Emma has the following equipment to help her take part in normal activities and help with her physio and OT programs: –
Foam wedge: This is a covered piece of foam in a wedge shape. Emma uses this for several of her physio exercises including sitting on it with leg gaitors on and lying over it with her hands on the floor (with arm gaitors on).
A Jenx Bee Chair: This has been a godsend and perfect for Emma. She has one at home and another at nursery. It allows her to sit properly without slumping to the side. It has a hip strap to keep her in position and also padded chest supports to stop her slumping to the side. We now leave the chest straps undone except at meal times as Emma’s muscle tone has improved enough to support herself more in a seated position. We have had to place some Dycem sticky mat on the seat as Emma tends to kick her legs a lot and ends up thrusting her crotch forward which makes her end up in a posturally bad position.
R82 Wombat Chair: We now have an R82 Wombat chair which Emma doesn’t shuffle forward in
Quest UPI Stander: Previously Emma had a Leckey Prone Stander which held her slightly tilted forward to reduce the pressure on her feet and legs. This w as a great introductory standing frame, but the UPI is great as she can stand completely upright. The standing frames allow Emma to experience standing and they are also good for bone development and bowel movement, which is good for Emma as she has suffered from severe constipation since she began solid foods at 6 months old. The standing frame has a table built into it which also has a bowl that can be used for messy play.
Ormesa Bug Pushchair: This is a special needs pushchair supplied by the NHS Special Seating team. It keeps Emma in a good supported seating position. Emma loves this as she can sit bolt upright and see whats going off around her. It can tilt in space and also recline. It also has a head rest for when she is asleep. The pushchair has a hip strap like the Bee chair and an additional 4-point vest harness which keeps her in place. We have again had to use a piece of Dycem mat again, as the hip strap still doesn’t stop her crotch thrusting forward when she kicks her legs. You can get a 5-point harness which I think may be better, but try telling that to the NHS! With the dycem it is pretty good though and we now have an appointment for a review with the special seating team, so fingers crossed for a better fitting.
R82 Stingray Buggy: Emma now has an R82 Stingray buggy, again the NHS will only provide the buggy, none of the accessories such as the rain cover are provided
Bath Seats: When Emma was a baby we used a Mamas and Papas Acqua Baby bath seat (see picture) which was great and held her in and supported. We used this seat until she was well over 1 year old. However, when she finally outgrew it, we had a problem as the next stage of typical baby bath seating was to upright and unsupported for Emma.
She couldn’t sit alone and even when beginning to sit more she was no good at it in the bath. Our OT gave us a chair similar to the green one below, but it was useless. It wasn’t upright enough and even with the strap fastened she would be wriggling all over the place and floating around, hips floating up etc.
After researching on the internet a little, we found some upright seats with support which we thought Emma would be able to use. We asked our OT about them and she ordered us a corner bath instead (see the picture below). We loved it and so did Emma. She could sit upright in the bath and splash with her hands and legs. We get absolutely soaked at bath time, but she loves it. The pommel can be moved in and out to allow for growth, you can have the strap at three different levels depending on your child and the bar at the front gives them something to hold onto, or in Emma’s case stops her from trying to dunk her head in the water. We still use this seat and they do one in a bigger size too for when she grows out of it.
We’re not using this now, but will keep one to take on holiday with us.
R82 ‘Flamingo’ Shower Chair: We are now using an R82 Shower Chair, this is not on a stand, if just has rubber suckers on the base, we put this on top of an Aquajoy bath lift so that we can get Emma in and out of the bath without having to bend in to the bath, she’s getting too big and our back’s can’t take it any more. As soon as her downstairs bathroom is ready, we’ll get the wheeled support for the shower chair and use that to shower her with.
Floor Sitter: Once Emma gained a little more trunk support, she was able to sit in a Bumbo seat. This was great as we could take it with us on outings and Emma could sit with other children or sit and watch television (her most favourite thing). We also bought the tray to fit onto it so she could play easier. Emma does still fit in the bumbo but is growing out of it fast so our Physiotherapist gave us a Floor Sitter. This is a plastic seat which allows Emma to sit flat on the floor. It is less supportive than the bumbo and is great for getting Emma to use her sitting muscles more. However, we do have to constantly adjust her in it as she is so wriggly, but the seat is good and very light (easier to carry around than the bumbo) so we can still take it places with us.
At 2 years old, Emma began to sit up unaided for short periods of time. We still use the floor sitter and occasionally the bumbo for some periods of sitting as she hasn’t yet developed the saving reflex, but It is so nice to finally see her sitting alone unaided.
Bench Sitter: To give Emma more varied seating positions, her physiotherapist have her a bench (see picture below). Emma sits on this nicely and can play with toys on a table in front of her. The bench has hip supports fitted as Emma still needs these. More for the security than support. The hip support can be removed when she is older and more confident at sitting. We have also used some dycem mat again to stop her slipping off the shiny surface.