whistle while you work

I have so much left to do. Seriously, I need a couple extra hours in every day! It doesn't help that EJ won't let me put him down. We are attached at the hip all day long. Between his three new teeth coming in and his current cold/upper respiratory bug, he wants to be held non stop. I love snuggling that boy but man is it hard to do the dishes one handed!! He currently naps about 30 minutes a day, and usually it is while I am nursing him to get him down. Then I try to slip away and POP, he is awake! What a stinker!

Easton has been changing sooo much the past couple weeks. He is starting to stand more and more all by himself and can almost push himself into the standing position with out pulling up on anything. Crawling is second nature now and cruising is easy. I think it wont be long till he takes his first steps! I just can not believe it!
What has really changed though is his personality. He is no longer a baby. Not in any sense. He is a toddler and I don't know how it happened! He is talking more and communicating what he wants (and what he doesn't want). He is VERY vocal and very loud. This is new to me because Austin was and is a very quiet and very calm child. Easton is the opposite. Loud and proud. He is demanding, loving, short tempered, snuggling, hitting, kissing, screaming, whispering, angry and super sweet. He is a complex little man to say the least. The temper tantrums he is already starting to throw are...well...perplexing. I so thought this behavior wasn't suppose to appear until 2 lol!
He is still really attached though. The independence hasn't really emerged yet. I have to be in eyesight and usually he has to be held or be able to touch me at all times.
He still nurses great and we are co sleeping with no end in sight. He is a joy every minute of every day and I am so thankful to have this beautiful boy.
His new thing this week is that he can point to your eyes, nose, and mouth on demand. He can even say "eyes" and point to them! He is so smart! He has started coloring also and will take a crayon and color on paper. His eyes light up and he gets the biggest smile when he starts to color. He is amazed by that!
To think where we were. Facing a stroke and brain damage, to hitting and exceeding milestones. God is so good!
He is also eating like a champ. He demands his meals promptly and usually eats three servings. He is such a hungry babe. His next appointment is February 11th and I can only imagine he has gained some serious weight.
He is sick right now with a nasty bug (we all have it) and I am praying it doesn't turn into more. No fevers! I don't not want him in the hospital next week. I actually want to make it longer than 5 weeks without having to be hospitalized. Especially since his birthday is next week! Here is to a healthy and amazing birthday! One year...one whole year. Amazing.
I can not wait till his party on thursday. I am so excited! I wish you all could come :)

Austin is the best big brother ever. He has really taken his role seriously. He is my wild, calm, loud, quiet, playful, shy, genius, inquisitive, talking, sweet, beautiful boy. He is so smart it is astonishing. He flies through his school work books with little instruction. He is fiercely independent and can do most everything by himself. He loves making me food and I love eating it lol! His imagination is so inspiring. He loves taking care of Easton and often pours him a drink or gets him a snack. He recently has been playing with him more and more. He loves him so very much.
We have decided homeschooling is the avenue for us and I have been looking into a curriculum for him. I am so excited to share in his education. I was an elementary education major in college and since I will never teach in the classroom, I am excited to help Austin learn. He truly is a joy to teach.
He is staring to read some words now and his handwriting is getting better. When we do math he cracks me up. He says "Two plus one is three, Two plus one MINUS, is one." He adds the minus to the end. I love the way his mind works and I can see him learning and growing before my eyes. Getting him to sit down for school work is interesting though so I have to be pretty creative there.
So anyone with advice on homeschooling curriculums would be great! What have you done, what do you like? Recommendations?

Our new home is slowly coming a long. I still have all the decor I need to put up and lots of pictures. I also still need to unpack all the clothes. All in all though we are making progress!
See for yourself...
day one

day three

I like unpacking. It is so soothing and methodical. I love putting things in their new home. In that perfect spot.

And last but not least pictures of my cuties!
my blue eyed red headed baby

my sweet big boy (who was freezing in this pic! It was snowing on move in day!)

wanting to join in on our school lessons!

Thanks so much everyone for your well wishes on our move!!
I can't wait to share EJ's birthday with you all!!I just love birthdays! It only helps that my birthday is next week as well and then valentines day! What an awesome week! What are all your plans for V day??

we are home

Well, we are moved in. Still some unpacking left, but for the most part we are comfy and cozy. And I mean cozy.
Our new home is about 1/3 of the size of the one we just left and a lot of stuff had to go to storage. But, it is just stuff and I don't really mind its absence at all.

Both boys now have mild colds most likely from the sub freezing temps and snow we got to experience first hand on moving day and the following two days with no heat. Did you know if you turn your oven on and keep the door open it can warm up a little room?

So now, we have heat, hot water, and two amazing little runny noses smiling faces. Things feel right here. I can't explain it really. It feels like home in a way the other home never did. It has such a better flow. I don't know how long we will be here but I know everything will be alright.

No one ever expects or hopes to lose so much and to be financially devastated. This is something I never imagined would happen to us. But, I wouldn't change it. In the end we still have a life that is so abundant, so beautiful. I am so blessed. And time will offer opportunities to rebuild. God has already started. He is so good at rebuilding.

So no matter what lay ahead I have hope. I have no fear. For I have weathered a lot and been carried even more. So my friends, we are home. And I couldn't be happier.

(some certain little someone is having a birthday bash coming up!! I can't wait!!)

shaking the dust off

Well, here I am. It is good to be back.
While I have been away, much has happened and must is still left to do. It is a crazy blend of chaos right now but I wanted to stop by.

Our move has been delayed until the 31st so we were given some breathing room there. Also, a different living opportunity presented itself and if it it happens it will be great! If it doesn't, then we still have our original plan as backup!

We still have a ton of packing to do. I can not adequately explain my disdain for packing, but given light to the fact that those in Haiti would love to be in this situation, I am rejoicing for everything I have. I am infinitely grateful for the roof over head, the spaghetti on the stove, the cloth diapers on a little bum resting in my lap. I am so grateful for solid ground and I am grateful for this move.

Even though we are downsizing quite dramatically, I am blessed beyond measure. I have all my needs met. All our small day to day things, are luxuries to so many in the world. Every shower, every pot of boiling water, every meal. Every small item of clothing currently on the bedroom floor, everything is a blessing.

In light of so much suffering I feel so small and so inadequate. I can't go there although my heart is. I can't give large amounts of money that I don't have. But I can pray. We all can. I pray that somehow, someway God will bring glory from this. I just ache for them so deeply.

But God will bring glory!! Where there is pain, there will be comfort. Where there is suffering there will be peace. What is broken will be restored! I pray all these things!

So life has been heavy while I have been away. Busy, wonderful, but heavy.

Easton is doing very well. We finally have a diagnosis...kind of. His shwachman diamond test came back negative, leaving us with autoimmune neutropenia. He also has eczema, transient pancreatic insufficiency (although in remission right now thank God!!), and malnutrition caused hydrocephalus. All is manageable at this time! So I have an immune compromised child. He is in the "severe" category but we are holding strong. There is no treatment due to the fact that his marrow produces white blood cells, but his own immune system kills them off. It's tricky.

But spring will come and it will bring so much. One thing will be the end of flu season. Brighter days are coming. Can you feel it?

Easton is also crawling on his hands and knees only now. No more army crawl! He is cruising like a pro and can even make it up the stairs now. Walking is still a ways off but everyday he gets closer. His eating is amazing as he now has a ferocious appetite. He also has a ferocious temper! He is a passionate one!

Austin is doing great as well. He is getting so close to reading. So close! He has energy like a hurricane but is a great big brother.
We had a scare a few days ago though. Austin hit his head and had a seizure and then stopped breathing and was unconscious. As I ran up the stairs to Adam, I had him in my arms lifeless, and I have never known a feeling like that. Fear doesn't do it justice. However, after a ct and other tests he is fine! Parenting these two boys is going to get the best of me!

But really he is great and I love seeing life through his eyes. From legos to bugs, he amazes me!

I may be on and off for a while but I am sure you will understand. So much is happening and so much is changing. There is even a whisper of a job opportunity. More on that later....

Thank you friends for all your support and prayers. Thank you for everything!

looking to the future!!

Expect an update (finally!) sometime soon!!

most beautiful face

father and son

the park

backyard blues

nature

my boys

eggs in a basket

easton joseph

sparkler battle

past pictures!

So while Im being busy packing, cleaning, changing diapers, feeding, bathing, packing, cleaning.....
I decided to schedule some pictures to post in my absence. I have disabled comments though, so just sit back and enjoy!
So here are todays!

signing off

Alright! Well I will be taking a little break until the 15th as I need to focus on getting us packed and moved. I really really dislike moving and I need to just dive in and get it done.

We are doing great here, Ej is finally on the mend and even his horrible yeast rashes are clearing. I am praying the next month is infection free and this new transition will happen smoothly.

So, friends, I may check in on you from time to time over the next 10 days, but otherwise, I'll catch up afterwards!!!

ps. If anyone needs anything or has a prayer request, you will have to send me an email!

Much love,
Elle

the carpenter+ our winner!!

Carpentry. It is a lost art really.

Now a days you don't see too many dusty sweaty men pouring strength and attention into a chunk of wood. Seeing the possibilities, the potential. Grinding, scraping, carving, cutting, removing and sawing until, you see it. The beauty that He saw all along. Those carpenters are pretty creative after all. To see the beauty before hand.

To make something from nothing. Something prized and treasured. Something obviously worth value. Those carpenters, you see, are quite creative....

From a rough log they can make something so smooth and glorious. From something so unlikely, they can create a work of art.
Not surprising because, well, carpenters are rather creative....

Did you know Jesus was a carpenter? But oh, his work did not stop at logs. Oh no, He had his sights on something much more significant.

You.

He sees the potential, the possibilities. He sees the beauty. He sees what could be, what will be. He can look straight through you and see what others can not. From something so unlikely he can make a masterpiece. And often, He sees all this before even you do.

Do you think that we are the ones holding us back? We are the ones who can't imagine that a God as unimaginable as ours, could choose us to do His work?

Fear not. All we have to do is trust. Walk where He leads for He will guide us. He will transform us. Even if we can not imagine the result. Even when we can't see His plan. Especially when we can't see it. Have faith in the carpenter. After all, they are pretty creative you know.

Alright, are you ready for our winner?

Yay! Number 16, Tracey, you are my winner!!!!
So excited! Sent you out an email!!

Luke 9:23-24

Then he said to them all: "If anyone would come after me, he must deny himself and take up his cross daily and follow me. For whoever wants to save his life will lose it, but whoever loses his life for me will save it.

Resolutions.....
Aren't they funny?
We all make them. We make our goals and plans. Create a whole itinerary for our new year.

How about we stop making resolutions for us, resolutions that we want, and start making some for the Lord? Strive to walk more in His way, and do more of what He desires for us. What then?

What if we surrender to our Lord and lay it all out for Him. What if our resolution is to die to ourselves and everyday choose, instead, to pick up the cross.

Did you catch that? Everyday.

My resolution this year is to stop being lazy and to serve. To be obedient to the Lord. I don't know what this will look like, as I often fly by the seat of my pants. But I am sure going to try. It is time to start taking up the cross. It is time to die to myself so that I may live in Him. It is time to stop making excuses. I am being called to act, and for once, I am.

You see, God knows it is not easy. That's why we fail year after year, day after day. I am always failing and I am so far from perfect that I am in awe even trying to comprehend that our God still loves me. That he has a plan for me and has indeed started a "good work" in not only me but each and every one of us. We are all part of His amazing plan. We are all called to be a part...and He knows it isn't easy.

"For I am sure that He who started this good work in you will carry it through until it is finished on the day of Christ Jesus." Phil. 1:6

That is why He will finish His good work in us. We can do nothing alone. Not breathe, not move. Nothing. And we also can not follow through with resolutions and plans all on our own. It is not by our strength that we prevail.
All we have to do is submit. Receive. And He will do the rest. Let ourselves become vessels for His love and compassion. Let our lives merely be arrows pointing to Him. If you give Him the reins, my friends, He will start a good work!!

I am constantly brought to my knees over and over again when I receive just a glimpse of His work. It is something that our human minds will never comprehend on this side of heaven.

So this year, I have made my resolution. Not for myself but for Him. I will strive everyday to chose the cross. Everyday I will work on being transparent in my life to allow Him to cover where I fail.

I made my resolution. Have you?

Gratitude and....a giveaway!!!!!

---------------contest over!! stay tuned for our winner!!--------------------------

So I thought I would start out 2010 with something fun! I am determined to make this year the best yet!
So here we go with a giveaway, since I am so thankful for all my dear sweet readers, your encouraging words, and your uplifting prayers. You have helped carry us through some very rough times and I am so very grateful!
I am also grateful for CSN for allowing me to do this great giveaway! Did you know they have over 200 stores so you can easily find anything you are looking for! From nursery furniture to decor to cooking utensils!! How great!!


These sweet little picture frames are adorable!!!! Would these not be precious in a little girls nursery!?


This cute toy from LeapFrog is great! Ages 6 months to 2 years! I love games that teach letters and I think you can never start to young!!


This little chopper is amazing! Think about the things you could do with this! From salsa, nuts, and baby food, this would be great to have!!

Alright, so how do you get a chance to win one of these fab gifts?? All you have to do is visit CSN and leave a comment telling me which site you would most likely shop at. Also let me know which of these three gifts you would like to have if you won!!

Also, in my last post, I shared with you all a song that was new to me that I love!! I can't believe I hadn't ever heard that song before! So, I bet there are countless amazing songs that I have never heard! So if you will, leave a separate comment sharing your favorite song with me! This way we all can find some great new songs and it will count as a second entry for the giveaway!!

I will leave this up until monday night, at which time I will randomly pick a winner!!

Thank you all so very much! God Bless!

(ps if you do not have a blog, no problem, just leave me your email so I can contact you!!)

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!

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

snow

some sick army men

snow

bows

snow

a certain snow man watching us

snow

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...

smiles

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 :)

honesty.

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 happens...you 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!!!!!!

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.

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!!!!!!!!!

house of sickies!!

Well...
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!

when?

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!!!

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!!

our hope endures

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??
Yesterday 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 :).

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??

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
ienault@yahoo.com
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!

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)

Tour of homes-Christmas

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...


The reason for the season...Jesus!

today...

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!




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,

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!

guess what?

We now

have an amazing

TEN month old!

We love you EJ!

We are so thankful for each and every moment with you!

Happy TEN months!

christmas card confessions

Okay, so please tell me I am not the only one that hasn't sent out Christmas cards....right?
There are so many different, super cute, cards out there now. I love looking at all the neat designs! However, I haven't even started! Sigh....
For the past couple years I have had the best intentions. Last year I even made them all, and sent them with Adam to mail from his work. Well he mailed them without putting stamps on them, so they were returned back to us on Christmas eve! To late to remail them! This year with everything going on, I just haven't found the time to really dive into to all things Christmas. Sure my lights and tree are up, but along with my cards, I haven't even started Christmas shopping yet! Yikes! So I am thinking I may not do cards this year. Is that horrible? Honestly?
However if I did do them...I would totally choose this one...

from doodle bug dezigns
OR this one

from tiny prints

Are those not the cutest!?

Okay so I must share these adorable little boots with you all! Because my awesome mother in law is not nearly the procrastinator that I am, she already bought and sent the boys Christmas gifts. Well this gift she bought while she was here during Easton's first hospitalization, and I love them. Seriously. They are real sheepskin and so deliciously soft and warm. They fit him perfectly and he always wears these. You would never guess, in a million years, where we got them................
Bass Pro Shops!
Okay so seriously, I had never been to this store, and dreaded going really, so Adam decided we should go. I though it was going to be only a hunting/fishing "man" place! Ha! It is, but it is so much more! They sell everything! It is like Walmart, but for "out doorsy" people. Who knew we could find such cute stuff! Also Santa is going to be there! Well just to let y'all know we now go there all the time, and it is Austin's favorite place in the whole world. He has almost every lure they make. This child has started young!
Aren't these the most adorable little shoes!

Easton thinks so!

Oh Easton, you are so cute, but you really need to learn how to tie a scarf! :)

So tell me, have you already mailed you cards? If so did you buy, print, or hand make yours? If you haven't yet, what are you planning on doing?

ps. I am still waiting on hearing back from the Doctor. Of course I will update when I know!

Reckless Abandon.
-the trait of lacking restraint or control; freedom from inhibition or worry

One day when I look back on my life, on my faith, and what I did, I want to say I lived with reckless abandon. I want to be able to say that I gave everything. I had passion and love and I lived. I want to look back and say that (although I could never repay Jesus for the ultimate sacrifice) I worked hard to share my faith, that I served. I want to be all the good that the Lord sees in me. I want to work at doing His will. I want to walk the walk...

There was a prayer that I had read in my WOW bible as a young teen. It read, "Be still my soul and know that He is God, and He will not let go for He loves me so."
I will no longer be praying this prayer.

I no longer want to be still.

Now I pray that my soul may be moved. That I may be moved. I no longer want to be complacent.

I often think about the rapture and wonder if it happened tomorrow, would I be ready? Would I have accomplished everything that I want too. Well, the answer is...no. Not by a long shot.
With international missions out of reach for us right now, I have recently found a way to do wonderful mission work right here in my town. Sometimes it is not the big things. Sometimes the smallest things cause the largest ripples.
So I am excited to start serving those around me and the Lord.
So I know a lot of you are not able to give a lot of money to charities, go on mission trips, and radically change your lifestyle. However, I want you to know that the Lord is in the little things as well. There is so much we can be doing right here. The need is huge for local volunteers!

Lord lead me, guide me, move me. I no longer want to be still.
Lord I pray that I may die to myself so that I may live for You. That I may live with reckless abandon. Amen.

For my Ej update, today was another bad day. I know we have bad days and good days, so I am hoping tomorrow he makes up for it. He ate no baby food and barely nursed today. He is refusing all formula at this point. I called in to the Dr. and let them know what has been going on. I am waiting to hear back on whether they want to continue this way until the 21st, or go ahead and change to a different plan. I will let you all know!
Oh and speaking of you all....
I want to thank you sincerely for all the kind and uplifting comments, emails, and prayers. You have no idea how amazing you are. I am just so thankful.
Also, I am about 60% today already and I have never recovered this quickly from mastitis. I think I can attribute that to a little thing called prayer. :)
Thank you all so much. You truly are friends in Christ!

Mastitis

Well aparently my headache was just the precurser to this! I can't believe we got this again! I'm in bed sick hoping this will pass soon! Meanwhile I am praying it won't wipe out my supply like last time! Poor ej can't go through that right now!

tonight....

Mommy asked me to post because she has a migraine! Hope you all had a wonderful Sunday!

Today I learned to wave

waving!!! from E Nault on Vimeo.

And to sign "more"!

more! from E Nault on Vimeo.

Yep, I am amazing!
Love,
Ej

ps. Mommy said there must be something wrong with our camcorder because she promises it is not this dark in our house!

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! :)

Will you still follow me?

Everyone has trials and hardships. Everyone has problems and some painful moments in their life.
In life we can not choose what life gives us, only how we react. It is our reactions that define us.
The truth is, life can be pretty hard sometimes....

I have had my share of trials. The past two years have been especially difficult.

But I wouldn't change that. The Lord uses these moments to mold us and to create within us who He knows we can be. I still love the analogy of river rocks.

The trials and tests push you to the limits. It stretches your faith almost to breaking. It tears you down but only to have the Lord build you right back up. The Lord is awesome at that! How thankful I am for rebuilding!

I have been asked why the Lord allows such painful and horrible things to happen to us. Why my faith remains so strong in the face of such heart ache. I will tell you.

I was a luke warm follower for a very long time. One foot on the alter, the other at the door. Knowing Jesus and following Jesus are different things.
I never gave Him my life. I never gave Him anything.... However, I was happy to demand everything. I thought I was a Christian and claimed to be. Then things started to change...

In the middle of our secondary infertility and in the heartache of my miscarriages I heard the Lord whisper to me. Calling me to Him.
Do you still love me? Will you still follow me if you do not get pregnant?
Saying yes to that was quite possibly the hardest thing I have ever done. However, not to long after, I did get pregnant with Max.
Will you still love me and follow me if I take this precious baby to come home to be with me?
NO! NO! You can not take this baby from me. Not another one. I want this baby to be here on earth. I want this one to come home. I want...I want....
With tears in my eyes and a heavy heart, I answered yes Lord.
Max did go to be with the Lord and I had never know such pain nor such peace.

With the failing economy crumbling around us, with jobs and incomes lost. With hopes, homes, and dreams shattered. I once again heard Him calling.
Will you still love and follow me if you have nothing but me?
Looking into heaven and begging to see the path He had chosen and to see the purpose in all the loss, I kneeled and said yes Lord.
We did lose everything, and for the first time I knew what it was like to be completely sustained by Him alone.

With sweet Ej in my belly growing and thriving, despite our preterm labor and complications, I started to breathe again.

Once more , though, the Lord is calling.

Will you still love me and follow me? Will I still be your God? Will you still walk in faith if I ask EJ to be placed on the alter. If it is not my will for Ej to be healed on this side of eternity?
And friends, with faith and courage, I whisper YES Lord.

Yes Lord, YOU are my king, my Savior, no matter what! No matter what. My faith is no longer something I say but something I walk. I no longer expect for my wants and desires to be met. For when you let the Lord lead you, when you let Him work in your life, there might be will be pain. However, the reward, the beauty, the joy, the hope, the promise, the peace, is so much more than you can ever even imagine. If it takes the pain to have the joy, if it takes the pain to know the arms of Jesus, then yes Lord. I will take it all.

We were never promised an easy path. We were never promised smooth sailing. In fact the scripture promises the opposite. However, we were promised that we would never go alone. Jesus is there to carry, to comfort, to save. Jesus is always there...no matter what. The farther you lean, the stronger his grasp. He will never let you go.

So no matter what heart ache you have, no matter what path you are traveling, know this. The Lord our God has traveled it far in advance. He is waiting for you with outstretched arms. Just jump, lean, and give the pain to Him. The comfort and peace of Jesus is all encompassing and breathe taking. And.... it is yours.....

To read another story of sweet surrender and of answering yes lord! go here.

the details

Well today was a day of prayer and praise. I spent many, many moments on my knees today.
Austin has really taken an interest to prayer and to Jesus lately. He comes near and hovers by my side when I pray. He is full of so many insightful questions. But the thing that amazes me the most is his dedication to the details.
He wants to know what the soldiers used to pierce His side, he wants to know about the crown of thorns, about the roman soldiers and how the Lord felt about them. He wants to know about Pontius and about Jesus rising again. He wants to know all the details. He wants to memorize them and study them. This, to me, is incredible. It also reminds me of the details of Jesus that I often forget about.
The true details. How He really died on the cross to save us. His hands were pierced, a crown of thorns placed on His head. He was spit on, mocked, beaten. His human body broken for you and for me. I can only imagine the look in His eyes as he cried out to our Father in Heaven for the last time. I can only imagine the pain He endured for our salvation. I can only imagine the LOVE. The details bring me to my knees again and again.
So tonight as our day was winding down, and I went upstairs to get EJ ready for bed, I saw this on my door.

When I asked Austin what his GI Joes were doing taped to my door, he replied, " I wanted to remind you of Jesus, I don't want you to forget."
Thank you so much Austin. You have no idea how you lift me up and encourage me. I won't forget. Not about any of it. Not one detail.

And also, I think I know why my laundry seems to never get done anymore......
(sorry this is sooooo dark. we love to turn the lights off and just have the Christmas tree on :)

clothes monster from E Nault on Vimeo.

EJ is doing okay here at home with us and we try to take it day by day. He is still not eating nearly enough calories despite our best efforts. At this point it is looking like a feeding tube is our only option. Our next appointment is December 21st, and if there is no weight gain again, we will do it that day. So if you could pray for little EJ to gain weight it would be such a blessing! Although a feeding tube isn't the worst thing by any means, I still cling to some hope he won't need it!
"My grace is sufficient for you, for my power is made perfect in weakness."
2 Corinthians 12:9

snow, sugar cookies, and snuggles

Snow. I can't tell you how much I needed this today. To watch Austin's face light up was such a blessing. This was his first ever snow encounter and I am so happy he got to experience this. I love Texas and I am so glad we moved back home.



Sugar cookies. All I have to say is, Martha Stewart...Eat your heart out. We didn't have cookie cutters this year so we had to free hand everything lol! Definitely not my best work BUT Austin decorated them all by himself and I think he did an amazing job! He had so much fun, and that is what it is all about!


Snuggles. At the end of the day, nothing, and I mean nothing, is better than some quality snuggle time with a certain little someone. I just love him so much and thank God for him. He is our miracle.



So today was a wonderful wintery day and I loved every minute of it.
One of the hardest things right now is finding the balance between crisis and normalcy. I can't live every minute in fear and anxiety about Easton's health. I have Austin, Adam, and a home I have to tend too as well. So the balance can be difficult and some days I find it hard to find that compromise. Some days I find it hard to emotionally handle everything. But I have to.
So thank you again for all the prayers. You can't imagine how much they help!

Hear my cry, O God; listen to my prayer. From the ends of the earth I call to you,
I call as my heart grows faint; lead me to the rock that is higher than I. For you have been my refuge, a strong tower against the foe.
I long to dwell in your tent forever and take refuge in the shelter of your wings.
- psalms 61.1-4

so thankful

Today I am thankful for snow, even though it is now melting.
I am thankful for all my friends, blog friends, and family for lifting us up during this time.
I am thankful for the fact that I was able to mix a little formula into Ej's baby food this morning and therefore boosted his caloric intake even if it was "just a little bit".
I am thankful for the generosity, kindness, and prayers that everyone has given. Even people who didn't know me prior to this!

But I am most thankful for a Lord who's strength is perfect when mine fails.
Oh how I am ever grateful. For when we fall, he does indeed pick us up and continue forward. When we can no longer fight, he battles for us. When I am nothing, He is everything. The God of the universe has us tightly in His grip. He will never let go.

So today, I am thankful. So thank you everyone who has lifted us up. Thank you so much. We have felt your prayers and I am so grateful.

broken down.

Tonight I am weary, tonight I am worn.
Tonight the tears are a stinging reminder I am not strong enough.

We had our follow up today and it really wasn't that bad. His ANC was 300, so still in the "severely neutropenic" category but I expect no less. I have come to terms with his neutropenia. I can handle the fact he is immune compromised and I need to be careful. I have a new thermometer that scans his forehead and I can check it multiple times a day. I can wash my hands and prevent people from coming over. I can tangibly manage his neutropenia.
However, his weight is a battle that is simply wearing me down. He lost three ounces since our last weigh in.
As far as the growth chart goes, for height, he has now fallen completely off the chart. He is so small that 100% of babies his age are longer than he is. Weight is dropping quickly and is at 25%. He cant afford to lose even an ounce. I can not tell you how hard it is to watch him waste away in front of my eyes. I am doing everything I can to try to get him to gain weight. We work so hard. I simply can not make this better. I am his mother and I just feel so inadequate. I have been so strong and fought the good fight everyday. I watched as he lay in his hospital bed and as he went through test after test. I put on my brave face and was there with a smiling face for him in recovery. The truth is though, that I am not strong enough to watch my child go through this.
The two years it took us to get pregnant with him, the five miscarriages we went through during that time, the high risk and complicated pregnancy, the NICU stay, the hospitalizations, the unknown. We have been through so much, and tonight, I am tired. My soul is so weary. I can feel the Lord calling. Whispering to give it to Him. I just can't. Not tonight. I don't want to put EJ on the alter. I want him healed and healthy in my arms. I want him and I don't want to let go. And tonight the overwhelming fear of ever losing him just feels so large. I cant tuck it away and push it down. Oh lord, I am so weary. I hurt so badly for my son, my child.
So friends, will you please pray for me. Pray I can find renewed strength and peace. That I can wake up ready to continue our fight. Pray I can hand this over to the Lord.

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

a little story

First of all happy holidays from our family! We had such a wonderful time at Nana's house this Thanksgiving!


Alright! Here we go.
This is the tale of two little brothers. Both oh so cute and both oh so stubborn!


EJ wanted to eat the leaves.

But Austin

thought that was a bad idea.
Easton, however,

thought it was a great idea indeed!

And he looked so cute attempting to eat those leaves!!

But, Austin

still thought this was WAY too unsanitary!
So....
He brought him cheerios! In a measuring cup none less!

And it worked! Austin was so proud!

So then I thought it would be a great idea to try to get pictures of both of them! LOL!






But then the mail came!

And there was a mess of cheerios!

And then Leaves!

And in the end, I was so happy to be their mom!

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!

Update

Easton was admitted Wednesday and we are back at Childrens. He is now anemic and has enlarged lymphnodes in his abdomen. He was positive for neutrophil antibodies so now they do not think it is shwachman diamond. Pray for the doctors that we may find the diagnosis soon. He is stable and is on high calorie feeds through his tube. I don't have computer access but I can tweet with my phone. My twitter link is in the side bar. Thank you all for your prayers.

lean

Today I am learning just how far I can lean into the Lord. Easton has been screaming for hours now and I have tried everything to help him. Something is obviously wrong since he won't eat and he is crying so much. He is definitely in a lot pain. I just gave him motrin to try to help a little.
In moments like this, when so much is collapsing around, I have to rely on Jesus more than ever.
I rest in the fact that nothing is too large or too small for the Creator. Easton is securely held by the Great Physician and I am blessed in that!
So as life is put on hold to tend to our youngest, as doors close, I try to focus that new doors, new pathways, will be opened by Him. New directions to take and to embark.
So as I lean a little farther, I do so knowing that no matter how far I have to lean, the Lord will never let me fall.

Rollercoaster.

Where is the exit when you want it?

Today started off great. I really though we were headed in the right direction. Nothing ever is as it seems though.

Easton is really fussy today, really clingy and just acting "off". He would lay his head on me and not let me put him down. Then around lunch time I tried to feed him. His nutrition is going to be our biggest struggle. He just wont eat. After getting him to take a few bites, and getting a small amount of his Creon down, he started throwing up. He is asleep again now, resting peacefully. I feel so bad for him. I need him to eat. I need him to be able to take his meds. Sometimes I feel so helpless.

I have to remember to take it one step at a time. One day at a time. I do not know what is the next step. I rest in the fact that the Lord does.

I will wait and see how he acts this evening and then decide if we need to take him in....

Jesus thank you for never being too far away for I could not do this without you!

update-back to childrens

Well, today EJ spiked a temp and we had no choice but to march back to Children's. Some blood work, an IV, and two rocephin shots later, we are thankfully home again. I have to admit, our new "normal" is anything but normal. I am adjusting though. Since coming home I am finally letting it all sink in. I have a child with a chronic health condition. He is immune compromised to say the least, he has pancreatic insufficiency and can not absorb any protein or fat , he is vitamin deficient, and very malnutritioned. But, he is here as I type, laying in my lap safe and sound. He is here. For that I will be eternally grateful. EJ is a miracle and has been from the moment he was conceived. We have worked so hard for him from that moment. With a high risk pregnancy and a subsequent NICU stay, he has made an impact for sure!
So as I adjust to the new medicine routine, the temperature taking, the vitamin giving, yeast controlling, calorie giving, feed forcing, love and snuggle giving, and trying to give my worry to the Lord, I am just thankful.

Thank you for all your prayers and support. We do have a long road, but oh how grateful I am for that!

thank you

I want to thank

Each and

Every one

of you who has prayed over me.

Because of you, I am home! I have a very long road ahead, but I know who's hands are holding me!

Still at Childrens

Still at Childrens in Dallas. This week has been a hard one to say the least. This was definitely not the way I thought we would spend Easton's first Halloween. However, even when times are hard God is still good!
After this week full of every test imaginable, we have a probable diagnosis. Shwachman Diamond Syndrome is a genetic syndrome which affects the bone marrow and pancreas. Luckily, although there is no cure, there is treatment.
Since EJ does not produce pancreatic enzymes like we do, he will have to take porcine enzymes to breakdown his food for him. He takes them every three hours and they have already started to help. His swelling is finally down and now we are hopeful he will absorb the nutrients he needs. The Drs mentioned the possibilty that his decreased brain matter COULD be linked to his severe malnutrition. Essentially his body was starving not being able to absorb any vitamins fat or protein. This is why he has not gained weight since July. Thankfully with his meds and vitamins we can hopefully reverse some of this.
As far as his immune system goes (his neutropenia), this will be harder to treat. The hematologist are discussing a bone marrow biopsy and then possibly starting some bone marrow stimulating injections. He would take these daily. Our goal is to try to be able to give him as normal of a life as possible without having to isolate him to much. Right now we are under isolation and it breaks my heart. He is so very vulnerable to every germ. This is a life long illness and we will work closely with our team of doctors.
As of today he is not recieving feeding through his feeding tube, but he is still throwing up. Pray he tolerates feeds!
All in all today is a better day and I am thankful for that.
The gene tests to confirm the diagnosis takes about three weeks, and I will of course share those results with you.
Thank you for your prayers, we have felt them all!

Urgent prayers for Easton

As you all know ej has been quite sick this October. Well Friday (after two days of extreme lethargy and vomiting) we took him to the ER. Long story short he was admitted and we have discovered the following;
Ej has hydrocephalus due to decreased brain matter
Ej has severe neutropenia and his immune system is about a tenth of what it should be
Ej has very low levels of albumin and vitamin K and therefore is extremely swollen and his clotting times are off

I am sorry I don't have time to elaborate right now as I am quite preoccupied. We are still waiting on about 30 tests right now to try to diagnose him.
Please pray for him and that he will recover fully.