Our Cochlear Journey Update 5

The day before we jetted off to Athens to visit family we had another appointment at St Thomas’s as part of Leo’s Cochlear Implant assessment.

Following on from the last appointment where we had been asked to practice a new testing technique with Leo and develop that.

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During the appointment the audiologist tried a the testing technique with Leo that we had been practicing and to start with he was doing exactly what he was meant to do, which was place a figure in a boat every time he heard a noise. However due to his age after a while he lost interest and just wanted to play what he wanted to play.

Around this time however the audiologist needed to go and get some extra equipment and left us in the room with Leos hospital speech therapist who watched Leo as he played and also spoke with myself and Keighley on how we thought his speech was developing, after a while she stated that although Leo knew exactly what was happening however apart from the occasional word we as adults weren’t really aware of what was happening to the toys and what their adventure was.

Following all the hearing tests we spoke with both the Audiologist and Speech Therapist and they said that they had a joint meeting coming up where they were going to discuss Leo and decide on the next steps to be taken however they both stated that there had been very little speech development since the last meeting back in April and they were hinting that they would be pushing for Leo to proceed with Cochlear Implant Implantation.

 

UPDATE:

Since the visit the team at the hospital have had their meeting and via a phone call have confirmed that Leo has been offered Cochlear Implants and will under go surgery before Christmas of this year, most likely early to mid November.

Ronald McDonald House Charity

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When your child is ill and admitted into hospital your last thoughts tend to be on firstly how long the journey is home and back and  also can we afford said journey for however your child is in hospital, you just worry about what is wrong with them and how long they are likely to be in hopspital for? 

Well Keighley and I had the exact thoughts of how long is our child going to be in hospital for and what is wrong with him earlier this year around Easter. 

Pretty much from birth Leo had been suffering with silent reflux, which is were a child’s stomach acid comes up from their stomach to the back of their throat causing a burning sensation and causing them stress and pain, we had been prescribed infant gaviscon which wasn’t working at this point so our GP prescribed him with a milk thickener as well in an attempt to line the stomach and as such stop the silent reflux.  We were also told to keep using the gaviscon as this should also help.

We were about to however have a side effect that we weren’t expecting which required Leo to be blue lighted to my mother in laws local hospital which is around 25 miles from where we live. We were told by doctors that Leo had become extremely dehydrated and had mucus on his lungs and that he had to stay in for a few days. Following an x ray the doctor asked if Leo was on any medication, we told him that he was on gaviscon and a milk thickener for his silent reflux. 

Later that evening Leo was transfered to the children’s ward and we were told that only one parent could stay overnight. For various reasons I stayed and Keighley went home around 10.30 that evening. Not long after Keighley had left the nurse came over and asked where my wife had gone, when I answered home she replied that Keighley hadn’t needed to go home as she could have stayed in the McDonald’s House they had on site.

Now I have, probably like everyone else who has used McDonald’s in the last two decades, the pots at the tills in the shape of a house with a load of coppers in and thought that’s a good idea and once you’ve left not really thought about it again until the next time you were in buying a burger etc. However we now found ourselves in a situation where we would benefit from where this money goes. Keighley came back early the next morning and the same nurse asked if that night she would like to use one of the rooms in the house so she was near by should, however unlikely, something happen. To which Keighley said yes.

Later that morning a nurse took Keighley over to show her which room was hers and the facilities contained within the house, which include an en suite bathroom and a communal area with a TV, kitchen, washing machine, fridge etc.

That night Keighley was able to leave at 10 pm knowing that she was nearby.

The fact that we were able to use something that was completely funded by charity donations made us think how grateful we were to the people who support the houses but also to the people who make them happen. All parents will know the natural fear that goes through you when your child is ill and also the dread when it comes to leaving to go home due to hospital regulations, so to have the ability to never leave the site but also to get the rest you need is amazing to say the least.

A Bit About The Charity

Ronald McDonald House Charity currently have fourteen houses across the country and  are completely reliant on donations from the public and the help of volunteers to make their work possible.

The aim of the charity is to have a house at every specialist children’s hospital in the UK to help ease  the possible financial costs of having your child in hospital be they fuel costs or hotel costs. They also are giving parents a place to get proper rest and also for the rest of the family stay should the hospital stay mean that the family is going to be separated for a while. 

For more info on Ronald McDonald House Charity either watch this video or visit their website here.

We were lucky that our stay in hospital was only a short one and that Leo was diagnosed and treated quickly and efficiently.  We were also told to stop using the gaviscon and milk thickener together as this was causing the problem and the GP should never have prescribed it together.

We will be eternally grateful that we had the use of a Ronald McDonald House and that my wife could be near by and not have the stress of having to rush back every morning to spend the day with Leo.

Next time you are in McDonald’s and you see that pot on the counter, just think one day you might to use their services, we never did but ended up using them and now donate whenever we are in a McDonald’s.