This summer has been such a special one, filled with lots of family time and fun memories. The older the boys get the more creative we can be with our outings, and their reactions to even the simplest things is a blessing.

We took the boys to the drive-in theater last week for the first time to watch How to Train Your Dragon, the live action version. Malachi was VERY into the movie and it was a little too much for Levi. At one point he got scared by the dragon and shouted at the screen: “All things work together for good for those who love God!” He has us laughing often at all of his antics.

The evenings have been cool enough for some family walks and almost every night is family game night! Malachi LOVES playing games. His new favorite is Uno Attack, which shoots cards out at you. He and Levi have been teaming up trying to beat mom and dad and hearing Levi lean over and whisper the cards to Malachi to keep him included is so sweet to watch.

We tackled an incredible amount of appointments over the last two weeks, but thankfully that clears up our calendar for a bit and gives us several appointment free days to look forward to.

The boys are both underweight and their GI doc isn’t pleased. We have plans set to help add some calories through their g-tube feeds by increasing their volume. Levi gets his g-tube feeds overnight so we attempted to increase by 3 more ounces and he spent all night projectile vomiting. We are going to slowly increase the feeds to make sure he is tolerating it better, but every night as I go to sleep I wonder if we are going to have a repeat incident and wake up to a mess!

Malachi still isn’t sleeping well so we are introducing a new medication to help with muscle spasms to see if it will allow him to be more comfortable when laying flat. We also put a recliner in his bedroom so when he wakes up, usually about 2 hours after he goes to bed, we transfer him to the recliner with support pillows and he gets a few more hours of sleep in the sitting position. This weekend he has been staying up until 4:30/5am, unable to get comfortable. We reach full dose of the new medication tonight so we will see if it is a viable solution. We have to come up with something! If it weren’t summertime and I didn’t have Jake here to help with Levi in the early morning I wouldn’t be functioning very well.

When we were in the hospital for Malachi’s fusions Chick-Fil-a reached out and asked if they could set up a surprise to cheer him up. We didn’t know what they had in mind, and had to delay until he was back to himself, but last week we finally made it over to our local Chick-Fil-a for his surprise! They had a table set up for Malachi and made him the VIP of the day. Corporate sent a giant box of presents for the whole family and they made Malachi an honorary employee with his very own name tag. He was overwhelmed at the actual event but is very proud and has been smiling about it ever since.

They also let Malachi order anything he wanted off of the menu and of course he ordered a chocolate milkshake with extra whipped cream!

What a sweet and kind gesture it was to our family. One of the biggest priorities in our life is making memories- recapping all the fun moments and stories is one of his favorite things to do. “Remember that one time…” This is a very special one to add to that book.

Last weekend I headed a few hours away for a special needs mom retreat in middle Tennessee. A few days before the retreat Jake ended up getting sick, and if you know my crew you know that sickness, even a common cold, knocks Malachi down for weeks. As the days ticked by I was just sure that the sickness would spread and I wouldn’t be able to attend the retreat.

I truly believe God bubble wrapped the rest of us and by Friday night I was in the car and headed west. As I drove over I started to feel self conscious about being solo for this event but I really really needed the time to reconnect with the Lord.

The conference was so special. Being in a room surrounded by other moms in similar circumstances and trials was amazing. But worshipping alongside of them was an emotional experience for me. Here we were, each of us carrying a heavy calling, but still choosing to sing praises to God. The testimonies in that room would blow you away. But there was such a comradery in our journey through hard things with unknown outcomes. So many of us in that room have walked through the shadow of death many times.

And Jake did phenomenal holding down the fort back home. There are so many hidden tasks that we have to be responsible for….medication administration (Levi gets 5 doses a day and Malachi gets 16 a day), feeding pumps, diaper changes (quite a process right now for Malachi), breathing treatments, and so much more in addition to normal, every day life and tasks on very little sleep. It’s easy to get overwhelmed but he did excellent.

I left the conference feeling rejuvenated to continue in the calling I have been given. And a freshened perspective about God’s presence even in the darkest places of our walk.

Romans 15:13 “Now may the God of hope fill you with all joy and peace in believing, so that you will abound in hope by the power of the Holy Spirit.”

He is the God of hope and our joy and peace can only come from Him. I can’t imagine this life without confident hope in the Lord, a true gift from the Holy Spirit.

Thank you for checking in on our family, and continuing prayers over our boys.

Sincerely,

Leah