Today, I'm Going To Take A Day.

I woke up today already knowing that it would be an emotional day. Myles appointments with gastroenterology are always mentally taxing and my emotions run wild. WILD. I was so hopeful for good news today. Myles hasn't used his feeding tube in months. He's been on a 6 month oral only eating trial and it's done this month. I was hoping to hear the doctor be happy to tell me that we can now schedule to have Myles' tube out. The end of the feeding tube journey!

We were hopeful halfway through this trial even though his weight gain hadn't been significant, but he had shown growth in height. The GI doc was happy with that growth then. But that was then.

He did not meet the requirements the doctors need to have his tube removed. We have to go back to supplementing calories with tube feeds.

Unfortunately, he has not grown at all in the last half of his trial. Weight or height. Nothing. The good news is, he is orally eating enough to maintain his weight and is not losing anything. Unfortunately, it's not enough intake for growth... which a 4 year old needs. Especially since he's the average size of an 18 month old. He is currently 24 pounds. So, we'll go back to supplementing tube feeds again.

He tried really hard and has made progress in leaps and bounds from where he started - being completely dependent on his tube feeds. I'm so proud of the progress he's made. It is still hard to hear that it just isn't enough. Being a mom, you want the best for you kids. It's hard not to take it as your own personal failure when a doctor tells you it's just not enough. It's something I've had to learn how to handle. How to be human and feel hurt and then remind myself that we are in fact doing everything we can and that is enough.

I'm so grateful for the prayers and thoughts on my families behalf today. Lots of reminders that we are enough. That I am the mom Myles needs to get him through this. That I am a good mom and I should not take this as a failure. Yes, it's not the news we wanted today but it's not terrible news either. We'll get through it.

So I decided that today, I'm going to take a day. I'm going to feel all these emotions and let them run wild. I'm going to take a day and let me be sad. I'm going to cry and be mad. Be human. I'm not going to finish the laundry or do the dishes or clean up or make sure kids do their chores! I'm going to take a day.  However, I am going to snuggle my kids and watch them play. I am going to watch Toy Story 4. I am going to look at their sweet faces and soak it all up. But that's it! Nothing else is getting done.

Today, I'm going to take a day. But tomorrow, I'm going to pull myself out of bed despite not being able to sleep tonight (maybe I'll sleep in a bit?). Tomorrow, I'm going to put one foot in front of the other and I'm going to move on. We have to deal with what comes our way. Heavenly Father won't give us more than we can handle....He provides a way. Or let me reword that...We may be given more than we can handle alone. But I am not alone. He never leaves us alone. We just have to let Him in. It's ok to feel all these emotions. It's ok I'm disappointed that we're not being referred to surgery to have the tube out, but instead we're starting feeds again. I'm going to lay all these emotions and thoughts at the feet of our Savior. I will Trust in His plan. And then I will move on. I will start Myles supplement feeds and be Grateful that I live in a day we have modern medicine and we can receive the help we need. Be Grateful that Myles life was saved by his tube he solely depended on at one point. He is HAPPY and LOVED and that is ENOUGH.

But today, I'm going to take a day.