Pulmonology:
He continues to do well and the decision was made to try again to wean him off the diuretics. We are using a step down process for the two meds so that he will soon be on half doses of each. So far, so good- but I remember that last time the problems did not show up until after a number of weeks, so I know we must reserve judgement.
Nutritionist:
Toby's weight gain is average for his age. She was very pleased with his three day diary and the number of calories he took in orally. (Hooray for high-calorie chocolate!) However, she is still pursuing the ever elusive catch-up growth. Some of us think that based on his siblings' history, this is as good as it gets. Regardless, we are trying a higher-calorie formula mix and also playing with the tube feeding schedule to encourage more oral intake during the day. ("Return of the Late Night Feedings"- hope this show doesn't have a long run!)
Speech:
The assessment continues with one more weekly visit scheduled. They have been working through a "listening" test which consists of interactions with pictures and performing tasks in response to oral directions. (Unofficially, I have been told that he just passed a segment for 3 - 3 1/2 year olds and they are not very worried about him. Thank you, Lord!) They are also recording and analyzing his speech production. This is the area from which I have been more interested in getting the results. Toby is more and more verbal at home and all seems well in the language acquisition department. The question is whether or not the low muscle tone in his mouth is interfering significantly with his ability to make basic sounds and - if it is- if he would benefit from extra support in this area.
MOSTLY, though, what we are spending our days dealing with is this: a two year old (in every sense of the phrase) with lots of energy and a very short attention span- which adds up to a little boy who seems to be everywhere and into everything. "No touch", he says as he does just the opposite. Our house often looks like a little tornado just went through and you can definitely see where it touched down!
Toby . . .
Toby with all his siblings and nephew, Sam . . .
