologist, Speech Therapist and the rest of the team held a meeting short after this and they all confirmed that Jordan is a good candidate and needs the cochlear implant as soon as possible.

There will also be ongoing costs such as batteries that needs replacing once a year at a cost of

+/- R3 000.00 each (once the warranty expires after a year) or if they break its R3 000.00 a shot. We will need huggies to keep the processors connected to Jordan’s clothes so if they fall off he doesn’t lose them, cost +/- R120.00 each. Eventually we also have to buy bits and pieces for the processors as times goes buy.

This is now when we have to reach out to family and friends as you can see the budget below is not something anyone has in their back pocket – WE NEED YOU to please help us raise the funds to get our boy hearing as soon as possible. The sooner we can get the implant done the better for speech and development and chances for normal mainstream schools. If you are in a position to help us financially herewith Jordan’s bank account or if you are able to sponsor us with anything that we can use as prizes / raffles at our fundraisers this will all help us.

Cause Created by: Bronwyn Lenferna View other causes created this user here  Bookmark and Share

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