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December



It been a while since I wrote on here! To be honest I forgot about it but then remembered after reading another blog about a fellow SWAN... What is SWAN you wonder? Well it basically stands for Syndrome Without A Name - SWAN which is a term given to children who are undiagnosed like Reuben. We have joined a FB group of SWAN's and its been invaluable for information and support.

In the four months since I last wrote in here Reuben has progressed a lot physically as he is now walking! Something we thought that we would never see! He took his first steps at the end of Aug but it wasn't till the end of October before he started to get the confidence to walk a lot more than crawl..he is not a strong walker, unsteady on his feet and falls over a lot..hopefully over time that will improve...




This week has been a surprisingly good week for Reuben! Ever since he was a newborn he didn't sleep well and at 17mths he suddenly started sleeping a lot better and going through most nights and I thought great now I can get proper sleep... alas it only lasted about 2 mths , then his sleeping reverted back to how it was... up most of the night... recently it got so bad as he would wake up screaming and crying and sometimes it took him a long time to calm down and other times he would quickly settle after some reassurance from me... But most night he was up every hour and the lack of sleep was just awful... I became so short tempered , exhausted & over emotional and took it out on Warren and the older 2 which I feel awful about... We had a health nurse who works with the health visitors come visit us for Reuben's 2 yrs check and she asked me to keep a diary of his sleeping pattern - but she said she wanted us to try and get him to sleep in his own bed as he normally sleeps in ours then I lift him into his bed... so last week started this but even though he only drinks his bottle lying in his bed he would get up and only settle on my chest but its a big improvement .... and he has been sleeping a bit longer but at the same time as his sleeping has improved he has been put back on asthma inhalers for his chest and I think this is helping him to sleep better... If he wakes up coughing through the night I will give him more inhalers ... Its such a shame that he hates me giving them to him as he acts like you are trying to torture him! It horrible having to hold him down but if its helping then its the only thing we can do until he learns to understand that he needs them .... But the biggest news is the last 3 nights he has slept ALL NIGHT!!!!!!!! Wow is all I can say!! But all this extra sleep has made me feel so groggy in the morning as I'm not used to having more than 2 hrs sleep! Even Reuben seems more tireder than normal despite sleeping all night! Very strange! I just hope its not another phase and he goes back to his old ways... watch this space!!

Another bit of good news is that Reuben finally has a "safe swallow" and has been discharged from the feeding SALT! Cant believe it.. he is a great eater now and only issue is that he doesn't know when to stop eating so we just need to make sure that he doesn't overeat...

Today we had his key worker on a home visit and she was really pleased at how much he has come on since the first visit as he just used to bang everything but now he is trying some toys like wooden shape boards etc... he still has a long way to go but yay at the progress.... 

This is a photo of him in the bath and he is tasting the water! 

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