Hello there.  Wow, I'm glad it's friday.  What a week!  I have been busy managing and trouble shooting all of the G-tube issues that have arisen.  Worst, Cody has been up all night every night this week from gas pain.  Suspecting it's the nutritional canned formulas that are killing him, I backed off those and joined a 'blenderized diet' forum and have been making his meals in the blender instead.  No small feat!  Requires lots of research - lots of preparation.  Today he ate about 600 cal. orally and I supplemented the rest through his tube.  I blended a snack of 1/2 an avocado, chicken, mango, and chicken broth.  I also blended some almond butter and apple juice together.  As well as a cup of Rice yogurt mixed with juice.  I'm also able to give Cody lots of fluids in his tube which is great.  The downside is after 2 days on this new plan, his gas is as bad as ever.  I'm beginning to worry that he's back to just not being able to tolerate anything.  We need sleep!  I have a grocery bag full of 'blending' supplies like oat milk, hemp milk (trying to find something that he will tolerate)...coconut milk...vegetable juices.  It's a lot of work and would be much easier to just feed him those canned 'Boost' kind of products.  But it's so much healthier to get real foods!  I suppose if the gas is horrible either way, I'll have to evaluate the big picture. 

We are battling 'granulation' tissue around Cody's stoma which basically means his body is rejecting the tube.  The bright red, blobby skin protrudes from the tummy hole and is SO gross!  It gets worse by the day and I've tried everything under the sun.  Now we're reduced to steroids which are never great - but necessary because it can get so bad that it moves the tube out of place.  If the steroids don't work over the weekend we have to go to the hospital at the beg. of next week to have it burned off.  Again - GROSS! 

Prior to the tube surgery, I was completely maxxed out with seizure management, research, and medications....plus behavioral issues, research and therapies....gastro and muscle pain.....plus sleep issues.  Now I am adding this all consuming world of G-tube and it's attending dramas.  Wow. 

As for the good side of things - he's tolerating his glasses well and wears them for about 20 minutes at a time before they are flung across the room.  :)   But then he's more than willing to have them put back on.  That is great and surprising.  His gross motor skills are really rocking.  He's wanting to run and be outside a bunch which is new for him.  He's willing to eat more orally which I was hopingn for.  His desire to eat orally really dwindled the last 6 months or so - but now it seems to be coming back.  It's my hope to only need the tube for 1 supplemental feed a day plus hydration.  We hired some friends in our neighborhood to begin attacking our yard which we are so excited about!  It looks like a jungle and our grounds have the potential to be really pretty and a great play place.  They have just been the last priority for 2 years.  With summer here and both boys wanting to be out there, we are excited to get things cleaned up. 

Life is always a balance, isn't it?  You take the good with the bad.  We are blessed in many ways - challenged in many others.  Just like everyone else.  Sleep, as always, would make a world of difference for us so that is a great prayer request for all of us right now.  Cody's seizures are pretty rough - he had a 5 minute one this week and a 7.5 minute one - in addition to all the smaller ones. 

That's our news for now - happy weekend to everyone.  We send our love,

shawna