"The L-Team"

"The L-Team" - that's how I like to refer to Luke's growing team of doctors, nurses, and therapists. It's as though he's the quarterback and they are his offensive line, ready to protect him and help him win the game...his game. (Yes, I'm actually using a football analogy. I live with Pete and Jackson, after all!) I guess this would make Pete and I the team managers. Dr. Liu and Dr. Chavda would be our team captains. Other team members include Dr. Nelson, Liz and Amanda, Dr. Hotaling, Dr. Gulecyuz, Dr. Isreal, Dr. Reynolds, Suzanne, Jim, Hany, Katie, Lori, Vicki, Florence, and Lynnise. Most of these people I speak with on at least a weekly basis. Total "plays" (i.e. phone calls) made on behalf of Luke in just the last 2 days: 12.

We discussed with Dr. Liu last week our desire to exhaust all options before we go with a colostomy bag surgery. He was okay with this because, as he said, he knows we are consistent and aggressive with doing the irrigations at home 2-3 times per day. He has ordered an even larger probe (seriously?) for the dilations, and agreed to give it a little more time to see if we get any improvements. Our appointment with the head of pediatric surgery at Children's is scheduled for January 29th, so we will be anxious to see if she has a different perspective on the issues we are having.

The nutrition specialist through the Early Intervention program started last week and will continue to see Luke twice per month. Due to the Hirschsprung's disease and his feeding problems related to that, it is crucial that his growth is monitored closely. He has definitely gained weight, though fairly slowly. He is just above 10 pounds, which does not even put him on the growth chart at this point. *Sigh* That is hard for us to imagine because Jackson was always in the 95th percentile or above. I know I can't compare the two, but talk about very different extremes. She will continue to help us maintain proper caloric intake based on a specific formula for fortifying his breastmilk. The problem is that we can't increase his calories and fortify more than we are right now because it would be too difficult on his stomach. The straight-up, good old breastmilk is "liquid gold" for him, especially. Weekly speech therapy also started last week, and the focus for now will be working on feeding coordination (suck-swallow-breathe) so that we can see more consistency in his ability to feed. There are some days when it takes up to 30 minutes just for him to remember how to latch on to the bottle. We see the cardiologist tomorrow and are hoping to cut him from the team after that! The anesthesiologist did not hear a murmur before Luke's last surgery, so I'm hopeful the two holes in his heart have already closed or nearly so.

Overall, Luke continues to be a total trooper and handles all of this amazingly. You can definitely tell when his stomach is bothering him and when he is in pain. Typically, however, as soon as we do an irrigation, he calms down immediately. He is smiling a lot more, has discovered his hands (and Olivia's when the two of them are playing side-by-side), and is really curious, constantly looking around and looking to see what his brother and sister are doing. I'm confident that "The L-Team" will continue to look out for Luke's best interests and help us in his continued progress.