another update

Well, time marches on and so must we.
We are home today after another trying stay at Children's hospital. Not that I don't LOVE this hospital, because I do. Well as much as I can love a hospital...

Anyways, I owe them a lot. My child's life as a matter of fact.

Life has become a crazy mix of up's and down's and peace and chaos. It is never ending. But so is God's love.

So after all of Ej's procedures (endoscopy, colonoscopy, pancreatic stimulus test, bone marrow biopsy, and 7+ intestinal biopsies) we are trying to wait patiently for the results. He is once again stable and we are managing at home.

Our new routine requires lots of meds, every three hours, around the clock. It requires countless follow ups and many home health care visits as well as at home therapy. The road is going to be long and often difficult. The fact is though that I would be willing to do anything to have him here. I am so thankful that he has fought this hard to be here and for the wonderful doctors who have fought equally as hard.

I do not know what the future is and what it holds. In reality we don't even know yet what our sweet baby boy has. With diagnosis like shwachman diamond, IPEX, cycstic fibrosis, cancer, and many others being whispered around, we pray and give it all to the Lord. My son is on the alter. I won't lie and say that it is not a scary place but it is also peaceful. I know that is contradicting. Yes, I can not control what will happen next, but I trust the one who does. And oh how I do trust!

So I look to the future with hope.
I hope that his brain matter decrease will not affect him developmentally!
I hope his crashing and failing immune system will be healed in Jesus name. That his bone marrow will win this fight and his neutropenia and anemia will resolve!
I hope that his pancreas will start producing the enzymes that are needed for my babe to be able to breakdown and absorb nutrients.
I hope his malabsorbtion will subside and my sweet heart will no longer be chronically protein and vitamin deficient.
I hope his lymph nodes in his stomach are able to return to normal because he will no longer have an inflammatory response to whatever is going on.
I hope that his antibodies will stop attacking his neutrophils!
I pray he eats and is able to take his creon so he can gain weight and can stay home with us! That we do not require a feeding tube permanently and that my baby starts to thrive! In Jesus name!

I hope in the Lord. I trust in Lord. I lean into the Lord.

Thank you all for walking this path with us. Thank you all for your prayers. It really does mean more than you could know!