Saturday, December 5, 2009

mr. lots to say!

Well normally I am the one with lots to say, but today, the award goes to a certain little someone....

Mr. lots to say! from E Nault on Vimeo.


Yep, he LOVES to talk! Screaming, whispering, repeating, talking. His personality is really starting to shine through now and I just love it. I love watching him grow and change. I love watching him learn new things right in front of me. Grasping, reaching, crawling (kind of), absorbing. Childhood is a miraculous thing to behold. It is truly inspiring...

Easton had an okay day except that he refused to eat. Normally he is a champion nurser and will eat his fill with no effort on my part. Today I was able to get him to eat two ounces of baby food!!! However, he wouldn't nurse. He maybe took half of what he normally does. Few things stress me out as much as when he doesn't eat. Two ounces of peaches does not give you a free pass to not nurse, little man!

So tonight, I am a little worried. The more I think about a ng tube the more the anxiety builds. I don't mind him having one in the hospital, but here, at home? (breathe....)
I simply can not place that tube. The nurses sometimes would misplace it (according to the xray they do to check placement) and therefore I know I could! I have no experience with this! What if I were to misplace it, push a feed through, have him aspirate,......okay. (breathe......)

I can't do it. I have prayed about it and psyched myself up...but I just can't.
Also, on a completely superficial note, I don't know if I can see him with it everyday. Right now when you look at him, he looks amazing. You would never know what he has and continues to go through. I look at him and his smile brightens my world. For a moment it is just him and I can forget about all the medical issues. I can look at him and see my baby.
If he has the ng tube, I will see a constant reminder of the battle we are enduring. Every time I look at his sweet face, I will see that physical proof that all is not well.

I want what is best for Ej. I want nothing more than that. I want him gaining weight and thriving. I want him back on the growth chart. I just do not think I am strong enough for this...

Maybe, just maybe, we will get a little miracle just in time for Christmas. Maybe at our appointment he will have gained some weight. Maybe the little bit of formula I can get into the little bit of baby food he sometimes eats, maybe that will be enough. Just the little boost we needed. Maybe....

So will you join me in that prayer. Will you hope also that my sweet babe will eat, grow, and gain weight! I know I ask a lot, I really do. You have no idea how much it means that you all are praying for sweet Ej. You have no idea how humbled and moved I am by each one of you....

Where can I go from your Spirit? Where can I flee from your presence? If I go up to the heavens, you are there; if I make my bed in the depths, you are there. If I rise on the wings of the dawn, if I settle on the far side of the sea, even there your hand will guide me, your right hand will hold me fast.
Psalm 139:7-10


How grateful I am that the Lord meets me wherever I am. Even in moments of weakness, even when I can barely breathe, he comes to me. When I am mad, upset, anxious, or distant, even then He seeks me. No matter where I am, the Lord is there. And of how grateful I am!

Okay so maybe I do take the award for the most to say. Sorry Ej, maybe tomorrow! :)

7 comments:

Anonymous said...

Praying for sweet EJ, that he gains weight, in Jesus name!

M Harrison said...

We'll be praying you don't have to, but know you CAN do it!! It's really not too bad - I promise! If it would help to talk about it, email me! We've lived with the tube (ng, nj, and now g-tube) for almost all our son's life. I know your anxiety though. Lay it at the foot of the cross; trust in Him, and find rest in his peace and grace. Big hugs to ya!

Laurie said...

My cousin had an NG Tube the first 3 months of his life. It was heartbreaking, but he made it. EJ WILL make it too, if he has to have one. The medical staff will train you on how to take care of the tube and you may be able to get home health to come out. I loved the video you posted of him. He's so precious!!

williamson family said...

Hey Girl... My name is Erin Stone Williamson. It's a long story, but a mutual Classmate of ours told me about your blog. I have read quite a bit of Ej's history and wanted to talk to you more about it.

Please email me. I have something that I want to share with you. everbrooke@yahoo.com

I worked at Lake Pointe Church (in Rockwall) and have a friend who's son went through the exact same thing. After years of research and finding the right Dr's she became an expert on this illness. I have forwarded your blog to her and she is reading up on everything now. She would love to help give some direction and share with you what she learned along the way.

I will be praying for you and I will post Ej's button on my blog and ask my followers to pray for you and your family as well. I am trusting that God has not allowed me to cross your path by accident and that he has a Plan for you and your family and that maybe I can be of some help... maybe??

Ps. I can tell you who the classmate is, but I didn't want to post here just in case :)

Ps. The kiddos are ADORABLE!!!

KK said...

He's so cute! Definitely praying.

Mrs Bee said...

I'm praying for EJ and your family everyday.

That video of him is adorable!

Sass

Familia Diaz-Salvioli said...

I have included EJ in my prayers too. I have two daughters, 2 years and 7 months and I know how much we love our babies, so I totally understand you and your fears. It is hard for us as mothers, to understand why our kids get sick. Let's pray for EJ recovery and leave him in God's hands. I always say: "God, I trust You. I put my two daughers in Your hands. Please, give them Health" You are a very strong mommy and I really admire your streght.

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