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!