Graduation and life beyond!!!!

Sorry for not posting in a while...I know you all were anxiously awaiting the news:) But life has been extremely busy the last 2 weeks. Evan graduated the Monday of my youngest sisters wedding week, so we were busy getting ready for the big day!!!

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



Week 6

I hope you all had a great holiday weekend! I feel like a broken record (not a bad thing) but we had another GREAT week at feeding school:) It's hard for me to give you all a play by play now because I'm in the room with Evan now and not able to sit back and watch and take notes. It feels so good!

This week was Ryan's training. He of course did great (I got the better grade though:) we always compete). I worked Monday and Ryan wasn't trained good enough in the therapists eyes so he had to be tube feed his 6 pm feeding since I wasn't there to feed him. He's starting to realize he doesn't need the tube and shakes his head and says "no" when we go to hook up his tube. He's SO smart!!! Tuesday Gia got to come with us:) Everyone at therapy of course loved her and she got held a lot. She slept through his first meal but they really wanted to get her in the room to see how Evan ate with her in the room. So the second feeding it was Gia, Evan, and I. They wanted to see how I could handle both kids alone and feed Evan the required amounts of food and pediasure. And in true Gia form, she started crying with 9 minutes to spare. Evan acknowledged her by pointing to her and saying "GG" but I was able to feed Evan the entire meal and somewhat distract Gia. I'm sure Ryan and Scott were laughing behind the one way mirror:) The last meal of the day it was Gia, Evan, and Ryan. They all did great! Gia behaved and didn't cry one minute. Ryan had to feed Evan that night to see how Evan would do for him at home and it went really well! Evan is turning into a robot while eating and knows just what to do!

Gia returned with us again on Wednesday. It was so nice to have two full days with her:) Both kids took a good nap together in evan's nap room. They gave us the green light to do every feeding at home with Evan.....NO MORE TUBE FEEDINGS!!!!!  HALLELUJAH!!! Ryan and I are both fully trained to feed Evan (and we got very good compliments on how well we've done, bragging a little bit).

Thursday was just Evan and I again. They wanted to see how we both would handle eating together. So for lunch I ate with Evan. I would give him a bite and then he would point at my food and yell at me to take a bite. After about three rounds of doing that, Amanda told me through my ear piece to not allow Evan to control the meal. I need to be in control, but I thought it was pretty cute even if its not allowed!

I had to work Friday so Ryan was with Evan again. They did the same thing and had Ryan eat with Evan. It went great! The therapists told us they don't even know what to teach us anymore:)

I had to work Friday, Saturday, Sunday, and Monday:( Thankfully, work wasn't busy Saturday and I was able to stay home. I made Evan food all day! He now eats many different foods and they are adding new food every day. I made: applesauce, peaches, pears, fruit cocktail, cheesy eggs, pork and beans, chicken and mashed potatoes, beef stew, pancakes and sausage, sweet potatoes, green beans, and winter squash. I taught Ryan how to make his pediasure/yogurt drink and how to measure and plate his meals. Ryan was able to get a break to go golfing and we just enjoyed being HOME all together:) The house got a much needed cleaning! Evan ate great all weekend:) He even started pulling on his feeding tube while saying "out out"! He crystal and says "no" every time I hook up his tube to give him his meds or his water. He knows he's DONE with that tube!

So we are looking forward to starting our last week at feeding school! Grandma Jeanne is coming this week for training and then we are ALL DONE! Thanks for all your love and support during another one of Evans journeys!

Lindsey