(Very) quick update

Yes, I know that I haven't been updating like I should...but I have had SO much to catch up on that I haven't had time.

But, I'll give a very quick update:

Ella Beth went in last Thursday for blood work. A neonatal lab specialist was requested to "stick" her, and she was successful on the FIRST try!!! Yippie! She even got Ella Beth to talk to her while the blood was flowing (very slowly) out. She asked her how old she was, and Ella Beth said, "I'm two and a half." Then, she asked her when her birthday was. Well, Ella Beth really perked up, forgot about the needle in her arm and said, "My birthday is August 7th, 2006!" We all just cracked up that she actually said the 2006 part! It made her blood flow a little faster, too. :)

OK...So some of her tests have come back. She was NEGATIVE for Hepatitis A. :) Her liver readings were back within the "normal" range. :) And the test for Celiac Disease has come back NEGATIVE! :) Huge blessings there! (Of course, we've been told that there are often false negatives with Celiac...but not worrying about that. )

She goes to the GI specialist on Thursday for a physical and complete work up. Can't wait to see what they have her do during her physical. They just need to play some toddler tunes, and she'll just dance and sing her way around the office for exercise!

OK...gonna get back to work (Hi, Russell!). But, since our pediatrician just called with the results, I really wanted to get this posted. Thank you all who have called to check in on Ella Beth and Landon. So glad I finally have updates to share!

Still thinking...

So, just a few weeks ago I posted what turned out to be a slightly controversial post about our church. Didn't notice the comments??? Well, that would be because most people responded to me via email or through a phone call. I will not disclose anyone's name or direct comment, but I was very interested that so many people felt the same way that Scott and I did.

It seems almost that we must sacrifice community for teaching, or sacrifice teaching for community.

Almost.

During the last 3 1/2 weeks, our really big church became a good bit smaller. I don't know if it took someone as insignificant as me writing about my disappointment, or if it took a really good friend...or both, but we have come to realize how hard times can bring out small communities in a really big church. 

My dear friend, Ashley, took it upon herself to be the go-between for our friends and give them updates and ask for specific prayer requests regarding Ella Beth and Landon's status. During a time when we were relying on the prayers of others, but not having a spare moment to send out an email, Ashley stepped up in wonderful-friend-fashion to let everyone know what was going on and how they could pray for our children. On top of that, she also became the organizer of a meal calendar for those (amazing!) people who wanted to help us out once we got home.

Our small group leaders, Tom and Amy, also stepped up and were wonderful to visit us at the hospital, call to let us know they were thinking and praying for us, and come by to visit us once we were home and semi-settled.

Will our entire church ever know that we were struggling as a family? No. It's probably a good thing, too, or we would have way more food than we could ever eat!!! And, it's OK with us. We are not desiring to be the center of attention in any situation, we just wanted to know that the church we are so deeply committed to is equally as committed to us. In a small way, it is.

It's good that there are "systems" in place for such a big church to reach out and be the community for its members. There is no way that "systems" in a big church will ever be perfect. I suppose there are just too many people to please. ;) I can say with confidence, though, that our church is always looking to improve itself.

It will be improved by us some time in the future. When someone we know is struggling and in need, we will be the first to lend a helping hand. Perhaps the "pay it forward" method is what will keep our big church grounded and a tad bit smaller.

Home...at last

Below is an "update" that I sent out in an email, (new info below):
The infectious diseases doctor came to see us about 12 o'clock on Tuesday. She talked to us and explained how they had tested for every
disease that they could. All tests came back a little "off," but not
far enough off that they could diagnose her with anything specific. She
also told us that Ella Beth is not contagious. Apparently there is a
horrible virus going around Cumming that a lot of children are coming
down with, but that Ella Beth isn't the source of people we know
getting sick. Whew! Of course, most of them are only sick for a day or
two, but that the GI specialist was coming to see Ella Beth later that
afternoon and explain why her system wasn't able to handle just a
normal stomach bug.

The
GI doctor was a nice man, and took a lot of time talking with us. He
explained that there is nothing that they can do for Ella Beth right
now. Her "gut" (did you know that is the actual medical term that
doctors use for the digestive track? I thought it was funny)...anyway,
her gut is very damaged right now from being sick for such an extended
amount of time. Due to the "damage," there are no tests that he can do
that would accurately report what's truly going on. The doctor did tell
us that he suspects that she is allergic to whey, which is one of the
components of milk. She is off whey until her appointment with the GI
specialist in two weeks. He hopes that her gut will be on the mend so
that he can determine why a stomach virus would cripple her so
severely. Right now he is thinking that whey isn't digested properly
which would lead to an irritation; mix that irritation in with a
stomach virus and bam!

We
were given the option of staying in the hospital to keep Ella Beth on
fluids and allow them to continue monitoring her intake and output, or
we could do it at home. For us, it was an easy decision. There was no
point in keeping her at the hospital (where she is terrified of
everyone) when we could get her back to her normal environment. Alas,
we are home. She is still adjusting, but doing well. Her energy level
is low from not being on fluids 24/7, but she has eaten relatively well
today and has drunk a decent amount of water.

Landon is still
getting sick, but the doctor suspects that he may also have the same
allergy that Ella Beth has. He has advised us to keep him on the same
whey-free diet to see if his symptoms improve. The most important thing
for both of them is to keep them hydrated and eating as much as their
symptoms can tolerate. Both were put on Prevacid to help with the acid
that is in their guts so that their food can (hopefully) stay down and keep them comfortable!

Again,
we can't express our gratitude enough that you prayed Ella Beth back to
health. We are amazed by your friendship! I would like to encourage you
to visit CHOA at Scottish Rite some time when you have a chance. The
children there will change your life. Some times it was actually
difficult for me to pray for my own Ella Beth and Landon because during
my prayer I would shift my focus on another child that I had seen that
day. One with leukemia who was fighting for his life; the children with
severe malformations who will always struggle to live a normal life; or
the precious little girl whose room was next door who suffered from
chronic pain due to Chrones disease. Life was definitely put into
perspective for us.

So, after all that...we get a call from our pediatrician today saying that she needs Ella Beth to come in to the office tomorrow morning (Friday @9:15) in order to test her for Hepatitis A. She told us that Ella Beth's liver readings are out of whack, and with all of the symptoms that she has had over the last 3 1/2 weeks, there is a chance that she could have contracted Hepatitis A. So...my poor, sweet, little girl has to go get "stuck" again tomorrow morning. Hoping beyond hope that she does not have Hepatitis A. There is no medicine for it, and while it only lasts about 3 weeks...symptoms can return full force for up to 24 months. Sheesh.

Our 2009 sure has been a doozie so far. I hope everyone else's has started better...and I'm crossing my fingers that it improves for us. April sounds like a great month to start!

And here we go again...

 So, I started this post the other day thinking that I could just finish it at the hospital. I didn't bank on my computer not working at the hospital. Alas, Scott brought his computer so I'll finish this post before I head home to be with Landon (who is sick again...but more about that later).

Here is Ella Beth once again in the ER on Friday night. She started vomiting and having diarrhea again, and was more lethargic. When we got here her sugar was dangerously low, she was more dehydrated than ever, and was in very bad shape. The doctor saw her and talked with us for about 5 minutes before he said, "She's not leaving here again until we know what's wrong." That's exactly what we wanted to hear - finally someone was in agreement with us.

At 2:10 A.M., Ella Beth was finally moved to a room. She was worn out.
 

Here's her new room.

Exhausted and ready to feel better.
 

So, today is Tuesday. Here's what we know:

Ella Beth is still getting sick. She threw up all over herself and me this morning. She has "pottied" 3 times already today. WARNING: grossness...her poopies are all mucus, and they are indicative of an infection. They just haven't found it yet. She is skinny, skinny, skinny. I can count all of her ribs and vertebrae from 10 feet away. (In the picture above, however, you can tell how distended her belly was when we got here. She was bloated beyond belief. She looked like an olive on toothpicks.) They have tested her for parasites, viruses, and acute diseases. They say that they have ruled all of those out since her symptoms have gone on for so long now (21 days and counting).

This morning around 2 A.M., Scott got up with Landon who was throwing up. He threw up and had diarrhea for hours, until he finally crashed around 8 this morning. Landon came to the hospital with me on Sunday so Scott and I could trade cars (due to car seat issues). Once I told the doctors that he was sick again,they got very worried because he wasn't here long, they didn't have much "real" contact, and it's been so soon afterward that he has come down with her symptoms. They have now put us on alert for infections diseases. They have called the Infection Diseases specialist, but we have yet to see him/her. Apparently, time at the hospital is only measured in WAITING hours. Very frustrating.

So, we are still here, but with no more answers than we had previously - other than a parasite NOT being the cause of her sickness. They are still giving her the meds for the parasite saying that it might kill something else. Apparently it's not working.

I'll update later once we know something (hopefully).

Scott and I can not tell you how thankful we are for your prayers. We truly feel that Ella Beth has kept her spirits up (most of the time!) due to the prayers that are pulling for her. We are all so blessed by your friendship. We also want to thank you for sharing Ella Beth and Landon's prayer request with those that you know. We are humbled by the outpouring of love and faithfulness of those we know, and many of those we don't. Scott and I can not express our gratitude enough.

Update from home - take 2

First, here are pictures from the hospital. (Please note, ALL pics were taken with my phone...not good quality, but all I had.)

Scottish Rite is very good when it comes to caring for kids. They had each child's name on the door.

Scott and Landon taking a walk after Landon's first night at Scottish Rite.

It didn't take much to wear Landon out.

And, here is sister.

After 12 tries...YES TWELVE...the IV team was able to put a temporary cath in her foot through a blown vein. It lasted about 5 hours until her foot was so swollen it was twice the size of her left one. (They tried 5 more times to get a new IV in, but her veins were too blown. That's a total of 17 sticks.) ELLA BETH WAS SOOOOO BRAVE!

Landon and Ella Beth taking one last wagon ride together before Landon was discharged.

Ella Beth playing with play-doh while we were waiting for her to be discharged. This picture was taken after her fluids and after anti-nausea meds; she looked better.

Exhausted, but ready to go home.

UPDATE:
Since we have been home:

Landon has been doing better. His diapers are still evident that his
body is fighting an infection (I won't gross you out with the details
here!), but he has definitely settled down over the last couple of
days. At first it was hard putting him down to even wash our hands, but
now he is getting back to his sweet and happy self.

Ella Beth is a different story. Just like the first time she went into
the hospital, she did well for the first day after she was home...and
then she just crashed. Yesterday when she woke up from her nap, she was
sick. She is puny, weak, and very lethargic. I took her back to the
doctor today b/c she has a fever and has thrown up 5 times since
yesterday. The doctor is at a loss for what is going on with her -
which doesn't make Mommy and Daddy feel any better. Our pediatrician
has spoken with a GI specialist and is trying to work on getting Ella
Beth in ASAP. We were advised to give her Prevacid to help with the
acid that is just sitting on her stomach since it has been empty for
days. Ella Beth all but refuses to eat and drink...which isn't good.
She may be re-admitted to Scottish Rite soon in order to get her back
on fluids.

Anyway, if you could keep Ella Beth in your prayers we would really
appreciate it. It's so hard to see our tiny girl so miserable. She is
usually so energetic and talkative; now, she is lethargic and when she
does speak her words are very slurred (which we have been told is due
to her dehydration). Also, her weight is very low...around 20 pounds.
Her little body just can't take much more of this. I had a little fear
take over when I left her in her room for nap time. I just kept
thinking, what if her body gives out and she doesn't wake up? Just
confronting Satan and telling him to get out when thoughts like that
come.

OK, sorry if I've rambled; I'm a little tired myself. Thanks for the prayers.

OH MY WORD.

I could basically stop right here and tell you that life has been miserable. Period. But I'll give you the details.

In the last 5 days, both of my children have had visits to Scottish Rite's ER. Both have been admitted for a day.

Somehow, a disgusting sickness has invested our house and decided to camp out in our children. As exhausted as Scott and I both are, we are not nearly as miserable as Ella Beth and Landon have been.

It all started the night we got home from the hospital, Tuesday, March 3rd. Scott's grandpa had a massive stroke early that morning, so we went to be with Scott's family because they told us that his grandpa was not going to make it.

Please note: Never take your child to a hospital unless they themselves are sick.

At 2:05 A.M., Scott's mom called to tell us that Grandpa passed away. At 2:15 A.M., Ella Beth threw up. She proceeded to throw up for 2 hours. After that, she had diarrhea for days. Then, Sunday evening she started getting worse. She was either throwing up or on the potty for 10 straight hours. Monday morning, she and I headed to Scottish Rite where she was admitted for a GI infection and severe dehydration.

After 3 adult sized bags of fluids and a blue popsicle, they let us go home.

Yesterday, Saturday, March 14th, Landon woke up with a 103.1 fever. 3 1/2 hours after he was given Motrin, his fever was still at 102.9 and his lips and finger-tips were blue. We called the pediatrician, and they told us to get to Scottish Rite immediately. 

 

 

After 1 adult sized bag of fluid and a pack of crackers, we were sent home. (Gatorade was mine.)

Ella Beth was sick all day yesterday, too. Scott was with her at home, and she threw up for over an hour and was on the potty 5 different times after that. She also developed a fever of 102.

During the night last night, Landon woke up with a fever of 104.1. We put a cool wash cloth on his forehead and wrapped up an ice pack to lay on his back while we took turns holding him. His fever came down to 102.9, and he fell asleep until 5:30 A.M. Of course, his fever was 103.4.

Who knows what's wrong with my babies? Apparently, no one. Our pediatrician has been more than wonderful (Dr. Joanna Morris, Dawson Pediatrics, 706.216.2771 - who I recommend to everyone). She has done cultures that don't offer answers. The ER doctors just tell us it's a virus that must "run its course." OK...is it supposed to suck the life out of my kids in the process?

Literally, Ella Beth and Landon have (maybe) 10 minute bursts of energy and then they just lay in our arms, on the couch, or in their beds for hours. Both are lethargic and miserable. It's so pitiful, and we can't do anything more than give them fever reducer, vomiting reducer, and lots of love. So far, none of those are doing much good. Well, the cuddling sure is spoiling them...but, what else could we do? Not hold them after an hour-long vomit spell or when they have high fevers? Yeah, I'd like to meet one of those parents...

So, that's what has been going on with our household. Please keep Ella Beth and Landon in your prayers - pray that whatever it is will "run its course" and leave VERY soon.

Something got me thinking

Scott made a statement the other day that has really gotten me thinking.

"I brag so much about our church and how awesome it is. I really do enjoy attending and being a part of it, but I felt like such an idiot last week. At Grandpa's funeral visitation, not a single person that we know from church (friend or acquaintance) came to visit or to see us. I felt like my parents were totally shocked and disappointed that we are so committed to something that isn't really committed to us. I'm really starting to rethink my priorities regarding where we attend church and how we want our family to grow up."

First, for Scott to say something like this is very heavy.

Second, I have to say that I agree with him more than I ever thought I would.

The people who surrounded Scott's family during their time of loss was their church. That's who they consider their family. It's their "Home Church." It's made up of people who cried with them at the funeral home, recalled good memories, and who supported them beyond belief during their grief. It's people who came together to bring food that sustained all of us (his whole immediate family...around 30 of us) for a week. It's these same people that Scott's family will do the same thing for when they experience loss.

At his family's home church, you are missed if you're not there. You are loved like part of the family.

Our priority of attending church where we do is to learn from such a wonderful teacher. But what about beyond that? What priorities are Ella Beth and Landon missing out on?

Of course, I do work for my church; I support everything that they do, and we are involved.

Just thinking.