Back At It

Connor and Clara at Gramma's

Clara and Connor had a wonderful time at my mom’s house for their two week stint at Camp Gramma.  Clara worked her way through the list of 17 things she wanted to do in North Dakota (I think they got almost all of them done!).  Connor was mostly along for the ride - loving all the attention he got from sissy and Gramma, doing his exercises every day and battling a cold for several days.  Brent and I had an exhausting and amazing week in New Orleans for the ELCA Youth Gathering.  So many memories and God-sightings.

Big changes ahead for us as the woman who has taken care of Connor since my maternity leave is going back to work full time.  Connor adores Molly and she and her family have become dear to us.  We are still trying to figure out what to do with the little man during the day, but have some leads and are confident a loving person will be put in our path.

Connor’s had two major tests since my last post.  On July 9^th he saw a neuro-muscular orthopedist and had x-rays done on his spine to rule out issues that would cause the popping we’ve heard in his neck.  Thankfully the x-rays came back normal and the doctor said he wouldn’t worry about the noises.  Full steam ahead with physical therapy!

The other test was on Friday (we’d been back in the state for 36 hours, so of course it was time to go to CHOP!).  This one was a swallow test because he has been choking and coughing a good bit while swallowing his formula and drool.  They gave him Barium liquid in a bottle and watched on an x-ray video as he drank it.  What they saw is that he is aspirating a little when he swallows.  The speech pathologist that went over things with me seemed a little surprised he hadn’t had respiratory issues but figured he must doing ok.  She said he did better with thicker liquid so now we are thickening his formula with cereal in hopes that will stop some of the choking. 

And so it’s back to the daily grind for the Dean family.  Brent and I got right back to work, Clara is off to YMCA camp next week and Connor is being cute, doing exercises and going to the doctor.  Current prayer requests are for Connor’s eating techniques to improve, for a sitter to be found and for continued progress with his hands’ sensory issues.

P.S.  Had to include this pic from Connor's first time at the beach.  I thought he'd freak out from the texture of the sand, but he seemed to enjoy it!

Unconditional

Connor loves bouncing on his therapy ball!

Little man continues to make progress with his therapies.  His is holding his head up for longer periods of time now and we think has made a few efforts to bat at toys with his hands.  He tolerates the eye patch and helmet still although in this hot weather he doesn’t have the helmet on for as long during the day.  Will probably mean he has to wear it past the three months the orthotist guessed at the start, but that’s ok.

While always a content, good baby, Connor is turning into a smiley baby.  Before, we would have to work pretty hard to get a smile out of him, but now he finds the strangest things funny and turns on the charm with his therapists (I think he’s trying to get out of the exercises he doesn’t like).  Connor’s also starting to acknowledge people he knows.  It’s so amazing to finally have your baby smile at you when he sees your face in the morning or turn his head when he hears your voice.  I’ve been waiting for that for many months.

We were at the orthotist (helmet lady) the other day and there were two other babies there.   I told Clara I thought they were about Connor’s age.  Almost right away, she commented on how well they held their heads up and then insisted they were older than Connor.  We asked their mom and she said they were eight months old, just a week younger than Connor.  Then about ten minutes later when the mom put the little girl baby down to play with Clara, Clara said, “She can sit all by herself?!  Connor can’t do that!”  The mom sweetly smiled at her and said, “He will soon”.   We don’t really have close interaction with babies Connor’s age so this was one of the first times she’s interacted with another baby and noticed the differences.

Kisses from Sissy

Brent and I have been honest with Clara about Connor, but have also chosen not to tell her everything.  We answer questions when she has them and explain the obvious things (his nystagmus, eye patch, helmet) to her right away so she can respond when people ask about it.  But we haven’t told her about the internal/brain things and what all of that might mean.  She’s a worrier and I don’t want to stress her out.  It’s for selfish reasons, too.  I feel like she’s really the only one in Connor’s life who doesn’t look at him and wonder “Will he ever…”.  I would like to keep it that way for as long as possible.  She thinks he’s perfect (and, I know, she will even when she knows more) and there’s something unconditional about her relationship with him that not even I can give him.  Not sure why I feel so strongly about this…even as I write now, I tear up about it.

But after this interaction with the girl baby, I know the questions are coming soon – “Why can’t Connor do what those babies can?”  I pray for the right words when the time comes.

Next week the kids are off to “Camp Gramma” – two weeks in North Dakota with my mom while I head to New Orleans for the ELCA Youth Gathering.  Brent is joining me there for part of the time to lead our synod’s youth worship band.  I'll be away from them for eight days, but am not worried as I know they are in good hands!

Stay cool! :)