Happy Halloween!

Henry has been doing very well and is now up to 17lb, 6oz! The Prevacid appears to be helping Henry quite a bit and we are very excited that something so “simple” has made such a significant improvement. The team at UNC has been great! Our primary contact, Nannette, has been wonderful and has called us many times in the evening to check in, get updates, or just provide us with some information on upcoming appointments. I am so impressed with her dedication… it is very clear that the well being of the kids she takes care of is very important to her.

Just some quick updates… Henry’s endoscopy and G-tube replacement are scheduled to occur in 2 weeks. We are no longer using hemp milk and are sticking with the soy for now since Henry seems to respond best to it. UNC will check thyroid function, among other things, in 2 weeks. Thyroid function is one area where soy can have a negative impact.

Feeding therapy is progressing well. Henry has been “practicing” taking bites with a dry spoon for a couple of weeks now. We call it “Spoon Play!” He is doing well but still has some room for improvement. Hopefully, we will start introducing a “dipped” spoon soon! Physical therapy is going well, also. Henry is practicing walking on uneven surfaces, climbing stairs, and using both sides of his body equally. The gym where the therapist works is a great playground for him… foam pit, trampolines, and all! Developmental therapy is also going well, with the focus on fine motor skills. Henry has discovered “wheels” and his favorite new pastime is to lay flat on his tummy while pushing his cars back and forth on the floor! It’s really cute!

It’s that time of the year again! RSV, flu, and now H1N1 season!!! Although Henry does not qualify to receive Synagis, for RSV prevention, this year, it is still a significant threat. Henry will be getting the flu shot this year as soon as his Pediatrician gets some in! Please remember, getting these “vaccinations” does not PREVENT the flu, it only reduces the risk and/or severity. For Henry, getting sick with anything, even the common cold, has a significant impact on his health and growth. Who wants to eat when they’re sick? Although Henry’s G-tube can be used when he gets sick, we are still not able to give him the calories he needs because his body is less tolerant of those needed calories when he is recovering from an illness. This means he is more likely to vomit, have aggravated reflux, and excess air in his tummy, which only results in more vomit, less sleep, and irritability. All these things impact how well he grows. So, please don’t take offense if we seem to be isolated to our own home this winter season!

The boys had a great Halloween! Stewart dressed up as the Transformers hero Optimus Prime and Henry was a “bad to the bone” skeleton! We had a great neighborhood gathering before the trick-or-treaters set out and Stewart came home with quite the loot!