Month 8-Feeling Great

Here's the latest on our Heterotaxy Hero....

Keller has been doing great.  He is now 18 pounds and 26.5 inches.  This puts him between 15-50% for weight and still only about the 3rd percentile for height.  As his cardiologist put it maybe the reason he looks so "big" is that he's still kind of short. He is wearing 6 and 9 month clothes currently, which as an 8 month old seems appropriate.  (Norah at 12 months was just getting into 9 month clothes.)

Developmentally Keller is almost a normal 8 month old. He can roll and pivot all over the floor, while on his tummy he can push up and straighten his arms, he also has learned to sit.  He is getting more steady everyday when sitting.  He has even gotten confident enough that he will wave his arms over his head like directing air traffic. It is seriously impressive how quickly he is developing. Physically, his therapist feels like should he have an evaluation now, he likely would register as a kid in need of oral therapy only.

On the topic of eating, he is doing pretty well too.  Over time we have been able to condense his feedings to 4-2 hour feedings throughout the day with him still eating continuously overnight. We will continue to gradually pump the milk in faster and stretch his stomach with a goal being to get his milk in him between 60-90 minutes. The shorter the better, because it is tough to chase him all over the floor with the IV pole trying to make sure he doesn't get wound up in the tubing or disconnect it should he roll out of reach.  He started baby food purees before Christmas.  He would get just a taste of the fruit or vegetable mixed with cereal and water to make a slurry.  Currently he is able to handle the full flavor of a puree.  He has tried squash, sweet potatoes, apples, pears, bananas, and carrots.  The bananas did make him cry one night so I'd have to say they are not a favorite.  Last week his therapist introduced baby cheetos that dissolve.  The flavor or texture made him gag but he did better when he was in charge.  He is still exploring solids more than eating, but he is interested in it and seems to have little aversion to having things in his mouth.  One big exciting thing happened!  On Saturday I caught Keller in bed with his feeding tube disconnected from his port in his belly.  Usually that makes a huge mess; milk leaks from his belly and milk from his pump spills out onto the bed or floor.  Well, Saturday, the little stinker was drinking from the pump like a straw, which gave me an idea.  Monday night I gave him a bottle and he drank almost an ounce of formula!! He definitely did not have proper technique as far as suck, swallow, breathe but he didn't choke and he kept going back for more. I don't know the last time he took in almost an ounce by mouth but it is safe to stay it hasn't happened since July.

We saw his cardiologist on Monday and he could not believe how much Keller had changed in the 3 months.  Keller's activity level and lack of interest in sitting still allowed them to get a "limited echo" which means they saw what they needed to see to assess him now but didn't get any extra images.  Keller will see them again around his first birthday.  Typically we can be seen at a satellite clinic in New Bern, in May they want us to go to Greenville and use the "Cadillac" echo machine on him.  There is a chance they will sedate him so they can get a lot of detailed pictures to assess just how much leakage he has.  Monday they still saw a leak in his mitral valve and his doctor said that as it stands he will likely need another surgery, years down the road.  For now, they tweaked his medications (down on one and way up on another) and will be contact with me about his nutrition and any changes to help him catch up a bit more.

Things around here are looking pretty good.  Phillip and I wereeven able to get away with some friends and attempt to ski, however, do not look for us in the next winter Olympics.  I did try out some yoga on the slope, downward dog seemed to be the only way I could stop as I went flying backwards down the mountain.  We found that some time away was good for us and that relaxing and sleeping were just as appreciated as trying a new sport.

Thanks for all of the continued prayers, we are still praying for complete healing of Keller's heart and no more surgery and believe if that is God's will it will happen.  He has brought us this far and we have faith He won't stop now. I like that there hasn't been a lot to report lately. We will still keep Keller's fans aware of the big things going on in his life but it is safe to assume "No news is good news." :)