Sunday, April 29, 2007

Elijah Update (April 28)

Dear Fellow Elijah Warriors,

Our Elijah fan club is spread far and wide... all across the United States, Africa, South America, Europe, Asia, India, Iceland, New Zealand... It is amazing how many people in the world have heard of Elijah and are praying for him. Thank you! We received a package the other day, and before we opened it we were arguing about whose friend this was. Neither of us recognized the return address. We opened it, and the card read: " You do not know me, but I have gotten your emails from ___" We did not even recognize the name of the person mentioned. Yikes! Our story is being passed and passed and passed! Thank you for that very special package and note. :)

Every day we are amazed at God's greatness and love. We look at Elijah and think about the love that we have for him. We know that God loves Elijah even more, and that is overwhelming. How much more did God love His only son, Jesus. WOW! The pain that He must have felt watching Jesus die for the sins of the world. We cannot even imagine as we have painfully watched our son go through so much.

Elijah has some great news to tell today. On Wednesday his surgeon came to see him and wanted to pull out his left chest tube. A meeting with the other doctors convinced her to leave the chest tube in for one more day. SO on Thursday morning she came in and removed the tube. There was great rejoicing in his room and in the PICU. His parents were elated because they could pick him up and cuddle with him easily. Elijah was relieved because that weight was finally gone.

He has been sent one step closer to going home. On Friday we were moved from PICU to the Pediatric floor. YEAH! He is free of everything except his oxygen monitor to tell us how well he is breathing.

Going home will involve a few things though... Elijah is not up to eating as much as he should be. Today I think we are going to include some of his mom's milk in his feedings to see if he likes that better. He has to show some weight gain in eating before we will be allowed to head for Ness City. (Tonight we had to give him a feeding tube. He was not eating well and we were growing concerned so hopefully this will help expand his tiny stomach some. He has not eaten well in 5 weeks, being on IV fluids, so hopefully this will help.) We also will have the challenge of pumping his shunt every 30 minutes. During the daytime his mom can handle this pretty well but during the night we face a challenge. We will all need some sleep and I do not know how we will face this but will figure that out.

The nurses have been telling Elijah that he is giving his parents gray hair (mainly his mom). I have gotten emails from people telling me that I look tired. A Ronald McDonald Manager asked Joel about his mother-in-law... meaning ME! So, after all of this I decided I need to get something done. I went yesterday to get my hair cut and colored. So, now I just look like a stressed out mom with colored hair. HA! One of the PICU nurses set me up an appointment at her salon and I really liked it. So, Elijah gets a different mom for a few months.

Please pray with us for the following:
* Pray that Elijah's body will continue to dissolve all the clots from the SVC Syndrome (Superior Vena Cava). His body is circulating so much better now.
* Pray that the blockage in the Lymphatic System, especially effecting the Thoracic duct, will dissolve and allow all of his Chyme to go to the right place through his body and not into his chest cavity.
* Pray that we will be able to keep up with his pumping to keep his chest cavity clear until he no longer seeps into that cavity.
* Pray that he will start eating well.
* Pray for wisdom on treating Hemophilia B. Do we have another catheter put in to give him Factor? Do we infuse only when we need to? Do we worry about his bruises? Do we worry about his teeth coming in? These are all concerns that we are going to have to work with and deal with as a family.

A friend, Janet Sonnenberg, is a mother who has been through far worse trauma with her son then we could ever imagine. She is the mother of Joel Sonnenberg and author of the book JOEL. Check it out if you have not to hear this amazing story. Anyway, she was on a plane and read in the in-flight magazine about a "cutting edge" treatment for Hemophilia B. The University of Nebraska has been doing some research involving pigs milk and an oral treatment. So, another question we have is: Do we buy a pig? :)

Please pray for us in these huge decisions for Elijah. He is such a wonderful little boy with lots of challenges. Pray for peace for his parents.

Thank you so much for all the prayers, cards, notes and love.

JJ & Super E

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