Down Syndrome means Lanis ears don’t work too good

Down Syndrome means Lanis ears don’t work too good

This is a huge subject so I will try and give you as much info as I can but like always I am only ever talking about Lani and our experience, every child with Downs Syndrome is different. 

Last year we knew Lani had hearing issues and she was seeing Audiology getting test done, everyone agreed that she needed to try hearing aids. At one of the appointments they squeezed blue gunk into her ears and let it set to make the mould, they were to be sent off and we needed to pop back in a week later to collect the hearing aids and to be shown how to fit them. They did true to their word show me how to fit them into Lanis ears and it was a dream, they slipped in and she didn’t cause me any trouble. This lasted exactly the whole of the appointment, and then the battle commenced…. Lani vs hearing aids, she hated them and every time we tried to put them in she pulled them right back out (usually before even the second one was fully in). We were given toupee tape to try and keep them on but she just ripped them off leaving the backs of her ears sore.

We had a lady come out to us from “Hearing for the Deaf” to help us to deal with Lani and try and get her used to wearing the aids, even she could not get them fitted into Lanis ears as like I have said before she is the most wriggly kid ever. We tried and tried for months on end and it was starting to become an ordeal not only for Lani but for Lee and I, Lani started to develop a head phobia as I had been putting up her hair so it would not get on the tape and make it less sticky and soon every time I went to touch her head or hair she would panic, pull away, cry and even scream so that was that we gave up on the hearing aids. Oh I forgot to say on the odd occasion that we did get them in and she tolerated them she became very clingy and would not leave my side, she had a look of utter fear about her and the only thing it could have been was new noises that scared her.

What next? Well we tried a Baha Band which is like an Alice band with the fitting for a cochlear hearing aid so it sits on the bone behind her ears but is not fitted into the skull. Lani still had her head phobia and so this was also a disaster and she just pulled it off consonantly – worth a try but no good.

We got an appointment to see a ENT consultant who is prepared to give Lani grommets – an operation is a last resort and is not an easy option. The reason for this is so many people need to be consulted to make sure it’s the right thing to do, our heart specialist hospital which Lani is under needed to be heavily involved as there was a question as to whether her heart would be strong enough for an operation to take place. Also a sleep study needed to happen to see if Lani had sleep apnoea because if she had they would have during the operation taken out her adenoids and tonsils. The study was done and results came back as “normal” – very pleased.  I will do a post soon on sleep apnoea and why they thought Lani had it / what it is and how on earth they tested her. 

So where we stand at the moment is we are waiting for Lani to have her funding for the operation agreed by a board!! This will take a month from when they receive the paper work which needs to be submitted by our consultant. Then once the funding is in place she will go onto a waiting list and get a date for the operation.  The process so far from our first appointment with the ENT consultant has taken 6 months,that as Lanis mum upsets me as she has lost 6 months’ worth of hearing / speech development and at such a crucial point in her life. Her speech is way behind and that 6 months is up until now, we still have the paper work process / funding agreed and waiting list time, this is driving me crazy. How can I hurry up the process????? HELP. 

Diary

Busy busy day, we were up at 7am (Lani was up a LOT earlier but 7 is when we got up) had breakfast, wash, hair, teeth, dress, out the door. We drove to Tidworth it takes about 45 minutes, met my friend Becky for 5 minutes and arranged lunch, went into Mark Fell Photography who is Lanis official photographer and has taken some phenomenal pictures of her – I booked her in for a Christmas shoot and picked up our Halloween pictures. Then went to a specialist paint shop to collect some paint for my lovely husbands Lambretta, made my way to Lanis old special school for a goodbye visit (we moved out of area during the summer holidays so didn’t get a chance to say goodbye ). It was lovely to see Lanis best friend and swap numbers with her mum so we can stay in contact, then off to Lee’s old work place to say hello and collect a few things, then back to Tidworth to meet my friend for lunch, then round to my friend Louise’s house to see her and her 2 lovely boys (I miss my friend louise, it was always lovely to be able to pop in and see her, its strange living this far away). What a day, now we are home, fed and ready for bed.