No coughs, colds or virus’s Shay has been enjoying life
germ free! It really is about time that his body was given a rest from all the
germs and bugs that have been going around.
Shay is now on an extra feed at night to meet his daily
calorie intake. He is on an extra 500ml giving him a whopping 750 extra
calories. He coped extremely well with the extra feed as we introduced it 50ml
at a time and built up to the 500ml. It was great to see him pile on the weight
with this feed and gain a bit more energy! Shay’s muscle tone has improved dramatically as he has been
going to children’s fitness sessions and now has quads he can be proud of.
As you know Shay cannot really go more than a few weeks without
something happening. He is now in a cast for a fractured tibia. We don’t know
how Shay managed to fracture his tibia and he is unable to tell us. He was in
tremendous pain but is now relatively pain free, thanks to the cast. The
hospital wanted Shay to have a weight bearing cast so it wouldn’t affect his
mobility too much. Exactly 24hrs later Shay was in immense pain that even pain
meds couldn’t ease for him. So 8 hours and two hospitals later the cast was
finally removed and a non-weight bearing one put on. The original cast was put
on to tight causing a huge sore on the instep of Shay’s foot!!! The plaster
technicians were more interested in talking about lack of staff and how many
people were sitting in the waiting room. We are back to fracture clinic this
week to see the consultant, so we will be complaining about the lack of care
and concentration from the technicians when putting on Shay’s plaster cast.
Another heart breaking concern for us is Shay’s lack of
memory skills/cognitive development. He thoroughly enjoys learning about the
world and most importantly how things work. He can tell you about planes, cars,
bikes and railways. When it comes to recalling how to count this can cause
major problems for him. In nursery Shay was able to count up to 20. Only the
other day he started counting and got to 4 (you could see him getting confused)
and then he said “Mum, I lost count”. He tried it two more times and was unable
to recall what number comes next. Shay is able to process information but when
it comes to recalling everyday skills he isn’t always able to. He struggles
with people’s names who he has known for a long time. He has no problem
recognising who they are but will stumble over the name. Shay was struggling with my own name a few days ago. I have spoken to other
Pearson’s Mum’s and this seems to affect a few of our older children in our
group. Some of them are on medication that seems to help their cognitive
development. We are seeing his specialist in a few weeks and will bring this up
with her. Hopefully there is something that can help Shay improve his memory
and cognitive development before it really starts to affect Shay’s learning.
Take care everyone and thank you for keeping Shay in your
prayers.
