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Most recent stay in hospital


Last week the date finally came round for Roo 24hr video monitoring EEG so packed a bag for us both including toys & ipad to amuse him, snacks & drinks as hospital food isn't on our agenda! I was really nervous about it as the last EEG Roo struggled to tolerate the wires due to his sensory issues with his head and spent most of it screaming ....

We arrived to be shown to a room which had two beds and one was already occupied and instantly my anxiety levels went through the roof as did expect that as we were told that we would have a room to ourselves so I had bought my own baby monitor etc to alert me to Roo waking through the night and now knew this wasn't possible as monitor would pick up the other patient...did all the usual questions answering with the nurses etc and then we were left to wait till it was time for Roo to get wired up...It was then that I noticed the other mum sitting with her son on the next bed... when our eyes met she got up and came to me with a warm smile and introduced herself..I quickly explained that I was deaf and can only lipread she was very accepting and made the effort to look at me in the face and move her lips slowly and clearly when talking so that I was able to follow what she was saying, she even didn't mind if I asked her to repeat if I couldn't lipread a certain word she said.. she even helped me when some of the staff spoke and I couldn't understand what they were saying and she would repeat what they said...its rare to come across someone like her who wasn't embarrassed, nervous and uncomfortable around a deaf person. She was a breath of fresh air and we told each other our stories relating to our kids... I found her story heartbreaking as her son was absolutely fine, healthy until he was 7 and started to have issues with his legs...aged 9 he was in a wheelchair and now at the age of 20 he was trapped in a body ravaged by Dystonia ( I think that's what it was called) and needing an operation for a peg as he was now struggling to eat normally...But despite everything she remained so upbeat, so strong and made sure her son got everything he needed. She was an inspiration and I admired her and was so glad that I was sharing a room with her...

Time came to get him all wired up and he kept trying to pull them off! Once hubby left I spent most of the time constantly trying to distract him and pull his hands away from his face! Also the fact that he couldn't walk about, climb etc was frustrating for him so he could only stay on the cot or on my lap...But I have to say that the iPad that he got from Family Fund was a complete life saver!! I had downloaded several apps like fireworks, signing songs, lights before coming into hospital and they definitely kept him amused and made the long hours more bearable...

As most of you know hospital food isn't a force to be reckoned with so I had bought sandwiches etc for Reuben just in case as from my experience its always disgusting, over cooked etc but surprisingly when they brought the macaroni for him it looked nice so I gave it a wee taste and it was actually yummy so knew Reuben would eat it and he ate the whole lot!! Come 7pm I could unplug Roo ( makes him sound like a robot or something!) and put the box over my shoulders and we went for a wee walk down the corridor to the toilet to change nappy and then to kitchen to get his bottle of milk before going back to his cot..he really enjoyed the freedom - all 10 mins of it! Plugged him back in and he lay with his bottle and surprisingly fell asleep...he doesn't do this at home..takes forever to settle him!! I thought to myself " I bet he will sleep all night unlike at home"... and guess what - he did!!!!! The wee monkey slept till 6am!! Was a nightmare though as he is such an unsettled sleeper, moving constantly that the wires kept getting wrapped round his neck..so had to keep untangling and watching him ...although he slept the whole night he had many episodes of screaming which had the nurses running in but I explained that this was "normal" for him they were surprised and told me to record that as a possible seizure (I had a sheet that I had to fill in every twitch, jerk he made) - I would never have thought that...Nurses finally took over sitting with Roo at midnight and I had to go into the playroom to get some sleep...I found that so hard to do...leaving Roo in the hands of someone else esp a stranger even though she is a qualified nurse!! Sounds silly but that's the way I feel...Ive only ever been apart one night from him since he was born!!

After 19 hours of being wired up we were told that they had enough information and were happy to stop the EEG testing ...how relieved was I!! Reuben was starting to get very annoyed with the wires and was starting to get a bit upset so off we went to the other room to get them off...the glue is awful stuff - once wires was off Roo rubbed his hands all over his head as if to say " thank god" !! Was told that the glue would be easy to wash off with shampoo...erm it took me 3 days of baths to get the vile glue off his head!!!

Now we just have a long four weeks waiting for the results......
Roo & one of his funny faces!

he really hated the name tags on his feet! Kept trying to pull them off!

Roo iPad - the lifesaver!!


Asleep....

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