Thursday, June 30, 2011

ER again tonight

Dave is taking Lily to the ER. She had a temp of 95.1 about two hours ago. She's been quite lethargic since she napped this afternoon and just does not want to wake up. She's not uncomfortable acting, just doesn't want to stay awake. Please say a prayer for our sweet little girl.

And by the way, I never said thank you for the prayers from earlier this week. Thank you. We appreciate every word said on Lily's behalf.

Wednesday, June 29, 2011

Updates and Reaching Out

We had the GI appointment, and still, no answers. Lily's feeling a whole lot better, though, and her fever is gone. After her appointment, Lily had another abdominal ultrasound and then an abdominal x-ray. Then she had some labwork done.

So it's not the gall stones. The sludge is still there, but there was no evidence of inflammation. There also was no evidence of an obstruction. There was, however, evidence of constipation. And that could actually cause the vomiting if it puts pressure on Lily's stomach. Then there's the issue of possible reflux. Apparently, reflux can cause this sinus stuff that we've been dealing with for far too long. (The only reason reflux never crossed my mind was because Lily never acts like she's in pain.)

The Rx? More medicine than I think I know what to do with for the next two weeks. If this doesn't clear up, then the doctor is going to order a scan that lets them see if her stomach is emptying in a timely manner. So, for the next two weeks, we are to give her Zantac for the reflux and some other antacid type medicine, Miralax for the constipation (beginning with a high dose for the next few days to basically clean her out and then lowering it to an easier amount), and an enema to speed the cleaning out along.

What's interesting is that I've been wondering all along if Lily's vomiting had anything to do with allergies, since it began after we moved here (adding carpet and an indoor dog with the move). But after hearing the doctor today and thinking about what all has happened in the past year, it dawned on me that maybe. . .hopefully. . .Lily's vomiting has been related to constipation. Before we moved here, Lily was nursed, and we had no trouble with constipation. Right after we moved, she got her g-tube and was put on formula. Her stools changed. If only this were the answer! (But how horrible to have taken so long to figure it out. Poor Lily!) We'll see what the next few weeks bring.

Last night, I received an email from Connie, Mallorie's mom (see Our Little Teapot under Angel Friends in the right bar) asking me to help with reaching out to a mother who just adopted two special needs children from Eastern Europe (remember my post about Shaun from Reese's Rainbow?).

Actually, I'm getting ahead of myself because when I went to this mother's blog, the first thing I saw was this quote and I'm still getting chills from reading it: I'd like to ask God why He lets poverty and injustice exist, why there are so many orphans and why He does nothing about it, but I am afraid He would ask me the same question.

I honestly froze! I don't know if she wrote this, but this thought, that God might just ask me why I let poverty and injustice and orphans exist blows my mind. How ashamed I would be! How ashamed I am.

So immediately, I was hooked. And Connie's plea to help her reach out causes me now to share this with you.

For time's sake (and it must be short because I'm terribly tired), I'll just share this blog that gives a brief explanation of the need:

And this blog, written by someone else who has gone through a similar experience, gives more specifics. This mother is spearheading the movement to help Catherine.

If you get a chance, take a look at these blogs. They are heartbreaking. They are compelling. They dare me to move.

Tuesday, June 28, 2011

No Camp Again

Strangely, we were hoping that Lily had a UTI, but the results came back today, and no UTI. I know that sounds good, but that also means what is it?! She's vomiting, running a low grade fever, having trouble getting comfortable, and occasionally, making a moaning/whining sound. Last night, when I went to her room to feed her, she had vomited in bed a greenish colored something that looked like it had strings of blood in it. Then, as I was feeding her in bed, she vomited. I got her out of bed and rocked her in the chair, and she just made that moaning/whining sound and tossed and turned. We tried feeding her again, and she vomited again. Dave went and got some Pedialyte but only gave her about 2 ounces. Luckily, she kept that down. A few hours later, he gave her another ounce, which she kept down.

Needless to say, we decided to keep her home from camp again today.

We've been slowing down the feeds and feeding less each time. I started out with 3 ounces this morning and gave her two more a few hours later. Again, she kept that down, but when Dave fed her, she vomited. I know she's lost a little weight; she just feels so. . .small. But her demeanor was a whole lot better today. It's so frustrating to not know what's going on.

Perhaps we should have taken her to the doctor today, but she has an appointment with a new doctor, the GI, tomorrow. We were mainly to talk about the gall stones she has, but I think I'm going to move the conversation quickly over to her vomiting, especially this new episode of it.

It worries me a little, fearing that maybe Lily might be going through what her friend, Rebekah, went through. (You can read her story if you look in the right side panel at Rebekah Faith--Redefining "Incompatible with Life"--June 2, 2011.) What if we're dealing with an obstruction of some sort? I don't want to over-diagnose her (like I have the knowledge to diagnose her anyway), but I also don't want to miss out on some type of hidden opportunity.

She's sleeping soundly right now. She seems fine when she sleeps, but the little thing didn't have much of a nap today. She's probably exhausted.

We'll see what tomorrow brings. It's very hard to get in to see this GI, so luckily, the appointment came at just the right time. But if you don't mind, would you please give a quick prayer for Lily?

Monday, June 27, 2011

Camp--Days Four and Five

On Thursday, the day we went to the climbing wall, Lily learned about pets. She read the book Clifford the Big Red Dog and painted red dogs. She got 15 individual standing minutes, with her counselor holding her, and 25 minutes in her stander. She made dog treats. She also had music therapy. She read a book called Cat's Colors and made a cat mask.

On Friday, the theme was Frogs and Turtles. Lily got to go swimming in the mini pool that they have at the camp. She had stander and standing minutes and made a jello snack with Swedish fish. She got to look at the K9 Care Unit from afar (since she's allergic to dogs) and got to jump around like a frog on the trampoline and read the book Jump, Frog, Jump. Again, Lily tried applesauce, but didn't really eat any. And the special treat for this day was that a pony visited the camp, and Lily got to pet it.

Lily ran a fever and didn't act like she felt well on Sunday. Dave took her to the emergency room, but they couldn't find anything wrong with her. They suspect a UTI, but Lily is so hard to cath that they tried bagging her, but didn't want Dave to have to stay there until she filled the bag, so they sent him home with bagging supplies and told him for us to bag her in the morning and send the specimen to the doctor. Needless to say, Lily didn't go to camp today--just in case the fever was virus related. Plus, she's just acting like she doesn't feel well. I don't think she would have had a good day at camp.

This week, the theme is holidays. Lily missed Easter-related activities today, but if we send her tomorrow, she'll be doing Valentine's Day-related activities. Hopefully, she'll feel better.

Friday, June 24, 2011

The Climbing Wall

Today I was. . .blessed. . .to be given the opportunity to witness one of the most phenomenal sites I've ever seen. Unfortunately, it did not involve Lily--she's too young--but that's ok. She'll have her chance soon enough.

Twenty-one students from Lily's camp went to the James Island County Park climbing wall today. Since Dave knows how to belay, he offered to go and help. Gabriel, Soleil, and I tagged along.

I tell you. . .to watch these special needs children with their climbing wall gear get lifted up at least 30 feet in the air was incredible. To hear the cheers of the counselors when each child "made it to the top" was inspiring. Every time I watched a child "scale" that wall, my eyes watered and I choked back a lump in my throat. What an emotionally charged time I had!

Even talking about it to Lily's counselor brought that same water and lump back.

I now have such a profound amount of respect for the climbing wall staff for saying yes in the first place, but for also treating these special needs children with such loving dignity. But a deeper amount goes out to these kids for their willingness to get out there, try something new, and reach new heights.

Wednesday, June 22, 2011

Camp--Days Two and Three

Lily's having a great time at camp!

Yesterday, she went horseback riding! I was envisioning Lily being held by two therapists, sitting straight up on the back of a horse. Instead, they placed her across the horse's back on her tummy. Not what I expected, but I'm not complaining. I'm glad Lily got the experience. She spent pretty much the whole day at the barn, so it wasn't a very busy day.

Today, Lily learned about insects. Again, they began the day with a morning walk. And, again, Lily spent some time in her stander. But she also had music therapy, read The Very Hungry Caterpillar, painted, decorated a flower pot, and participated in food tasting. (She tasted strawberries, pears, and apples, but Lisa, her camp counselor, said she only liked the apples.)

Both yesterday and today Lily vomited during lunch. Poor Lisa! But as fortune would have it, Lily's OT was visiting camp today and was there when it happened. She asked Lisa how fast she was feeding Lily. Lisa told her that she was giving Lily 3 ounces and then waiting 10 minutes and then giving her the rest. Brenda then asked her how quickly it was going, to which Lisa replied pretty quickly. Ah ha! We think (no, we hope!) we found the problem! It seems the slower we feed Lily, the better she holds it in. Not always so, but usually we find that's the case.

So two more good days at camp overall. Looking at all of the activities they are doing, I think I'm going to try to incorporate similar ones into Lily's day once camp is over. By then, Gabriel will be beginning school, so it'll be a little easier to do so. Besides, with Gabriel in school, I think I'm going to need a little more activity to keep me busy!

Monday, June 20, 2011

Camp Day One

Thank you, Robin W., for purchasing the afghan that Dave's mom crocheted!!! That purchase is definitely going to a good cause!

Lily's first day of camp went well. She almost lasted the whole time--falling asleep for a few minutes. But, hey, she fared better than the other two year old who was there. Lily kept her happy, positive self while the other little girl got a little attitude going.

This is what Lily's camp experience was like:

Every morning begins with a morning walk. Then they have group circle time. Today, they played a name game by throwing different balls to each other during group circle time. In their reading group, they read In the Nest and made bird nests and bird feeders and a penguin potato. They played Duck, Duck Goose and Parachute. There was music therapy. They read From Head to Toe and decorated peacocks and painted with feathers. Lily stood for an hour in her stander and had OT where Lily worked on pressing buttons. What a day!

And tomorrow? Lily will have a chance to ride a horse!

Sunday, June 19, 2011


I've been meaning to make this post for a while, but a few things have kept me back. One being that I don't especially like to fundraise.

We were really hoping that a grant we applied for would come through for Lily's camp; however, we found out the other day that they ran out of funds long before we applied. (We didn't know that we could apply before we even knew Lily was accepted into the camp.

Dave's mom crocheted this blanket and gave it to us to sell, proceeds going to Lily's camp funds. (BTW camp costs $600. So far, we have $250 applied to the balance. Luckily, they are willing to work with us on a payment plan.)

If you would like to help with Lily's camp funds by buying this blanket--sell price is $30 plus shipping (I will email you with the shipping cost.) Please send me an email at I will then contact you and also put your name in my next post to verify. Once I contact you AND you see your name in my post, please send a check in the mail.

I only have one blanket, so I can only sell this to the person who offers to buy it first.

The blanket is roughly 34 inches by 38 inches. My mother-in-law is very talented with crocheting, so I hope you will find it a beautiful gift for the baby in your life. I also hope knowing that your purchase helps a good cause makes it even better. I can't wait to post what Lily does each day at camp! I think you'll find it a spectacular "investment".

A Call for Prayers

The other day, I found out that Molly's (Lily's NICU nurse who has been so instrumental in Lily's life, even before she was born) 18 year old son, Tyler, was recently diagnosed with Stage 3b Hodgkins Lymphoma.

I am writing this as a call for prayers for Molly's son. Already, things are looking good, but we definitely don't want the prayers to end.

Tyler's attitude is incredible! Molly told me that he has been telling her since he was four years old that he wanted to be a doctor. After his diagnosis, he basically told her that this needed to happen to him to make him a better doctor.

Molly has had such a positive attitude for us that I can't help but feel the same way for Tyler.

I'm including this picture of Tyler and his father. Tyler had chemotherapy, and he and his dad both shaved their heads. Molly sent me this picture. It just says so much about this awesome family and the positive attitude they have!

So please, please pray for Tyler, his family, and the doctors involved in his care.

Also, little Mikayla (see Lily's Friends to the right) is in the hospital with bronchial pneumonia. Please pray for this sweet little girl that she may fight this illness and get home soon.

And while you're at it. . .Lily's friend Rebekah is still in the hospital. She had a bowel obstruction that was caused by a Meckel diverticulum and had surgery for that. Rebekah is getting slow feeds, and the doctors want her to be vomit free before she goes home. I know her family is ready for her to be home! (If you want the whole story, see Rebekah Faith under Lily's Friends.)

Thank you for the time you take in your prayers for these families. I know they all appreciate every single prayer that goes up for their precious children.

Tuesday, June 14, 2011

Tennessee Revisited

Two years ago, when Lily was about six weeks old, we took a trip to Tennessee to Sevierville and the Smokey Mountain National Park. I can't quite explain what exactly it was, but something about that trip was magical for Lily. Maybe it was the fresh mountain air. Maybe it was the fact that here we were with a six week old child who had a death sentence on her when we probably should have been at home keeping her shielded from the world.

We didn't let that stop us.

We climbed a pretty rigorous trail; we descended a rather steep ledge to get to a smoothly flowing river and sunbathed on large rocks; we walked a part of the Appalachian Trail; we straddled two states at one time.

We didn't let Trisomy 18 stop us.

Yes, there was something magical about that trip. It was as if we were taking on the world. . .and winning.

And once again, we took that trip to Tennessee. And again, it was as if something magical was happening. We weren't as bold this time around--it's a bit harder when you have three children under the age of four--, but we did take a path up to a waterfall, and we shade-bathed by a waterhole. We saw two bears and a stampede (the Dixie one, that is), and Lily had fun exploring what her legs can do in the kiddie pool. All five days with no vomiting (until we got back into South Carolina, and she vomited in McDonald's right after we fed her).

Even this time, we didn't let Trisomy 18 stop us. It was as if we were taking on the world. . .and winning.

Thursday, June 2, 2011

Pictures of Alice

I have kept every email Sara and I have exchanged, and with those emails, I have pictures of Alice. Sara gave me permission tonight to share pictures of Alice with you. From one of the first pictures I received of her, to one of the last, I share with you the little girl I grew to love since my first postings of Lily.
And by the way, Sara posted a comment on my previous post to all of you who expressed your heartfelt sympathies. Thank you for being in prayer for her, especially tomorrow.