Our Growing Boy!

 We have gotten out of the habit of writing posts, mostly because life is "normal." I have heard through the grapevine though that the posts are appreciated and good for passing on prayer requests so here we go! 

-Keller is now 10 months old. 

-He has 2 teeth but will have 3 shortly.

-He is 6 months post op!

-He is big! Last time he was weighed he was 19.5 lbs! He was also measuring short for his age but    he's grown some since then, so who knows. He has some wonderful baby chub and rolls for days. 

-He is in 12 month clothes. That is unheard of for me because Norah wasn't in 12 month clothes until  she was well over a year old. 

-He is crawling, sort of.  Keller is doing his best to be mobile, sometimes that means arm over arm    while dragging his body, sometimes it looks like a bear crawl/baby yoga, and sometimes it is an    actual hands and knees crawl.  He does tend to hitch up his right leg, which is the side his g-tube is  on but his therapist says that g-tube kids do that sometimes. The point is this boy is on the move.  He  loves to stand, bounce, wave his arms anything he can do to avoid sitting still. Which means we get  to chase him with an IV pole during his feedings.  

-He sees a therapist, still, but she comes less often and for shorter stints.  Currently her focus is on  eating.  He will eat with a spoon but he probably takes in less than 2 tablespoons of baby food.  While we have moved easily to stage 2 baby food Keller does not know what to do with food with  texture.  He does not know how to move food off of his tongue and if it sits too long it gags him. The  current plan is to keep adding texture (currently this is smushed cheerios) to his food and let him  figure it out.  

-He still gets all of his nutrition from the feeding tube. Keller takes in about 30 ounces of water and  formula a day. The most he has taken in by mouth is 1 ounce, needless to say it will be a while  before he gets rid of the g-tube. 

-He is a happy, easy going boy.  He loves his sister, he loves to snuggle soft things.  He gives kisses  and babbles and does all the things a 10 month old baby does. And he's wonderful.

He's doing so well we were able to go a family vacation.  We left on Easter for Savannah, Georgia and Ponte Vedra, Florida with my family (Allison, here).  We go annually on a trip with my parents and my brother and his wife.  This year we were able to see my Uncle in Florida and spend some time with him as well as on vacation. This was Keller's first trip anywhere other than a hospital and we didn't know how he would travel, how he would do away from his things and schedule and he did remarkably well.  At the end of the trip Phillip and I went a little farther south and spent 2 days at Disney with our friends.  We had a wonderful and magical time! Keller did great in the park and the heat. The trip to Disney was really for Norah (and her BFF Charlie).  These are two Disney princess loving three-year-olds and we stuck to the stuff that would interest them, Magic Kingdom.  Norah loved it but was so bashful with the princesses that they would never believe she's talked of nothing else since. The princesses were great with her, here is a picture of Anna and Norah. 

Packing for a trip like this was a little crazy.  We got approval from his cardiologist to go away and I asked him specifically about Disney.  I asked him about hospitals he would recommend in every city we visited should something arise, answered all those questions and said "Say Hey to Mickey!" Thanks to the help from Realo and Carolina Home Medical we were able to get feeding bags, an extra g-tube and enough medication and syringes for the trip. I stocked up on antibacterial wipes, clorox spray to wipe down any surface Keller would be touching.  I did not, however, pack enough burp cloths because his reflux went off the charts the longer we were gone.  I packed 6, I did laundry 4 times while we were gone and I still ran out.  I learned that you must take a burp cloth with you at all times. ALL times! While we were riding "It's a Small World" I felt that familiar heave of the stomach and had nothing with which to catch the spit up. So what do you do when your child refluxes on a ride? You lean them over the boat and let it fall into the canal.  Well, at least that's what I did.  Right after it happened the ride slowed and the boats all bumped into each other and panic went through me. I thought "they are going to shut it down and kick me out!" but it must have just been a hold up at the loading/unloading zone because I never saw my face on a wanted poster.  Perhaps he just wanted to leave his mark. :) 

Anyway, like I said earlier, life is pretty "normal."  Sometimes I am okay with the new normal and I forget there was ever any other way.  We know we are blessed that Keller has done so well. We are in such a different place than so many with sick little ones we hardly feel like our struggles are worth mentioning.  But I learned at a Bible study recently that I need to be honest.  I am truly a very honest person, I will tell you too much to avoid telling something incorrectly.  But I learned that I'm not always honest with those around me that want to help.  I say that I am fine and believe that I can do it all, and I can't.  So I'm going to be honest.  I miss being able to throw a diaper bag over my shoulder and head out of the house quickly.  I get overwhelmed with the feeding pump and the tubing.  I don't want to have to keep 10 ounces of milk cold in a diaper bag should I be out of the house for 2 feedings. I do miss sleeping through the night.  Keller is a great sleeper but he still "eats" all night and I have to get up and refill his bag.  It takes only minutes but I still miss the sleep.  I don't know how to manipulate Keller's feedings through the day and night enough that he will ever feel hungry enough to want to eat on his own.  I get tired of washing medication syringes and wish they would just clean themselves. Sometimes, it all gangs up on me and I cry.  Usually it doesn't get to me because life could be so much more difficult and I look at that chunky baby boy face and it is so worth it! 

For those that still pray for us, we thank you.  If you are looking for specifics on how to pray for Keller, his biggest issue is eating.  Please pray that he will want to drink formula and eat solids.  I will be talking to a dietitian soon for guidance in moving his feedings around because Keller doesn't ever really feel empty and hungry with our current schedule.  He is learning to suck on a straw and sippy cup without ever really mastering a bottle.  We are also hoping that soon he will not be getting milk all night long.  Getting his nutrition in the day time allows his gut to rest at night and should also help with his reflux.  If you think of it, you could throw in a few for the reflux too because, boy howdy, can that boy puke! 

Thank you again for checking in on us! We love you all, even those we don't know personally!