GABE SHARES THIS SUNDAY MORNING…

Today is the 231st day of our journey. It begins at 3:00a. My baby calls for me because she has to go to the bathroom. So, I awake and unplug her from all of her chords (pole sock, blood pressure & heart monitor). When she is done, I pick her up to put her back in bed and put all of her monitors back on her so the nurses can monitor her while she sleeps again. As for me, I try to lay back down to rest but who can rest knowing that in a few hours the nurse will be in to take blood for tests to see if she is still losing blood from somewhere that they don’t know. It could be her ulcers or it could be just into the skin. My hope is that the test comes back same as the night before, which is stable and no transfusion needed. It’s a guessing game until then. So, I sit in the chair next to my baby and watch her sleep. Hoping and praying that when she wakes up, she looks at me and says, “I feel good today dad. I’m in no pain. And, today is gonna be a good day.”

To all those parents out there that will read this message, hug your kids and tell them you love them. Do not take one day of being healthy for granted, because in a blink of an eye…it can all change. Not only your child’s life will change, but your life will change.

I LOVE YOU GIRLS.

Remember

RUN HARD

RUN FAST

JUST RUN

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Stephanie updates us on Harlie late last night and again this morning:

9:28p Saturday, April 18th: “Her blood level was at a 9 after the two units of blood they gave her last night, but it dropped to 8 this morning. They are watching her closely. If her blood drops more or her heart rate is still high, they are going to give her more blood. The doctors are trying to avoid having to go back in and scope her. They can only go back in so many times. However, GI is on call and watching closely as well as the surgeon. He is on call just in case the bleed is a big one. She will then need to  have surgery. She seemed to be doing better today but tonight she started getting the excruciating stomach pain again just like the night before last when she lost so much blood.”

10:46a Sunday, April 19th: “She will be getting another unit of blood today. Her numbers dropped a little and knowing that she has a hard day coming tomorrow with IVIG transfusion, pulse steroid doses and methotrexate, they want to make sure she’s ok for tomorrow’s day. A day with a lot of treatments that are very hard on her body.”