I felt it on my heart to update our community on the past few months... 

 I'm a bit in disbelief that it is already December and we're approaching Christmas already. 

I keep meaning to post an update, but anytime I have one drafted it changes again. As most of you probably know, we had a pretty difficult first summer in Arizona. Instead of enjoying our new city or traveling up to the PNW for family time and work, we ended up spending a lot of it at Phoenix Children's ICU or at home in the A/C with our mini hospital. Not to mention, it was the hottest summer Phoenix has had on record. 100 consecutive days with temperatures reaching a 100 or higher. 

 

The boys required care has changed and at times, has become more complex. It seems like they both require a bit more around the clock care than they have in the past which can at times make it difficult to accomplish much outside of caring for them. I've been reflecting about how to best articulate where we're at. For me, that meant gratitudes (highs) and prayer requests (lows). 

 

Here are some highs from the last few months and some lows/prayer requests: 

 

 

God has been so faithful in providing us with some solid in-home nursing care and an amazing team of providers. It took time to build this, but we can finally say that we have an incredible team rallying behind us. Which has been life changing and so helpful. 

 

Ryan House and Palliative care program. This is a big "why" behind our move to Arizona. It's been so nice to have a whole team of support through the palliative care team as well. 

 

Both Brock and I got the opportunity to go to see our families individually for a few days since we were unable to do our original planned trips up to the PNW as a family. Although it was sad to not all do this together, seeing our community and hometowns was good for the soul. 

 

In September, Braxton turned 4 years old! We had such a great time celebrating him all week long. We were able to take him to the aquarium for the first time which was so special. He thought the jellyfish were the coolest thing ever. 

 

In October and November, we were able to spend a lot more time outdoors and enjoy time with family who visited. We keep saying how grateful we are to live in a place where people vacation or like to visit this time of year because it gives us the opportunity to connect with loved ones and community. We were able to host our first Thanksgiving in Arizona this past week with the Rule side of the family (see cousin picture below). Super grateful for each of them to come down with their families to spend it with ours as it’s more difficult to travel this time of year due to peak respiratory/ flu season. 

  

 

 

Rocky has been up and down since his last hospital stay in July. He has continued to struggle at times on the respiratory side of things and getting his seizures under control. He is still requiring nasal cannula during the day and Bipap at night. We're working to slowly decrease his level of oxygen during the day that he is on as tolerated. We're hoping to continue to do little "sprints" of time where he can be off of oxygen for 30 minutes or so here and there. We just keep saying how proud we are of him as we didn't know if he'd ever be able to be off of oxygen. Prayers that this continues. 

 

Sleep. Sleep has been tough at times. Nights have gotten a bit more tough with the needed breathing support, seizure control and pulse ox for Rocky. We’ve been working to find a night nurse for a few nights a week but have had a hard time finding someone that is a good fit. 

 

Braxton’s been having a tough time with what we think to be neuro storming/irritability since about end of August. This means that he can start crying out of nowhere and often will cry for hours. It’s been hard to best figure out what he needs and how to support him.  

 

Continued protection over our boys as we approach respiratory season. We're so thankful to live in Arizona where we can still be outside and enjoying life during the cold and flu season, but we still need to be careful and mindful. As you know, sickness is really tough on both boys. 

 
I’ve included a special cousin photo from Thanksgiving week! What a gift it was to be home for Thanksgiving and not inpatient at the hospital for the first time in about 4 years. God is good! 

We're so so so thankful for all of you, the prayers and support. Lots of love and gratitude. Thanks for being such an instrumental part of our journey with the boys. More updates to come.