A comment was made recently comparing my attempt to keep an upbeat attitude to a children’s book character.  Pete the cat.  He faces a variety of circumstances that might get him down, but as the book says “Does Pete cry?  Goodness no!  He just keeps singing his song.”

We had our specialist checkup today.  The day got off to an early start, followed by a busy morning.  After some early morning cuddling, and a belated Teacher Appreciation gift delivery, I arrived back at the house for an 8:00 palliative care appointment.  She couldn’t believe how alert they were!  Both boys also had great weight gains this month.  If you recall, they both stalled, with Nolan in particular going nearly 3 months with no real weight gain.  I was relieved to confirm he had gained a full pound in the last month!

Landon: 17 lb 14 oz

Nolan: 13 lb 10 oz

photo 1

We hit the road for our appointment soon after.  I took advantage of Papaw and Nana’s ever helpful hands and sat in the back to work on medical records.  I was behind on some phone calls and sorting.  It was loads of fun!

photo 4

Just kidding…no one likes this stuff.

photo 3

The appointment started with Occupational Therapy.  She examined both boys and assessed their tone, responsiveness, and strength.  There was a notable improvement over their assessment 3 months ago.  Landon was particularly alert.  Both boys displayed a response to sound, grasped when they should, and had improved head control.

DSC_0006 DSC_0007 DSC_0008 DSC_0010 DSC_0011

At my pushing, we had a long conversation about trying the next steps in feeding.  I just happened to have some stage 1 food along… so she agreed to observe a “tasting”.  We didn’t use spoons, but instead capitalized on their strong suck reflex.  We dipped a finger in to the food, then let them suck at the tiny amount of food.  We are not yet ready to spoon feed, as their instinct to swallow to clear their mouth isn’t strong enough yet.  But they did…ok!  We can continue using a pacifier, finger, etc and allow them to taste food, practice emptying their mouth, and swallowing small amounts safely.  This is NOT adding to their caloric intake or replacing a bottle.  The amount is minimal.   It’s more about exposure and practice.  But I’m happy to give them the chance to try something new.  I learned a lot about positioning, tricks, and what to watch for.


DSC_0015 DSC_0019


Nothing too upbeat happened after that.  Nolan’s weight gain continues to be concerning.  He bought himself some time (sound familiar?) but if he keeps up this very slow trend, they will likely recommend a feeding tube soon.  I’ll be calling his weight in monthly.

I will call tomorrow to set up an appointment to have Nolan’s head measured.  We’ll need to determine if it is now asymmetric enough to merit a corrective helmet.

Another not so unexpected bombshell…the neurologist inquired about their upcoming vision appointment, and was concerned.  The boys wouldn’t even react to light today.  All signs pointing to their already severely limited vision…worsening.


“Does Pete cry? Goodness no! He just keeps singing his song.”


There is a ton more I could say, but this is far too wordy already.  So instead I’ll sum up our current prayer requests.

1) Nolan’s weight gain

2) Safe feeding

3) Vision potential

4) Joyful days

5) Memory making moments


Do I cry?  Sometimes yes.  But I’ll still keep singing my song.