Please see the letter below, it is an update on the baby boy I first posted about last fall and photographed last summer. If you are able to donate any items, please let me know and I will make sure the family gets them. Thank you in advance for your kindness.
I wanted to update everyone as to where we are in medical terms
with our son. Some of you may or may not know – he has the
worst case of epilepsy that a child can have. They are called
Infantile Spasms – often children will lose the skills that
they once learned and will not relearn them. Currently our
little guy is 10 months old but functions around a 3 month
old. He is still unable to roll over, grab for a toy on
purpose, or sit up. We just had some appointments at Mayo
and received some good news and some bad news . first off
the good news – the brain activity isn’t “normal” yet
but the chaotic brain pattern has disappeared which is
great – it can however come back at any given time– so we
are still very concerned and remain on medication from Canada.
Now the bad news – we did just find out that he has Optic
Nerve Hypoplasia which means his optic nerve is poorly
development. This allow the brain and the eyes to
communicate together. So currently they have labeled
our son – legally blind – he also has another condition
with his eyes – called Cortical Vision Impairment. They
think he will be able to see about 1 foot in front of
his eyes and the remaining distance is blurry.
Since we have found this out I have been interested
in making bibs that help with his other senses, such
as touch, sound or even smell.
That is where I am hoping I can count on some of my
closest friends for some help. I am interested in
either donations or offering to sell at a reasonable
price any old cloth books you may have that help teach
those sensory skills (textures such as: smooth, rough,
bumpy, crinkle, squeaky, shiny, fuzzy, even mirrors
that are on fabric, etc) – I have started to make
bibs that include some of these senses – (since his
hands can touch midline – he is able to touch items
on his belly – that is why I have focused on bibs)
the more different textures the more my son will be
able to learn through touch.
Any help would be appreciated – even if you have
an old blanket, shirt, coat, etc – that you don’t
need but think the texture is unique and wouldn’t
mind if I cut it into squares to be placed on a bib.
I would be ecstatic in receiving it as well as our son.
One more item that I have found to be of use – are
fabric learning blocks – I raided all of the second
hand stores and purchased some and then I took the
fabric blocks apart and placed the squares onto a
bib for more learning to occur. If by chance you
happen to have any other ideas that may help him
to learn through touch please pass them on.
thank you
Randi
