What equipment have you all received yet xx

[Deb&Matilda]

Just wondering what equipment everyone as received as of yet.

Matilda is had a pengiun seat for bath from OT and they have just ordered her a corner seat and table which straps her in to aid sittng straight. We are waiting for Physio to measure her for Peidro when her boots and bars for talipes can be taken off x

Just wondering where everyone else is doing xx

 

[Emmea12uk]

not seen an ot yet - i think the referral got lost in the post! Going to gently remind them soon, but then who?

 

[Tegans Mama]

We're getting a sunbeam chair to help Tegans hips get better aligned and a corner chair soon too

 

[Deb&Matilda]

umm not heard of a sunbeam chair will ask about that cause might help tillys hips xx

I would request the ot again as it took a while for us to finally get referred but we arent too bad in bolton no waiting list but no in some areas it is 6 months xx

 

[Tegans Mama]

Problem is Debs that Tegans aren't fully dislocated - her hip problem is more muscular related than dislocation. ALl we need to do to make her hips better is keep them in a good position and hopefully they will get better (with plenty of physio too)

 

[Deb&Matilda]

Oh ok with you xx but i suppose I might as well ask cant do any harm xx

 

[Deb&Matilda]

just looked at the sunbeam and it is very sinilar to the corner seat xx

 

[Tegans Mama]

Yeah, they're getting us one of those and a corner seat too The sunbeam is to put her hips in place and improve her head control - although her head control is great for age, one side is better than the other x

 

[Emmea12uk]

who the hell am i suppose to ask these questions to??

 

[Tegans Mama]

Occupational therapist. If you see a physio, ask them to refer you, or if I would you I'd be in the hospital screaming that you need help because they are doing f all to help!!

 

[Deb&Matilda]

emma i got referred to my ot through hospital x but your pead or portage should be able to refer you xx

 

[Emmea12uk]

portage???

 

[Deb&Matilda]

yes portage dont knpw if you have it where you are but here they come every other week and basically look at what they can do and what they sud be doing and everytime get to learn a new thing like rolling etc then leave it with you and see whether you van get them to do it x basically like a OT but different x if you know what i mean xx got one from our Child Development Team Meeting x

 

[Emmea12uk]

lol!! child development team meeting??? roflmao! where will it end!! lol I have a meeting in january with all his medical team for me to ask loads of questions! talking to you two has made my list 20 pages long! lol, not that bad but you know!

 

[Deb&Matilda]

Im sure we will al get there x that meeting is prob your child development meeting cause basically it is just everyone getting together to see where we are and what needs doing xx then they meet every few months xx your town might give it a different name xx

 

[Tegans Mama]

We go to the Spina Bifida clinic where we see all her docs at once

 

[Emmea12uk]

meet the family - early support

 

[Deb&Matilda]

I think it gets confusing I have just got myself a new diary for next year to put in all my appointments and my moneys coming in it is now my bible if I lose it tho I will be lost xxx
These are my appointments upto now
Spina Bifida Clinic (Neurosurgeon and Urlogy and SB Nurse)
Peadatric Doctor
Community Nurse
OT
Physio
Portage
Neurology (Epilepsy) and Epilepsy Nurse
Health Visitor
Osteopath (Herbal Private - Pay for a session a week - I do believe it is working)
Orthopeadic Surgeon
Ponsetti Clinic
Social Worker (even tho just told them I will contact them if I need them as they couldnt really help at mo - more when Matilda gets older)

Monies Coming In - DLA, Carers, Maternity - finishing in Dec then Income Support, Housing Benefit.

Oh my goodness how do we keep up xxx

 

[Tegans Mama]

Lol we see just about the same people as you Debs. We should hear about Tegans DLA soon How long did Matildas take?

 

[Deb&Matilda]

14 weeks but then again it was lovely to received the back pay from that and tax credits xx Im going spending it tomorrow on new bedroom furniture for me and tilly xxx