 Update
on Natalia - August 2003
Hello everyone,
It has been almost three years since we received our
Angel from heaven. She has brought many blessings as all
these special needs children do. We have grown in many
areas...and we are grateful for each blessed day we have
together.
Natalia had a great day today. She is beginning to walk
better with the walker at her therapy sessions and she
seems more alert than ever. She will begin school in
September with a local public school in their special
needs room. I am very happy with the new teacher and
know Natalia will do well in this new daily environment.
Most mornings I am greeted with a loud Ma-Ma until I get
her out of the crib.
Natalia is not talking consistently but communicates
with us in her way and we can usually figure out what
she wants. She makes appropriate sounds at times when we
sing her favorite songs and she mimics some words from
time to time, but nothing real consistent. With her
double looks, and her way of communicating, she makes us
all laugh many times a day.
Natalia is still G-tube fed each hour. Her
fundoplication has slipped so the hourly feedings seem
to help with the reflux problem. She will be going into
surgery again in September to close the gum area near
the teeth. Oral feedings were a problem with nasal
infections and we are hoping this surgery will allow us
to begin oral feedings again. Please help us pray all
this goes well as I am told if she is to talk, she needs
to be feeding orally first.
She continues to be very oral... Everything gets the
tongue and chew test. I am amazed at how healthy she is
with all the germs she collects each day. We do tackle
minor nasal, eye, ear, and intestinal infections from
time to time but we are always on top of these little
infections and she is relatively healthy for a special
needs child.
Natalia can hear but exactly how much is still in
question. Her ABR tests show that her brain is
responding but the specific hearing tests have not been
real clear for this mom. We recently had her ear tubes
replaced (May) and I believe one is out again. So I am
guessing she is not hearing too well in that ear until
we replace the tube...At present, she appears to respond
as we play with her so I am sure she hears something.
Her visual and developmental issues do hold her back a
bit but I am very happy with the changes I see each
week. Having had cataracts at birth, we are still using
contacts each day and glasses when her eyes are
irritated. She does well with the prescriptions. She
seems happy enough without them too. She is able to
somehow see shapes and when reaching for toys she can
usually can find them although she doesn't have the
depth perception, so it can be a bit comical.
Natalia can roll and sit up across the room if she wants
something. She does not like putting pressure on her
hands, elbows and shoulders for an extended period of
time. When in the crawl position, she will quickly push
herself to a sitting position. Then eventually falls
back to begin it all over again. She is not crawling yet
but is taking steps when held upright by the arms.
She has a cute personality coming through. She smiles
when happy and has a very cute pouty lip when unhappy.
She will shake her head no when she is not pleased with
something we are doing and uses her hands to quickly
push us away if we are bugging her. One area I am
extremely greatful for is her ability to calm herself.
She hummms herself to sleep if I am not nearby to sing.
If put down in her crib or floor in protest, she will
lift her legs up and down (in beautiful leg lift form)
till she wears herself out. She has great abdominal
muscles!
She seems to be about 8 to 12 months cognitively. In
reading a recent article through the SOFT organization,
I was surprised to read that there was a Trisomy 13 who
reach 32 and another 36 years. Although that is rare.
The article stated that most of these children average
10 years and their cognitive level is around 12 months.
UG! Well, reading all this set me back a few moments,
but I have great faith that Natalia will walk and talk
in some way. So we will continue to work each day with
her and I will give you updates and we'll see just how
far this little Siegle can fly....
We have been blessed to have two LVN's who help us with
Natalia's care. I am able to get two good nights of
sleep each week with one helping at nights and the other
helping during 3 to 4 of the days each week. The many
therapy sessions and sick or follow up appointments keep
our schedule full. We are so blessed to have the extra
help. It is with their love and help that Natalia is
thriving. God has been good to us and I am so thankful
that we have been blessed with her for three years.
Thank you all for your prayers and support over the
years.
God Bless You all,
ThereseAnn
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