NEW IDEAS SEEM TO BE WORKING.....

Raelynn is such a help she now gives Coop his meds!!!
Look at that smile.....she loves swimming lessons!

We met with the team from Tiny K last nigh. We focused the night entirely on Cooper's eating issues. After much discussion about what is going on with him they came up with a new plan. Staci, one of the team members, drew up a new feeding schedule and gave us a different plan on presenting foods to Coop. Basically, with Cooper's very sensitive gag reflex and the length of time it has been since he ate we are going to start at the beginning. The suggested instead of offering Coop actual foods we would present him with very strong flavors that were not an actual substance he had to manage in his mouth but rather something we could smear on our fingers and then rub on his lips and in his mouth. These flavors had to grab his attention. So last night Cooper got introduced to the juice in the jar of Marciano cherries. It worked like a charm. Once I got some and his lips and a little in his mouth his saliva really built up in his mouth and by gosh he swallowed his saliva and the little tiny bit of juice without gagging. It was amazing. Today Lisa introduced him to coffee, tomato juice and maple syrup. She saved the lemon juice for tomorrow. The point is it seems to be working. We were also told to continue having solids present at each feeding but to let him just put his fingers in it and hope that some of it reaches his mouth. So in addition to the crazy things we are giving him we are also pouring applesauce, peaches, pears, etc on his tray and letting him help himself. Let me assure you this has been very difficult for me. The mess an 8 month old can make with a little applesauce is unbelievable. They also adjusted his feedings and this is where it gets good. The dropped the midnight and 3am feedings. It is a long and complicated explanation of how we are adjusting his tube feeds so I will not bore you with that. Terry is thrilled though that the night feedings are gone. The adjustments they made in his feedings are designed to help him actually have feelings of hunger at times while still getting enough calories in him. They other great thing about Tiny K is that they clear everything with Dr. Kelley. We were not told to change anything after last nights meeting until we heard back from them and Dr. Kelley had signed off on it. I received a call this morning that Dr. Kelley was ok with everything and this all made me feel so much better. We have done nothing but what Dr. Kelley has said in the care of our kids since Raelynn was born. So all in all I am very excited and just hope that Cooper continues to make progress.







Tonight we headed out to the Fair. It was so much fun for Raelynn and Cooper seemed to enjoy the outdoors too. Terry caught up with some old friends he had not seen, but it made for a long night.

Raelynn gets ready to ride the roller coaster!

While Cooper and Daddy wait patiently!

How could we not ride the ponies??!!!

Tomorrow we meet with Dr. Kaine. We will have an EKG and I believe another echo to see how the VSD is doing. I hope that they will start to wean the last of Cooper's meds that he does not technically need for his heart. Cooper is looking so good and I am excited for Dr. Kaine to see him. Today I scheduled Cooper's MRI which is standard protocol for kids on ECMO. It had been set up for the end of this month but because of some work conflicts I had to reschedule it. They did not have another appointment available until October. I was thrilled because this will be an overnight stay and Cooper will be put under again. They tell me it is very routine and nothing to worry about but I have heard that before. I am terrified to take him in even for this minor procedure but it is something they feel needs done and I will not let my fears interfere with his care but I can tell you I am already a nervous wreck but happy I was able to put it off for another few months.