Pardon? I can’t hear you.... Why Downs Syndrome means Lani can’t hear too well.

Pardon? I can’t hear you.... Why Downs Syndrome means Lani can’t hear too well.

When Lani was a tiny little baby she had a hearing test, it was done with big spok ears on and some sort of waves put through her head and came to the conclusion that she was a little deaf. We had to go to our hospital for a full audiology test who also agreed that Lani is mildly to moderately deaf, she had glue ear which is usual for some children but ..... here we go again..... because of her low muscle tone (hypertonia) her tubes are much smaller and a lot more floppy than other kids so it causes much more trouble for Lani. I told you right at the beginning of the blog that the low muscle tone effected so much more than we could have possibly imagined.. also don’t forget Lani has a low immune system so she will get more colds than the average kid which will also not help the glue ear. I have to tell you about the test they do in hospital, its so strange.

We go into a sound proof room which has the fattest door I have ever seen, in there is the audiologists desk and chair, in the middle is another chair facing a blank wall with a little red plastic table with some toys on it and in the corner of the room is a tall black box that might remind you of a speaker. There was two audiologists, I sit on the chair in the middle of the room with Lani on my lap and at the table in front of me one of ladies sits and plays with the toys to keep Lanis attention.  The main lady then asked me to keep very still and not give Lani any clues on what’s happening, then noise came out of the speaker and it lit up and a pink pig jumped around in it that you could see through a little window..... What!!!!! Lani ignored it totally and didn’t react, so they closed it off and tried again ....3/4 times later she still didn’t want to know so they gave up that test and reverted to a different way. This time the lady stood behind me and made noises with a little machine and a rattle, both gradually got louder until Lani turned around... technical!!!!! Lol. The lady also stuck a little monitor in her ear to measure her glue ear problem.

 

Blog diary

19th October 2012

Note from last night, before Lanis appointment today I got myself very upset, so much of the time I can handle the whole Downs thing but every now and then I crumble and last night was one of those times. I worry so my about my little girl and when there is a big test coming up I can sometimes over think the situation and build it up to where I feel sick. Thank God for Lee, every time this happens he helps me so much with his support, we talk it through, he listens, he hugs me, he never says “its going to be fine” because he knows that no one can say that really but he does always remind me that I will always cope with any news they through at us.

Morning

At hospital for 11am appointment, they are great at audiology and we were taken straight in. Just like I explained above they tested Lani and have decided that she is still mild to moderate hearing and probably will need hearing aids so its been planned she will go back in 3 months and they will retest again and make a decision on a way forward. Gromits I hear you say.... Nope not with DS kids because her tubes will be too small to fit the instrument in to fit them so hearing aids it will be, but and its a big but.... Lani could maybe improve and not need them; apparently this is unlikely because of the colds and her low immune system. I plan to stay forever hopeful and think she may be ok – if not I will have to cross that bridge when we come to it.

Afternoon

Lani had a huge sleep and we have done lots of physio, I have given her lots of cuddles and kisses.

Evening

Lots more cuddles and kisses on the sofa mostly for me to feel better.