Apr 18 - Putting the Tube Back in

Apr 18th - In a dramatic turn of events we unfortunately had to put the tube back in today.

Kyle had been doing pretty well with this feedings the past few weeks. Then he started not wanting anything at breakfast but somehow usually managed to make up the volume by the end of the day - either by us offering more frequently towards the end of the day and/or also by just naturally taking more because he was more hungry and thirsty after not taking much most of day. His weight had been increasing and he was almost back up to his pre-wean weight. He had his six-months follow up with Dr. Rouster the GI last week, and she was happy with his progress and his overall growth. His weight had been increasing for the past three consecutive visits in the hospital system. She said his height and head circumference had been following their own curves so she was pleased to see that and happy that he was no longer using the feeding tube. Then he vomited after a doctor's visit and naturally started taking less (what he always does). In an attempt to make him take more I started playing games and using tricks to get him to drink more milk. I would sometimes switch between water and milk to get him interested and offer milk instead of water once I got him interested. Two days ago I went too far and kept pushing him to take more milk when he didn't want it anymore after three sips. The milk ended up going into his nose and he got really upset. He has not taken one drop of milk since. He was still taking water, but very cautiously because he was afraid that any glass/mug might actually had milk in it. He became very fussy this morning after taking no milk all day yesterday and only had less than 10 oz of water and woke up with a dry diaper. We consulted with the feeding consultants and made the decision of putting the NG tube back in and started giving him milk. Hopefully this is just a temporary measure until he recovers from the trauma in just a few days, or no more than a week or two. I feel horrible about what I did but the damage is done so continuing to blame myself is not going to solve the problem. We are hoping the "reset" will make things better this time around.

As his interest level in milk dropped, his interest level in solids increased. Kyle has been eating more solids and actually swallowing or attempting to swallow more. We are not sure if it's just a natural progression as kids grow they naturally move from milk to solids, or if it's because of his rejection to milk making him hungrier and therefore more motivated to actually swallowing the foods he puts in his mouth. Either way it's a welcomed change and we hope he continues to eat more solids.

In other news, Kyle has been doing really well in his walker. He is no longer using it backwards and is able to walk on his own using it the correct orientation. We are always walking behind him just to be safe because there is no safety harness on the walker so if he lets go he will fall. He also received new AFO's yesterday and the new pair has hinges in the back to allow him to flex his feet while he walks. They also do not have a walking base so he needs to wear shoes while he is using the AFO's. Kyle also started crawling on all fours this afternoon. It only lasted a few seconds but he did it multiple times. He is also able to pull up on his knees from his belly now using both arms.

Overall he's been making great progress. We are just hoping that the re-tubing is a small hiccup that will be resolved really soon!

Happy Easter!

Kyle chasing Woody

Pulling up to the activity table

Chewing on a giant piece of ham

Smiling Kyle