It’s my first time back in PA after 20 days away settling into my new job
and house in Chicagoland. I’ve missed my family terribly. In
conversations with Brent and Carrie over the last three weeks I’ve heard that
Connor’s new feeding protocol isn’t going well. I can now give
personal testimony to the fact that the struggle is real. Both
breakfast and lunch were pretty much a disaster on Friday. He
screamed, thrashed, cried and then he bit me. It was 8:30 a.m. on my first day home and I
was not expecting or prepared for my sweet boy to do such a thing. I
screamed “Ouch! NO BITING!” at which point he started crying
harder. I just sat there looking at him and then myself turned
into a puddle of tears. He stopped screaming and watched me
cry. Maybe feeling sorry for what he had done? Maybe puzzled over
why mama was acting like this? Who knows – but he certainly
responded to this emotional scene he was witnessing.
We both regrouped in about ten minutes and while the rest of
breakfast wasn’t great, I managed to get some food in him. The same
with lunch – I dodged his attempts to bite me, comforted him when he whacked his
head on the chair and miraculously got food and a little bit of Pediasure from
the drinking cup in his belly.
Some meals are like this and some are more ok. We’re working
with the feeding therapy center to try to figure out why this is such a
rollercoaster still and to make some adjustments to the protocol, but I must
give total props to Brent and Carrie for their resilience, patience and love.
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| Kick the ball! |
There are some not so hard things to share, too. Connor has
a new love of sitting on a stool and kicking a big ball. He is also
doing really well with taking steps. We have to hold him up, but
he’s initiating more movement and really starting to connect that he must move
his feet to get to where he wants to go. It’s so fun to watch him
move his feet so purposefully!
Vision wise both his Vision Therapist and his Ophthalmologist
think his vision is developing well all things considered. His
glasses prescription is being increased in both eyes this winter and we
continue to patch two hours a day, but we are so thankful for progress and no
surgeries planned on his eyes this year.
While we are still waiting for an augmentative communication plan
to be put in place for Connor, he is really trying to repeat sounds and
words. You can see the wheels in his head spinning as he tries to
will his mouth to do what he’s thinking. So while he may not be
saying many words still, he is making more purposeful noises and will often
babble an entire sentence or two during an activity.
Current requests for prayers and good thoughts include an easier
time adjusting to the new feeding protocol, continued strength and patience for
Brent as he parents the house solo most of these next five months and for a
helpful communication plan to be created soon.
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| Our two little cuties |
