It is hard to believe. Nurse Janet and her husband Jason are visiting us from Gainesville, FL. They arrived this afternoon and we hung out at our house for a little while. Then we decided to drive and meet up with Josh. They had never been to downtown Denver and it was a warm evening, perfect for outdoor entertaining.

Ella had a fun time just being outside too. She loves the change of scenery and checking out everything. She really behaved herself well. We went to the Rio Grande Mexican restaurant to enjoy some margaritas and smoke free outdoor dining. It was a great time. Tomorrow, they will head up into the mountains to enjoy the rest of their vacation.

The OT visited for the first time today. We spent the session going over history and getting ideas together for future sessions. Ella’s swallow study is scheduled for August 7th at the Children’s Hospital. Once we can make sure that she is not micro-aspirating, we can move forward again with solid foods. In the meantime, she has some other ideas for exercises that we can do without foods to build up Ella’s feeding technique.

Tonight at the restaurant, Josh was giving me a break from holding Ella so that I could eat. He started singing to Ella which he does frequently. She loves the sound of his deep voice. It is so evident because she snuggles in tight to his chest so she can hear his voice along with his heartbeat. Such a sweet picture of daddy and his girl.

Ella had a great day.

The PT came over around 10am. I was a little concerned because Ella ate around 9:15am and sometimes she likes to take a cat nap. But as soon as she set her eyes on the PT, she smiled. This means that the Bun likes her! That is so good and reassuring, especially this early in the game.

We were able to work together for the entire hour that she was in our home. And surprisingly, Ella tolerated a lot. She got tired a few times and required a while to rest. But overall, she was in a great mood.

The PT comes tomorrow afternoon. I’m hoping for another success. Either way, today as well as last week were both good sessions which is important early on.

Also, we are getting excited because Nurse Janet is going to be starting her vacation this week in Colorado and she is going to stop by and visit with the Bun before she heads to the mountains. We’re so excited to see her!

It’s going to be surreal to see someone we love from Gainesville…someone that experienced our journey along with us in person. And someone that loves our girl too.

We’re so thankful for Ella Renae.

Psalm 138:2
I will bow down toward your holy temple
and will praise your name
for your love and your faithfulness,
for you have exalted above all things
your name and your word.

Today was a mellow day with Ella. We just hung out in the house with the windows open, enjoying the cooler 70 degree weather.

Ella has a physical therapy appointment tomorrow afternoon. We’re looking forward to seeing the PT again. I’m just hoping that the Bun will be responsive. She needs help so much but just hates to do the physical work! She gets cranky fast and can only tolerate a few minutes at a time. So please pray that she will somehow, someway decide that physical therapy is fun.

We go back to Dr. Perry’s office in a few weeks. I will be interested to see how much weight she has gained. She feels like she is getting heavier or I’m just getting more tired!

We’re still waiting to see some teeth. So far, it has all been a tease.

Thanks for the continued support and prayers. Only 17 more days until Ella turns 1 year old…

It was a busy weekend. Along with finishing up all of our projects around the house, we knew that it was Grandpa’s birthday on Tuesday and it would be tough to celebrate mid-week. Later in the afternoon, we headed over to his house.

We gave him a new address plaque and a framed picture of Ella. Also, Josh helped out by doing lots of maintenance projects around his house.

While the boys were getting stuff done, Ella was watching videos in her travel crib while I was getting my fair share of kisses and affection from the two dogs.

By the way, did I mention that Joslin was my only little girl before the Bun entered the world?

We ate pizza for dinner and then it was time to sing Happy Birthday to Grandpa. Hopefully, he made a good wish for this upcoming year.

Although Ella could not partake in the ice cream cake, we ate some for her! I know we have not given an update on the food situation in a while, so here it goes.

When we visited the doctors the first week in Denver, they ordered a swallow study. We filled out all the paperwork and are waiting for a call back from the Children’s Hopsital. They want us to proceed with occupational therapy and feeding her foods, but they also don’t want us to push hard for something that could be harming her. In other words, the swallow study will assess to make sure that she is not micro-aspirating into her lungs when eating and drinking.

When I was trying baby foods during early June, she was choking, gagging and retching a lot more than normal for her. This experience combined with the concern about her micro-aspirating, we decided to hold off on any forward progress with solid foods. We’re hoping that her swallow study will be scheduled soon and that she will pass with flying colors, so that we can get back to eating pears and apples!

Counting down until the big day…only 18 days left…Ella will be 1 year old! Praising God continually for our little miracle.

Ella watched her first fireworks from a distance tonight. We had a great view of the Denver metro area skyline from our master bedroom. We were able to see many different shows.

Ella wore her first 4th of July outfit sent by Grandma West.

Praising God for our freedom and a special thanks to all the service men and women who protect it.

GOD BLESS AMERICA!

Dr. Abman, Ella’s pulmonologist, called with the results from her overnight pulse oximetry test. Her oxygen was at 1/4 liter (250ccs) and the results looked great. He mentioned that the test is a good measure for us to use on her progress and that we will likely do more of them. For now, he would like to keep her at this level of oxygen. I made him aware that she was using a higher level of oxygen during the day. He wants us to wean her daytime oxygen to meet the 250ccs and simply raise the level if needed. But he thinks that she should be able to use the same amount during the day and night, for the most part. So, we are slowly working towards 250ccs all the time.

Only looking back a month ago, we had just arrived in Denver. Ella’s oxygen levels were much higher. Praise God that she has adjusted to the altitude quickly and that her new pulmonologist has given her an increase in the medicine that is helping her heart and lungs to work together more effectively.

It was nice because Josh’s work closed up shop in the afternoon for the holiday so he was able to come home earlier than expected.

We had Grandpa over for dinner tonight and afterwards the fun began! Ella and I played together on her mat while Josh and Grandpa picked up the Wii remotes and started playing virtual golf in the living room. And of course, each time that Josh or Grandpa would do just the right amount of strokes, the big screen would show in huge letters “Par”. It was hard not to think of Ella’s NICU friend, Par, and how well he is doing lately. It just brought a huge smile. Someday those two will have a reunion…

Ella met her new physical therapist today. Although we did not get a lot of work done, it did give us a chance to meet her.

At first, Ella was fine. Once some of the work began (we were showing her what we worked on during our sessions in Florida), Ella started to figure out what was going on. She decided that she didn’t like it, so all it would take was a glance at the PT and she would melt down.

Overall, Ella did much better than I have seen her do in the past with new therapists. Even though she had her temper tantrums, it took a lot less time for her to calm down. Hey, that is a step in the right direction.

I am excited because it seems like we may have met someone that not only knows physical therapy, but is truly interested in seeing Ella take the next steps. Once we get into the true visits each week with more focused therapy, we will see how the Bun responds.

And finally, Ella had to try on some new shoes that Grandma West sent her. Cute for the summer time…