Next week we are off to the RVI hospital for a micturating cystogram to assess noahs bladder, as parents we want whats best for noah and seeing his progress so far feel he doesnt need catheterisation (not yet anyway) noah has full stream and also knows when his nappys dirty too & so much so makes a fuss there and then to be changed and doesnt matter if he hasnt finished his feed either, with noah going under a general anaesthetic again this decision hasnt been taken lightly at all but the out come will tell us whether noahs bladders emptying ok and the valves are working ok and also if theres any stones or not.
Had a visit from the Occupational Therapist lady to assess our home, noah will need to be able to get about in an electric wheelchair & also need to get upstairs to what will be noahs bedroom, bathroom we will need downstairs shower room or bath, we will also have to think about me doing noahs physio as I cant get up & down off the floor and so far ive managed to do noahs physio on a changing mat that goes across the top of his cotbed, with noah getting very long a gaining weight i'll need a hoist to lift noah onto some sort of ajustable bed, maybe a physio bed ?
The other thing at the moment im doing is looking into carseats and although noahs trying to hold his head up it will still need supported whilst in his carseat so the Occupational Therapist will be asking rep's to see if they can help as noah will need a carseat that isnt upright.
Noahs nurseries on the top floor and a lift cant be put in to make the top floor assesable for him so we are now going to start decorating yet another room & have a jiggle about, door ways dont meet to the 900mm needed for a wheelchair either, bedroom sizes are ok but noah still needs his turning circle of 1500mm, light switches & sockets are not at the right hight etc etc the councils coming next week to see whats possible with extension to my sewing room & see if it would be easier to have a bedroom, bathroom downstairs for noah or not
If anyone reading my blog knows of where we can get any help from charities then Id be really grateful im wanting to buy some lights for noahs room making it a sensory/physio room for him
everything thats for a disabled person seems to be tripple the price ????
thank you for taking the time to read & comment on my blog I love reading your comments
Love Shellybobbins xxxxxxxxxxxxxxxxxxxxx
Contact the disabled living foundation as a first step - they are a mine of info and offer grants via disabled living fund towards adaptations. OT can get you an adjustable hospital bed which has multi heights and you can sit Noah up in bed etc with it. I have an electric chair and can squeeze it through most standard doorways. Changed level light and power plugs will make your life easier too as no bending! OT might recommend through floor lift from ground floor to Noah's room. Have you thought about contacting DIY SOS Big Build? They seem to really love doing adaptations and with Noah's big online following I think they'd probably be really keen! As Noah gets older, remember you can ask for a carers needs assessment in your own right so you can get additional equipment and a care package to support you caring for him - we have one for me as my daughter's SLD's mean she struggles with carer role for me. Re catherterisation - it might be possible for Noah to be intermittently catheterised - so he doesn't have a tube permanently, can still wee normally but then has a "top up" drain daily - I've had a similar procedure as an adult done awake and although its uncomfortable it really helps. You're an amazing lady Shelly and Noah is one special little man and I hope some of the advice above leads you to people who can help you xx
ReplyDeleteHi Shelly,
ReplyDeleteThank you so much for your continued updates on Noah's progress and your family's ways of coping with all that life throws at you - you are an inspiration!!
I was watching an episode of the Home Show this morning and the family they were working with have a daughter who has Cerebal Palsy - I know this is a completely different problem to Noah, however I really took notice of them to see if they had anything which may help you.
The little girl has a Theraposture bed, which is like a cot BUT instead of the sides being lowered, they have a trifold opening so the whole side can be accessed - knowing that you are disabled I thought that this may be something which would help you with Noah's bedtimes, etc.
I have no idea on the costs involved in the Theraposture range but may be something worth considering...
http://www.theraposture.co.uk/cots%282011%29.html
Have you considered any fundraising events to raise funds for the adaptations and equipment you need to assist with Noah's progress?
I would also consider contacting DIY SOS as they may be able to offer the help you need to adapt your home for both your own and Noah's long term needs... with Noah's online presence then this would hopefully go in your favour in getting their help!! If you need any help in being nominated for this then please let me know, it's the least I can do.
Our friend is disabled and in a wheelchair and she managed to get assistance with widening the doors in their home, having a lift installed and a wetroom installed downstairs - if you'd like to talk to her then let me know and I will send you an inbox with her contact info on Facebook.
With regards to having a sensory room for Noah, then this sounds like a fab idea!! If there is anything we can do to assist with this, then please let me know - what sort of things would you be looking to include?
I am totally in awe of you and your family, the way you cope with everything which is thrown at you... even through the difficult days, you manage to stay so positive and always willing to share your story with others, to show us what you are going through and prove to others that there is always a way!!
Noah is a beautiful miracle, your little prince continues to amaze with each new day and we love to hear how he is doing and what new things he can do. He is a very special little boy!!!
I hope that all goes well with Noah's hospital appointment next week and you get the positive news you so deserve, we will be thinking of you all.
Lots of love and hugs, today and always!!!
Laura and Gordon xxxxx
www.cardsandcandlesforalloccasions.co.uk
Hi Shelly,
ReplyDeleteThank you so much for your continued updates on Noah's progress and your family's ways of coping with all that life throws at you - you are an inspiration!!
I was watching an episode of the Home Show this morning and the family they were working with have a daughter who has Cerebal Palsy - I know this is a completely different problem to Noah, however I really took notice of them to see if they had anything which may help you.
The little girl has a Theraposture bed, which is like a cot BUT instead of the sides being lowered, they have a trifold opening so the whole side can be accessed - knowing that you are disabled I thought that this may be something which would help you with Noah's bedtimes, etc.
I have no idea on the costs involved in the Theraposture range but may be something worth considering...
http://www.theraposture.co.uk/cots%282011%29.html
Have you considered any fundraising events to raise funds for the adaptations and equipment you need to assist with Noah's progress?
I would also consider contacting DIY SOS as they may be able to offer the help you need to adapt your home for both your own and Noah's long term needs... with Noah's online presence then this would hopefully go in your favour in getting their help!! If you need any help in being nominated for this then please let me know, it's the least I can do.
Our friend is disabled and in a wheelchair and she managed to get assistance with widening the doors in their home, having a lift installed and a wetroom installed downstairs - if you'd like to talk to her then let me know and I will send you an inbox with her contact info on Facebook.
With regards to having a sensory room for Noah, then this sounds like a fab idea!! If there is anything we can do to assist with this, then please let me know - what sort of things would you be looking to include?
I am totally in awe of you and your family, the way you cope with everything which is thrown at you... even through the difficult days, you manage to stay so positive and always willing to share your story with others, to show us what you are going through and prove to others that there is always a way!!
Noah is a beautiful miracle, your little prince continues to amaze with each new day and we love to hear how he is doing and what new things he can do. He is a very special little boy!!!
I hope that all goes well with Noah's hospital appointment next week and you get the positive news you so deserve, we will be thinking of you all.
Lots of love and hugs, today and always!!!
Laura and Gordon xxxxx
www.cardsandcandlesforalloccasions.co.uk
depending on income you may qualify for disabled facilities grant, if you are on a really low income you can access family fund for sensory toys. P.S well done Noah :)
ReplyDeleteHave a chat with www.kirton-healthcare.co.uk/- they are a lovely seating company and I've always found their reps really helpful when I was an OT. They might also know some good charity contacts in your local area - as they are used to having people need funding to get their equipment.
ReplyDeleteIf you can get a ceiling track hoist rather then a manual hoist - they are the BEST. But to get the most out of it you will want the bedroom downstairs with the bathroom off it, so you can actually just hoist noah off his bed in the room and then move him through the door into an adjoining bathroom and then lower him into the bath/shower seat without lots of different moves - it's better for him AND you :-).
As well as DLF speak to your local children's hospice - they are often fundraising and they would help with things like this too.
Snoozlin lights etc are very expensive, but you can get similar effects for half the price (or less) depending on what you're looking to do, shop around when it comes to things like mirrors - ikea has some stuff. (The fiberoptic cables will probably ahve to come from snoozlin or similar, but bubble tubes etc can often be found cheaper in non-disabled trendy shops).
Try to get a firm interested in having you talk about them on your blog - I know someone on twitter that gets LOADS of free stuff by asking companies outright and then reporting on their products on their blog. You've got such a big social media presence you might as well use it to get some freebies!! Just ask around... if you don't ask you WON'T get. (If you're looking to do a fundraising mystery one evening I will willingly give you a script to use free of charge and I'm sure other folk on twitter will gladly donate some raffle prizes too!).
Ask Theo for some help approaching charities / sponsors. He might know some people.
I just can't believe how far Noah has come in so few months! You should both get a GB gold!
Have you looked up Caudwell Children, a charity set up by John Caudwell. Have a look through the website.
ReplyDeleteHave you checked out PhysioWorld?
ReplyDeleteThe reason I say this is because I know they have lots of locations all over the country and may be able to visit you?
It is so true that things for disabled children are so expensive and they never seem to be child friendlt. I set up Hip-Rocker Ltd to try and manufacture furniture and toys at a reasonable cost to parents and for all our products to be child friendly not scary looking to children or look more like a piece of medical equipment.
ReplyDelete