Keller Lately

Happy Heterotaxy Awareness Day! 

I figured this would be a great time to update everyone on Keller.  He's doing great! He will be four this month. (How is that even real?!)  His personality is really coming out more and more.  He is a perfectionist, he gets quickly frustrated when his toys/people don't do what he wants, he gives fantastic hugs and tells me he loves me at least ten times a day, sharing is a no-go, he loves to learn, if it is a stereotypical boy interest it has his attention, he is really into praying right now (the cutest!) and he studies things to figure out exactly how things are working. 

His annual heart check occurred last Monday.  He sat so quietly through the echo and EKG.  His heart looks good, he still has mild mitral valve leakage, which is what they are keeping an eye on.  The doctor told us 1 in 3 will need their valve addressed again, time will tell where Keller falls in that.  He will remain on his heart medication as it helps his heart contract.  The doctor also asked us about Keller's speech and development.  Keller is shy to start with and warms up more like an oven than a microwave, because of this, his doctor wasn't able to really assess his speech or development.  Keller actually speaks very clearly and is on par with others his age developmentally.  But we will keep a watch on it because his doctor mentioned that it is common for children who require heart surgery before age one to have a learning disability.  Again, no sign of this yet, but it's good to be on the lookout. 

His eating is what seems to be kicking our tails.  At the end of last year we changed GI doctors.  We had grown frustrated with the office in Greenville.  They didn't seem to be in support of the blended diet that we knew worked better for Keller.  They were looking to us to make the next call and while we know Keller best, neither Phillip nor I have ever gotten a kid off of a feeding tube. Our pediatrician pointed us towards Wilmington and we have been SO happy there.  The major difference? They listen to us.  Since Keller has been on the blended diet his vomiting has virtually ceased.  We are feeding Keller using his feeding tube twice a day only.  He gets about 10 ounces of food in two feedings overnight, this equals about 400 calories depending on what I put into the blend.  Real food, real food has made all the difference.  If you are reading this and your kid is on some sort of formula and you know its not working, push for real food.  There are pre-made blends you can get, they are expensive but some insurances and medicaid covers it (Real Food Blends, Nourish, Liquid Hope).  We have some pouches on hand that are great for travel but when we are home I blend his food for him.  Our dietician helped with a basic recipe and I fill in the blanks. 

Because we only "feed" him at night he is able to figure things out during the day.  He likes plenty of different varieties and textures of food.  Most of his requests don't have many calories because well that is just life.  His biggest problem is that he gets bored with eating.  Part of this could be age, toddlers do enjoy grazing and eating on the run.  But part of it is because for most of his life he hasn't had to stop everything and eat a bolus of food roughly three times a day.  If he could get all of his sustenance in about five bites 8-10 times a day he would be on board. 

All in all, he's doing very well.  We see GI every few months, Cardiology once a year, dermatology once a year and his surgeon's office for a G-tube equipment check once a year.  It's still plenty to keep up with, especially with Norah's ears and thyroid on top of it, but it is light years ahead of where he was to start.  Praise the LORD! 

Thanks for checking on our boy!