Progress

Been a good week plus.  Jack has been fighting something for about a week.  They took a sample out of his trach and found an increase white blood cell count indicating there is something going on...but, they left it up to us whether or not to start antibiotics.  So, we left it up to Jack.  So far he is handling his business on his own.  If it does not clear up in the next five or six days we will be forced to start.

His appointment last Friday to look at blood flow in his right leg was uneventful.  We were under the impression that the doc wanted to take follow-up video of the blood flow in his leg.  However, he opted not to as he was pleased with the increased pulse and profusion to his leg since coming home.  Basically, since any of the treatable symptoms are not present, there is nothing left to do but wait and see if it catches up or at least does not get further behind.  We did get a second opinion study started, but so far everyone has told us essentially the same thing.  Nothing to do but be patient and years down the road we will know.  The next big hurdle will really be to see if he limps when he starts walking.  Overall, we are thankful as him not having symptoms that are treatable is a good sign that things are not as bad as they could be.

Eli is starting to look grown-up!  He and I did a jog/walk down to the Oasis and Pharmacy and back.  Yes I said jog/walk...no chance did I have at running that far, it was embarrassing!

This picture is from Sunday afternoon.  Kristin and I braved our first walk around the neighborhood when it was just the two of us at home (no nurse).  Might seem small, but it was a big deal to us.  We probably spent 40 min pre and post walk and 20 min max walking but hey, it was worth it.

Picture of the boys this morning in matching outfits.  And by matching, I am really referring to size!!! Jack is now in the same size as Eli.  He is shorter, but we think heavier.  We also think he has closed some of the length gap over the last couple weeks.  Eli was starting to get long and thin but the last couple weeks has started to add on more bulk again.  Eli is starting to get rice cereal in his bottle as his follow-up swallow study showed he aspirates when he coughs.  Even though it is for a bummer reason, at least it is extra cals!

Jack getting his last dose of pain meds!!! Officially off narcotics and has progressed in the realm of alertness.  Now he acts like a regular baby and demands to be picked up and rocked when he is upset!

Soooo  Big!  Jack showing off his lip smack for the camera...his newest form of cooing.  He decided to mimic Kristin smacking her lips and now does it whenever he wants to get you to smile.  Video below of what I am talking about when he first really started to figure it out.  He gets distracted in the video when the camera gets close as he reaches to touch it or be picked up.  Now he does it all the time and finishes with a proud smile each time.