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Meetings, more referrals, more tests..

I woke up today nervous as I hate meetings esp ones where there are a few people grouped together as I always feel on "display" with them all watching me talk!! Also the added fact of having to concentrate so hard on lip reading our consultant who can talk pretty fast and we do have to ask her to repeat often what she says! Also learning to lip read people that you havent met before is challenging so I always come away from those kind of meetings with a big headache from the concentration...

Anyway we turned up and receptionist gave us a look as if to say " I think you have the wrong day, you stupid woman" look and I just glared back at her ...she then phoned some number just to check that we were supposed to be there!! Phone call finishes and she comes round and gives me the letter and says "yes you are right you are meant to be here so just wait here"!

Less than 2 mins later we are greeted by our consultant who has a big smile on her face, so much better than the miserable, grumpy receptionist who greeted us with a frown and a "mmm" ...Sit at the table with four other professionals who all greeted us in turn - Occupational Therapist & her student, Speech & Language Therapist and Physiotherapist. Our consultant starts speaking and they all get up and take Reuben to the middle of the room where there are toys and I feel so much better without having them all staring at me!!! Anyway we get to say what we wanted to say about our concerns with Reuben's sleeping issues, it is decided that he needs an EEG to rule out Epilepsy which is dauting to say the least as on one hand Im happy that he is finally getting an EEG as it will give me reasurrance that his jerks and twitches are nothing to worry about but there is another part of me that thinks " what if it is epilepsy? How will he/we deal with that?" ...we are also getting referred to sleep management team to see if there is anything else they can suggest with the sleeping issues - have never heard of them so no idea what to expect... cant see how else they can help us as he is in a routine and we have done everything thats been suggested and so far nothing has made a difference.. 

Referral to wheelchair services is also made as Reuben is now too heavy for a normal pushchair and its not safe for him as he can topple it with his weight as when tired he tends to slouch to the side bearing weight on one side making it very hard to push and balance the wheels on the other side from lifting off. I do feel sad that its come to this but its gonna make our lives so much easier in the long run as we will still be able to go out knowing he is strapped safely and we arent straining our backs any more as they sure have taken a beating with lifting him all the time... he may look slim but my god he is a heavyweight! Its as if his bones are made of heavy metal!!

I must admit I was shocked when it was mentioned that Reuben was showing some Autistic traits as last time we came to see consultant she was so confident that he didnt have it but now as he has progressed there are some more concerns but just to keep an eye on it and see how he progresses over the coming year as he is still very young...

Came away with a prescription for Melatonin for a 4 wk trail to see if it helps to get Reuben to sleep more and if it will stop his jerking...but we were warned that it could go the other way and bring on seizures which is nerve wracking....really hope that isn't the case as I honestly dont know what to do if he was to have a seizure... doesnt bear thinking about... also got prescription to increase his inhalers to see if that helps with his breathing at night as we have had some scares where it looks like he stops breathing but because he coughs consultant thinks his airways are getting tight so inhalers should open them up more....

What an appointment... so much said...so much information...but main thing is all our concerns were listened to and they are finally doing something about it all...yes it means more referrals, more appointments but in the long run its for the best I suppose...doesnt make it easier though... I hate seeing him go through so much and wish I could just make his world easier for him to understand and deal with....

But the day didnt end well.... he spent the rest of the day his normal self except from the fact that he would not let a single morsel of food pass his lips.... dinner time he is burning up so decide to give him some calpol to bring temp down... 2 mins later he projectile vomits all over me - so I now smelt of Eau Du Vomit which has to be the worse perfume ever!! Quick bath and clean we go to bed on top of a large towel incase he decided to be sick again and I cuddled him till he stopped screaming and fell asleep...poor baby has been asleep since but keeps crying and whimpering in his sleep...hate it when he is poorly...you just feel so helpless...here is a pic of him tonight...




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