Lanis specialist equipment that improves her life
In my post yesterday I had said that we were in hospital
seeing Lanis OT (Occupational Therapist), rather than telling you what we were
up to yesterday first I should start from the beginning of our appointments. In
about April of this year Lani had some requirements for specialist equipment –
namely a high chair, sitting chair, table, foot stool, potty, school chair and
a bath chair. Wow that’s a lot of stuff, I will explain each one in more
detail…….
High Chair – so like all kids we like Lani to be up at the
table while we eat our food so she can learn how to eat, socialise, talk and
all of the other essential life skills that are learnt at a dinner table. We
always eat up to the table and never even scoff a piece of toast while watching
the TV sitting on the sofa, Lee and I made a choice to do this to help Lanis
skills. Sorry I was moving off subject, yes highchair right she was in a
regular highchair which was not appropriate for her. Lani has hypertonia and in
her regular highchair her posture was awful, she could get both of her legs up
and onto the tray and she could also wriggle out of the straps. We needed help
so our OT supplied us with a Breezy chair (Google them they are really cool)
they fit a little child like Lani right up to an adult so all the time she
needs this it will grow with her. The chair has a back rest, foot rest, tray
and Velcro lap strap, this high chair worked brilliantly and in the main still
does however Lani is a cleaver little girl and learnt how to undo the lap
strap. This came to light when one day I took out our plates and on my return
Lani had undone the lap strap and was standing on the highchair tray!! Major
heart attack on my part and that was that I then couldn’t leave her even for a
second without taking her out of the chair, putting her in a safe area and then
popping out to the kitchen. One urgent call to our OT then next day and a new clip
lap strap was winging its way to our home. This worked wonders until about a
month and a half ago again I had left Lani alone in her chair while I took out
the plates into the kitchen and blow me down Lani walked into the kitchen. How
on this earth did she get out of her chair it was supposed to be safe!! Her
strap was still done up so she must have wriggled out, again our OT was right
on the ball and arranged for me to meet the Breezy chair specialist which is
who I met today. We explored 3 ways to keep her safe in the chair, firstly a
chest strap which was a huge wide piece of Velcro – that wouldn’t have worked
it was Velcro so I wouldn’t risk that again. Secondly there was a vest with a
zip up the front that attached to the chair but no that didn’t feel right it
looked too heavy and cumbersome, the third option (the one we have chosen) is
made out of wet suit material and is like the body harness then goes on walking
rains plus we will keep the lap strap. Lets hope this works.
Sitting chair and table and foot stool – we needed this as
Lani only had two options the floor or her Breezy and for her to sit to a table
and draw / read / play / stick things is essential learning, this was
recommended by our physio but unfortunately we were not able to get this
specialist equipment for Lani as the NHS will only fund one chair – the breezy.
So we sourced the chair and table ourselves but our OT was able to help us with
the foot stool. Lani now daily sits to her table and puts crayon to paper and
reads etc. so its worth the investment.
Potty – When Lani gets bigger she may need a special potty
chair but that has been discussed and its all in place if required, at the
moment Lani has a really nice potty with a lid and arm rests, this suits her
down to the ground at the moment.
School Chair – Lani is hopefully off to school soon and our
OT will provide her with a specialist chair as we have to remember about Lanis
hypertonia and the extra physical support she needs compared to a child without
Downs.
Bath Chair – Its only been in this last year that Lani has
bathed on her own, what I hear you cry “on her own” what I mean is in the bath
on her own as before I have always been in with her to hold and support her so
it was a two man job to bath Lani, Lee always used to wash her hair and
condition it while I had the job of keeping her safe in the water. We discussed
this with our OT and he suggested a baby bath chair which had a solid plastic
ring around the top so she could not escape / slip out, we brought one and it
was great but she has now grown out of this and most children would be safe to
sit alone in the bath but not Lani so we now have a specialist seat with
suckers, a bolster to go in between her little legs and the dreaded Velcro. I
am not worried about the Velcro and her escaping as when it comes to bathing I
would not leave Lani alone even for a second so I would be there to supervise
every situation. Lani loves the bath, she is very into splashing hands and
feet, she has more bath toys than “Toys R Us” and even has a bath mirror with
she kissed lots.
I am on such a huge learning curve at the moment again like
yesterday if anyone out there knows of anything other children with DS have to
improve their lives that I have not talked about today please let me know so we
are able to consider it for our little girl, thank you.
Diary
Today Lani and I have been to a close family friends
funeral, its been a tuff day for all. During the service Lani was a dream
little girl, hardly a noise out of her, silent at critical times, what a good
little girl she is. Please spare a thought today for my dear friends Sue,
Claire and Russ who are starting the long journey of rebuilding there life’s
without their husband / dad, I can’t even imagine how hard that must me.
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