14 April 2017

Super Mega Update

Whoops!  I didn't realize its been almost 2 weeks since I last updated.  Even though we've had a bunch of help the last few weeks, its still a bit of a busy mess at home and I've been working more than my 40/week to play catch up on all the things I missed at work while we were out. Most importantly Isaiah has been doing really good!  Big update below, just click on 'read more' below the pictures.

Current front on shot taken 4/13
Current profile taken 4/13 - So different!






















Papa Kolis helping with Elena this week
We've had a good rotation of help through the house.  My Mom had been in town helping us since we got home until Monday 4/3 and Isaiah's old ABA therapist Elta came by most the following week to help out during spring break.  My Dad was staying with us from Sunday until this morning this week, and Rachel's parents have helped fill in any gaps in coverage we've had.  Isaiah hasn't needed much help since he's figured out how to eat, but it's been helpful to have another body around the house to help deal with all three kids while I'm at work.  We're still pretty discombobulated and Rachel and I are both so worn down its just good to have that extra set of hands.  We also got a number of meals from folks including Rachel's friend Robin Breault, our new neighbors the Trunks, Walt and Jess Kolis, and Rachel's family, plus the Marietta Community Group that we go to regularly from Passion City Church blessed us with a nice sized gift card to Kroger for groceries.  We'd be even more burned out without everyone's help and we really appreciate it.

As for Isaiah, most of his bruising was gone by Saturday 4/8 so we made our first venture out into the public since getting home. Isaiah hadn't left the house since we drove home from Texas!  Everyone was getting a little stir crazy so I took Isaiah and Christopher out to the Southeastern Railway Museum in Duluth, GA.  Its pretty much Isaiah's favorite place to go as he loves trains so much.  They have so much to see and climb its great.  This time he was fascinated by all of the brake hoses and coupling connections.  He was still getting tired pretty easily so we didn't stay that long, but he did get a train ride in a full size caboose and see all the things he has to see each time.  I could even see a glint of a smile at times which was great.

Slowly but surely he's been eating more.  He still takes the bulk of things in liquid form and we still can't get him to do pediasure or boost, but he's been eating a lot of mac and cheese, soft breads, and snickerdoodle cookies.   He'll rarely eat some yogurt, but he's mainly content drinking milk, juice, and the occasional orange soda.  Not the most balanced of diets, but we're just happy he's eating something and not getting super skinny.  He has lost some weight, but not a ton.

Visiting the Battery Atlanta/SunTrust Park
He's pretty much back to his old self most days, but still tired a lot.  We knew he was doing good when he had enough energy to start fighting with his brother again!  We went out to dinner for pizza on Monday with my Dad and everyone came out to my work yesterday so we could grab lunch at The Battery Atlanta adjacent to the Braves new Stadium which is directly across the street from my office.  Today is the home opener for the Braves and the areas around the stadium, though not fully finished, are open and we explored a little.  They especially loved the splash pad fountains

The big purple halo has made hugs and snuggling a little difficult but we find our ways.  As we've turned the screws down by his jaw the studs from the device stick out further and further.  He's starting to poke his upper chest when he looks down too fast.  We're three weeks into the distraction with one left to go and his face has changed so much.  It brings me to bittersweet tears at times.  Another parent put it like its mourning and celebrating at the same time.  We miss his old face, but we know this will be better for his health and well-being in the long run. After the distraction is done he's still got to wear the halo for another 4 weeks before it gets surgically removed.  I think its safe to say we all want it off, especially Isaiah, but he's tolerating it all pretty well all things considered.

The best thing so far is Isaiah is pretty happy with his new face.  Last night just before bathtime he was looking at himself in the mirror and unprompted said in a pretty confident and funny way "I look gooood!"  I so wish I had it on video because the way he said it was hillarious, but its good to know he's liking the changes so far.

Thats it for now.  Thanks for following along and all your continued prayers! I promise it won't be another two weeks before the next update.  Happy Easter everyone!




1 comment:

Malia said...

You are in our continued prayers! We're glad that you've found ways to snuggle and hug, because that's so important to healing!

-Mat and Malia