Sats monitoring showed my dd does destat slightly in the night whilst sleeping but no huge concerns as she sorts herself out pretty quicklyy naturally BUT the paed has said that that along with me telling him about her jerky movements and startling a lot whilst sleeping could be signs she destatin whilsts possibly having nighttime fits so he doing a 24hr eeg on her at home.
Is it ever going to end!!!
Had hearing test today for Kayleigh-May as we have noticed she isnt always responding to her name and yet again i was right which i was hoping i wouldnt be and she isnt fully hearing
Loud sounds she fine with thank god!! But low sounds she didnt even blink and thats why when we say her name at normal level voice and her back is to us she isnt hearing us!
The ladies who did hearing test were lovely they asked for full list of problems so far already found asked about the lumps of bone above each ear which i said had been put down to plagiocephaly and said because of the fact the lumps are above her ears and the fact she isnt registering low sounds they want to refer her to multi disciplinary meeting with full ent team for them to examine her more indepth and decide what to.
She has that many things wrong now but is so cheerful and happy in herself just wish no more problems are there waiting to be discovered. Also wish genetics would hurry up and start testing to see if it is a genetic disorder/condition causing all this to have happened.
List so far is
Largeneal cleft on her voicebox-causes her to silently aspirate,Has peg in for fluids.
Twisted windpipe
Right sided bronchomalcia,
Hydrocephulus but not excess so no shunt,
Plagiocephaly,
Global devolpmental delay,
Low muscle tone
Now about to be investigated for nighttime fits
And now hearing problem.
Possible growth hormone defiency-being tested at age 2
And paed thinks possible genetic disorder