Your Comfort Zone

(I know I've been MIA, I have a TON to post about...)

But I wanted to share something that has been on my heart this week. This past Sunday, we were finishing our study on the book of Jonah in our Sunday School class. (Side note: I LOVE our Sunday School class and continue to learn so much!)

Anyway, Justin was talking about comfort zones and how Jonah was called out of his comfort zone. And it made my wheels start spinning.

Sunday was also our 3rd "Gotcha Day" for Xander. It was the day that we were able to meet him three years ago and I started thinking about how far out of my comfort zone I've come.

Sure, we had read extensively about transracial adoption and spoken with other couples that had transracially adopted. But I don't think anyone is fully prepared though until they begin to live it.

I don't think I realized how many times I'd end up the walking billboard for transracial adoption. I mean, sometimes I just really want to buy my groceries and get home. Or I just want to take my child to the doctor and have him treated and bring him home. Some days I want to stomp my feet and say, "I don't have time for this right now!!!!"

I try to remember that some people are just curious. Others are seeking their own path towards an adoption.

But some comments are downright ugly. Like the time a person walked up to me to tell me that she didn't agree with abortion, but thought adoption was always wrong too. I was speechless. I mean, what do you say to that when you are in the produce aisle picking out apples? I told her I was sorry. *shrug*

Or the time someone saw me out shopping and asked me how many "Babydaddies" I have. That day my humor was fully intact and I tipped my head to the side and responded "Three.. and two 'babymamas' too." *smile*

Stepping out of our comfort zone, tore part of our extended family apart. We bucked tradition and parts of our family bucked back. Do I wish it could be different? You bet. But do I regret following God when He called us? Not for a single second!

Other times, because we have transracially adopted, we have had incredible opportunities to share our story and how God has worked in our lives. We've shared our faith. We've been able to breathe hope onto hurting couples. We've been able to pray with others and I frequently will remember various people that have asked us about adoption and pray for them when they are put on my heart. I'm not so sure we'd be approached as many times if it wasn't as obvious that we had adopted.

The positive interactions have far outweighed the negative ones!

Our adoption has been an incredible journey. One I'm so incredibly thankful that we were able to take. Some days when I think back about it all, I can only manage to cry tears of thankfulness.

Happy 3rd Gotcha Day, Xander! We are still as excited about you this Gotcha Day as we were on the very first one!

So that is my story of stepping out of my comfort zone, have you stepped out of yours? Tell me about it!

"A Taco... and some Diet Coke!"

Yesterday, I was stir crazy. It's rather hilarious that I used to leave our home every day and now I can go almost a week (most of the time) before I have that itch to leave.

I had.. um.. volunteered Brandon to help move furniture back to the children's wing so if I was going to go out, I was going to have to take all four, by myself.

This task was much easier before the boys turned into willful toddlers. So I try to avoid it. But I couldn't help myself yesterday.

I took the children to Target to pick up a few things. I had a short list and plenty of time. In general this is the best formula.

Xander turned into a comedian as we were checking out. First, he apparently was traumatized that I had to remove the shower curtain from his death grip to put it on the conveyor belt so I could pay for it and not make headlines in our TinyTown.

"Pregnant mom of four shoplifts shower curtain, blames son!" I could just see it.

Then he decided to make faces at the lady behind us. Luckily, she was not offended at him sticking his tongue out at her. *phew* I even apologized profusely!

And then he decided to announce to the world that he would like "A taco and diet coke."

Yup, you read that right. My 2 year old would like a taco and diet coke.

I asked him if we should try to convince Daddy to go to Chick Fil A. But no, only a taco and diet coke would do.

Where does he come up with these things?

I told Brandon the story when we picked him up from the church and he thought I was totally joking.

Until he heard the voice in the backseat say. "Goggy! (Daddy!) I wanna eat a taco and diet coke!" Plain as day.

So we did it. We went to Moe's so he could have a taco. (He really had a burrito but I'm not getting technical with my 2 year old.) And yes, I did let him splurge and have a diet coke. (I'll probably get comments about how bad diet coke is for anyone much less a growing child, blah, blah, blah... I'm all about picking my battles.)

Apparently the Diet Coke hit the spot?

And this was what he thought of his meal:

That is two thumbs up for those of you not in the know. :)

Nothing better!

~Stephanie

PS: I've had a few people ask about the lack of belly pics. With each pregnancy I show faster and faster... Be kind!

Isaiah 18 weeks!

Waiting with Baited Breath

I've been quiet on the blog because I've been crazy busy. The children are growing in leaps and bounds, the weather has been beautiful, Xander has had normal diapers and I've been off bedrest!

Things have been pretty amazing. I still haven't felt Isaiah but each Monday when I go in for the 17-P injection, my sweet nurse gives me a listen to his heartbeat. It keeps me sane until the next week. Sort of.

Xander completed his 21 days of antibiotics, started his probiotics and then we started to wait and watch. It is the worst feeling in the world to wait and see if your sweet boy starts having issues again. We documented a little over a pound weight gain while he was on the antibiotics. Right before our very eyes we watched his cheeks fill out, a leg roll appear and his arms fill out. I'm terrified of going backwards.

And yet, this morning, it appears that we may be starting that downhill slide. I want to stay on the mountaintop! Last night we had roast, baked carrots and homemade fries (our timing was off and we needed something fast for our potatoes.) He had done the homemade fries with no issues so the only new thing was the carrots.

We had an issue with carrots when he first came off of the elemental formula, but our nutritionist and new gastroenterologist threw out his reaction to carrots. But now this is twice... or is it just the beginning of constant diarrhea again?

I hate that nothing is clear cut. I hate that nothing seems to be A, B, C. And yet, as much as I hate what we are going through, there is nothing that I can really do about it except comfort Xander when he is upset, try to keep going and pray like crazy.

The last time we spoke with the gastroenterologist he said that if the diarrhea continued after this past round of antibiotics we'd be looking at doing some more scoping. But even that doesn't guarantee we will know anything.

Part of me hopes it is carrots, but then I wonder: Why he is having so many allergy/intolerance issues?

*sigh*

~Stephanie

Round Two: Ding, ding!

Today I got the run around from the lab and our doctor's office. It was a giant mess of tangled knots and I was pretty sure at one point I was being "Punk'd" or being taped for Candid Camera. If only people could actually listen to what is being said.

I don't have the energy to rehash the craziness that I went through.

Anyway, it all boils down to the fact that we FINALLY got to speak with our doctor. The lab results are not going to be done until Monday (another long story) but due to Xander's history and the fact that he recently had cdiff and is showing symptoms of it again, we are treating it.

The other possibility is that he has SIBO (Small Intestine Bacterial Overgrowth) but the treatment is the same: Flagyl (an antibiotic) for three weeks this time.

If he shows improvement over the weekend, we know that it is one of those two. If he shows no improvement then it is something else (barring an inappropriately handled sample or the test being performed incorrectly.)

Once he does 16 days of the antibiotic we will add a probiotic to try to get the bacteria in his GI tract in a better balance. He would remain on the probiotic twice a day for at least 4 weeks. The doctor gave me the name of a product he recommended, but after looking it up, it contains lactose and the label says that it possibly contains soy. We will obviously need an alternative to that. *sigh* It just never ends.

If the test results come back on Monday and say that it was cdiff negative, then we are more likely to have SIBO. If symptoms reoccur in the future, with negative cdiff testing, we will have to look into WHY he gets the overgrowth. That would come via endoscopy.

So we are slightly closer to a possibility of an answer, but it will continue to be a slow going thing.

We did ask our doctor (again) about being around other children, since Xander was in the nursery at church this past Sunday and we have three other children. Our gastroenterologist says that cdiff is spread through fecal-oral transmission. Meaning, washing hands after diaper changes are of utmost importance and of course washing your hands before meals is also of importance. I'm a little OCD about washing my hands so although I have no spleen (and therefore am technically considered immune compromised) I have not contracted cdiff and neither have any of our children (who are constantly around Xander.)

But we will keep him away from church until his symptoms improve, just in case. I just didn't want anyone thinking we are out contaminating places or knowingly putting other children at risk. We would never knowingly do that. I mean, we are the same people that stay home from church if one of our children has a runny nose.

Pray we see improvement over the weekend. While it may mean a long road, at least we would KNOW what we are fighting.

~Stephanie

"Mommy? No More Geaming, okay?"

Today was beautiful and in the upper 60's and lower 70's so we had to get out of the house. (In comparison, it snowed on Sunday and took until Wednesday before we could see our grass again!)

We ran a variety of errands and then ended up at Bass Pro Shop. Xander could happily live in Bass Pro Shop. He loves everything about it. I'm always so amazed as I watch him, how much a... boy.. he really is. I mean, he has two big sisters! But he's always been this way. Anything that goes has always been his favorite: Airplanes, boats, trucks, whatever.

First we stopped at the huge fish tank. And he squealed with delight as each of the fish passed by our stroller. Solomon had a look of quiet fear on his face. He was watching those fish to make sure they weren't coming after him. But Xander? He squealed with delight each time one darted across the large tank.

Lainey had fun trying to match each fish to the poster listing the types of fish in the tank. She taught her sister that there wasn't a swordfish in the tank. That fish was a gar.

Then we walked around a bit and made another stop by the tank. Xander was so upset as we started pushing the stroller towards the door. "F-shhhhhhhhhhhhh!" he yelled as he kicked his feet in the stroller.

And then, we did his favorite thing ever. We let him sit on the 4 wheeler. He loved it. I struggled to stay in the moment because I kept seeing a teenaged Xander ready to go on a ride with me calling out to him to please wear his helmet! My baby is growing up so quickly!

He also sat in a boat. Vroom, vroom he said as he turned the steering wheel. He's never been on the water, but he sure knows what it is supposed to do!

Afterwards, we stopped by a model home. I schlepped all the kids in (after trying to stay in the van) and we took a look around. And then I took the children back to the car while Brandon stood talking to the sales agent.

And it happened. I looked down and there was a BUG on my arm.

Y'all!

I started screaming and waving my arms around. Lainey and Julianne asked what was wrong, Solomon started crying and Xander gave me a hateful "What on earth!?!!" look as he sucked his thumb.

And I finally knocked it off.

But it landed in my purse!

So I grabbed my bright pink Vera Bradley purse and carried it arm extended to Brandon. He saw me through the glass door and came outside asking if everything was okay.

I insisted that he MUST get the bug out of my purse and without skipping a beat, he pulled out my calendar and swiped the bug on the ground and then threw the calendar back into the purse and handed it back to me. He did all this while continuing his conversation with the sales rep.

I marched back to the van and got in. As I was buckling my seatbelt, I heard a tiny voice from the backseat.

"Mommy? No more geaming (screaming), okay?"

Yes, dear.

~Stephanie

PS: We are hoping to hear the results of Xander's cdiff testing tomorrow (Friday). I really don't want to wait through the weekend. Will you pray with us that we get those results back tomorrow? Thanks!

Downhill Slide..

Saturday night, I was on top of the world. I was determined that we were going to attend church. I desperately needed to be among God's people, in His house, and soak up His word. I have no idea how we lived here 2+ years before finding a church home.

I had barely made it a month.

So I set clothes out, packed diaper bags and went to bed early. I prayed for all distractions and hindrances to move out of the way.

And then I was woken up at 4 am. Nothing was wrong, but I couldn't sleep. I had the most energy I've had in months. I could barely contain myself.

So I blogged. And then I got up and took a shower. And straightened my hair for the first time in so long I lost count!

We went to church and it felt SO good. We were so touched by how many said they missed us and asked how Xander was doing.

I shared how we figured out the Prevacid and had had the best day in a long time just the day before. So many were so happy for us.

And then when I went to pick him up from the nursery we were told that he had two loose diapers.

Hmmmmmmmmmmmmmm...

He was much fussier than he had been at lunch. Brandon and I exchanged worried looks and we both held our breath but his diapers were fine for the rest of the day.

The next morning, he had diarrhea.

And this evening I've changed several diarrhea diapers. *sigh*

After phoning our doctors, we are doing another Cdiff test tomorrow. *sigh* Another clear test would mean that we are dealing with something else. A clear test would mean that this is time for his endoscopy and sigmoidoscopy.

A positive cdiff test means that we put him back on antibiotics and depending how far it has gotten, we may be readmitted. *eeks*

We'll be waiting for those results with baited breath. Either way, something has to give for our guy. SOMETHING has to change for him.

Please pray for wisdom and strength. I can feel the panic starting to rise up within me again.

It was nice feeling normal for Saturday and part of Sunday, but once again I'm reminded just how much things have changed for us. What a cold slap of reality that was.

~Stephanie

The Best Day in a Long Time...

Yesterday (Saturday) was the best day we've had in a long time. I can actually say that it was the first day I haven't cried hot tears of frustration and sadness in weeks. WEEKS.

This has been the most prolonged stressful thing I have ever dealt with, by far. My pregnancy with Julianne was touch and go and we dealt with my miscarriages, but this has been prolonged stress, with zero answers. I don't like to live my life that way. Even walking the infertility road, we knew what the problem was.

I completely relate to Lainey and Julianne when they ask me questions about expectations. Both girls like to know what is going on, what is going to happen next, etc. I'm not sure if they are wired like that, or if me explaining to them (because that is how I'd want to be treated) has taught them to ask those things. But either way, I have no issues explaining to our children what to expect.

No one, no one, has been able to tell us what to expect with Xander. We get a lot of maybe, hopefully, and theoretically. And then he does something unexpected and it all starts again. This whole parenting gig has been an interesting lesson to me. Can anyone predict with certainty what they can expect out of childhood? Yeah, me either. Parenting is humbling that way.

But this whole health issue thing has taken that to another level.

Xander once again lost his speech. I fully believe that he COULD talk and was in such excruciating pain again, that he simply couldn't tolerate it. I asked him to use his words, just tell Mommy, and all I got in return was screeching and screaming and flailing about. So we lost speech and I felt that panicky feeling all over again. I think my deepest fear is that he was going to lose speech and we weren't going to get it back. Sure, he hopefully would. He theoretically should. But I've learned that there are no guarantees.

In a bout of frustration, and searching for something, anything to help him, I discovered that Prevacid contains lactose. We know he has issues with milk, soy and egg, but we aren't sure what part of the milk he has an issue with. Some people have issues with casein. Some have issues with lactose. Some have issues with milk, period. Personally I think that we fall in the milk group and so when I discussed it with Brandon we decided to discontinue the Prevacid. His last dose was Thursday. Friday, the screaming and screeching was still terrible. But Friday night things seemed to even out a bit. Xander was engaged and playful with me for about 20 minutes before supper. He sat in my lap. I tickled him and was even allowed to tickle him on his tummy. Pretty soon, he was going to play with toys and off he went. It was pure bliss. At dinner, he ate the best he's eaten in weeks. He ate REAL vegetables, not babyfood puree. And I started to feel hope rise up within me.

I prayed desperately that night, to please, please let my Xander be the same or better the next day. I tossed and turned, and read his records over and over. I begged God to just please let him be "with us" the next day. Not in a physical sense, but engaged fully. Please God, just let him be WITH me tomorrow. I fell asleep around 3 am.

Saturday, I had a whole new kiddo. Sure, we still had typical two year old meltdowns. For example, I allowed the unthinkable to happen. We ran out of bananas. So breakfast caused a disagreement because Xander was insistent he was going to have a banana that I couldn't produce out of thin air. And I've never been happier to see a typical two year old tantrum in my life!

I watched him as he played with his toys. He sat for probably about 15-20 minutes playing with various vehicles at the dining room table. I sat still, just watching our boy do what 2 year old boys do!

He ate his lunch and was a happy boy. I think I saw more smiles yesterday than what I saw for weeks previously.

Naptime brought typical tears. No two year old wants to go to sleep! "Mo-om-ma" he shouted from his bedroom. But then... he went to sleep! Imagine that!

He woke from his nap and was happy as a clam. Daddy came home shortly after and I was frantically trying to get us all ready to go out. When Brandon asked where I wanted to go, I said "ANYWHERE! I just want to go!!"

Xander heard that we were going bye, bye and his speech picked up. "Go bye bye?" he asked. Yes, Xander. "Go bye, bye with Goggy (Daddy?)" Yes, Xander. "And Mommy?" Yes sir! And Nene? (Lainey) Yes. "Ann?" Yes. "Sowee?" (Soli?) Yes. He ran to get his shoes. I looked at Brandon in disbelief. He hadn't said their names in quite some time. Brandon became energized and suddenly we were ready to go.

Again, in the van, Xander was engaged and alert. He didn't even care that his favorite CD wasn't playing. We were living dangerously, listening to the radio. Usually that is met with sharp disapproval from a certain 2 year old.

He pointed out every truck as we went across town. He was happy in his stroller as we window shopped at an outdoor mall.

He asked for dinner. This is something that has been very spotty in the past few weeks. He has rarely asked to actually eat. Usually, we just tell him it is time. In fact, he asked specifically for french fries. He hasn't had those since December! I've never been so happy to buy him a kid's meal!

On the way home, it was quiet and dark and I started realizing just how much we had lost in just a sense of normalcy. Brandon and I have been known as very spontaneous people. It made us laugh each time we added a child and someone said "Oh that will slow you down!" It wasn't a newborn that had slowed us down. It was a very ill boy. A boy that we are still desperately seeking answers for.

But yesterday showed me just how good, good can be. It has renewed my resolve to continue to not accept this lack of answers for my precious child. I will not accept a poor quality of life for Xander and it has encouraged me to continue to demand answers on his behalf. He can't tell me exactly what hurts, or what is wrong, but he has told me plenty. And I have a big enough mouth to tell the rest of the world for him.

~Stephanie

PS: We were thrilled to find out on Friday that Xander's strep test was negative. This is great news because it means he doesn't need antibiotics that could cause another cdiff flare. I also spoke with the nutritionist at length, and I think through the sobbing on my part and an clear expression of my frustration without backing down even an inch, she finally understands what we are dealing with. Perhaps I had been too polite and accomodating before in an attempt to play by their rules and play nice. Gloves off, folks, I'm fighting for my son!

Moving Targets, Changing Rules, and a Frustrated Mama

It's 1:30 am, and I'm wide awake. I feel asleep a little after 9 mentally drained and now I can't turn my brain off.

Two days ago, we did a weight check for Xander so I reported it to the nutritionist at DuPont along with the foods we've been able to add back in.

And somehow in less than 10 days our targets moved. See, it is perfectly alright for DuPont to discharge him on only pedialyte, apples, plain white rice, bananas and saltine crackers. At our last appointment we were told we had to get him off of pedialyte and while coconut milk wasn't her first choice (soy was) that she would be happy as long as he is off of pedialyte. She even suggested that we flavor it with syrups.

Insert, the moving target. Coconut milk was frowned upon when I reported it back. Instead I was sung the praises of soy. Nothing else was acknowledged.

Anyone remember why we can't try soy?

Oh that is right! We have an intolerance issue and besides he won't touch the stuff with a 10 foot pole these days. He also won't touch rice milk, or formula or a thousand different foods.

Supposedly this nutritionist also works with the allergy clinic, but she can't seem to understand that Xander has a real problem with soy.

So I responded with a heavily edited return email. Yes, I actually took the time to take out the sarcasm, frustration and emotion from the letter and reminded her that we have issues with soy, that we are confused because at the last appointment she stressed the need to get him off of pedialyte and told her we were frustrated that we aren't getting more encouragement since nothing was addressed other than the coconut milk.

That email was sent on Wednesday afternoon and I've yet to receive one in return.

Sigh... just another letdown from the medical community.

Let's talk changing rules. Xander changes what he will actually eat from day to day, but cannot effectively communicate this to me. He communicates but unfortunately, no matter how long he does it, screeching, screaming, crying and flailing about just is impossible for me to decipher. One day chicken is fine, the next day he won't touch it. One day rice is fine, three days later he won't touch it.

But he has halted on trying new foods as well. So the foods that have been our standby in the hospital and at home are now touch and go. And somehow I'm supposed to watch this, live through it and be okay with it.

Not happening.

So instead we get a frustrated mama. A mama that cries bucketfuls of tears. And yet, STILL, no one will help us.

Tonight in a moment of desperation, Brandon called the on call for our gastro at DuPont. We were told that if he won't eat or drink that we should take him to the ER. Brandon explained that Xander is not dehydrated and he was discharged like this (actually in worse condition.)

And somehow, the gastro on call couldn't get it through her thick head that no matter how many thousands of dollars in medical bills we have, and how many ER's we go to, NOTHING ever seems to change. We NEVER get answers. In fact, every time anyone medical does anything, he ends up WORSE than when we started.

Her advice? If you think he needs seen now, go to the ER.

Nice.. another broken record.

So now, our gastro is supposed to call us in the morning. I don't know what he intends to do or what he will say. Afterall, EVERY expectation or goal or whatever set by these people changes without our knowledge and yet NOTHING continues to be done.

And I can't get anyone to understand that we are NOT okay with that.

NOT, NOT, NOT.

I refuse to believe that we are the only parents out there that are upset that we can't find help for our son.

Another Loop..

Sunday, we were so excited Xander ate about 10 fresh blueberries. Before all of this craziness, Xander would eat blueberries on top of his coconut yogurt. I thought we were getting somewhere!

And then the screaming started. It was so bad, that I met a friend up at Starbucks for a little sanity break. (Don't worry, Brandon held down the fort!)

Monday, I woke up at 5 am with a sinus headache. I was congested and sneezing my head off. I couldn't go back to sleep.

And then the screaming continued when Xander woke up. That afternoon, Xander had a bad diaper with chunks of undigested blueberries in it.

Sooooo, blueberries are now on the No No List.

In the meantime, Solomon spiked a fever.

I was begging time to hurry up, so Brandon would be home. But I managed to hold down the fort until Brandon came home at 9pm.

Sigh...

Then we noticed that Xander had broken out in a rash in his diaper area. We can't recall Xander ever running a fever (in his WHOLE life!), but fever followed by a rash is a symptom of strep. Plus Solomon was refusing to eat. So this morning we called and got the boys appointments with our family doctor.

We went in and our doctor immediately seemed concerned. I mean, we just don't show up for fevers usually. We are more in the camp of letting things run their course while watching carefully for concerning symptoms (dehydration, difficulty breathing, wheezing, etc.) , after all most appointments with a complaint of fever result in you paying a copay to find out your child has a virus/cold, which must run it's course. Our doctor has joked many times that he wished he had more patients like us. LOL!

Needless to say, when we showed up, he knew we had some concerns. We discussed the blueberries, the rash, the fever, and the runny noses. We also found out on the way there that Xander had a productive cough.

Ears and lungs were fine. So we ran a quick strep test that came back negative. The quick test only finds about 75% of strep so we also sent out a 72 hour culture. Some doctors would start antibiotics while we wait, but our doctor isn't quick to jump to antibiotics and the history of cdiff also makes starting antibiotics risky.

So for now we are NOT using antibiotics until we know FOR SURE that we have strep.

In the meantime, there is a chance that Xander's rash is a yeast rash, caused by the antibiotics that he took for the cdiff. So we are going to use an anti-fungal on it and see if that clears it up.

See the circle we can't seem to get out of?

While we were there, we completed a weight check on Xander. He was 2 ounces less than the appointment we had two weeks ago.

Our doctor isn't overly concerned about that. I mean, he is concerned he isn't growing in the big picture, but he isn't panicking about the 2 ounces especially since he is currently sick. Our next weight check will be done in 4 weeks.

While we were there, we also asked about the genetic (blood) test for cystic fibrosis. He said that he would be willing to order it for us, and write a letter of medical necessity. Basically, he has to make a case for our insurance to cover it since the sweat chloride test is the "gold standard." We've tried that,twice, and he just doesn't sweat. He doesn't think it will be an issue to have it approved, but he wanted to wait to have it drawn until Xander felt a little better.

Tonight, I emailed the nutritionist with the 2 week check-in information and I'm eager to see what she thinks. I am nervous that she will be more concerned about the weight loss than our doctor was, but we are trying our hardest to do what we can.

Tomorrow we will have Xander re-tested to make sure the cdiff is gone.

Here are our big prayer requests:

1. That Xander tests NEGATIVE for cdiff and that it is an accurate reading.
2. That Xander does NOT have strep and therefore won't need the antibiotics that could encourage his cdiff to return.
3. That the nutritionist sees the effort we are putting in Xander's diet and is encouraging.
4. That Xander does NOT have cystic fibrosis. This will give us something that we can officially rule out.

Thanks!

Stephanie

A Rough Time...

This weekend, the determined me went looking through our medical records and replaying every conversation in my head with the various medical professionals we came in contact with.

I remembered several doctors asking us if Xander had ever been tested for cystic fibrosis.

I remembered trying to complete the sweat chloride test for Xander and twice him not sweating enough.

I remembered the ER doc at DuPont asking us about cystic fibrosis testing.

I remembered two residents asking us about cystic fibrosis testing.

And our family doctor perking up when we mentioned we did cystic fibrosis testing and the letdown on his face when we told him he didn't sweat enough.

And then I went through the screening questions from the gastroenterologist at DuPont and realized a lot of those were searching for... cystic fibrosis symptoms.

So.. I did it. I looked up cystic fibrosis.

And then I broke down into uncontrollable tears and shut myself in our bedroom and cried facedown into a pillow.

I looked up the odds of a biracial child having cystic fibrosis and didn't find much encouragement. I looked up if the fact that he didn't sweat enough would rule it out for us, and unfortunately it does not. I tried to comfort myself with the fact that he doesn't have frequent bronchitis and pneumonia, but then he does frequently have colds. Then I read that respiratory illnesses and/or gastro symptoms are usually common.

Other symptoms that Xander has that are also found in cystic fibrosis patients include:

Vitamin deficiency- Xander is low in Vitamin D.

GI symptoms- Diarrhea, large/frequent stools, mucus in stools, constipation, bloating

Slow/No growth- usually despite eating large amounts... which he was before we put Xander on elemental formula per the allergist.

I also found that while the sweat chloride test is considered the "gold standard" in diagnosis, some doctors will do genetic tests if there are issues with the sweat chloride results (like not sweating enough.)

And then panic set in. I know it was premature, but this is my blog, where I share my innermost thoughts. The day I can't be real on my blog, is the day I shut it down.

I tried to act like I had it altogether when Brandon called home from work. But he knew something was up within seconds of me answering the call. So I spilled the beans.

No mother HOPES for cystic fibrosis. I certainly am not. I *DO* want to know how to best help Xander, but I do not want it to be cystic fibrosis.

Tomorrow, I will contact the geneticist at DuPont to see if Xander is already being tested for cystic fibrosis. She only seemed interested in Xander's "atypical birthmarks" and admitted she may not ever find us an answer for that. In fact, she told us that she wasn't even going to touch his gastro issues.

If she isn't running it, I will phone our family doc and see what he thinks.

At least if he tests negative, we can officially rule it out. Right now we have two tests that were run that have no results! Two question marks.

I've been reminded by a sweet friend, that *we* are Xander's best advocate. Sometimes that seems overwhelming. It is an awesome amount of responsibility. But if we won't do it who will?

Today, I felt overwhelmed. I wanted to pull the covers over my head. This evening, I had the opportunity to chat with a friend. She reminded me that God already knows what Xander has or doesn't have. NOTHING changed with God when I read the information about cystic fibrosis last night. He is still my rock. When a day at a time seems to be too much, I'll break it into hours, minutes, seconds and that God will help me. He hasn't left me! He loves me and Xander.

And another day comes to a close. Tonight I'll lie in bed and count my blessings, taking slow, deep breaths hoping for the best. But no matter what, we ARE going to make it through all of this...with God's help!

~Stephanie

More Fingerprints...

Brandon and I are just in awe as we watch our family. The task of raising four (soon to be five!) little blessings really feels like too much for two people to do alone-- but we have God's help and He is so good to us!

His provision is great and it always has been. The more we trust and walk this road, the more He shows Himself to us in little and BIG things.

Here are just a few of the ways that He has shown Himself through our most recent trials.

1. Our family doctor was just speechless when we went in for our last weight check. He said he was embarrassed by the way that various medical professionals have treated us. When I left, I left with his business card in tucked away in my wallet, with his cell phone number written on the back. Now, we've been through a lot of doctors with insurance changes and moving and I have never received a doctor's cell phone number, ever. He trusts us to use it responsibly and we will. But if we are ever in a pinch again... we have it. Our doctor has also told us if we call to get an appointment for Xander and we are told he is booked, to call his voicemail and leave a message. He wants Xander to have continuity of care and prefers that he is the one to see him all the time, rather than his partners. (Not that there is anything wrong with his partners, but Xander's case is a bit complicated.)

2. Our church has been amazing to us. I do not find it a coincidence that we floundered searching for a church home for so long after moving here, yet all this unfolded as soon as we were settled in our church. Cool Spring's people are amazing. They have really stepped up and gone above and beyond anything we could have imagined. Prayers, dinners, hospital visits, phone calls, surprises, really... we are so blessed. I'm often moved to tears when I think about it, and ask God to let them reap far more than they have sown into us.

3. Due to the way things played out, my Auntie Karon was here for Lainey's birthday this year. Last year, she was able to either meet up with us or be here for Julianne's and Xander's birthdays. And she was here shortly after Solomon was born. But this year, Lainey had her Auntie Karon in attendance and she was so excited!

4. Due to Xander's medicines all needing compounded, we have met the most amazing pharmacist. We had to go to the little pharmacy in our little town to have Xander's prescriptions compounded, but the pharmacist read the prescriptions and stopped to ask me "What is going on with little Xander?" I explained the saga, and he was very encouraging and helpful. As I waited for the prescriptions, I got to see him interact with other customers and he was just as kind to each of them. Now, I'll drive out of my way to get to that pharmacy.

5. Xander is coming around. Slow but steady wins the race! It is exciting to watch his personality come back along with his willingness to eat a wider variety of foods. We still aren't at the goal, but we are making progress. His diapers are much better than they have ever been before, even though he has lots (!!!) of dirty diapers each day. Still, I'm clinging to the progress. We've come so far, Baby!

6. Our adoption worker from Xander's adoption agency has really stood by our side. She is always so amazed at the lengths we are willing to go to care for our children. Anyway, we were approached about an adoption situation and before anyone has a heart attack, we let her know that right now the timing just isn't right. We also let her know what was going on with Xander, and she was very compassionate and looked back through the file to see if she had any kind of medical clues for us to help. She also said that if we ever really, really needed to have some additional questions answered by his birthmom that she would be willing to facilitate that for us. She is a Believer and is praying very hard for our son. Xander captured her heart when he was born and he still has a grip on it. She literally dances in the lobby when I stop by with pictures of Xander but her favorite times for us to stop by are when we walk in with him. She just adores him. She isn't in the adoption field for the money, it is truly her calling. <3 her!

We do have a new prayer request though. We have to call around to various labs and attempt to find a lab that does a certain test for Cdiff. It is more sensitive than the test that was done at St. Mary's. If we can have this one test done, it will be so much more accurate for us. If we cannot find someone that does this test (closer than driving back to DuPont to drop off a dirty diaper!) then we have to do the other test, which requires three samples and still is not as sensitive.

Please pray we find someone to do the sensitive test. I have orders for both, just in case, but it would really set me at ease to see the results from the sensitive test. This will be my task on Monday so we have a few days to pray! (He can be tested from Tuesday to Friday next week.)

Father, You still amaze me! The way that You take care of the details, before we even know what we need continues to amaze us. We love You and are so blessed to have the opportunity to raise FIVE children to know and love You. Your fingerprints are so evident in our lives. Continue to keep our eyes open, especially when things get tough, so that we can see Your presence! Love You and praise You, Amen!

~Stephanie

Some Theories but not Any Real Answers... Yet!

Sorry I'm just getting around to posting this! Last night, we came home and turned into ooze as soon as we sat on the couch.

So we saw a new to us gastroenterologist at DuPont yesterday. Some things he told us contradicted what we were previously told by the attending doctors on the floor.

He thinks that there are three major issues we could be fighting. And since Xander's diapers actually look normal (!!!!!) right now, we have to wait to see if we fixed the problem(s) or if his limited diet has helped control the diarrhea. (Most of the foods he is willing to eat are known to actually be constipating.)

First, Dr. S says that there is a possibility that Xander has had a Cdiff infection for quite some time. We were told that this would have been impossible, but according to Dr. S it is much more possible than we were originally told.

The second possibility is that Xander has suffered from an overgrowth of bacteria in his small bowel since he was 6 months old and then he also got Cdiff. Flagyl is used to treat overgrowths of bacteria so we could be fixing two things at once, unknowingly.

The third possibility is that Xander has something else going on and we would need to do further procedures to investigate that.

I know this seems rather broad but we are THRILLED to actually have someone discussing possibilities with us and making a plan.

So what's the plan?

First, Xander completes his medication for cdiff today. In 7-10 days we are going to have him retested to see if the cdiff is completely cleared. We are also going to keep a food diary and see what his diapers look like. If the cdiff is still there, we will have to retreat it with another round of antibiotics. If the diarrhea comes back, but the cdiff test is negative, we are going to arrange to do an endoscopy and a flexible sigmoidoscopy. They will also take samples to test enzymes. Dr. S prefers a flexible sigmoidoscopy over a colonoscopy because the extensive laxative prep isn't needed before a flexible sigmoidoscopy.

If Xander tests negative for cdiff and the diarrhea doesn't come back as he expands his diet then we are done even though we will never know for sure if it was a chronic infection of cdiff or an acute case of cdiff along with an overgrowth of bacteria. We would be thrilled even if we never find out "what" caused the issue.

With all that said, I cracked open our adoption file the night before we drove to Delaware to see what Xander's bowel habits were when he was in the hospital. According to those records, he had 5-8 bowel movements a day starting at birth. When we mentioned this to Dr. S, he said that information leads him to believe that we have something else going on that has been there since before the diarrhea started at 6 months old. If he had to guess, we ultimately will end up doing the endoscopy and the flexible sigmoidoscopy.

We are okay with this. We know it isn't a for sure, A then B then C kind of plan, but this is the closest thing we have ever gotten to a plan. We left that appointment encouraged.

Next we had an appointment with a dietitian. ALL of our prayers were met about this appointment and we quickly relaxed. The last nutritionist just sighed at the end of our conversation and said "Well, I guess we will have to use an NG tube." I was very upset about that because I felt that all the possibilities hadn't been exhausted. I wanted to know that we had done everything possible before we discussed an NG tube. Afterall, it had only been a week between hospital discharge and our appointment in Delaware.

Our new dietitian has the same thoughts. She said her timeline is more like 2 months. She believes that in 2 months we can see what Xander is willing to take. We will have the opportunity to exhaust our options and try everything we can to get him eating better.

She gave us some ideas to try and we are going to be in contact with her often to see if we can tweak things over the phone and via email. We are going to continue doing the weight checks with our local doctor and will report those back to her as well. This is exactly what we were praying for.

All in all, we felt like these two appointments were worth the drive and our time. We were pleased with our interactions with the gastroenterologist and the dietitian. So now we work on his nutrition and wait to do our lab tests for cdiff.

Thank you for your prayers. They were definitely felt yesterday as we drove and during our appointments.

~Stephanie

Always, Forever and No Matter What

Today has been tedious.

We finally got our records from our local gastroenterologist (the one that did the endoscopy.) I fumed as I read the records because it is so far from what happened. Things are so misconstrued I had to double check to see if we got the right chart!

Then we headed to our Primary Care Provider for a weight check. He was just speechless as we laid out the whole story. He said he was embarrassed we had been let down by so many medical professionals.

We brainstormed a few foods to try to get Xander to eat in a last ditch effort to prevent an NG tube from being placed on Monday. He told us he doesn't care what Xander eats. That now calories matter more than basic nutrition. So we'll attempt those things.

Our little Xander is terrified of medical settings now. Even putting a thermometer under his arm is met with hysteria. It is heartbreaking to watch our outgoing guy turn into a fearful, withdrawn child. He all out refused to sit on the examination table today.

Our doctor thinks that Xander limiting his intake is a combination of Xander trying to control the situation due to the pain and trauma and that perhaps he is now psychologically averse to eating.

He explained it like this: If you had severe food poisoning from say, tuna salad, after you recovered would you want tuna salad? Or if you happened to catch a stomach flu and vomited your mexican takeout, would you be in a hurry to eat mexican again?

It was hard to hear and to think that the one thing that every human must do to live (eat) is the one thing he may be truly terrified to do. My heart just shattered in bits as I wondered what is going on in his little head.

I'm so worn down. Brandon is concerned so he called my OB and let them know what was going on. Tomorrow, I have an appointment. Knowing the baby is doing okay, would relieve a burden for me. Would you pray for my appointment tomorrow? I am having an ultrasound and will discuss with the doctor the stress that we are currently under.

The children are returning Saturday! I'm so happy about this. I was meant to be a mama to many. The house here is so quiet and lonely. I am NOT one to look forward to an empty nest.

I can't wait to smother them in kisses and have them smother me too! I think seeing all their little faces will help my spirits.

Sunday, we will be celebrating DeLainey's 9th birthday even though her true birthday is Monday. It is hard to believe I've been a mama for 9 years! We have a big surprise up our sleeves for this birthday and I can't wait to see her face!

Monday, Brandon and I will be waking up bright and early to beat DC traffic on our way to Wilmington. We have two appointments there and hopefully will be able to return home that afternoon. If we end up going the NG tube route, Xander will have to stay for observation to make sure he can tolerate it. My aunt will be here with the other three children.

While I expressed frustration and annoyance with going the NG route in my last post, I don't want to be misunderstood. I want Xander better and I'm willing to do whatever it takes. Part of me just feels like this will be a band aid and no one will look any deeper. I've lost a lot of trust for the medical community and I'm just a little gunshy. I had a little chat with a medical professional friend and she gently reminded me that NG tubes aren't the end of the world and that they are temporary. She said that this could possibly relieve some of our daily worry about his intake. I get that. But as his mama, I also want a long term solution. I'm willing to do whatever it takes to see that my children reach their full potential.

I love each of them and I tell them several times a day. I love them, always, forever and no matter what.

~Stephanie

Raw Emotions...

I'm struggling.. a lot.

I feel like I'm a bundle of raw emotion. Fear, frustration, anger, impatience all swirl around inside of me each and every day.

Many of you have read on Facebook that we are at home, again.

No, Xander is not better eating wise. In fact, a reasonable argument could be made that he is actually in a worse condition than before.

We are continuing his antibiotic for the C.diff. He is still only drinking pedialyte and will only eat applesauce, rice and bananas with an occasional pretzel or saltine cracker. This is the same thing he ate for days in the hospital. And somehow this is considered a plan.

I'm not happy that we lost ALL the foods he would eat during this last hospital stay.
I'm not happy that this is considered suitable to the attending to come home eating only these things.
I'm not happy that our gastroenterology consult never took place while we were inpatient.
I'm not happy that my conversation with the nutritionist ended today with her sighing and saying "Perhaps we will have to just do a nasal gastric tube."

I want to scream loudly that I don't want another bandaid. I want my baby to be better. I want the ROOT of the issue to be found. I want him to have normalcy and be able to eat whatever his little heart desires.

And I don't have any of that.

Only one expectation that was set for our stay at DuPont was met. He was treated for C. Diff.

We never met with the complex cases team. Yesterday when we left we were told that appointment would be Monday after gastro. Today we were told it is in March.

This coming Monday, we are returning to DuPont hesitatingly to see the gastro department and then nutrition. I fasted during breakfast and lunch today, praying for God to help me. Somehow I have to muster the strength to deal with people that have left us in a worse situation than before food-wise and people that refused to see us as inpatients.

Lord, give me tact and supernatural ability to deal with this on Monday.

Please pray.

~Stephanie

Q and A #1

How is Xander handling the hospital stay (laying in bed all day) and all of the pokes and prods? I imagine its hard for him to understand why this is happening...

Interestingly, he isn't laying in bed all day and isn't expected to. He is not allowed to leave his room, but if he wasn't contagious he could leave his room and go to the Child Life room where there are toys and activities for the children.

Xander spends most of his day snuggled in the recliner with either Brandon or I watching TV. He has been brought some toys by the Child Life Department, so he plays too.

He's not been poked since he was in the ER. They drew blood there and put in a heplock in case he needed an IV, but we lost that line on Monday afternoon. So far, we have been blessed to keep him hydrated enough with sprite and pedialyte although there have been moments that it looked like we were headed down the IV road.

The prodding he takes like a champ. The one thing he hates is having his temperature taken under his arm. He willingly allows them to take his blood pressure, listen to his heart, chest and belly sounds and even feel his tummy. How long he tolerates them pressing on his tummy is dependent on how distended his tummy is, of course.

The staff here is fabulous and understand that he is a child, not a tiny adult. For instance, when he was triaged in the ER, the nurse did the entire exam with Brandon standing and holding Xander. Many exams have taken place in our arms, or snuggled in the recliner.

Why didn't you guys go to DC National? It would have been a closer commute for Brandon.

Honestly, we hadn't heard much about DC National. I'm sure lots of people have had a positive experience there, but we also wondered if it was "too close" and if they would just consult the gastro that refused to treat our son. So instead we are 3.5 hours away from home at DuPont.

How did you choose DuPont?

It was the next closest Children's Hospital to us. I also have two friends that highly recommended it, as they have come here with their children. CHOP (Children's Hospital of Philadelphia) is about 30 minutes further than here.

Why didn't you go back to Augusta? Your children are there.

They are there, and they are being well cared for. But it is also 8+ hours from home, and Brandon wouldn't have the ability to go back and forth between work and the hospital. Also, we were concerned we couldn't make it all the way there, in the condition that Xander was in on Thursday night.

How long do you expect to be in the hospital?

No one can answer that yet. Xander is already showing improvement from the cdiff. But, as that clears up, we are going to attempt to address his chronic diarrhea and lack of growth. At the very least we need him to be eating a better diet than what he currently is willing to eat. For example: His current diet is terribly deficient in a variety of vitamins and protein. He is also very low in Vitamin D, so that will need addressed.

Are all of his issues due to the Cdiff? / Great! Now you finally have an answer!

No, all of his issues are not attributed to the Cdiff. Our doctor's best guess is that Cdiff has only been an issue since this past Wednesday and does nothing to explain his lack of growth since June, the chronic diarrhea, food reactions or the previous weight loss so we only have an answer for the acute issues, not the chronic ones.

Did he get Cdiff because of antibiotic use?

Not likely. He's only had antibiotics twice in his life. Once when he was a very small baby due to an ear infection. And again this past October for fluid in his ears. Most of the time we don't use antibiotics for fluid (our doctor's preference), but we were headed out of town for vacation and after we didn't see improvement we went ahead and got the antibiotic called in. According to Dr. Swami, if the antibiotics caused the cdiff, then it should have showed up within 3 weeks. This can be caused by overuse of antibiotics though this doesn't seem to be the cause for Xander.

Instead, our doctor has told us that some people naturally carry Cdiff in their GI tract. Everyone has good and bad bacteria in their GI tract. He thinks that because his GI system was so out of whack, it provided an opportunity for the bad bacteria (cdiff) to take over. In the case of antibiotic use causing Cdiff, the antibiotics kill off the good bacteria, allowing the cdiff bacteria to take over.

Of course, Cdiff is also highly contagious, so there is a possibility that he was infected at the previous hospital. We will most likely not know.

Why are you seeing genetics? I thought this was a gastro issue.

We were originally scheduled to see genetics in Richmond to follow up on the neurofibromatosis work up. We missed that appointment because we were in the hospital. But when the emergency room doctor here heard the whole history, she wondered if maybe, just maybe, a genetic issue or syndrome can tie all of his issues neatly in a bow. The issues include: vitamin D shortage, the diarrhea, the lack of growth heightwise, the losing weight/not gaining, the high TSH, the birthmarks, the fact that he rarely has tears and doesn't seem to sweat at all. He also had a small blood vessel anomaly mentioned in his MRI radiology report and has a small mass in his stomach. She just thought there are too many things "off" and they seem to be spread over several of his systems. She is curious if they are all related.

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I have one more thing I'd like to address. It has been hinted around by various people that this is a downfall of adoption. That we didn't know what we were getting into. Or if we would have known, perhaps we wouldn't have matched with him.

Brandon and I have learned that even with biological children, you have no idea what you are getting into, even healthwise. Our girls have their orthopedic issues. Julianne had respiratory issues as a baby. Health is NOT guaranteed even for biological children.

Even if we knew about Xander's issues beforehand, it wouldn't have made a difference. If you recall, we adopted him knowing that his birth circumstances were less than ideal. We knew that his birthmom's health history was questionable. Also, we thoroughly understood Annalise's issues and we were willing to make that walk as well.

Adopting Xander was NOT a mistake. We have ZERO regrets and we can't imagine our lives without this little guy. He has taught us so much and I can't wait to see what other lessons we will learn through raising him and watching him grow.

Nothing makes me turn into a ferocious mama bear quicker, than to suggest that adopting Xander was a mistake, or using this as a case against adoption. Adoption is beautiful and we are so blessed to have Xander in our lives. We can't imagine our lives without him. We committed to him in April of 2009 and that commitment stands. I will always be his mama, always love him and always fight for him in every way I can. Nothing can change that... ever.

~Stephanie

Settling In ....

This morning is the first morning that I felt like things are settling in. Last night Brandon and I squeezed onto a twin sized fold up bed and snuggled all night. It was the first night we've slept together at the same time and it felt amazing. Xander slept through the night peacefully as well.

It was sad saying "See ya later" to Brandon (I have a thing against Goodbyes) and for a little while after he left I felt like I was going to burst into tears at any moment. But I had little Xander to keep me busy.

This morning Xander fought hard to be perky. It wasn't his true perky self but you can tell that he wants to feel better so badly! He ate breakfast and then we snuggled and watched some movies (Toy Story 3 and Shrek.)

True to his hospital routine he fell asleep about 11:30. Dr. Swami came by right after Xander fell asleep and we discussed his progress. Some Cdiff is Flagyl resistant but since he is starting to show an improvement, Dr. Swami doesn't think we will have any issues with that.

After I spoke with Dr. Swami, I used naptime to take the opportunity to go down to the cafeteria. I've gained a sense of direction here.. FINALLY! Yesterday I was so overwhelmed with coming to the floor that I couldn't remember how to go to get to anything.

Xander's nap didn't last long though and he was very irritable for the rest of the afternoon. For lunch he would only eat saltine crackers and drink sprite.

We had a nutrition consult and she was rather stumped after listening to Xander's history. Right now we can't do much because the cdiff has muddied the waters so much. For now we are letting him eat what he wants (within reason) using small frequent meals. We are avoiding milk, soy and eggs again. Dr. Swami thinks that his tummy was so distended at admittance because of the eggs and pancakes he had the breakfast before (at the old hospital.) We are going to try to see if he will take Elecare Junior Vanilla. I'm not very hopeful but I'm willing to try! She said Elecare Jr. Vanilla is the best tasting one so we will start there tomorrow. He will still be on table foods but she is hoping to increase his caloric intake and get him some better rounded nutrition.

The nutritionist also spoke with me about a diagnostic complex issue team that she thinks we should see. Apparently, they are a group of doctors that are very good about taking strange pieces and figuring out the puzzle. We were originally supposed to be with that team, but they had a high number of patients the day that we were assigned our group so they chose Dr. Swami since he does infectious diseases and cdiff is one. The nutritionist was pleased that we are having a genetics consult on Monday. She said we will get back together and make a plan once cdiff gets better.

For dinner, Xander ate plain white rice. Then I gave him a bath and a massage with lavender lotion. I put him into a fresh gown and shortly after he fell asleep in my arms.

Another day down and we are headed in the right direction.

Thank you, Lord!

~Stephanie

PS: I'm planning on doing a question/answer post in the next few days. If you have a question, feel free to ask.

Following Your Gut...

We got to our room about 10:30 this morning and things were a bit slow to get rolling. We, once again, lost Xander's iv line. Errr... but for now he is doing okay without it so they don't want to put it in. (It was a line that they used for blood work this morning, that they heplocked in case they needed it later, instead of re-sticking him.)

The diarrhea continued and then the vomiting came. His bottom is raw again and we have a special concoction from the wound care team here at DuPont that seems to help more than anything we have ever tried.

About 7:30 the attending came in and we spoke at length. He was fabulous and explained things thoroughly without making us seem like morons. We asked if he had been positive when we were in Richmond. He believes that the soonest the cdiff started was the day he vomited whole food at 4am on Wednesday.

He told us that this hospital has a newer test that they have been running since August and that the other lab test may not have picked it up, without doing anything really wrong. We are blessed to be at a cutting edge hospital.

Our doctor also is part of the infectious diseases team here so he really knows his cdiff. (A blessing from the Lord!) For now, we are treating Cdiff. He vomited tonight, but the flagyl had been down long enough to "count." He will get the flagyl four times a day (every six hours.) As the cdiff clears we will look at his symptoms and go from there.

Brandon leaves for Richmond at 1 am to go to work. :( But he is returning Sunday night. This weekend will be easy foods, antibiotics and watching for dehydration.

His partner takes his cases on Sunday night and he says she is just fabulous. I feel better informed and less stressed and overwhelmed. I also got a few hours of sleep. We've cried many tears of relief.

I nearly lost it when the doctor told us that this could have killed our Xander if it was left untreated. Thank the Lord that I ask every morning for Him to guide me and give me insights. I firmly believe that He placed a huge knot in my tummy when we left the hospital on Thursday night. I felt a wild panic unlike anything I have ever felt before and just knew that I had to do everything in my power to have someone treat him.

I'm so thankful that Brandon and I have the kind of relationship that I can say, "This is my gut feeling.." and he is willing to listen. But make no mistake, Brandon wasn't skipping out of the hospital in Richmond. I'm just a little less patient when I think things aren't going right. Some call that a fault, but in this case, it was a gift-- a gift that may have changed our course and made it where I can watch Xander grow into a strong man. Thank you, Jesus!

Monday genetics will come visit. They will try to piece together his birthmarks and some of the other odd things that we have noticed. Maybe this can all be tied together with an explanation from genetics. The thought of that is a little scary, I admit, but I know that God has always been by my side, even when I wasn't open to His direction and He will continue to walk with us. His love for Xander is so evident when we look at Xander's life and I know that He isn't leaving us on Sunday night to go into that genetics consult alone. I can't borrow trouble at this point, we have enough going on already.

Several of you have asked about the other three children. They are in Augusta, Georgia with my aunt and are pleased as punch to get to spend time with her. Julianne and Lainey (and mommy too) have been rallying for Auntie Karon to move to Virginia with us. This is the second best thing. I spoke with them tonight and while it was very hard on me, it made it a bit easier to hear the laughter and happiness in their voices. They are doing fine and really just want Xander to feel better.

We thank you for your prayers and words of encouragement. Several of you have sent me verses and that has been amazing for the moments that I start to doubt. I can never repay each of you for your faithful thoughts and prayers.

I'm off to snuggle with Brandon before he heads back to Virginia.

~Stephanie

Discharged and Admitted...

We were discharged from the hospital in Richmond last night. The first paper I was asked to sign said that everything was resolved. I refused to sign that.

So they discharged him with a paper saying that he still has failure to thrive, diarrhea and dehydration. We asked for a transfer to a Children's Hospital outside of Richmond. We were told the only place they could transfer us to would be UVA. UVA is a teaching hospital that is not a pediatric specialty facility. It is one hour away. Our requests to be transfer to a pediatric specialty hospital were denied.

I was flabbergasted.

Xander was obviously still in great discomfort and his diarrhea had begun again. Brandon and I prayed and decided to drive to Wilmington, Delaware to have Xander seen by DuPont Children's. We handcarried all the records we had and his adoption paperwork.

The triage nurse just couldn't believe what we'd been through. We got a room within an hour and the nurse took all my papers and made copies. She took a thorough medical history and examined Xander thoroughly.

Shortly after the ER doc came in puzzled. We explained our frustration, the inconsistencies in the records we had, and how he was still in pain. Xander was barely drinking pedialyte and his stomach was very, very distended. He also continued having very smelly wet burps.

We did a belly xray and we were told that it was abnormal. He was very full of something. Guesses were food and stool and his stomach was enlarged greatly.

Some of the lab results we carried here were just wonky.

We were told we were being admitted to regular peds and that a team that does hard cases would try to put together all of our pieces and we would consult with the specialties.

And then a stool sample came back positive for C. Diff and blood. So we are now on the gastro unit in an isolation room. Xander is not permitted to leave the room and everyone that comes in puts on gowns, gloves and a mask.

Everyone here has been amazingly gentle and kind to us. The nurse that told us about the C. Diff says that her gut says there is more going on than just that but that we have to start to peel back the layers of the onion.

We are obviously greatly disturbed by this news. We are struggling greatly with disbelief, anger and sadness but at the same time feel relief that we are finally where someone will help us.

Thank you for your prayers. We feel like prayers and God's goodness have gotten us here.

~Stephanie

Dr. W...

Last night, I had to raise a ruckus about our lack of care. The medical director (over the attending doctors which are all pediatricians) had been in to see me, and saw the diarrhea diapers. She saw them test positive for blood with her own eyes. She had been on the phone every day this week with the gastro doctor that is "on call" here.

And yet, yesterday, he refused to see us. He sent a message through the attending that we could follow up with him outpatient. I thought that was ridiculous and told everyone we had contact with how ridiculous I thought it was.

I called the number on the medical director's card and was told she would be returning to the hospital to speak with us. Her secretary immediately came upstairs to wait with us.

The medical director was apologetic when she arrived, but said that part of what we are facing is the "limitation of Richmond." This one gastro practice covers all the hospitals here, so even if we were in another local hospital, we'd get the same gastro. And since he was on call there was really no way to reach anyone else.

She said she could call a colleague at UVA but that it would be a phone consult because they do not have privileges here. So there would be no examination of Xander. I told her that was ridiculous.

She said there was a small possibility she could call in a favor and speak with another doctor from the same practice but that he was not on call so he of course has the option of not coming.

I told her that this whole thing was insane. I had a child vomiting, with diarrhea that tested positive for blood and he had dramatically decreased what he was eating and even drinking. I told her if no one could help us here, that we expected a transfer to a major pediatric medical facility outside of Richmond. (Richmond does have a Children's hospital but again, we'd get the same doctor.)

She ended up calling Dr. W and asking for a favor. He said he would be here this morning because he had a lecture here this morning and he would see us afterwards. We were satisfied with that solution.

The patient advocate was the next person in our room, and we let her know how the first doctor had treated us. We filed a formal complaint that will be evaluated by their quality team and their medical team. I also let her know that I fully intend to file a complaint with the medical board and our insurance. Her eyes were bulging out when I told her everything we'd been through here.

This morning, Dr. W arrived and took a full medical history for Xander. He examined him thoroughly. He asked a ton of questions that we answered willingly. He doesn't have any answers yet and he apologized profusely for that. But he is willing to try to find help for us.

He has removed ALL the dietary restrictions because he does NOT feel any of this is allergic in nature. When Xander was first admitted he was on a regular diet minus eggs, soy and milk. Then with the vomiting and diarrhea he was moved to a bland diet. ALL of those restrictions have been removed. Brandon and I are concerned about this, but willing to try. Dr. W thinks that we may have just had a coincidence with those foods. If things go badly, we can rehydrate Xander here.

Dr. W. is going to look back through the records and the history we gave him and see if he can come up with something. Brandon and I feel heard again. The second doctor is honestly the complete opposite of the first doctor. He was thorough, soft spoken, caring, empathetic and reassuring.

Xander's stools do not test positive for blood so far today. He is very fussy though and has a very large, round tummy. I feel like this is the calm before the storm, but we'll see.

This morning, he had lost the little bit of weight he had gained here. And he is still listed as failure to thrive.

Thank you for your prayers. We know and love God and truly believe that He loves Xander even more than we do. As a mama, that is very hard to imagine. In fact, just the other day, a nurse asked about Xander's pregnancy and it took me a few seconds to remember that I wasn't pregnant with him. The love we feel for Xander is great and it is very hard to remember a time without him. We are willing to fight and advocate for him for as long as it takes to get him the help he needs.

Please continue to pray for Brandon and I. We are weary but again, willing to do whatever it takes. Brandon is greatly worried about the emotional and physical stress on me, since I am expecting, so we are praying for God's protection for our sweet, tiny babe. Pray for Dr. W, that he is willing to be a champion for Xander and do whatever is necessary to get us an answer. Pray that Xander feels better soon. And pray for my other three children that are currently in Georgia with family. Solomon keeps looking around for his partner in crime, Xander. My children have never been divided in this way.

I'll continue to update as I am able.

Vomiting and Diarrhea... Again...

This morning at 4 am I woke up to the sound of Xander vomiting. His dinner was recognizable in the vomit... 11 hours after he ate it.

We got him and the linens changed and he went back to sleep.

This morning we did another sweat test for cystic fibrosis and again.. he didn't sweat enough.

This morning he ate very little breakfast. A small sausage patty, a half a piece of toast and a handful of cereal. He refused rice milk.

And then all he wanted to do was rock. If I slowed down the rocking chair he would scrunch up his eyebrows and say, "Rock, mama."

So I did.

For over 2 hours. And then he vomited all over me and him. Again, more chunks of food.

The endocrinologist came in and said that his TSH was only a little high and that it couldn't cause all of this. The plan is repeat that lab in 6 weeks with our regular provider.

And then the diarrhea started. He's had two diarrhea diapers in a little over an hour and a half.

We changed the rice milk to pedialyte and he refused to drink.

The attending doctor came and spoke with me at length about his entire medical history. The immediate plan was that if he didn't drink a cup of pedialyte in 2 hours we would have to re-iv him.

He just finished his second cup. So at least we are holding off on the IV.

But we are back to the drawing board. The attending said she was going to the medical director and back to the gastroenterologist that we consulted yesterday. She is asking for a colonoscopy while we are inpatient.

In the meantime, she is going to speak with other collegues and see if she can come up with something... anything to help us.

At least today I feel heard.