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| Doing therapy with her baby |
I took this picture of Clara a few days ago and have been
thinking about it a lot since then. She was getting
ready to play baby dolls and
said, “Let’s pretend that this baby has problems like Connor and that she needs
help doing stuff.” I still get this
rush of emotions when I think about it – sad that she has this reality in her
life, happy that she is just as loving to her baby with problems as all the
others and proud that she is so engaged in Connor’s life that she knows what
that baby needs!
Clara is usually in charge of saying our table prayer at
dinner. It most often goes something
like this – “Dear God, thanks for our food and everything we have. Please let Lola and Art have a baby or babies
and let Tammy and Chris have good baby twin girls. Amen.”
Now Brent and I know what her prayer means, but recently someone was
with us and asked Clara what “good baby twin girls” means. She replied, “Well they are having twin girls
and I don’t want them to have problems…like Connor.”
I know that all of this conversation, prayer and play is
really just her working things out in her mind and, honestly, I think she does
a pretty good job of it. But it creates
such polarizing emotions in me that I sometimes don’t know whether to cry or
smile. Clara knows that Connor has
“problems” and that his life will be different and harder because of them. She also says frequently (ok, all the time)
that she loves her little bro and is so glad he’s in our family and that she “doesn’t
care if he has problems.”
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| Riding in the car cart at the grocery store |
I posted that picture on Instagram and someone commented,
“Every time I see a picture you post of her, I get more and more excited to see
all the great things she is going to do in life. She is SUCH a special little girl.” I hold that comment and those like it very
close to my heart. My special girl for
my special boy.
And now a few updates on said boy:
We’re still waiting for Connor’s equipment. #*%!@ pretty much sums that up.
We’ll likely soon be using a Spio vest for him to help with
posture. Because he has such low muscle
tone he sits very hunched over and that’s not good, so this (torture) device
will help straighten him up. Hopefully
we don’t have to wait seven months for it to come.
Connor had a visit to the feeding team yesterday and while
those appointments continue to be long and overwhelming I don’t cry from
exhaustion anymore when we leave. Lots
of new recommendations again at this appointment including an increase in his
Pediasure since he hasn’t gained weight in 10 weeks and the chance that insurance
might cover it! Yeah! At about $4 a day for just the Pediasure, it
can really add up.
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| Connor puckering up to give kisses |
Connor is also going
to get an augmentative communication evaluation to see how best we can help him
learn to communicate. His Speech
Therapist is working on this, too, but more ideas never hurt. He has
a few words that he’ll consistently say: daddy, dog, ba (for bottle), mo (for more),
bu (for book), ba (for ball) and sometimes ma-ma. And then just lots of babbling.
The OT that’s a part of the Feeding Team still thinks that
Connor needs hand splits. Since the
little sensory input bands they gave us a couple of months ago aren’t really
doing anything, she’s going to fit him for something bigger. She said he might just have to wear them at
night which would be great.
Current requests for prayers and good wishes – for Connor’s equipment
to come soon, for him to start biting/munching on things so we can start moving
him to solid foods, for his continued growth in strength and balance, for him
to start grasping and holding on to things and for our family to be
strengthened and renewed as we enjoy a few days at the beach next week!
