October
8th, 2006
This
is a very long overdue update on Miss Talitha. As some of you
already know, Talitha had her biannual review at the British
Institute for brain injured Children this week in Somerset,
except this time around it had been 13 months since she last
attended. Usually we attend the center every six months, however
things were busy in February with the arrival of Elijah John!
Last September I did a bit of research on an American product
called Nutrivene which is formulated specifically for people
with trisomy 21 so for the past 12 months, we've been giving
Talitha this supplement on a daily basis. This time around at
BIBIC, Talitha achieved three milestones in her profile which
is HUGE ... mainly in the areas of language comprehension, which
they have rated around the 3-6 year mark. We have seen a marked
improvement ourselves and I think that the Nutrivene has really
helped her although I knew from the start that she was a bright
wee cookie!
Physically, Talitha is still around the 3 mth mark and with
an absence of balance, fine motor skills and generalised athetosis.
As her overall tone (hyportonia) improves, it is apparent from
her upper and lower limbs that she also has spastic quad cp.
This was masked somewhat in the early years but is evident now
in her patterning and the occasional spasms she is experiencing.
Another bonus from the visit! The MRI scan which we had done
in 2003 revealed extensive damage to the left hemisphere, which
is in keeping with the right sided hemiplegia that Talitha has.
Along with various other problems, Talitha's right leg and foot
is shorter and smaller than her left. She also suffers from
very bad circulation to these areas. Yet, neither the Orthotic
consultant who fits her for special footwear or the Orthopaedic
consultant we saw in June will acknowledge the same. Thankfully,
the doctor at BIBIC is prepared to write some letters for us
that will 'hopefully' result in Talitha being issued with the
standing frame and other equipment that she needs and which
the local health authority are denying her of. At present, all
her standing and exercises are undertaken by ourselves so this
would make things a lot easier and also give Talitha herself,
some independence.
Please continue to pray for our little girl that she will continue
to respond to her various therapies. She is such a little ray
of sunshine and brings us all so much joy! Please also, if you
are able, support www.reecesrainbow.com This charity places
special kids like Talitha with forever families across the globe.
There are some very needy children, particularly in the Ukraine
who, if not adopted by the age of four, will be transferred
to mental institutions where it is not uncommon for them to
be tied down in beds to stop them walking around. Many stay
bedbound for life.
Much love,
Deborah.
September
30, 2005
I
meant to mail before we left for England for Talitha's review
at the brain institute but things were hectic as per usual!
Things went well and they saw more weight gain, growth and cognitive
and gross motor improvements than at any other review. I really
think the oxygen therapy is helping although it is not something
that they would use.
We also went and spent some time with a family I came into contact
with recently who have a little baby girl with Down's who is
awaiting the same surgery for an AVSD repair as Talitha had.
While it was probably difficult for them seeing another child
with DS who isn't doing all the expected things, I think it
helped to meet us and talk through things like surgery etc.
They are Christians and home educate also so it was nice to
meet up.
Deborah
May
3rd 2005
Talitha
is still doing oxygen therapy weekly and is due back in Belgium
in June. ABR have a new website up and running. It may be useful
to pass on if you come across anyone with cp etc. www.abrbelgium.com
March
13, 2005
Belgium
went really well and the Brain Institute in Somerset was more
worthwhile this time around. I will update more fully later
December
11, 2004
Talitha never made the flight! She took worse with her chest
and we decided at the last minute not to go and re-book for
February. good call ... as the week progressed she has been
more and more clingy and I think it would have been a waste
of time.
Disappointing, but wasn't meant to be. We found out as we were
cancelling that she would have just seen the trainers as the
top guy isn't there this week so it has worked out for the best.
December
4, 2004
Talitha
and her Dad are off to Belgium again this week for more therapy/training.
We have put in 260 hours in the past 10 weeks so hopefully they'll
notice some structural changes. it is hard for us when we see
her every day.
