Sunday, May 17, 2009
Zane the Athlete and some changes for Noah
Zane competed in a Triathlon for NWAS this Saturday. Despite the weather, he finished each event, which included a 1/4 mile swim, 2 mile bike ride, and 1/2 mile run. He is so proud of himself as were all of us! We assembled the "Zane fan club" to cheer him on in the pouring rain! I think he really enjoyed himself and is already looking forward to next year! He is on the countdown to summer, only 11 days left to go! The fact that he will be a 4th grader is still sinking in with me. It really does go by too fast...
Noah had a pretty big week. We finally talked the pediatrician into running lab work and thankfully it all came back okay. We have been working very closely with Jeannie and Emily, the dietitian from U of M to get some of these issues figured out. We are so thankful to have them to work with. Some of the main concerns right now are:
*He is still not eating or drinking...anything
*He is still having occasional swelling of the hands, feet and face
*Sunken eyes and poor coloring
*No weight gain despite the calories we are giving him and no room to add volume.
After the results of the labs and conversations with the dietitian we have made some changes:
*We have increased his water bolus to 75ml 4x daily along with the 2 formula boluses and continue with the 12 hours of continuous J feeds at night until his weight improves.
*Added a daily pro biotic
*Added a daily vitamin
*We will start giving him Duocal 4x daily. This is a powder supplement that dissolves in water that will add calories without volume to help with weight gain
*He will be starting an aggressive outpatient feeding therapy twice a week with both an OT and speech therapist. Obviously we are giving him everything he needs by tube right now until we get him up in weight. I imagine it will be awhile before we can cut back on volume in an effort to stimulate appetite again. We need to build a buffer so he has some room to lose a little.
Right now both he and Elliot have pretty nasty colds and coughs. It's not been to fun for either of them but they seem to be improving. Noah is up alot through the night coughing but it hasn't slowed him down during the day. He loves playing outside with Zane and the two of them would stay out all night if I would let them. He is getting more and more comfortable with people, it is such a welcome change to see him interacting and playing when people are over or we are out.
In just a few weeks we will be celebrating his 2nd birthday...what a blessing!