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
*Digestive issues
*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!


FaithCDH said...

That Noah! He is always trying to stump people. Doesn't he know that Ethan is behaving, now its his turn. I miss you all soo much! I doubt I will be able to make it down before you will all be up here. Looks like we are headed for a 4th of July baby. How did you handle these last few weeks,I am already going crazy!

Zane is such a stud! A triathlon...Steve should be worried, he has competition now.

Take care and keep in touch!

The Miles Family

Weylin and Tori said...

Way to go Zane! What a man you are! And 4th grade...Bryce is only one grade behind. You boys are just growing up too fast!

I am so sorry to hear that you are still having all the problems with Noah and his weight gain. There just has to be some explanation! Two years old soon! What a big boy!

And I cannot leave out Elliot--he is just cute as can be! He is growing like a weed too! Can't wait to meet him next month!

The Douglas'

Elizabeth said...

Way to go Zane! And Elliot - he is getting cuter and cuter! As for our medical expert Noah - who loves to stump all - keeping him in my thoughts and prayers - I hope they soon discover something that helps!

Something tells me if he starts eating well - he might not stop? There is always hope!