Thursday, November 19, 2009

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!

9 comments:

Beverly said...

You are an inspiration to me! Your faith will see you through any adversity! Satin must release your baby in the name of Jesus!

I will continue to pray and praise the Lord for the promises of life, joy, and peace!

Love,
Aunt Kim

KK said...

The Design Girl sent me, and I'm so glad. I'll be praying for your little one.

Jane said...

I just found your blog from Kelly @ Kellys Korner.

I shouldn't be reading blogs right now, I should be studying, but I'm so glad I felt the need to take a break from the humdrums of med school finals weeks. Yes, plural.

Reading just a few of your posts has re-motivated me to study hard,and thank you for that.

I'll be remembering your family in my thoughts and prayers in the coming days and weeks.

I have a book I'd love to send you, The Spirit of LO. If you're interested, let me know at jane2581@gmail.com

Many thoughts and prayers your way!

Beth said...

I was sent over here by Danielle. I will be keeping your son and your family in my thoughts and prayers. I truly hope everything you pray and wish for happens. I hope you dont mind if I add you to our prayer list at my church & in our prayer group. Many prayers & God Bless.

Anna said...

I could hardly read with all the tears swelling in my eyes...from one mother to another I can only imagine the worry..the love..the hope in your heart. Sending positive love and light to you all and a prayer that little EJ makes a swift recovery..so that he can experience and also bring all of you...EJ...Eternal Joy :) x0
Much Love,
Anna

Zingo Tots said...

I am so sorry to hear all you are going through. I've grabbed your button and am putting it on my blog to spread the word about EJ and hope that more prayers can be said for him. Will say a special prayer tonight for all of you.
Jill

Laurie said...

I found your blog through Design Girl. Like Jane stated above, I should be studying for my final in the morning. After reading the majority of your blog-old and new-I was brought to tears with what you have to go through. I will be praying for your sweet family.

Tracey said...

Sending lots of happy thoughts and prayers to you and your family. EJ is a special little man. I'll be placing your button on my blog for all to see.

Shanna said...

Praying for EJ!!!

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