Too busy liv'n life to blog

Wow. So sorry to leave you guys hanging after that last post for so long. Every day I think, "today I will totally blog" and then after eating dinner at 9:30pm I just want to hang out with my hubby and you get neglected. Sorry. Honestly, probably the best way to see what we're up to day to day now is to follow Brian on Instagram. You can go to the top of the blog to the "follow us" and once you click on that  you can click on "Instagram".

So, Liv has been home and doing well for 2 weeks now. We have been busy spending a lot of time with friends and family, snuggling, and doing things the girls love to do. I will surely post A LOT of pictures from the past few weeks sometime soon (wink wink) but I have to go through them all and there are tons of them.  Just to wet your appetite...

She has that look on her face because we made her sit in between her sister and her 5 month old cousin that day for pictures. It was not her favorite thing. Doesn't she look annoyed, but pretty? Gosh, looking at it, she also looks old.

Here is the deal on her medical status...she is healthy and not infected with anything right now, which is great. She also is dealing with having sicker and sicker lungs. Right now she is retaining more carbon dioxide in her lungs than usual. If we were following the path we were previously taking, she would be on bipap at home. But she is not. Brian and I have decided to admit her to the pediatric Hospice program here in Kansas City and to follow more of a comfort care path for her. Instead of more labs, needles, hospital visits, etc... we are dealing with any medical issue here at home with the help of our wonderful nightly nurses and the Hospice Carousel team. She is very happy to be with us all the time and we know we have made the right decision for everyone, especially Olivia. Right now the only difference in Olivia is that her sleeping patterns are erratic (thank you, hospital) and though we are trying to straighten that out, we're kind of just letting her do what she wants (thanks night nurses!) With that said, we know that at some point in probably the not too distant future Olivia will get sick again with the MRSA or something else. We will continue to treat her at home unless we cannot control some unforseen pain issue with an IV. The carbon dioxide build up in her lungs will eventually become a natural anesthetic and cause her to be sleepier more of the time and also keep any pain to a minimum. There will be no labs, no needles (again, unless we cannot control some pain issue), no scans, no tubes, no hospital. 

In the mean time, we are busy living life: riding on boats, going to preschool, swinging, park visits (VERY early in the morning--stupid heat), and lots of hanging with friends and family. We are having the time of our lives, and we can tell Olivia is too. Now, finally, fun comes first and meds and treatments come next.

Thanks for all of your support, love, and prayers. We appreciate it all so very much. Our community is so strong and active that people are coming over to help clean, bring meals, and help me balance both girls while Brian is at work. All of these things give Brian and I the sweetest gift ever: more time with our family. Thank you from the bottom of our hearts.

I will try to be more regular with the blogging thing. Lastly, I will brag on my husband. He preached at our church last Sunday on suffering (go figure) and killed it. Here is a link to the audio if you wanna give it a listen. Scroll down to the "sermon" section and he is on July 15.

Sermon