We would rather be berry picking
Ronan and family
Today was a hard day. Medically, things are steadily improving. We are on track to hopefully discharge to Ronald McDonald on Tuesday. Renal labs continue to improve and we've been changed from labs every 8 hours to labs every 24 hours! Blood sugars continue to be high enough to need insulin correction but are no longer in the 400s and 500s! No dialysis since Monday and dialysis catheter set to come out on Monday! All big milestones. All good news.
But, yesterday and today were hard. Ronan was feeling super crummy and spent a good majority of the day sleeping. He was nauseous, his appetite was low, and his energy was lower. All the chemo is finally catching up to him and it's so hard to see him feeling awful. Most days we've been here, he's been active a lot of the day even just being up in the room drawing or building leggos, etc. He is walking airplanes through the halls on test flights or using the pump car out there. We made a scavenger hunt for the hallway and he's wanting time in the play room, etc. He takes a lot of naps in between but he's been awake and semi-active. Yesterday and today he wanted to stay in bed and sleep or watch TV and that's about it. Getting him to take a couple of laps was a challenge.
Today he just seems so small and frail and sick and it makes my heart ache for him. I know he is incredibly strong and tough in that little body but it still hurts to see him so unlike himself. My Ronan bug has always been a why walk when you can run little boy. He took his first steps at 9 months old and never looked back. He can spend 30 straight minutes on the monkey bars and climb the fire pole over and over. He can talk your ear off. He's been tired for several weeks but today was a new level and a stark reminder of the road ahead.
It helps a little to remind myself that he's a boy with some serious will power. He has challenged Bryce and I since the day he was born! He questions and pushes back. He is brutally honest and is so dang independent. That fire that sometimes drove me crazy as your mama is going to serve you well here baby. Keep your spitfire. Use it when you feel down. Maybe you got a little extra from the get go so you would have it to get you through this. We love you fiercely Ronan and we are here to hold your hands. ♥οΈ
These summer months have always been our favorite as a family, especially you who loves the sun. I know it's so hard to be cooped up. If at all possible, we will still make time for beach days and berries and camping. Here's to sillier days to come and hoping for a 4th of July outside of these walls, soaking up a little healing sunshine. I can't wait to see this silly face again!
Comments
Kaycie Albert
I am hoping for all those things for your boy too! π Glad to hear things are going well medically, and I hope he continues to have better days ahead.
Sunshinee156
Rest up and heal now so you can enjoy the days to come. You are an amazing little guy. Keep fighting the fight and know I am thinking of you and your family. π
Sunshinee156
Natalie Gwyn
Canβt imagine how hard it is to see him not feel well and be so tired. Sweet boy! Praying for your mama heart Jenna! Praying for an outside day for the 4th also. β€οΈ
Diane Segal
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