The Struggle is Real

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.

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.

Our two little cuties