Thursday, December 31, 2009

Happy New Year!

2009, the year of refinement.

I look back over this past year, as I have done every New Years Eve before, and I am simply speechless.

Last year as I looked ahead, I could never have fathomed what was to come. I could never have imagined that a year could bring and take away so much. I could never imagine that a year could bring so much change. Be so life altering and so life shattering. That a year could be so amazing and so heart breaking. That a year, one simple year, could bring all that is has. Never. could. have. imagined.

So I sit here, shaken to my core, changed, refined, alive.
I am more alive spiritually and emotionally than I ever have been.

Although this year has taken so much away, it has instilled in me a faith so deep and a love so strong, I truly do not understand how I ever lived with out it. How I was even able to breathe with out it. How could I have lived not knowing the extent of the arms of Jesus?

I recently was made aware of a song by Hillsong called "Desert Song" (thanks Jess!!), and I love it.

"And this is my prayer in the fire
In weakness or trial or pain
There is a faith proved
Of more worth than gold
So refine me Lord through the flames"

refine: to free from impurities or unwanted material, to free from moral imperfection

Have you ever witnessed the refinement process? A substance is heated to the point it becomes something completely new and altered. It is a very harsh transformation.
However, the end result is magnificent.

Isn't it amazing that the Lord, the creator of the entire universe, loves us enough to refine us? That He desires nothing but for us to be pure and perfect? That He knows us so intimately that He can mold us and create in us a beauty we never though possible. Thank you Father for your refiners fire. Thank you for all the seasons, whether it be the desert, the fire, the battle, or the bounty. I will praise You through it all, for You are still God!!

So, I am thankful for a God who gives and takes away. A God who loves with a love we can not humanly understand. I am so thankful that I get to be a part of His perfect plan. That I may be refined to be more like Him. Thank you Lord for Your love, Your sacrifice, Your forgiveness, Your grace, and mostly Your fire....

2009, the year of refinement.....
I look forward to 2010 and all that it may have in store......

Picture recap...











For the Lord has done GREAT things for us and we are filled with JOY! Amen!

Wednesday, December 30, 2009

Chistmas catch up

So before we get started "catching up" I want to let you all know that we are home and EJ is doing so much better. His fever is down and his nose is clearing. I am so relieved that we conquered yet another bug. I just pray we don't get another round of this for a long while. I need a break....
I have unfortunately finally caught the bug though, and it is miserable. I am so sad this is what my little ones have had for two weeks!!!
I love the holiday season but I hate the colds and illnesses that come along with it.

Okay, so without further ado....Christmas!

There was mistle toe
some sick army men
a certain snow man watching us
more bows
half eaten cookies and carrots -HA I bet you thought I was going to say snow :)
new car seats
lots and LOTS of legos...
tons of presents -his expression cracks me up!
A very special visit from my baby brother. Man I love that kid!
Another very special visit by my baby sister
One of my favorite people. My Nana.
The boys dabbled in some construction
And I enjoyed some of the best food. Seriously.

We had a great Christmas. For starters it was the first white Christmas I have ever had. Ever! Christmas Eve we spent at my Aunties house and I got to see all my relatives. I love family. The single most important thing to me is Jesus, but family is a close second. I am so thankful and so wonderfully overwhelmed by the amazing family the Lord has given to me.
Christmas Day we stayed home and ate all of the food I made. I spent an entire day cooking and I loved eating it!! Well, I love eating anyways!
The kiddos opened presents and played with their new toys. We wiped sniffles and gave medicine. We even played in the snow some.
Austin played with his bb gun. Yes you read that right. A bb gun. "Santa" brought this but I was kept out of the loop for a good reason. Sigh.... Sometimes I think Christmas is just as much for the parents ;)
Speaking of the parents, I had made Adam some great presents and a picture collage of the boys. Austin bought me the most beautiful decorative wall cross. He picked it out all by himself and I love it! I told Ausitn he started my collection! I am so excited to now collect something meaningful.

Since then we have been hanging low trying to recover from the bug that has recked some serious havoc around here. Hoping now that everyone will be on the mend.

Oh and one more thing.

I am now sewing. Watch out fingers world! I will let you now how that goes!

Oh and my sweet nephew Bryce is doing fantastic. They got to hold him yesterday for the first time. I can't wait to meet him. Thank you so very much for your prayers. You all have no idea how much it means to me. How much you mean to me!
And since you all mean so much to me...
Watch out because I have a giveaway coming soon :)

Monday, December 28, 2009


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 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!!!!!!

Saturday, December 26, 2009

prayer requests

I know I have been absent, but life is only speeding up over here as we are gearing up to move. Christmas was great and I will catch everyone up soon. However, my family needs your prayers!

Yesterday my sister, Trisha, had her little boy Bryce Anthony.

Unfortunately she had a placental abruption and sweet Bryce went too long without oxygen. They were able to revive him but he is in critical condition on the ventilator. Please, please pray for my sweet nephew.

Also, EJ is still sick and unfortunately getting worse. He has been running an on an off fever and is miserable. I am so glad we made it through Christmas, but if you could pray he gets better and can avoid another hospitalization, that would be a blessing!

Alright sweet friends, thank you all so very much and I will update soon.

Monday, December 21, 2009

Moving moutains!

Well, indeed, faith can move mountains!
You know what else it can do? Cause a certain little someone to gain TEN whole ounces and TWO centimeters!!!!!!

Praise the Lord!!!!He is mighty to Save!

So my sweet little boy gets to go another month without a feeding tube!

His labs were still abnormal (though normal for him). ANC was 300 and he is still really anemic. We are starting him on some iron though and that should help!

As far as his pancreatic insufficiency goes, it looks as though he has been mysteriously healed. Although it is not a mystery to me!!! The Doctors are completely baffled by this, lol! He will not have to restart his enzymes again and I'm just soooo happy!

He is still very immune compromised but we can deal with that. One thing at a time.

Our next follow up is in January and we also have an appointment with immunology at that point. Also by then we will have his shwachman test back and that will finally confirm, once and for all, whether he has that or not.

So thank you, thank you , thank you, for all of your prayers. They have moved mountains people. My baby boy gained weight!!!!!!!!!

Saturday, December 19, 2009

house of sickies!!

Both boys caught Adam's cold! Poor things!
Austin at least can take medicine though, poor Ej can only have saline drops and vicks rub.
This could not have come at a worse time since his appointment is Monday. Whenever he is sick, he always looses weight. Plus, if he spikes a fever (praying he doesn't) he will have to be admitted and Christmas is less than week away.
The part of his immune system that fights viral infections works well, so as long as this remains viral, he should be fine. If he develops a secondary bacterial infection, that is what can become VERY dangerous as he has nothing to fight bacteria with. So I am praying this passes quickly and that he maintains his appetite!
I always do soup and "honey bee" when someone in my family is sick. Austin loves honey bee! It is a simple water, lemon, and honey mixture we drink warm. It is sooo soothing!
What do you all do when you or a love one is ill?
I have read about filling a pillow case (or sock) with rice and putting some essential oils in it and warming it in the microwave. Do any of you do that? I am thinking of making one for Austin.

As long as I don't catch it, we should be okay. Adam was in bed for three days with it, and as we all know, Mommies don't get time off to be sick!! So I am hoping I can get away with staying healthy! Hand sanitizer is my best friend!!!

Well, this weekend I am so busy, packing, cleaning, tending to ill little ones, and preparing for Christmas! So I probably won't be back till after our appointment on monday! I hope you all have a wonderful weekend!

Thursday, December 17, 2009


Alright ladies I need some reassurance!
So I know Ej will be a little delayed due to a month in the hospital, but, how delayed is okay?
I was talking to my MIL last night and she was asking what was new with EJ, and I didn't have anything to tell her.
The fact is, he hasn't started to do anything new since we were discharged November 18th. I mean he can sign "more" and that is awesome! But, he doesn't say any new words and he is still not crawling. He was talking and army crawling in October before our first hospitalization, and therefore, hasn't acquired any new milestones.
He is over ten months now, is it normal to still not be crawling? At what point should I be worried? He doesn't pull up yet but will stand holding on to something if I place him there. He can not get into a sitting position unless I put him there. He still says Mama, Dada, and night night but hasn't added any new words.

Maybe if he is still not crawling at one I should consider PT? I guess I don't know what to expect since he is SO different from Austin. I just worry so much and I need to learn to let it go and let him grow and learn at his own pace. It is just hard...

So any advice or any tips? Any late bloomers out there?? Or should I go ahead and talk to the Dr on monday about PT?

Thank you all, I appreciate all the support sooo much!!!

Tuesday, December 15, 2009

peek a boo, I see you!

i see you from E Nault on Vimeo.

I just wanted to let yall know that EJ has had another awesome day today! Already today he has had a whole jar of sweet potatoes and some applesauce. For a snack he had some bread! I can not believe it! It is almost as if overnight he decided he was hungry lol!! So amazed by the power of prayer! Thank you all so very much!!

Monday, December 14, 2009

our hope endures

dallas cowboys 022
So our weekend was so busy but so great!
Saturday we went downtown to visit some friends and have lunch, then we went to Adam's Christmas party! The boys came with us and we had a good time. You would think that staying out till 10 would make the children sleep in...HA. Nope. I tell you Ej has an internal alarm clock! Do you all have a work Christmas party? If so where and what do you do??
dallas cowboys 025Yesterday we had an amazing time at church, seriously I love that church!, and then Adam went Christmas shopping while the three of us took a nap :).
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Easton had a really bad day Saturday and only nursed twice. However, yesterday he ate like a champ! Listen to this, he ate an entire four oz jar of bananas, a couple bites of bread, and a whole bowl of my chicken soup! He ate this all in one sitting! Praise God! He has not eaten that much since before September. Talk about making up for not eating on Saturday! If I can continue to get him to eat that much, we may have weight gain next week after all!!!! How great to not have him need that feeding tube!! I'm very excited about this!
In other news, a certain little boy was very excited about a certain football game! Any guesses who he was rooting for??
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I realize I didn't post the entire weekend and I wanted to share something with you now that it is final.
Now that we are a one income family, I recently lost my work from home job due to Eastons health and hospitalizations, we are having to down size quite dramatically.
I could get into to the details and how it is affecting us, and maybe I will later, but for now I will just let you all know that we are moving (hopefully by the 1st, but maybe by January 15th...we will see) and trading down our vehicle. There are some very large things going on and I am so busy trying to prepare.

Sometimes, life can be so overwhelming. Sometimes, I have to make changes, not out of desire, but out of pure obedience to Him.

So I have a prayer request. Please pray for our entire family as we try to adjust to this new life. I am hopeful, always hopeful, the Lord will be faithful and see us through. However my family, and especially myself, we are only human and the day to day can seem so difficult sometimes. I know we will get through this but we need strength and peace.

Also I had another request. I sincerely hope you take me up on this offer. Each and every one of you has touched our hearts with your prayers, emails, and sweet words. Please leave me your prayer requests in the comments (you can be anonymous) or email me if you would like. My email is
Please do this. Let me pray for each of you who has prayed for us. Nothing would make me happier! It can be anything, nothing is to small or too large. I believe in the power of prayer. I believe our prayers are never in vain. No prayer goes unheard before the throne, and no petition ever unanswered. It may not be the answer we are hoping. However, the Lord Almighty knows best, and His will is perfect!
I would be honored to pray for you!(or someone you know!)
I can even put them on my blog in a post, if you would like, so we can all pray for each other.
You all will never know how much you mean to us! Thank you!
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Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus (Philippians 4:6-7)

Saturday, December 12, 2009

Tour of homes-Christmas

Christmas Tour of Homes with The Nester

Alright, so I will be the first to admit that we did not decorate much this year , with everything going on, but here is what we did put up!
This is on our formal dining table and was way to easy to make. I knew those extra Christmas bags would come in handy! Plus the sleigh holds our Christmas cards!
I simply LOVE a good nativity, and this one is on the window seat in the kitchen.
I love to put extra ornaments into anything that will hold them!
My MIL gave this to me, so it has a lot of sentimental value to me and is on my mantel.
My stocking. This was handmade by a dear friend. I can not believe all the detail!
With everything Ej has been through this year, nothing makes me happier....
This was suppose to be my silver and white tree, but somehow, other ornaments have made their way over! lol...
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The reason for the season...Jesus!

Friday, December 11, 2009


We had an up and down day today! Little man could not decide how he felt. He wouldn't eat one bite, then he ate a whole piece of pumpkin bread. He wouldn't sleep, then he didn't want to wake up. There were tears, and there was lots and lots of laughter!
See for yourself!
stair collage
All in all it was a good day. EJ is really moving around and pulling up on things. He desperately wants to be able to crawl up the stairs!! He wants to feed himself, he talks all day long, and I think he is cutting another tooth.

The doctor called back, and we are to keep trying the formula and wait to see what he weighs on the 21st. It is times like this I really wish I had a baby scale!
I try to not worry though, because developmentally he is progressing right where he should be. Given the defects we found in his brain, no one knows if, and to what extent, his development will be delayed. I thank God for the fact, that so far, there is no delay. It is things like this that keep me going...

I can do it! from E Nault on Vimeo.

Thank you all for continuing to lift us up! When we are having a rough day, I can feel all the prayers. They mean so much!
And finally,
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Praise God for the ultimate present on Christmas!!!!

For to us a child is born, to us a son is given; and the government shall be upon his shoulder, and his name shall be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace.
Isaiah 9:6

ps. yes he has socks on his hands. It was so cold today and Austin thought they would keep him warm LOL. He is such a good big brother!
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