Denver Medical Trip, and some fun stuff too!

Last week we made the trip north to Denver to have some follow-up appointments with Eden's medical team there. My mom very graciously offered to go with me and I'm so extremely grateful she did. She was a huge help on the drive to and from, but even more so, she was a lifesaver in helping take care of Bentley while Eden and I were at the hospital. Thanks mom!

Eden has really been looking forward to going to "Jade's house" for quite a while now so I decided to go up a day early so she could have at least one fun day outside of any medical stuff. We went to the Children's museum there which was busy, but the kids had tons of fun. My cousin Allie and her boys were able to meet us there which was so fun to be able to hang out with her, and meet her new little baby.

Eden's favorite thing that day was the tools section. She loved using the screwdriver to put screws into a toilet paper roll. She did several perfectly straight lines of screws before I finally forced her to move along.

Bentley's favorite thing was the ball room. There was a tube that would suck the balls up (kind of like at the drive through of a bank) and then bring them right back to where he was standing. He would just load the balls and watch them go around over and over again. Even when we would go to other exhibits, after a couple minutes he would start wondering off saying, "ball" hoping he would find his way back to his favorite spot.

Bentley was definitely worn out by the time we left there.

We loved the time we had to spend with the Asay family. Eden loves being with them, especially Jade who is so sweet and loving to her. We are so grateful they let us stay with them while we have to be in Denver for our medical appointments. It lightens the burden so much.

So we arrived Monday night, Tuesday was all fun and games, but Wednesday our time at the hospital began. We arrived that morning and she had to get chest x-rays and then do a swallow study.

The x-rays showed she has some plugging in her lungs and the cultures came back positive for some bacteria in there so she is now on an antibiotic, and is also getting a medication through her nebulizer twice a day for 30 days.

The swallow study went awesome! She was so amazing and cooperated so much! At our last swallow study last October she was aspirating liquids (liquids were going into her lungs) so it was a big concern. At this study she showed she has improved so much and is not doing anything with her swallow that is concerning. They felt like we probably won't need to do any more follow up swallow studies so we are so excited about crossing another thing off our future medical to-do list. Yay Eden!

After we finished our swallow study we had a short break for lunch so we went to a nearby fast food place where she was stoked to get an ice cream after she ate. Since my mom had Bentley, it was just Eden and I and it was really fun to have that special time with just her. She is so sweet and fun.

After our lunch we went back to the hospital for a clinic visit with the Aerodigestive team. In the waiting room there was another little girl and her mom, and for the most part, Eden and this girl were just staying away from each other. That was until this other girl noticed Eden had a feeding tube. She quickly lifted her shirt and showed Eden that she had the same feeding tube. They were so cute together after that point. They continued to lift their shirts and laugh, and then they started chasing each other and playing together. It was cute to see that bond that formed quickly just because they noticed they had matching feeding tubes. :)

The next morning we were up bright and early to check in at the hospital at 5:45 AM. Eden was scheduled to be in the operating room where the Pulmonologist would do a scope and look at her lungs, and the ENT would do the bronchoscopy to measure her airway. Dr Prager, the ENT, also removed her tonsils and adenoids.

Upon completion of the procedure I met with both doctors and got some very positive news. Eden's lungs did have some blockages, but the malacia, or softening and collapsing of the lungs was much better and her body was keeping it from closing off completely.

Then Dr. Prager let us know that her airway has grown since the last time he saw her last October. He felt like if she continues to grow and develop as she has in the last 7 months, that we may be able to start the decannulation process next spring! I can't even fathom life without a trach, but now that I'm seeing a possible light at the end of the tunnel, it sure is exciting! We will continue to pray that her airway keeps on growing!

I left the doctors feeling so happy and excited about the progress Eden has made. Then I was off to be with her in post-op which I knew was going to be rough. She was obviously in lots of pain, but she is so amazingly strong and brave.

Before long they wheeled us up to our room where we would stay overnight for observation. It was a long, hard day, but I came prepared with some activities and when the pain medication was fresh in her system she was excited for a change of pace and some entertainment.

I'm so grateful to my mom for keeping Bentley for me so I could focus 100% on helping Eden. I missed him so much, but I know he was having tons of fun based on the pictures she was sending me while I was away. Thanks mom!

Today Eden is still feeling pretty sore, and she cringes most of the time when she is swallowing, but overall she is doing amazing. She's just pretty happy and content even through the pain of swallowing. She is such a great example to me of having a positive attitude despite what's going on. I love her so much. We are so extremely grateful for all the progress she had made. Many prayers have been answered and we are so excited for what's to come in the next year!