It was low 90’s in Denver today, so the windows were shut and air-conditioning was cranked on! It was very hot!

Ella had a great OT session. The therapist decided to try sweet potatoes again. Ella did pretty well at tolerating them. Of course, they got everywhere!

However, she was tired when it was time for physical therapy. So, we socialized with the PT, but the Bun did not get much exercise! Oh well, we can try again tomorrow.

Ella tolerated her full amount of feeds again today. We’ll see if she gains weight over the next few days.

Psalm 62:8 (NIV)
Trust in him at all times, O people;
pour out your hearts to him,
for God is our refuge.

I am not sure why Ella thought her alarm clock was set for 6:45am, but that is when she started to play in her crib this morning. This probably explains the longer nap late this afternoon.

Today, her food was increased to 250ccs at each feed, for a total of 1250ccs. We’ll see how she does over the next few days.

We did not have any therapy appointments, so it was a relaxing day with the Bun. It was nice and warm, so Ella and I spent some time together hanging out on the deck. Heck, who wouldn’t enjoy watching movies in the shade with a view?

Yeah, the video above has the Bun showing her skills at grabbing the binky followed by her NICU pillow, called a “frog”. And of course, Grandma West made cute covers for all her “frogs”, so we can be fashionable. There was a day where Ella was not as strong, but now she has the binky and “frog” grab down to a science. So cute…

Ella had a few times today where she would just start crying. And she had several runny diapers. Sure enough, teething has struck again. There are 2 more lower teeth that have broken through her gums and she has had everything in her mouth: hands, feet, binky, etc.! So, she would be fine and then out of nowhere, she would start crying. I think maybe her fingernails would hit her sensitive gums. Poor Bun!

We increased her food slightly today to 240ccs each feed, giving us a total of 1200ccs (an incremental increase of 60ccs). She tolerated it fine, so we will likely give her another increase tomorrow.

Our babysitter was scheduled to come tonight, so we could have a date night. Unfortunately, Josh was not feeling well today. So, we are looking forward to date night next weekend.

Today was nice and warm in Denver. We took advantage by running some errands as a family because it is always fun to take the Bun for a ride.

By the way, I want to ease everyone’s mind. Since the news of Josh’s job loss this past week, many have asked about our health insurance benefits. The reality is that we have a short window before we have to start paying for our health insurance. We are so thankful for it not being canceled immediately. That is huge for our family.

The good news is that Cobra exists and although it is very expensive, it is something we can use for up to 18 months, if we need to. Believe it or not, paying Cobra each month is still going to be way less expensive than not having insurance at all for Ella. The Bun incurs costs every day: from special formula to oxygen, doctor visits to therapies and durable medical supplies to medicine. And that is if she does not have any major problems. If you add any unexpected things, we all know that any hospital visits can be crazy expensive. Heck, she became our million-dollar baby before she ever left the NICU in Florida!

In the meantime, please continue to pray that the Lord will provide the perfect opportunity for Josh with amazing health insurance!

Tina is at our neighbors house running her first Entertaining at Home party while Megan (the sitter in training) and I watch the Bun. Ella’s been in a good mood and has started to enjoy her exersaucer again. You just might be able to tell by the pictures below….enjoy =).

OK…so…maybe I made a few funny faces off camera too. =)

Ella was in a great mood today. She had no other therapies besides physical therapy. The therapist and I were noting that it seems like Ella has returned to her old self. It was so good to see…

This means that the Bun was likely getting too tired between OT and PT within a few hours of each other during the day. So, now that we have dialed back OT and trying to conserve her energy for PT, it has worked well this week. We will be trying to continue that trend so that Ella can get benefit from both of her therapy appointments.

Plus, we started giving Ella more diuretic last night. Even today, she has had more energy overall which is good. The PT even noted that her color looked better today.

And, well it happened…It’s unfortunate, but Josh was laid off today from his job along with countless others as part of a “company reorganization”. Fortunately, the company was generous which will give Josh a little cushion for finding his next venture. We’re just thankful for what the job has provided to our family up to this point. It’s been 3+ years and along with countless other things, this company let Josh telecommute in Florida while Ella was so sick in the NICU. That was amazing and meant so much; it was priceless for us.

Please pray for guidance and direction as we seek His next steps. We know He has a plan for everything and continue to trust in His ways.

Psalm 9:10 (NIV)
Those who know your name will trust in you,
for you, LORD, have never forsaken those who seek you.

Wow, Ella is almost 2 years old. Crazy!

Today, she laid in her pack-n-play during occupational therapy. She was having such a good time that she showed off by rolling on her tummy. Too bad that isn’t what the OT cares about – she wants her to eat! In any case, it was another good session. We are going to try and see if we can get Ella to drink again. It’s been a while since we even tried, so for now, we just stuck an empty bottle in her crib so she can start to look at it again.

When physical therapy came later in the day, Ella started off right away by sitting up. She was having a great time with her physical therapist. It was the best I’ve seen her do in 3 weeks. It was a session just like she used to enjoy before. So, I do think there is a correlation. In other words, we have to take it easy during OT by not making her work too much, so she has energy for PT. Otherwise, it is just too much work for the Bun.

Tomorrow, we only have a physical therapy session later in the day. We’ll see if she does well again. Also, our part-time sitter will be coming over tomorrow evening. I’m going to shadow her and see how things go. We’re excited to get that in place.

Ella’s pulmonologist called today and we got on the same page. We are not going to have any invasive procedures for now. Instead, we are going to increase her diuretic. She currently takes 2.5 ml, twice a day. We’re going to give her 4 ml, twice a day. We’re going to do that for the next couple of days and see what happens. We hope that it helps her body out even more than the initial increase in diuretic about 10 days ago.

Also, we talked about Ella’s weight and how she has not gained weight since the last week of April. Our plan is to let the new dose of diuretic take effect for 2 days and then work toward a 10% increase in food. We’re hoping this combination will make her feel better, get her to gain weight and avoid any pass out moments.

Praising the Lord for this wonderful little girl. She is so sweet and special.

Habakkuk 3:3
…His brilliant splendor fills the heavens,
and the earth is filled with his praise.

Today was a heavy day of therapy, but I’m proud of the Bun. She did well.

First, we had occupational therapy. Right when the therapist walked in, Ella was recovering from an earlier melt down. I did not think going over to the mat would set the tone. Plus, I wanted to try and preserve Ella’s energy. So, we opted to conduct the session in the pack-n-play. It worked well. Ella tolerated a lot, much more than normal. And she actually liked the gel in the ziploc bag because it felt so cool to the touch and she was hot and sweaty. It does look like another type of spa treatment, so maybe we’ll just let her think that she is getting the utmost in luxury pampering.

By the time physical therapy arrived, Ella was a bit tired and laid next to the therapist for about 15-20 minutes. Then, we were able to get her to sit up and do some work. She was excited and making more noises than normal, including “sssss” and “ththth”. Again, she did not exhibit the energy level of previous sessions but it was a huge improvement over what we have seen the past 3 weeks. Maybe she is just getting too tired between the OT and PT sessions close together in the day, especially now that she works more during OT. We did modify the OT session this morning to require minimal physical exertion and therefore today’s PT session did go better, so maybe there is a correlation. The next few days will confirm or deny that theory.

Finally, speech therapy came late in the day just as a major thunderstorm started. There was tons of rain and hail beating against the house, making it difficult to hear. But we let Ella stay in her pack-n-play, watching “Baby Signing Time” and encouraging signing. In between having Ella practice the sign for “more” as I would pause and start the video player, we discussed some other ideas. One of them was to get a song from the Beach Boys called “Barbara Ann” and play it a lot in the background. Because Ella likes music, it has good rhythm and almost sounds like baby talk (“ba, ba, ba, ba, ba, barbara ann…”), she may try to replicate the sound if it becomes familiar enough to her.

We still did not hear from her pulmonologist. Thankfully, she has not had any major episodes with passing out which is good. She still loses her color quicker than before and we think there is room for improvement. Although when she is not upset, her O2 level seems to have stabilized, 750ccs during the day and 600ccs at night. Once again, more confirmation that we need to go slow and not undergo anything invasive at this time. Hopefully, we will get some news tomorrow.

Isaiah 40:31 (NIV)
but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

Today was a mellow day for the Bun. Although it was a warm day in Denver, so Ella was quite the sweaty child!

This morning, we had speech therapy. During the session, Ella stayed in her crib watching “Baby Signing Time” videos. The therapist and I discussed some more strategies to help Ella. It was fun to stop the video and encourage her to sign “more”. With lots of repetition, I think she will get this one soon. She already seemed to get excited when I would sign it and then help her. A few times, she intentionally tried although it was more like her arms/hands swinging towards each other mid-line. But the therapist said that it was intentional and we gave a big applause for the Bun.

It took Ella a bit longer to warm up to the idea of occupational therapy later in the afternoon. But with slow coaxing, the therapist was also able to get the Bun to practice tactile stimulation.

We did not receive a call from her pulmonologist at the Children’s Hospital today, so we are hoping it happens tomorrow.

Ella enjoyed hanging out on the patio with her Daddy when he got home from work…so cute.

We had a great day hanging out as a family and celebrating Father’s Day. Even just hanging out this morning was fun.

Then we headed out of the house. First, we started off lunch with some close family friends in central Denver. It was a beautiful day and it was our first opportunity to check out their house. They smoked ribs and served with beans and cucumber salad. We just had a fantastic time in their company. We didn’t leave till about 5:30pm. Then, we stopped by to say “hello” to Grandpa and wish him a Happy Father’s Day (although we did not take any pics).

From there, Josh wanted to stop and visit a friend at the Greek Festival for a few minutes, so the Bun and I hung out in the car.

Finally, we proceeded over to Greenwood Village to enjoy a long dinner on the patio. It was such a pleasant day and remained about 70 degrees until we left the restaurant around 9pm. All in all, a great weekend.

Ella is so fortunate to have such a loving and caring Daddy. The Bun and I are thankful for the role he has in our lives. We love him so much!