Last week Portage came to assess him and they will be coming weekly on Wednesday mornings to help him develop and learn through play. They have identified that he needs extra support with communication and he has been referred to the speech and language therapy department also. Portage are a special needs department who help preschool children learn and catch up in areas of development where they might have a delay or special need. They are called Portage because they first started in a town called Portage! Reuben met his Portage worker called Sarah and hopefully they will have lots of fun! Angela, his occupational therapist will be coming less frequently after Christmas now that Portage are coming but she will still come every now and then and sometimes team up with Portage and come together. Reuben gets very excited when he sees Angela coming in with her bag of toys!
When Reuben was weighed without his cast he was weighed at 9.3kg and his cast weighed 1.5kg.
The hospital have done his new cast a little bit bigger to see if he can manage to stay in it for 12 weeks rather than 10 but if it's getting small we can have it changed before then.
Hi, my wife just stumbled across your blog. Our 11 month old daughter Chloe has Cyfoscoliosis and is going fir her first plaster cast tomorrow at alder hey. Shes been having weekly physio, O.T. visits and portage since about 3 months. We'd googled the jackets to try and prepare ourselfs for what's lying ahead and found Reuben's story to be so similar to Chloes it was spooky (I tjink we even have the same rug in our frint room). Thank you so much for writing this blog as it's put to rest a lot of the worries we were having and I hope Chloe progresses just as much as Reuben. Best wishes for the future and hope you have a great Christmas from Chris, Katie, and Chloe Gilboy x
ReplyDeleteThank you I hope Chloe's cast went to plan, the first is the most difficult, getting used to everything - having to do washing and dressing differently but you get used to the new routines. We use 2 nappies at night time, a pampers baby dry with a pull ups over the top and a tight fitting vest, we also tape the nappies to the cast to stop them slipping at night time so they leak less. The only clothes we can get to fit are dungarees but I'm sure dresses will be ok too! The day after a new cast is always the worst when they ache after being under traction etc but after that they're ok. I hope everything goes well, please do stay in touch, we're here if you want to ask any questions etc and we'd be happy to help have a lovely Christmas xx also, if you're not claiming already, you're entitled to DLA, your OT or portage worker can bring you a form and sign it.
ReplyDeleteHi everything went fine x She was screaming when she came round from the anaesthetic but that was mainly due to hunger and they'd done a biopsy on her leg muscle while she was under. Once she'd had a bottle and a nap she woke up her normal happy self. Chloes cast's a bit different to Reubens as they've not covered her shoulders this time, its more like a corset. Apparently next time they're gonna cover her shoulders to control the upper curve. We've already been claiming DLA for a short while and my wife is now getting carers allowance as she's not gone back to work after maternity ended. The Christmas photos you've put on are fantastic and its great to see he's so happy, it's probably more traumatic for us than them. Hope you have a great Christmas and we'll definitely stay in touch, I think we're jot too far from you as we live just outside Southport and I work in Preston. I've been thinking about starting a blog about Chloe for a while, its just knowing where to start. I've found yours to be a great inspiration so hopefully i'll start soon,
ReplyDeleteThanks again and take care
The Gilboy family x
Glad it all went ok, I hope the treatment is successful, we are already seeing results, after 6 months we saw a 10 degree decrease in the curvature which is great, it definately is more traumatic for us than them - I don't think Reuben will ever remember any of his treatment, it should be finished in about 18 months so by writing this blog it will be helpful for him to look at when he is older I hope, so he can read all about everything. you must be quite close by, we go to a church in Preston. I started this blog quite recently, but backdated everything that had happened previously so it was all written down, it's good to keep updating, our families log on to keep up to date - it saves numerous phone calls repeating the same information!
ReplyDeleteWe're here if you have any questions etc, you can email me direct at tigtagsbabycomfortblankets@gmail.com the first few days were difficult for us getting used to putting on the sleek and webbing etc so if you need to know anything we'll try and help
Take care God bless