Eating

The day has finally coming, the day we waited for, worried about, prayed about, stressed over- Reagan is eating 100% by mouth!! We have not used her feeding tube in about one month. Something happened in June where she just flipped a switch and decided that she likes eating by mouth. We struggled for a month with giving her oral meals and then filling her belly with homemade blended formula but she just seemed like she was Thanksgiving Day full at every meal. We had a feeding therapist who helped us get Reagan from gagging with even one bite to eating everything in sight! She is excellent and we feel very indebted to her. If you want her name/information email me. So even though she is eating by mouth she really isn't gaining any weight. Our pulmonologist and pediatrician both tell us not to worry that these kids with BPD (bronchopulmonary dysplasia) are just small- always. We should never have to worry about her being overweight. And genetics also tell us that she should be thin. But oh my is she tall- she's in the 50% for height and pretty much taller than all the other 2 year olds we know!
Reagan has three favorite things right now- bikes, puppies (babas) and swimming! The Tour De France was two weeks of pure joy and amazement for her, she LOVES riding in the chariot and every time we go in the garage she says bike mamma, bike dada and points to her head for helmet (good girl) and eyes for sunglasses! She is fearless when it comes to dogs and will walk up to any size or shape for a hug and kiss. She waves at all dogs she sees and gets super excited and says baba when she sees them. I have to give Scott credit for getting her to love swimming- he constantly has her in her kiddie pool, then he upgraded to a bigger pool and just recently he bought a used larger 3 foot pool with a pump. I'm pretty sure Scott is setting her up for the Olympics!

Busy summer

Wow we have had a busy summer thus far. Here’s our overview:
June 12th: We received free Twins tickets and took Reagan to her first Twins game!! She had so much fun and was so cute sitting so nicely with us at Target Field. She also had fun eating the stadium food including a brat!

June 14th: Reagan participated in her first bike race!!! The Nature Valley Grand Prix bike race was in Minneapolis and we entered her in the kids “race”. She loves bikes so every other word was BIKE. She was by far the youngest and littlest racer and she got lots of attention. We had friends cheering for her during the event and I truly think she liked all the attention. At one point she stopped and looked at the crowd and gave a little smirk. It’s amazing to think that she’s now just like every other toddler; we truly had a hard time seeing this in our future when she was so sick, on O2, multiple meds and 100% tube-fed. Our faith has kept us strong during this journey.

June 17th: A not so happy father’s day. Scott was so excited to spend the day biking on the Cannon Valley bike trail for Father’s day but it ended in the urgent care. Scott caught some loose gravel and crashed his bike resulting in a slight concussion, road rash and a huge bump on his cheek. Reagan wasn’t phased in the least bit, thank God for that but Scott spent a few days recovering.
June 23rd: This is the second year we participated in the HeartBeat 5000 with a very special family who lost their son from a heart defect. We had an amazing day honoring him and saw lots of friends.

June 27th: I have such a mix of emotions when it comes to writing about special events that we participate in for Eden. On one hand I am so happy that we can honor her short life in such a special, meaningful way but on the other hand I’m so sad because I don’t want to have to honor her life this way. LifeSource which is the local organ procurement/donation organization has included us in donor celebration activities so we were invited to attend the Donor Family Celebration on June 27th. There was a beautiful ceremony with stories from a donor family member and from a donor recipient followed by a heartfelt message from Mark Ritchie and a presentation of medals of honor for each family by Mark Dayton. We loved having Reagan there to honor her sister and to receive the medal but again our hearts ached as we thought about our life without Eden.
June 30th/July 4th: Reagan was able to watch both mom and dad compete in events. Scott completed an Olympic distance triathlon and I did a 5 mile HOT run on July 4th. She is so cute and she’s our best cheerleader!!! She even got a high five from Dad before the finish line at his triathlon.