So Many Likes

As sweet and excited Nicole posted, Caleb has started propelling his walker forward on his own! He began moving forward on his own last week and we turned his wheels to swivel mode this week.  He is still very cautious and is figuring out this getting around thing, but now has the ability to be in upright mode which makes for much better scenery!  He only lasts a bit because it's a lot of work to hold his body up.  He has made so much progress.  His lower half is so much stronger.  His core is still pretty weak (due to so many surgeries) and is really what's holding him back from walking independently.  He cruises around the furniture and every now and then does something that surprises us all- this morning we blinked and he was sitting atop the ottoman.  No one claimed to have helped him and he was all grins, as if to say, "Look what I did!".  He is making some improvements in his feeding, as well.  He is doing continuous munching!  He puts a bite of something in his mouth and he chews over and over and may even swallow a bit.  He loves his Honey Nut Cheerios, but this week discovered Oreos.  He does really well with them (dispute making a tremendous mess).  He's swallowing some water- not really measurable yet.  Slow steps forward, but progress none the less!
He's been fighting the ear infections, in spite of the tube surgery early December.  He's had an ear infection, strep throat diagnosis, and another really bad ear infection since.  He hardly gets off antibiotic before another hits.  His tonsils were a plus three mid January.  They are going to follow that situation over the next few months-- prayers they go down!
We had an appointment with CADET clinic last week (Complex Aerodigestive Team).- GI, Pulmonology, ENT.  They work with chronically ill children with complex airway problems.  They are looking at the big overall pic.  He constantly sounds like he needs to clear his throat.  We aren't sure what this is from.  He's also on high doses of reflux meds, allergy/ asthma meds and hopefully the team can determine the most effective plan for it all.
We are making a valiant effort with a blended diet.  We tried this back in October, but ended it after a couple of days of epic failure.  He projectile vomited every feed.  The diet consists of same formula (Elecare Jr. mixed to a higher calorie (45 calorie, compared to his normal 30 calorie), with rice cereal, olive oil, sugar, baby foods.  The benefit is that it is heavier in his stomach and shouldn't slosh around like only liquid would.  So far, he's tolerating this attempt great.  It unfortunately feels like I'm pushing syringes of a yucky gunk into his Gtube way too often.  He also has to have a specific amount of free water through his tube.  He doesn't like sitting still during this.  It takes a lot of distraction.  We keep telling him to eat more and we won't have to do this!!  He's done great with the diet so far… until today.  He woke fine but by about 9:00 started acting odd (honestly, we worried he was seizing).  After acting out of sorts for a bit, he started throwing up and could hardly stop for hours.  We couldn't figure out why this occurred but I stopped regular feeds, started pedialyte regimen, and held him without moving for hours. By mid afternoon, he made a turn for the better and had a fine rest of the night.  These are the days I despise-- Not knowing how long is too long to wait at home vs. rushing to hospital.  Feeling like I'm "playing doctor"with feeds on a child that can get dehydrated so, so easily.  Ugh….
Just want to digress a moment.  As I just saw the video of Caleb propelling along and then noticed how many "likes" it received, I had that WOW moment.  We are so blessed every moment of every day to see the true miracle, or as RuthAnn wrote, a "true walking miracle"- almost- that he is.  I hope that all our family and friends know that we don't take for granted that he is God's child, & we are so blessed to be his parents--but a part of so many people's life, via prayer and love, for some huge gigantic plan that only God knows.  It is indescribable to be on this side of seeing the outpouring of happiness from others.  It feels like a huge hug.  And let me tell you, that huge hug is so needed.  All of these updates are incredible and show the progress he is making, but they come from a lot of therapies and doc appointments. We are blessed with an amazing team that love him so much and work so hard to get him where he is. Not one day goes by that we aren't praising God for everyone that loves Caleb, works with Caleb, but also those that love our family.  The hugs, notes, messages, likes, etc. get us from day to day and help us see the wonderful little and big things that can easily be overseen when going through the motions of daily routine.