Tuesday, April 23, 2013

Little Guy Needs Some Extra Prayers...

So, I know I'm not the best about updating when things are positive and going well.  I need to be better about that.  The honest truth is that when things are going well with Ryan, we take full advantage of it and I typically don't have TIME to post!  So, just so you know, with this blog, no news is almost always good news.  Since both kids are in bed and Dave is out doing something "manly" (he's on his second tool errand for the evening, lol). I'll try to update as much as I can tonight, and I'll start with all the good news.

Ryan's definitely growing big and getting stronger.  As soon as we took him off the eryped, it was like a switch turned off and he finally stopped throwing up.  As in, he hasn't thrown up in all in over a week now.  As in, he was throwing up regularly at least once or twice a day...and it was usually a pretty big puke.  Now, nothing.  It's the craziest thing, but we're totally excited about it.  He is still on prevacid for the reflux, but we'll ask if we can start weaning off it at our next GI appointment. 

He is loving his bouncer and loves putting weight on his legs.  He's no where near supporting his weight yet, but if we hold him or if he's in the bouncer, he will just go to town pushing himself up and down.  He's doing pretty well with his tummy time, too.  Getting a little better about holding his head up and looking around.  One of his new PTs is a bit concerned that he doesn't really put any weight on his arms, so that's going to be one of our goals for PT.  He still arches his back quite a bit, but he's getting better about getting picked up and held without squirming and arching the entire time.  Now I can pick him up and hold him with some support to the back of his head and he'll just hang out and look around.  Every little improvement is a big milestone around here!

His feeding is improving a lot, too.  The GI doctor recommended making meals a social event for him, so we've been putting him in his high chair with us at dinner.  He used to be getting his feeding pump feeds at that time, so he'd be down low in his seat while we ate.  Now he sits with us and I give him a few options of things he can eat along with us.  He's actually started devouring his mum mum crackers, which is HUGE!  The other night he ate one whole mum mum, 2 yogurt melts, and like 4 bites of pureed baked pears.  It may not sound like much, but for him it was a feast!  And pair that with the fact that he's not gagging/throwing up, and we have conquered some huge feats around here!  Hopefully, as we continue to work with the feeding therapists (plus we have myself, my mom, and the home nurse giving him tastes/meals of solids) we will slowly increase his caloric intake with the solids so that these meals will be considered "nutritive" and we can start talking about taking out the g-tube.  I think that's still a pretty far stretch from where we are now, but we are definitely moving the right direction!

Here's where we need some extra prayers for Ryan.  He has developed what appears to be an abscess on his bottom.  The pediatrician looked at it today and feels like it may need to be lanced by a pediatric surgeon.  She started him on an antibiotic tonight, and I am taking him in tomorrow afternoon (squeezed in between physical therapy, feeding therapy, a braille institute visit and an ophthalmologist appointment...YIKES!) for an ultrasound at CHOC so they can see what's causing the lump/redness.  Let's pray that this turns out to be nothing and clears up on it's own so he doesn't have to get it lanced.  I can't even imagine how painful that must be, and this poor boy deserves a break!

Last bit of fun news (so I can end with something positive), since flu season is over we are cautiously starting to bring Ryan out into the real world...FINALLY!  He's been having so much fun meeting all of his friends who have been praying for him from afar as we waiting for the worst of the flu germs to pass.  He got to participate in his first "Great Cloth Diaper Change" event, taking over for Dani who served her time the past 2 years. ;)  We all got to go with Daddy to watch a UFC fight at the B family's house.  He had his first trip to Disneyland last weekend (even though he was only there about 30 minutes and he was only out of the ergo for about 10 of that, and we actually only went into California Adventure, LOL!) and he got to see his friends, Courtney and Angelo, again plus meet his long distance buddies, Emma and Pat!  Then we had brunch with his Alpha Phi aunties. :)  He was such a good boy and didn't even bat an eye at all the changes in scenery!  All these outings are perfect practice for his big March for Babies walk this weekend.  Speaking of which, we'd like to give a HUGE thank you to all of you who have donated to Ryan's team.  We truly appreciate it and are thankful that Ryan can help other babies born too soon in whatever way possible.

The Great Cloth Diaper Change at Rosie Posie Baby

Breaking world records is tiring work!

Hanging out watching the fight with the guys (and girls!)

First trip to California Adventure!

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