Last I posted, Evan was still doing amazing and we were just needing to train my mom to be a feeder before they cut us loose. My mom did a FABULOUS job!!! I told them all beforehand that this could be rough. That Evan knows my mom will do whatever he wants so expect some trouble. I couldn't have been more wrong! He did great for her, she even made the comment that he trained her:) They did the same things they did with Ryan and I except in warp speed. Ryan and I got the luxury to be sitting behind the mirror for 3 weeks before getting to go in with Evan. We knew what to say, how to hold his chin, how to introduce the spoon and squeeze bottle and my mom didn't. I did show her one time at home how I feed him but that was it. She thought she was struggling but she wasn't at all! All she needed was 3 days and she was a pro!
Monday, September 9 Evan graduated:) It was such a good day! Ryan did his feeding in the morning and the therapist turned to me and said, "After his graduation do you guys just want to go? There's nothing left for us to teach you, you would just be feeding him here". My mom came for the graduation and wanted to feed Evan while having Gia in the room with her, so we stayed for one more feeding. The graduation was wonderful. I of course cried while trying to talk (no surprise). But he was so proud of himself! He had a smile from ear to ear! He loved his cap they made him and gave high fives to everyone! We brought strawberry champagne cheese cake from Bald Man's Bakery for the celebration, which everyone loved! Then we had our final team conference. It was very bitter sweet leaving that day. It reminded me of leaving the NICU...it was a place we dreaded going to in the beginning, we would much rather of been home, but we were still sad to leave. I was sad to leave what had been our normal routine for the last 6 weeks, his therapists Amanda and Scott who Evan formed a close bond to, the families and their super kiddos who we supported and they supported us in return. What an amazing experience we had!!! They gave me such a gift teaching Evan how to eat and Ryan and I how to feed him. They made feeding Evan a fun experience, something that used to cause me such stress and more tears than bites. He is learning to like to eat and that in and of itself is AWESOME!!! I would recommend this program to anyone who is struggling to feed their child.
Our family has made it through another journey with Evan!
So proud of my miracle man!
Starting to go do his high fives! Fist stop, Dr. B!
Evan's team from left: Dietician Chris, Therapist Scott and Amanda, Psychologist Dr. Bandstra
We were nervous how the next week was going to go, and so was the team! Wedding week was going to be very hectic and Evan was starting back to school. The team said it would be ok to tube feed him Saturday, the day of the wedding, but I said NO WAY!!! I knew it would be difficult because Ryan and I were both in the wedding and so was Evan. But again, all our worrying was for nothing...Evan once again rocked it!!! We figured out quickly how the routine with school would be. He just eats a little late for his third meal, no big deal. Saturday also went wonderfully well...maybe not all feedings were protocol (ok 4 of the 5 were not protocol) but he ate and drank everything!!! The one feeding where I knew would be at the reception was the one I really worried about. And he really had some distraction, my dad and sister were dancing during his meal...and when I say dancing, it wasn't the boring slow sappy song...they surprised everyone by doing a mix to fast songs, it was AWESOME!!! Evan of course couldn't take his eyes off of it, so I just turned his chair around and fed him while he watched. He loved it:)
So I think we've got a hang of this feeding thing. He is starting to like to eat:) I always say, Evan it's time to eat and 9 times out of 10 he gets a smile on his face and starts crawling as fast as he can to his chair. He loves it when Gia sits at the table with us too. He's proud to show her how he eats! It's been about 3 weeks since we last used his tube for nutrition!!!!! What an answer to prayer! We go back tomorrow to the clinic for a follow up...I'm sure they will be very proud of him! I'm just hoping that maybe this time he's gained a little weight:)
Lindsey



