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January

Seeing as Reuben is asleep I thought I could nip on here and update the blog! 

We had a lovely Christmas spending quality time with the family...Reuben didnt understand the whole fuss about Christmas and to him it was just another day... I was a bit hopefull that he would take more interest this year...when we came down on Christmas morning Reuben followed his older brothers into the living room to see the presents Santa had left! Reuben showed no interest at first so we just let him potter about the living room while his brothers tore into their presents! Once they had finished we then encouraged Reuben to rip the paper off his presents and he soon realised it was fun to rip the paper so it was lovely to see him doing it - a simple thing but a big achievement for him as a month before he wouldnt touched the wrapping paper on his birthday presents! Later on that morning I sat down after tidying up all the wrapping paper etc and was talking to Warren and we were both feeling happy but sad at the same time...his brothers were delighted with their presents and were happily playing away but Reuben just sat on sofa watching telly or walking around the living room and not once did he take any interest in his new toys...he just simply couldnt take it all in and no matter how much we tried to get him to play he would only try it for a couple of times and then lose interest as he didnt understand or it was too hard for him to do... all his toys were for age 6mths - 18mths so it was quite disheartening in a way.... but we soon forgot about our sadness when Reuben  started giggling at the tv! We then went to my family for the rest of the day and the next day we packed up and went through to my inlaws for a couple of days. While I love going to stay with my inlaws I was glad to come home on New Year's Eve Eve as I know my house is "Reuben proofed" !! Strange as it sounds I cannot relax at other people's houses as Reuben needs 24/7 eyes on him when he is awake as he has absolutely no sense of danger and thinks nothing of picking something up and smashing it as he simply doesnt understand... so I spend the whole time trying to advert disasters!! At my own home I know things are out of the way, no dangers within his reach etc...



We recently had a home visit from A & H who work at the Early Years room for special needs children as they will be working with Reuben as he now has a place there so this was an informal visit to get to know him before we go on 22nd Jan! At first Reuben just stared at them and kept walking away down the hall away from them so we had to close the living room door and he wasnt too impressed as kept standing at the door staring at the ladies!! After 15mins he soon warmed to them and was taking an interest at the toys they had brought with them and he actually interacted with them both really well...I was impressed and it reassured me that he may not be too upset when he starts there... He will be going 2 afternoons a week - Tues & Thurs for 2.5hrs and I am going to be so lost without him as I am never apart from him!! 



L the health nurse came back to talk about the sleeping issues and contacted Reuben's paeditrican and we have an appointment to go and see her in Feb to sort out all of Reuben sleep issues and concerns we have...Ive started keeping a video of the jerks/twitches that he does in his sleep to show them what its like... Im hoping its nothing serious to worry about ... She also still thinks Reuben should have a protective helmet as due to his poor balance and unsteady walking he falls a lot and bangs his head resulting in many bruises and cuts on his forehead...but physio says no as its normal for him to be so unsteady... We are gonna leave it for a couple of months and if his walking is no better then will see if he would be better off having one as at the moment we cannot let him walk outside as he struggles with uneven surfaces and walks like a "drunk" which is the only way I can describe it and its just isnt safe for him and so unfair for him to suffer...Just yesterday he lost balance while walking holding Daddy's hand and he still manage to whack his head on the concrete ground... Its such a sickening sound hearing his head clunk against the concrete :-( ....so he is now sporting another bruise!

We got our package through from the DDD Study with our sample pots! Warren did his first and for some reason watching him spit into his spit tube made my stomach churn and I had to turn away until he was finished!!! We then did Reuben's next which was going to be a challenge as Reuben doesnt like objects in his mouth... first time we got the swab in he made this disgusted face and when we tried again the second time he started screaming so we had no choice but to hold him down while we gathered as much salivia as we could... it was horrendous as he was so upset and choking from screaming so much... lots of mummy cuddles afterwards and he was happy again... Next was my turn...stomach churning away while I'm trying to gather as much saliva as possible for the tube! Why is it when you have to do something like this that your mouth suddenly goes dry making it harder! Now we have sent them all off and now just have to wait a very long time to see if we will get a diagnosis for Reuben.... Consultant seems confident that we will so fingers crossed.... only wish we didnt have to wait so long! A year or two to wait!

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