honesty.

Okay I need to get this off my chest.
First let me start by saying that I am so eternally grateful that EJ is here on earth with me. That he is here and that we are so far being able to manage his health issues. I am so thankful because I know there are so many sweet little ones in heaven, so many that received their healing in heaven instead of on earth. So many cancer patients and transplant patients. Sweet children who literally grow up never leaving the hospital. I pray for all of them and I am so thankful we are doing as well as we are.
With that said...

I am so sad tonight and I praying so hard to be delivered from this. I do not want to be ungrateful, but how could I claim to be honest if I wasn't. I am only human and I have weakness. Watching my child go through what he went through today, again and again and again...It wears me down.....

Every time Ej has a fever over 100.5 we have to take him in. Every time. Infections can very quickly become fatal for him since he lacks a sufficient immune system. He has to receive IV antibiotics every time. If his levels are below 500, we will be admitted every time. Since he is prone to infection, this happens...you guessed it...all of the time.

Since October the amount of time we have been to the hospital is staggering.

Poor EJ has no clue why everyone at the doctors hurts him. His little face breaks my heart when they try "one last time" to get an iv. He looks at me and cries "mama" but I can not make it better.

It is so horrible to feel this way and it makes me so mad that I feel it, but I do. I am heart broken that my sweet boy has to go through all this torture and there is no end in sight. The new normal is grinding me down, breaking me.

Adam told me since I have come home from the hospital this last time I am different. And I am. The little mundane things like cleaning and laundry are so hard for me. I am finding it hard to assimilate back into regular life. I am changed. And, honestly, not for the better. I am always waiting for the shoe to drop and for a fever to spike. For him to become dehydrated again or to refuse to eat or for anything to go wrong. I am constantly thinking about losing him. About how I would handle it and what I would do. It is like my mind is trying to prepare for the worse case scenario. There is no reason to do this but I can't turn it off...

He has lost more weight again. I was expecting this since he is sick but it is still so hard to see those numbers on the scale.
All of this is so hard.

I can do nothing. I am completely helpless is all of this. All I can do is take a back seat and watch and hope and pray. I hate feeling powerless. Today while waiting for his results, Austin and I prayed together for his level to be above 500. I keep taking it to the Lords feet and He is always so faithful. I feel as if I am one big ball of mess and that I don't deserve such a faithful God. On the other end I feel as if I demand to much from Him. How do you walk a line of gratitude and demand?Or am I the only one who struggles with this?

Today I learned that the pharmacy had given us the wrong iron supplement. The one they gave us had 5% alcohol in it and was the adult version. Because I have become OCD I read this and refused to give it to him. So our doctor called in the correct formula and all is well. But I don't want to have to worry about all his meds. About every little detail. It is driving me crazy. At night my thoughts seriously do not turn off.

I feel like I could write a medical journal at this point.

I am so tired. Literally. After a week of no sleep I have little to no patience left and little to no strength. My reserves are shot.

So as I sit here with gratitude for a God who is loving gentle and kind, I am also worn, tired, and full of sadness. I praise the God who says both yes and no. Just sometimes, sometimes, I wish yes came a little easier.

Please pray for my strength. I feel like such a prayer hog, seriously, but you all have no idea how grateful I am. How much each and everyone of you mean to me...

quick update

update (9pm): We are home, and Ej barely made it without getting admitted. The cut off is 500, and his level was 540. So three IV attempts, two shots of rocephin, and some presciptions later, we are home and very thankful! I am so thankful for a wonderful team of doctors!!! He still has a fever, and I praying it goes away or we have to go back tomorrow.

Original post:
I apologize in advance for how brief this post is...

Bryce is doing AMAZING. He is off the vent and just has the canula now. He is being taken off the cooling pad today and passed his EEG with flying colors. They are now looking at a complete recovery!! He should be going home in about a week!! Praise Jesus!!!

Easton is still so sick. He is just not kicking this bug. He was up all night with another fever (this time 101 under the armpit) and that is passed the temp we have deemed "do not pass go, head straight to the hospital".

I called Hematology and they got us in at 12. I am seriously praying he is not admitted. Sigh.....

So keep up the prayers, my pray warrior friends.
I do not doubt of have fear, for I KNOW the One who is near!!!!!!