Friday, September 21, 2007

Poor Baby

It is 11:30am.

Drew has not left this spot since he woke up this morning...he just drifted back to sleep.

As you might guess, he is sick, again.

I am only sharing this so you might also pray for us.

Drew has been consistently sick every 3 weeks since May. With only a high fever.

The blood work came back negative for lymes & coxsacky virus.

I am at a loss.

But this time it is much more.

He is also lethargic, complains of his head hurting and sensitivity to smell and cold, and is having difficulty performing simple requests without having a meltdown.

He's thrown up 3 times since last night. So on top of everything he is now probably dehydrated.

Thankfully, I have a wonderful pediatrician who is taking time to really explore the different culprits. And I have another appt. this afternoon.

For whatever reason this may be happening, I do know that it is doing something HUGE in my heart. I would never say I struggeled with loving my children, but there are times the pressures choke away my perspective & patience with the 2 wonderful gifts He has given to us. This is certainly stripping away any and all distractions and cares that take away from my love and care for my children. Especially Drew right now. From the beginning, I have had to fight for him. He never latched on his own until he was 6 weeks old!! I cannot begin to tell (and will spare you) all that I had to go through to get him to independently nurse! (I think I only grasped the full of it when Jack was a pro-nurser from the get go). And in the hospital with Drew, the dr. noticed some muscle tightness in his legs. They ran test after test to rule things out that could be cognitively related. Wow...did that throw me for a loop as a first time mother.
"You're taking my baby...WHERE??
And doing a brain scan...WHY???"
Which resulted with in-home physical therapy for Drew's first year due to hypertension in his hands & neck.
Now, I know there are families out there who have gone through much deeper trials and health difficulties, and I in no way compare myself to them. And upon meeting Drew, you would never guess any of these things about him. We have had a managable amount of "bumps" in the road with all the medical help & support I could have ever asked for.

But nonetheless, it is scary.
Last night, Drew was sleeping on the couch in the living room and I was parked on a mattress on the floor beside him. Once he fell asleep, I must have checked his breathing a dozen times. I just pleaded with the Lord to reveal the reason of his sickness if it is life threatening, and if He doesn't that I will rest in Him, knowing He is completely in control.
He also is a carrier of a blood disorder from his Mediterranean lineage (i.e. paternal...who also has it) called Beta Thalacemia Trait. The doctor explained it like this:
If you were a baker, and had an order of 200 donuts to make, but were short on flour, you decide to still make the donuts and deal with the consequences. So, in the end, you still have 200 donuts, they are just not as cakey and fluffy and are much smaller in size.
This is how Drew's and John's red blood cells appear. They cannot carry the same amount of oxygen as normal and therefore it easily comprimises their immune system. It looks like anemia, but there is NO iron defficiency, a common mistake of a diagnosis. So...if Drew misses a nap or gets to bed quite late for some reason...he inevitably wakes up sick. Sleep deprivation is their biggest enemy!! Not only does he seem to catch EVERYTHING but it also takes him much longer to recover. Even though it is quite frustrating, the Lord allowed Drew to be a carrier and we rest in His sovereignty. The pediatrician drew out a whole genetic chart of % for me and there is a 50/50 chance for our children to be carriers (even though all 3 of the neiner kids have it). THUS, the wonderful news that Jack IS NOT A CARRIER!!! I was really thrilled about this and even though I know God makes no mistakes in these matters it certainly spells out to less sickness for Jack!!! AND, the neat thing the dr. told me about the trait is that carriers build an immunity to MALARIA. He even said, "So, Andrew would be a good candidate to be a missionary to Africa someday!!" Isn't that amazing!!??
Thanks for taking the time to "listen" and for praying.
I have to go...Drew is awake now.


Rachel said...

Hi Erin,
I hope that you don't mind me posting on your blog. I am a friend of Tammy's and I knew your husband (sort of) while he was an intern at Trinity. I left a comment a long time ago but I haven't wanted to bother you too much.
I must admit that I cried when I read your post today. The picture of your little Drew is so dear and your mother's heart is so apparent in what you wrote. I will add Drew to my prayer list and pray faithfully for him and your family.
Thank you for reminding me of what is important. You are a good mom and Drew and Jack are blessed beyond measure to have been born into your family. No need to respond, I just wanted you to know that I am praying.
Rachel Feehan

Conleys said...

Poor thing! We will be praying for your family and that the doctors can find the culprit of Drew's sickness. We will pray also that God will give you the grace and strength to wait on Him as He reveals His plan for you all also.

Debbie Griffin said...

You summed it up perfectly! It is so easy to let the stress and fatigue of motherhood overwhelm us...there's little that's better at reminding us what a blessing our children are and how much we love them than a sickness. It's such a good reminder of their helplessness and dependance on us. What a good parallel for our relationship with our heavenly father, heh? God alone is your strength--He's probably viewing you the same way you're viewing Drew right now...I'll pray for Drew to be well again, and I'll pray for you that you'll find comfort in knowing that God is right beside YOU as you sleep in His will.

Tricia said...

Oh Erin, I can only imagine how your heart is feeling right now. We will be praying for litle Drew and you guys. Thanks for sharing this with us so that we intercede and see the mighty hand of God at work!

Liz said...


We are keeping Drew in our prayers.


Tammy Schindel said...

Erin...I am so sorry. I will continue to pray for Drew AND you and John (for strength and wisdom).

Tfipps said...

Erin...we're praying for you all and little Drew! It is so hard to watch your kids be sick when you know what is wrong with them...I can't imagine how hard it must be when you don't know what is wrong!

Stephanie (Wolynes) Steinbart said...

Hey girl, Some of us fight to get pregnant, some to sustain the pregnancy, others through childbirth. And then there are those who fight for their seemingly healthy children to survive. We are special people whom God has showered blessings on -- and drew is SUCH a blessing. From the moment you meet drew, his spirit lights up your life and touches your heart. I will be praying for you all. And canon sends his love to pal!

Beth and Jason said...

My heart is heavy for you. I'm praying.

Josh said...

Praying for you and your family's health now, Erin. Thank you for sharing all of this!

Janelle said...

WOW, what an encouragement you are! You have such a servant's heart even through the difficult times. It is so draining having a sick little one, but you are totally relying on God's strength and that is such an inspiration. You also look at the bright side of things. Maybe we should start praying that Drew will be a missionary! I will keep he and you, and the rest of the family to have God's grace showered upon you while Drew isn't feeling well and that God will give the doctors wisdom to look in every knook and cranny to see if they can find either what is causing this or for something that will make it easier on your poor little guy!

Anonymous said...

Hi Erin,

We have been in those shoes with Amanda until she was diagnosed with Celiac at about 20 months. It was so hard to watch her wasting away; but God was faithful. Then as a teen, eventually being diagnosed with GERD and asthma; but God was faithful. Your mother-in-law knows well some of the struggles Amanda has faced over the years, but God IS faithful. He has used these trials in all of our lives to bring glory to Him. As I have watched my children struggle with different illnesses, I felt so helpless. We will pray that the Lord will give wisdom and direction in getting a diagnosis and treatment for Drew. Persist, and pray. The advantage of Drew being a child is they won't say it's in his head...God is faithful; He will carry you through.
Sandy Blain

Kathi Hayes said...

I'm so sorry to hear about Drew's sickness. It is so tough on us parents to see our children (and grandchildren) fighting fevers and illnesses. May you experience God's all-sufficient grace through it all. And, yes, maybe God has plans for Drew to be a missionary someday. Wouldn't that be wonderful?

Leah (Parrish) Millan said...

Oh Erin! I just now read your post. When you e-mailed me earlier, I had no idea that Drew was this sick. I was in AJ's room on a mattress last week, and the Lord comforted me with the truth that He never slumbers or sleeps! I love you, and we will be praying for you guys!

Erin Neiner said...

THANK YOU ALL for your prayers & wonderfully encouraging words!!!
I wish I could write a responce to each and every one of you!! You have certainly uplifted my spirit during this time!!

Jill King said...

just read your post. we will be praying for you all as the testing continues. Hang in there and rest in His sovereign will. Our ladies group started working on a new Mac Lynch song last night and there's a phrase in it that says something to the effect of when we are in the middle of a storm the Lord says "Peace," not to the storm, but to us.