A Daily Dose of Grace

Label Confusion: Excuse Me, What's In There?

2012-02-09T14:23:00.000-08:00

As promised in a previous post, I am going to begin posting in a series of sorts about Nutrition and Health: One Bite At A Time. I'm starting with our family's journey. Our family has made some major changes in how we eat and how we live since our daughter was diagnosed with medulloblastoma. Some may call it paranoia. I like to call it simplifying. The biggest change we've made is in our diet. We are "real foodies" now.

So, what is real food? Well, we didn't eat play food before, but I suppose some of it might as well have been. Go ahead and look up Dimethylpolysiloxane. You'll find it's an ingredient in chicken nuggets AND silly putty.

Real food for us means paying close attention to what is in our food and what is not in our food.

Reading labels is a great place to start. As a teenager, I discovered that both aspartame and monosodium glutamate (MSG) gave me horrible migraines. This also happens with my mother and sister. Growing up, I just learned to avoid both of those whenever I found them on labels. I also began to learn about the dozens upon dozens of pseudonyms for MSG. And just because the local take out says "No added MSG" that doesn't mean there's not already MSG in their pre-made sauces. If it's in a box or can or bottle, there's a high chance that it has MSG hidden in it. In recent years, I've learned that both Aspartame and MSG have been linked to a lot worse things than migraines.

As nasty as those two chemicals are, there are lots of other scary things lurking in our boxes and in our BPA-lined cans. Some ingredients are more easy to identify than others. Growing up avoiding certain ingredients in order to not be stuck in bed all day with all the curtains drawn, prompted me to be a better label reader. Though I was not always consistent with this, the more I looked into nutrition and our health, the more I began to be bothered by lengthy lists of unpronounceable additives. Just because some celebrity endorses a new trendy magic formula for weight loss, doesn't mean we shouldn't do our own research. I'm looking at you, artificial sweeteners!

For our family it came down to this: If we don't understand what the ingredient is or why it's actually necessary to be in there, then why are we eating it? We shouldn't need a background in Latin and biochemistry to be able to know what we're feeding ourselves and our children, right?

Now, all this label talk hasn't even touched the dangers of GMO foods, rancid vegetable oils and refined ingredients our bodies neither need nor want. Remember, we're taking this whole thing one bite at time. :)

♥
Rebecca

Coconut Oil and Pink Eye

2012-02-06T18:26:00.000-08:00

This past week our family got hit with pink eye (conjunctivitis). I don't even remember the last time any of us had pink eye. Aside from some stuffy noses and the occasional brain tumor, we've kept relatively healthy around here. But, in the past few weeks we've been slammed with some stubborn viruses that pop up with a fever and then one with pink eye. (Thank you, Jesus, for sparing us from the pukies or anything bathroom related.)

Knowing the kiddos were bouncing around stuffy noses, coughs, and fevers, we figured this virus had to work itself out. But, if you've ever had pink eye you know that gritty feeling can be pretty unbearable. So, I thought of our trusted organic coconut oil. Why organic coconut oil? Organic coconut oil boasts antiviral, antibacterial, antimicrobial, antifungal, and pretty much antizombieapocalyptic properties. One reason is because of this beautiful thing called lauric acid. Lauric acid is a medium-chain fatty acid/triglyceride with antiviral properties that is found in just a few things besides coconut oil. One of those things is breast milk.

The lauric acid in coconut oil is used by the body to make the same disease-fighting fatty acid derivative monolaurin that babies make from the lauric acid they get from their mother's milk. The monoglyceride monolaurin is the substance that keeps infants from getting viral or bacterial or protozoal infections. Until just recently, this important benefit has been largely overlooked by the medical and nutrition community. 1

Pretty interesting, right? So, here's what I did. I took a small spoonful of coconut oil and placed it in a small bowl. (It's consistency is based on the room temperature, so it's solid these days.) Then I placed the smaller bowl into a larger bowl filled with hot water. I chose not to nuke any of the coconut oil's good properties. When it was melted, I took an infant medicine dropper and used it to place two drops in each eye. My oldest said his eye felt fine just a few moments later. I continued with the drops and he experienced no more discomfort the rest of the time. His eyes cleared up and the goop didn't stick around past those first few applications. It wasn't an instant cure, but the comfort he experienced was outstanding. He was so surprised by the difference that he kept remarking, "My eye just feels like a normal eye now!" For our younger lot, I applied some coconut oil to a tissue and wiped it all along the eyelid, eyelashes, and into the corners of the eye. If you're going to do this, obviously use a different tissue or swab for each eye so as not to spread the infection. I even gave it to those who didn't yet have pink eye (after a day or two where I hadn't thought of that). Our sweet little princess with a trashed immune system didn't even get it!

We are big fans of coconut oil around here. We cook and bake with it. We use it on eczema, mosquito bites, and as a light sunscreen. (But, we like Vitamin D, so we don't want to completely block out our exposure to it!) We use it as lotion, moisturizer, hair product, and diaper rash ointment. So, it's always fun to me when I find new uses for it. My husband laughs at me that I seem to always be enthusiastically shouting, "I bet coconut oil would work on that!" I do think he has to give me some credit for this one, though. :)

♥
Rebecca

Sources:
A New Look at Coconut Oil by Mary G. Enig, PhD

Virgin Coconut Oil and Viruses

Nutrition & Health: One Bite At A Time

2012-02-05T10:22:00.000-08:00

Since our daughter was diagnosed with desmoplastic medulloblastoma, our family has made many changes in how we view nutrition and health. We understand that these changes don't guarantee anything. We don't live in or want to live in fear. God is perfectly in control of our health, of our daughter's health, and of all our futures. God's sovereignty is such that nothing we do can alter his ultimate will. We could make a thousand changes to our home environment and our pantry, and if it is his will for our daughter's cancer to return, then it will. We trust him regardless. So, please don't misunderstand our efforts here. We have no plans to place health on the throne where only Jesus should sit. We are simply attempting to use wisdom in our choices. And whatever your particular beliefs may be on how strictly to interpret 1 Corinthians 6:19-20, our family is operating under the assumption that we should use the knowledge that has been granted in a way that honors God.

And there is a lot of information available, isn't there? It's overwhelming how it all seems to contradict. There are people with very strong opinions out there about which way of eating is ideal. It's enough to make you give up completely and just eat whatever you want.

That is where the "one bite at a time" comes in to play. I have been researching like a maniac, and I just need to attack my research one area at a time. Since I'm currently not tackling my studies through coursework complete with assignments and learning assessments, I've decided to self assess here at the blog. Over the next several months and beyond - interspersed with other blog entries - I'm going to be writing about what I have discovered and how I've applied changes to our family's way of doing things. Sometimes it will be through articles. Sometimes through books. Sometimes through other blogs. We'll just see where it goes. As I continue my research, I will be blogging what I learn. Consider me your unofficial health coach. If you'll have me. :)

Hi, there. Thanks for coming by for a visit! I would love to hear from you. Go ahead and leave a question or comment. To keep up with future posts, please subscribe by email. You can also find me on Twitter and Facebook.

♥
Rebecca

Homeschooling: Feeling Refreshed

2012-02-03T12:20:00.000-08:00

I have a confession to make: Sometimes I really don't like homeschooling. Okay, that's not entirely accurate. I love homeschooling. I love so many things about it. Let me count (some of) the ways. . .

1. I love being home. I do. I just like being in my home. In the same way that I would prefer cuddling on the couch with a rental vs. a date night at the movies. I am just a homebody.

2. I love watching my children get something for the first time. I love that glimmer in their eye when something becomes understood that previously wasn't. I have always loved learning and I want my kids to love it, too.

3. I love teaching: Bible study, ESL, how to choose healthier foods, how to make homemade cleaners. . .I just love teaching. And I get such great joy from teaching my own children.

Okay, it's not so much homeschooling that I don't like. The parts that get tricky for me are really the parenting parts. You know that thing where you can't separate homeschooling from parenting? Yeah, ~~some~~ most days I really hate that. There are those pesky discipline issues. And by that, I mean the fact that I seem to have so little of it myself. Inconsistency = lack of discipline in my personality. That shows up in all sorts of ways, but it gets magnified when I find myself frustrated with expectations I have for how homeschooling should go. And that's MY problem, not my kiddos'.

But, sometimes, I get little splashes of refreshment.

Sometimes, a newly turned 4 year old begs to do school and is thrilled when it begins for him. This is the same 4 year old who some people tried to push me into NOT homeschooling because of his hypotonia and developmental delays. Seeing him light up like this allows me to see homeschooling with fresh eyes. It allows me to see parenting with fresh eyes.

Homeschooling is rough. So is parenting. So is marriage. But, all of them are worth it. Every struggle. Every infuriating moment where I mentally throw my hands in the air. It is worth it.

♥
Rebecca

P.S. Liam is playing with these Baby Bear Counters (102 ct.) using a printable I made. You can find the printable at Bears Counting Card.

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Disclosure: http://cmp.ly/5/

The Praetorian Project: Where Church Planting and the Marine Corps Meet

2012-01-19T18:13:00.000-08:00

Even before my husband and I were married, we had many discussions about whether or not he would stay in the Marine Corps. We talked about moving around as a family. We discussed deployment and what that would entail. More than anything we talked about and wondered about how God would want us to serve him as we planned our future together. Everything seemed to be pointing us toward leaving the Marine Corps when his time in 2003 was up. We had lived in an area of Northern Virginia that just seemed to fit us. We didn't feel God wanted us to leave just yet.

It took us a little while to discover a church we loved and by the time we did, I was pregnant with our first child. Shortly after moving forward with membership at this church, we learned that it was starting a new church in the same city where we had just bought a townhouse. More wondering began. Are we supposed to be at the church we just joined or not? Did God bring us to this area and this church to get involved in this new church plant?

Neither of us knew much about church planting. My husband's background as a missionary's kid gave him a little bit of knowledge about it. He would say "very little". I was completely lost. Why are you going to start a new church practically down the road from your "mother" church? Isn't that like when a McDonald's pops up across from a Burger King? Do they get competitive? Like, "Don't you steal my members. I had them first!" See, I knew nothing about it. I didn't know it was about making disciples and then sending them out to make disciples. I didn't know it so closely fulfilled the very command of Christ.

I decided to introduce myself to the pastor and I believe I offered for their canvasing group to stop by for something to drink. It was the lamest of offers and I immediately felt foolish for making it. I was nervous and confused and I just wanted God to put up one of those elusive neon arrows. A short while after that, Andy and I attended a "Boot Camp" for the church plant. By the time the presentation was over, we were offering our home to host one of its first small groups.

That was several years (and kids) ago. Our family has played a role in additional church plants generated by that first church plant. Yes, a church plant that plants churches. Before it even had a building to meet in, it was starting another church. And it hasn't stopped.

And now here we are in 2012. Pillar Church, since its inception, has been serving in a community that is at the Crossroads of the Marine Corps, in Quantico, VA. And because we are just plain crazy about the gospel of Jesus Christ and the hope Christ brings, we want to start new churches at Marine Corps bases around the world. So, I excitedly introduce you to, The Praetorian Project.

The Praetorian Project from Pillar Church on Vimeo.

When we were in service listening to the pastor introduce the project, I just began crying. I was so honored to be a part of this fantastic plan. I love Jesus. I love the Marine Corps. I want to serve them both.

And, I am so humbled that God's not quite done teaching me about planting a church.

Grace Upon Grace: Eliana's 9 month post-chemo MRI

2011-12-12T09:33:00.000-08:00

This week we had Eliana's 9 month MRI. Following her surgery and chemo for desmoplastic medulloblastoma, we have moved into a period of monitoring her with an MRI every 3 months. We are alternating between a complete brain and spine MRI and just a brain MRI. This time it was just her brain. We had another clean MRI with another fabulous check-up! We are so thankful for God's continued provision.

At our appointment following the MRI, our oncologist pulled up the MRI pictures on the computer and showed our older boys all about the brain.

And with all of the waiting, we were able to sneak in a little school. Gotta get it done how you can! :)

Eliana is doing beautifully. It has been almost 15 months since Eliana was diagnosed with desmoplastic medulloblastoma. Last Christmas, we were in the hospital due to a fever and low ANC count. We had some fabulous friends come and visit us to spend some of their holiday with us. It was a blessing in the midst of a lot of worry and stress.

This year, we are hosting Christmas in our new home with my family and my in-laws coming into own. We're so thankful for how far God has brought us this year!

Hypotonia: In His Own Words (Well, Sort Of)

2011-11-10T16:47:00.001-08:00

Sometimes I try to imagine what must go through Liam's head when he is sitting quietly watching his brothers run around playing. He has always spent so much time sort of introspectively gazing off. His developmental delay has really allowed him to take everything in that's happening around him, perhaps more so than if he could have been directly engaged with it. This observational time for him has really started to come out in the hilarious things he says lately - perfectly in context and perfectly matched to his growing personality.

As a preschooler who cannot yet independently walk due to hypotonia, Liam certainly doesn't show any signs of being discouraged. I can only project these things. I don't really know if he cares that he can't walk (Although, with two steps at a time on his own and a ton of assisted walking he's moving along great!). I imagine that part of the grace God has extended him is in the formation of his tender personality. He is patient and funny. He can be crazy and loud. He is a sweetheart who will talk to anyone and loves with his whole heart.

So, here I am, pretending what must go through his mind as he thinks about his developmental progress. Forgive me for my silly idea (and for Eliana shaking my arm and calling for me in my ear as I tried to film) but I couldn't help but share my sweet boy with you. After I recorded this, Liam asked me to play it over and over again for him to see.

We are so proud of how far Liam has come. We are grateful to the One who is slowly unveiling each milestone as a precious gift to us.

Grace in the Face of Addiction

2011-11-04T20:41:00.000-07:00

Last week, my oldest brother died of a drug overdose. It was a nightmare come true for those who loved him. The one thing we feared for so many years was exactly what came to pass. There is a cruel expectedness in that which makes my stomach turn if I think about it too long.

In my search for words to say at his funeral yesterday, I saw many things in such a strange light. I was frustrated that my memories of a brother ten years my senior are so scattered because he was in and out of our lives. I was discouraged that it was so hard to identify things as my memories or just stories I've heard a hundred times. I was relieved that my mother no longer need worry about him. I was overjoyed to find a prayer journal of his and read entries where he praised his Savior even in the midst of this war raging inside him. I wanted the Lord to give me words that would somehow remove the shame of the overdose, the shame of the addiction. I wanted words that would bring my mother comfort. And I wanted words that would bring my Jesus glory.

My family has asked me not to share some things I spoke of yesterday, but I will share what meant the most for me to be able to say in hopes that perhaps it might touch someone reading this.

My brother loved Jesus. He loved God’s word and he valued it. This week I had the opportunity to look through some of his prayer journals. And there was a real sense of love and awe written on those pages. For that, I am thankful.

I don’t pretend to understand what addiction is like – how controlling it is or how strong it feels. I do believe that through his addiction my brother experienced a very tangible example of what Paul says in Romans 7:19, “For I do not do the good I want, but the evil I do not want is what I keep on doing.” We all have our own ways of how we play out the sin in our hearts. Some sins are just less obvious as they carve out their path of destructiveness.

God was so very patient with him. He had many close calls – some of you in this room have witnessed them. I don’t know why God protected him all of those times. But in his great sovereignty, God allowed my brother’s choices to bring him down this last road. My prayer is that we might reconsider the limits we ourselves have placed on grace and forgiveness, remember the One who created them, and see that he gave them no limits and no conditions.

. . . I wish I could have convinced him that the same power that brought him life and salvation, could bring a physical deliverance for him.

And so, now we are here. And he IS delivered. From this flesh that controlled him so. From the hurt he carried in his heart. From his constant struggle between doing what he knew to be right and being pulled along by this craving that demanded everything from him.

He is at peace. Be at peace in the same arms that hold him now.

Medulloblastoma: Reminders of Grace

2011-10-01T14:09:00.000-07:00

The above picture pains me to look at, so much so that when I first looked at it for this post, tears immediately came. This picture was taken with my phone, October 1, 2010, moments after we were allowed to see Eliana following her tumor resection for desmoplastic medulloblastoma. I caught her in the middle of fussing "No!" at the nurses, who wouldn't leave her alone. Her voice was raspy and her breathing was labored. She had been under sedation for such a long time (with what we would find out later was probably a tube too large for her). She was in pain, tired, and frustrated.

And I couldn't hold her. (Yeah, I probably needed it more than she did.)

I don't remember how long it was that they made us wait to hold her. It felt like forever. She still had her external ventricular drain (EVD) and we had to keep her head level at all times. It made holding her a huge ordeal even before the surgery, since her drain was placed the Monday before. We had to have a nurse come help us adjust properly in a chair before we could hold her.

And when we finally did, it was peace.

It was painfully precious.

It was another reminder of God's grace. Because, let's be honest, she might not have come back from that OR. And I heard that in my head at least a thousand times over that long day of surgery.

And so these are painful reminders of grace and precious reminders of grace. But they are reminders of GRACE. That cheesy quote about putting up with the rain to get to the rainbow can't even touch grace. It is always there - in the rain and in the rainbow. It is pure, complete, more-than-enough-for-you grace. It is offered to you. . .not just to snatch you from the fires of hell. . .not just to forgive you for your sins, or to hold you when you're broken. It is offered to you, to overflow in your heart until you can't help but pour it out on those around you. I pray that you can see Jesus in the grace-filled moments of our family's life. That's my true desire.

God has brought us a long way in this year. We've had clean MRIs and great news at Eliana's check-ups. Liam and Eliana have both made great steps in language and gross motor development. Jonathan and Caleb are healthy, happy and are loving being crazy boys. Andy's job is going beautifully and he's enrolled in online courses pursuing a degree he's wanted for years. We are homeschooling like normal again and it feels wonderful! God's even given us a great new house in the woods that seems like it was made just for our family. We are very thankful for this year. We've come so far, in many ways. I am so confident of who is holding us on this journey and in his ability to continue to do so. I am eager to see where this next year will take us.

Laughter Fills This Home: Recent Wireisms

2011-09-05T18:01:00.000-07:00

Liam calls the vacuum cleaner "ice pack" for some reason.

Liam passed gas, and said, "Hey, my diaper is burping."

Me: Why are you so big, Liam?
Liam: Because
Me: Did God make you so big?
Liam: No! Thunder made me so big!

Jonathan: I think I know why God never rests. He watches us every morning and every night.

Liam and Andy were wrestling and playing together.
Liam: Daddy, you're so cute! Um. . . you're so cute, too, Mommy.

Jonathan lets out a large belch.
Caleb: Jonathan, that was like a burp from a movie!

Eliana: Where's Daddy?
Me: I don't know.
Eliana: Daddy yucky. Ew, yucky.
Me: What? Why is Daddy yucky.
Eliana: Nuppin! (Nothing)

Liam is our thumb sucker.
Me: Liam, no thumb. You're a big boy. Thumbs are for babies.
He laughed, took his thumb out, and pretended to shove his thumb in the mouth of Eliana's baby doll.

Jonathan: Why does there have to be mean words? That's weird that some people choose to use words that they know are mean.

I was having a sneezing fit.
Liam:Ugh! Quit sneezing at me!

We were starting to get the kids ready for bed.
Me: Andy, am I giving Eliana a bath?
Liam: Yes, you may. You may give ME a bath.

I came in to see the boys first thing in the morning.
Caleb: I was starving to see you, Mommy!

And For This Life You Have Granted Me: I Thank You, Jesus.

2011-09-02T12:52:00.000-07:00

God knew EXACTLY what he was doing when he chose to give our family a developmentally delayed child and then soon after, his sister, who would have her own delays from the result of a brain tumor (and its resection). They are such an encouragement to each other. Eliana has begun to walk 4-5 steps across the room - from one piece of furniture to a toy and back or from the TV stand to our waiting arms. Liam has started with his new braces (AFOs) today. They have been feeding off each other the past couple of days and challenging each other in ways that make it truly difficult not to cry.

Thank you, Jesus, for these amazing little ones. May both their struggles and their successes bring you honor always.

Next Tuesday (the 6th), we have Eliana's next MRI. This time it will be a complete brain and spine MRI. We are fairly sure that the results will be wonderful. But, we are beyond confident that no matter what they are (or continue to be), Eliana is right where God wants her to be.

Desperate Times Call For Chicken Nuggets

2011-08-21T18:39:00.000-07:00

It seems I draft most of my post ideas while standing over the kitchen stove. Ideas come to me while I’m mixing up this or measuring out that.

Tonight we had chicken nuggets. Again.

My husband lovingly teases me about my obsession with making things that I KNOW Eliana will eat. Yes, I have been known to give her almond butter and jelly sandwiches for two meals in one day. Chemo really messed her appetite up. And, although she hasn’t had any new chemo administered in months, she is still a picky eater and often will outright refuse meals more than once in a day.You wouldn’t know this by the weight she’s put on and the strength she’s gained. Thank you, full-fat raw milk.

Eliana will eat chicken nuggets. Now, this is a real problem food for several reasons. Those several reasons our found in the ingredient list. I don’t really want ANY of my children eating chicken “nuggets”. We have been eating rather healthy, but when errands are being run and time is tight, we have occasionally been hitting fast food joints and I know Eliana will readily consume those little golden junk nuggets.

But, now we have discovered yummy alternatives. We have played around with a few recipes here and there. But, tonight, we found a successful for one for Eliana.

Here are some that we have used:

Homemade Chicken Nuggets

Chic-Fil-A Inspired ChickenNuggets

(For that second recipe, we alter things a bit. The recipe calls for powdered sugar and we use homemade powdered sugar. We take organic sugar and run it through the blender a bit. We also do NOT recommend using 1 Tablespoon of salt. It was way too much.)

Those recipes were good, but I wanted to keep playing around a bit, mainly because they weren't capturing Eliana's interest. I checked out my trusty Betty Crocker Cookbook and found a recipe for Oven Fried Chicken and, thinking about the recipes I linked above, I got to playing around a bit. I used a bit from each recipe. . .and, we had success! Everyone loved them and Eliana kept asking for more.

Oven Fried Chicken Nuggets

1 1/2 cups of flour (We use King Arthur's Whole Wheat White and are currently looking for an organic alternative)
1 lb of cage-free organic chicken thighs, chopped into nugget size pieces or strips

1/2 teaspoon organic paprika

1/2 teaspoon organic seasoned salt

1/2 teaspoon organic black pepper

1/2 teaspoon organic garlic powder

2 1/2 tablespoons organic powdered sugar

coconut oil

1 egg

1 cup of milk

2 Tb melted butter

1. Preheat oven to 375 and lightly coat a baking dish with coconut oil. (I used my Pampered Chef medium bar pan.)

2. Wisk milk and egg together. Place chicken in a shallow dish with this mixture.

3. Mix flour, sugar and seasonings together in a separate dish.

4. Coat pieces of chicken with the flour mixture and place on the baking dish.

5. Drizzle chicken with the melted butter and place in the oven. Cook for about 30 minutes.

Eliana ate and ate and ate. It was wonderful.

Making plans!

2011-08-07T20:58:00.000-07:00

I have been pretty quiet around here, because we've been a little busy house hunting. I promise when things are settled I will get back to posting about developmental delays and homemaking and all of that fun stuff! Lord-willing, in a few weeks we will be moving into our new home!

We are so excited to soon have a little over an acre for our sweet babies to enjoy! I am dreaming about a garden and sitting on that screened in porch watching the stars and taking nature walks in our own private woods. Ha ha. . .I'm a little excited.

And, we are only moving about 10 miles away!

In other not so fun news, we are about a month away from Eliana's next scan (September 6th). This will be a brain and spine MRI. Praying for good results. Praying for good distractions from it as we draw closer to moving.

Thanks for stopping by! Join us in celebrating this awesome gift of a home!

Two Week Rotating Menu

2011-07-29T07:54:00.000-07:00

Source: placetobloom.blogspot.com via Sabrina on Pinterest

Here's what I have been working on lately in our attempts to get more organized in the kitchen (and the grocery store!)

Two Week Rotating Menu

After struggling for a while with trying to organize a menu, I decided to just focus on what we end up actually eating versus trying new fancy recipes all the time. I asked my husband if he minds eating the same things over and over again and his response was a confused look and the question, "Why would I mind always eating what I like?" Yeah, he got some bonus points with that response.

We really decided that simplicity is best. We know the kids are getting good nutrition and we mix up the veggies as we can. We're happy with simple. We can even streamline things more by preparing double batches of some of these meals and then freezing portions for another meal.

For lunches, we usually have a salad along with whatever the meal is. For dinners, we are typically serving two veggies with the meal. Usually we do a salad of different greens and another vegetable. We have "leftovers" written quite a bit, because cooking this many different meals guarantees leftovers, even if a meal is a hodge podge of different leftovers. We don't like to throw things out. :)

You can find recipes for some of these on our Master Recipe List page. Otherwise, I feel they are kind of self-explanatory basic recipes.

Week One

Sunday:
B-Egg & Bacon Muffin or French Toast Sticks
L –Leftovers or Sandwiches
D- Chicken & Dumplings

Monday:
B -Granola
L – Chicken Nuggets
D – Taco Skillet

Tuesday
B - Smoothies
L - Egg salad sandwiches
D – Baked Chicken

Wednesday
B -Baked Oatmeal
Bake some Whole Wheat Bread
L –Leftovers or Sandwiches
D- Baked Spaghetti

Thursday
B -Leftover Granola or Leftover Oatmeal
L – Chicken Nuggets
D - Chili

Friday
B- Smoothies
L –Leftovers or Sandwiches
D- Upside Down Pizza

Saturday
B -Pancakes or Eggs, & Bacon/Sausage
Bake some Whole Wheat Bread
L –Leftovers or Sandwiches
D -Burgers w/ Buns

Week Two

Sunday
B -Pancake & Sausage Muffin or French Toast Sticks
L –Leftovers or Sandwiches
D – Garden Chowder

Monday
B - Granola
L – Chicken Nuggets
D – Taco Mac

Tuesday
B - Smoothies
L - Egg salad sandwiches
D- Balsamic Honey Chicken

Wednesday
B -Baked Oatmeal
Bake some Whole Wheat Bread
L –Leftovers or Sandwiches
D- Meatloaf

Thursday
B - Leftover Granola or Leftover Oatmeal
L – Chicken Nuggets
D- Beef Stew

Friday
B- Smoothies
L –Leftovers or Sandwiches
D- Upside Down Pizza

Saturday
B -Pancakes or Eggs, & Bacon/Sausage
Bake some Whole Wheat Bread
L –Leftovers or Sandwiches
D -Burgers w/ Buns

Next up, moving into a Master Grocery List.

Do you use a rotating menu? How do you plan meals? I know meal planning can seem overwhelming and time-consuming, but the amount of time and money you save is always worth it!

Our Master Recipe List

2011-07-22T15:19:00.000-07:00

Lately, several people have asked me about the dietary changes our family has been making lately. Add to that, questions I often receive about meal planning and I decided to start adding ideas to the blog!

Snacks

You'll notice that we don't really have a lot of snack recipes. That is because we really try to keep fresh organic veggies and raw cheese in the house for snacks. Yogurt, fresh or frozen fruit and granola are favorites as well.

Whole Wheat Graham Crackers: Let me just say these are dangerous to have in our house. So good! I have played around with these a lot and made them thicker bars, longer for Liam to chew better. . .plopped them down as cookies, etc. To make the chocolate version, I use unsweetened cocoa and found that adding 1/4 cup of cocoa worked better for us.

Crispy Cheese Crackers

Breads

100% Whole Wheat Pain de Mie : This is our sandwich bread. We love it!

Hamburger Buns or another style, Whole Wheat Hamburger Buns: One of those ridiculously easy recipes that I feel silly for not having started doing much sooner.

Oatmeal Wheat Bread

Sourdough Sandwich Bread

Breakfasts

We eat a ton of eggs - Omelettes, Scrambled, Casserole, Egg "Muffins" - w/ veggies,cheese and sausage/bacon/pork roll.

We love smoothies (sneaking in plenty of greens when we can). We use raw milk, fresh yogurt, organic fruits & greens, occasional honey to taste. We don't go by a recipe really, just throw in whatever sounds good. :)

Bacon, Cheese, & Egg Biscuit Cups

Peanut Butter Granola: We use almond butter because of allergies. We also replace the butter with coconut oil to allow the granola to last longer. We do NOT typically replace butter in recipes. Butter is good!

Apple-Cinnamon Baked Oatmeal

Amish Baked Oatmeal

Applesauce Bread

Sourdough Muffins: Muffins are great for sneaking in all kinds of goodies.

Scones : These are great for playing around with different fruits in place of chocolate chips - cinnamon & apple, blueberry, raspberry, whatever you can think of. . .

Sourdough Pancakes

Toddler French Toast Sticks

Lunches/Dinners

For lunches, we avoid store-bought lunchmeats (processed meat full of nitrites and other nasty things) and instead purchase uncured bologna and pork loin roll from our co-op. We still do PB&J (Accept it is Sunbutter or Almond Butter and organic jam). And we always try to have leftovers of some sort.

Our Standbys

Our family loves standards like Spaghetti, Shepherd's Pie, Chili, Meatloaf, Baked Chicken. . .all of which we try to prepare using the standards listed above.

We love making a simple Taco Skillet where I throw together rice, black beans, ground beef, tomatoes, green peppers, onions, chili powder (or organic salsa if it's on hand).

Another favorite, "Lasketti or Spasagna", as one of my adorable youth girls called it. Organic, whole wheat pasta, spaghetti sauce mixed with cream cheese and sprinkled with a favorite Italian cheese and then baked at 350 until the cheese melts and slightly browns.

Chicken Favorites

Homemade Chicken Nuggets

Balsamic Honey Chicken

Chicken & Dumplings

Whole Chicken Crock Pot Recipe

Stretching A Chicken!

Italian/Pasta Favorites

Marinara Sauce

Upside Down Pizza

Cheeseburger Mac : Our family also really likes to add salsa to this for a Taco Mac-version

Garlic Chicken Pasta

Soups/Stews

Chicken Stock

Beef Stock

Cream of X Soup

Beef Stew

Garden Chowder

Desserts

Just like the snacks above, we don't do a lot of prepared desserts around here. The graham crackers in our snacks section make great cookies. :)

"Perfectly Chocolate" Chocolate Cake : This is our go-to birthday cake! I sub coconut oil for the vegetable oil and make our own powdered sugar out of organic evaporated cane sugar

Cream Cheese Frosting

Creamy Pudding

Coming up, I'll be posting some sample weekly menus and how they play into what I am working on for our Master Grocery List. Hope you enjoy!

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For His Glory,

Rebecca

Romancing My Daughter's Heart

2011-07-17T16:26:00.000-07:00

Here is my daughter’s first crush. At least that’s what I will probably tell her when she’s older. I mean, at only 2 years old, she certainly seems to be in love with him. This is definitely not something we are trying to encourage. She is just sort of drawn to him. I watch her fawn all over her Woody toy (stolen from her brother). She HAS to have him with her when she goes to sleep. She always wants to “watch Woody”. She loves him. The other day she left him at the church nursery and cried when she couldn’t have him for a nap. Andy drove over to the church and found him, bringing him home to a very grateful toddler.

He’s not a bad first crush, really. He’s very loyal, not afraid to risk for his friends. He’s got a good sense of humor. He’s got old-fashioned values. He’s a cowboy. That’s kind of awesome, right? He’s pretty handsome, too. Okay, WHERE am I going with this?

In all seriousness, I think about my daughter’s future husband quite a bit. I don’t even know if God desires for her to be married, but if I’m being honest, I certainly hope so. I think about what foundation we are laying for her now. And, yes, I think about that for my boys as well. . .but that’s for another post.

Eliana loves affection. She wants to cuddle and hug repeatedly. She will smother you in kisses if you let her. And, the mutual affection she shares with her father brings tears to my eyes. He is modeling the love of the Father for her in a way that I believe will stay with her for a lifetime. She will know the Father’s love because of the love her father models for her now and in the years to come. She will learn what true affection is in a way that will, Lord-willing, help her navigate through empty promises of boys who do not value her the way Jesus does.

I am grateful for the relationship she is developing with her father - one that is free of harsh words and rage-fueled fists. She will never have a cruelly delivered reason to doubt his love for her mother, for her, or for Jesus. Yes, she will certainly see Andy stumble. She will learn that her father is far from perfect, but she will witness grace inside her home. And, Lord-willing, that grace will forever change her heart.

And I think about these things as I think about Eliana’s future “love life”, because I want her love life to be about Jesus. Whether she is single all of her days, or married before her mother was. . .whatever her future holds, I want her heart to long for Jesus. I want her to desire to spend every moment in his presence. I want her to be impatient to meet with him again. I want her to know what it is to climb into his lap and let him just hold her. I want her to wish to see Jesus wherever she goes. I want her to see him as her Prince, because he is truly her Redeemer.

I pray that God would romance my daughter’s heart. I want him to draw her to himself in the gentle, loving way that he has countless of young ladies. The way that he did for me.

So, it’s fun to joke about Eliana’s crush on a cowboy puppet. It’s beautiful to watch her growing love for her Daddy. It’s impossible to not relate that relationship to the one I pray develops between her and Jesus. And all of these things make me think about what God may have in store for her.

For now, I will do what I can to model that love for her. With the guidance of the Holy Spirit, I will let her see my longing for the presence of Jesus. He is my Prince, my Redeemer. And she needs to be shown that, told that, and loved like I mean that. As we look to raise our daughter in a way that emphasizes Christ’s desire to be her knight in shining armor (or, ya know, her cowboy), I pray that Eliana will see that her mother will forever long to climb into the Father’s lap and let him just hold her.

~~~~

For His Glory,

Rebecca

Farmer's Market Failure

2011-07-16T17:29:00.000-07:00

Source: tarteletteblog.com via Rebecca on Pinterest

Today, I felt like a “real food” snob for the first time. I wasn’t even trying to be one.

I attempted a local farmer’s market for the first time (albeit, I arrived when there was just one group left for the day). And I was so excited about it. I even shared with the people behind the tables that this was my first time there. They were very polite and welcoming as they asked me what I was looking for. I scanned the tables of tomatoes, zucchini, peaches and other yummy treasures.

Then, I asked the question I had been practicing in my head for a while. It didn’t quite come out as confident as I had rehearsed. “So, what do you all do about. . .spraying?” I smiled very sweetly and practically whispered “spraying” like it was a bad word.

Oops.

Immediate response(s) came. And gone was the polite man who was just asking me for what I needed.

“Of course we spray. You have to spray. Have you ever grown anything yourself? Do you know how hard it is to grow something without spraying? Everyone’s going to die of something. I’ve got families buying my produce to go home and make their own baby food. Their babies are healthier than a lot of other babies. You want things organically certified? I have a sister-in-law who always bought things from Trader Joe’s. She stopped buying organic. She’s fine. Everyone’s going to die of something. Parents buy their stuff from me and they have healthy babies. . . “

Wow. I felt like I had received a serious tongue-lashing and when he repeated his comment about inevitable death and healthy babies for the fourth or fifth time, I finally said, “Well, our daughter just finished chemo and she’s only 2 years old. I’d really like to avoid pesticides as much as possible.” He didn’t really respond to that. I scanned the table a bit more, thanked them for their time and returned to a vanful of my beloved family members. . . who are all going to die of something. . . with empty hands.

I certainly understand that farmers go through quite a lot to support their families and compete for business, but I had no ill intentions in my question and really don't think it deserved the response it received.

I was embarrassed, dejected, discouraged, and kind of offended. We drove down the street to the local grocery store and bought over-priced organic produce that was anything but local. Sadface.

Farmer’s market attempt #1 was a failure.

I apparently committed a cardinal farmer’s sin, but the only one I knew about was to not ask if they were organic. I thought asking about spraying was what you do. I didn’t even bring up the “O” word – he did! All I got out was what I posted above. Should I just resort to buying the Clean 15 locally and give up on finding someone who doesn’t spray? Help! I don’t want to be scarred from Farmer’s Markets for life because of one bad experience.

So, farmer’s market pros, what advice do you have for me?

A Thousand Words Thursday: Grace In Such A Storm

2011-07-13T20:56:00.000-07:00

Eliana shortly after receiving an EVD (external ventricular drain) via Diagnosis & Surgery

Hypotonia and Chewing Difficulties

2011-07-12T14:22:00.000-07:00

As promised in my post "Hypotonia and Swallowing Difficulties", I am going to spend some time talking about our son Liam's struggles with chewing and the tools we have found to be most helpful. There have been several tools we have used to assist us in Liam's growth in this area. We cannot say enough how invaluable the assistance from our Speech & Language Pathologist has been. At a later time, I hope to share with you some oral motor exercises we have done with Liam to work on his hypotonia in this crucial area.

So, let's review Liam's struggles with chewing. Think about how you chew your food. There isn't much thinking that goes into it, right? It's pretty instinctual really. You place the food in your mouth. Your tongue moves it to your teeth. You begin chewing, saliva does its thing, enzymes start breaking down your food, etc. Your body pretty much knows what to do and, for most of us, digestion is an easy process.

Liam had several things against him for that easy process because of his hypotonia. Hypotonia can affect every muscle in your body, including how your tongue chooses to move. . .or not move. It can affect all areas of how your feeding development typically progresses. Liam's oral motor delay was further complicated by the fact that he latched on to his thumb so early and basically skipped that oral exploration stage most babies go through. We found as we worked more with him using these tools and exercises, he began to revisit that oral exploration stage and moved forward.

Under the guidance of Liam's Speech-Language Pathologist, we began exploring ways to strengthen his mouth and train him how to properly chew. Here are some of the tools we used:

The Nuk Brush

This tool was great for gently getting into Liam's mouth and attempting to make him aware of all that is going on in there. We could use this to rub his tongue, his inner cheek, etc. Oral stimulation is really important for hypotonic kids. Part of Liam's training involved attempting to get him to move his tongue very intentionally after I (or his brothers) modeled the requested action. "Liam, can you get the Nuk with your tongue?" You can also use a typical infant fingerbrush (but the Nuk brush is definitely less painful!)

The Nuk Brush can also be dipped into a variety of foods and used with that added incentive for movement. A similar tool we used is called The Probe. There are also Toothette Swabs that can be dipped in juice or purees and used to give that much needed oral stimulation.

Duo-Spoon

This spoon was so helpful when Liam's tongue thrust reflex was hanging around for longer than it should have. We were able to introduce him to an extremely flexible spoon and get his mouth used to it without any discomfort.

Chewy Tubes

Chewy Tubes have probably been the most helpful to our family in this area. Both of our older boys loved to model the use of these for Liam and Liam often would perform for them much more than he would for myself or his therapist.

The yellow Chewy Tube is meant to be the smallest and then as a child ages they can move along in the colors.

The green one shown here is the "Knobby Tube" and it provides more sensory input.

Chewy Tubes can also be dipped into different foods. We liked to dip these into almond butter, cream cheese, frosting, etc.

Along the same lines as the Chewy Tubes, are called Texture Grabbers because of the great handle that's built-in. These work in the same manner as the Chewy Tube but are maybe a bit more advanced.

Mesh Feeder or Baby Safe Feeder

These you can actually find in your favorite store's baby section. The Mesh Feeder is great for putting chewable foods into that can provide feedback to your child without risking choking. The Mesh Feeder was not our greatest success. Liam had moved along in quite a few areas before he was willing to tolerate the mesh bag. Our therapist also recommended finding a gauze-like material at the fabric store and twisting it shut after putting a food into it. I can't remember the name of the material. Maybe if she reads this, she'll leave it in the comments. ;) A good food choice for this is apple slices. Think of fresh food that your child would enjoy chewing on, but you wouldn't necessarily give it to them to possibly break a piece off and choke on it.

And, finally, because he was just such a great, patient little model. . .

Here's Liam pretending he's a walrus? with his Nuk and Probe. :)

Hypotonia and Swallowing Difficulties

2011-07-05T18:28:00.000-07:00

Today was Liam's last day of speech and feeding therapy. We are so grateful for God's providential hand guiding Liam's progress and growth!

We do love our Miss Patti so much and will miss her tremendously. It is so bittersweet to be done with Liam's therapy. She has seen our family through quite the adventure over the past couple of years and we think of her as much more than a specialist for our son. She moved on with us as Liam graduated from the Early Intervention program. She has been an answer to prayer in many, many ways with her sweet spirit, her discussions of faith, her flexibility and just her loving on our family so much.

I had been planning on writing some posts about Liam's feeding struggles and so, this graduation day seems as good a day as any to begin this series.

Feeding has seemingly always been an issue for Liam. As an infant, we saw Liam's weight percentile decrease even as his food intake was increasing. He would spit up quite a bit, and always wanted more. The phrase "failure to thrive" began to be tossed around. We saw a lot of congestion from Liam and he seemed to always be needing to clear his throat. Our speech therapist stated concern for Liam's safety and talked to us about a swallow study to determine if he was risking something called aspiration. Aspiration means that your food and/or liquid intake is “going down the wrong pipe” into the airway. Continued aspiration can lead to the lungs filling and pneumonia developing.

Liam had two swallow studies done - one because the scheduling was done incorrectly. The first study we had done for Liam, used an x-ray to see if there was anything physically blocking him from swallowing. His drink was mixed with barium sulfate, which shows up on an x-ray and makes it possible to watch the movement through one's digestive tract. We never suspected a physical blockage because of his symptoms; and, this study was honestly pretty pointless for our needs.

The second study was what we needed. A swallow study (videofluoroscopic swallow study (VFSS)). Again barium was mixed with his drink and his food. A moving x-ray allows the speech pathologist and radiologist to follow the food or drink as it moves through the body. Liam’s VFSS showed that he was swallowing in parts. Instead of one collective swallow of the drink, tiny amounts were swallowed at a time and a bit escaped down his airway. The speech pathologist labeled this “microaspiration”.

Liam never developed issues such as aspiration pneumonia, but we did deal with watery eyes, choking, coughing and a congested sound. There is also something called “silent aspiration” that would not present with these obvious signs of distress. We are grateful that Liam’s case was not as severe as it could have been. The solution recommended to us by the speech pathologist performing the videofluoroscopic swallow study was to begin to add a colorless, tasteless thickening gel to everything Liam drank.

The product recommended by the speech pathologist was a little pricey, so we found an alternative. (Still pricey.) We ended up using Medline Hydra-Aid Liquid food thickener. Liam needed the Nectar consistency. You simply shake up the child’s drink and gel together at the right amounts as found on the directions.

The struggles with Liam's ability to safely swallow were a result of his hypotonia (low-tone). Liam's muscles weren't strong enough to properly control how he swallowed.

He eventually outgrew the need for the thickening gel and began to safely swallow liquids. One of the next steps we took at the recommendation of our regular feeding therapist, was to purchase two tools. One is called a Flexi Cut Cup and the other is called Mr. Juice Bear. We purchased both of these products (and others I will highlight in later posts) through a company called Beyond Play. ( BTW, I have no affiliate or sponsor status with any of the companies or products I'm mentioning. I am simply offering what we used.)

The Flexi Cut Cup helped Liam to manage his drinking ability by training him to take controlled drinks. In the way that we take sips and self-regulate, this cup allowed him to gain that control.

The Mr. Juice Bear cup worked in roughly the same way, but this was training him to use a straw. He could squeeze the cup and control how much drink came through his straw. Both of these devices worked wonders in giving Liam some much needed independence and confidence with drinking. The Flexi Cut Cup was soon replaced with one of Liam's older brothers' Spider-Man cups. It was about the same size and Liam was thrilled to be able to drink out of a cup just like his brothers did.

Liam's struggles with drinking were sometimes frightening and often frustrating, but they weren't nearly as eventful as his struggles with chewing solid food have been. In the next post of this series, I’ll be exploring the struggles Liam has had with his chewing difficulties and some of the tools we found to be most helpful.

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No Weapon Formed Against You. . .

2011-06-26T17:09:00.000-07:00

I am not sure what the legalities are for blogging about an investigation that is on-going. I will keep the details of the investigation minimal. But, I want to give a brief account of the events that took place for our family this weekend, because I want you to know that GOD STILL PERFORMS MIRACLES.

Nevermind the fact that God has shown up during our daughter’s cancer diagnosis, during her surgery, during her fevers and bacterial infections and EVERYTHING else. And of course he is watching over her now as her last MRI was clean.

But, this, THIS, was out of nowhere.

Let me first start out by telling you we live in a townhouse.

On Saturday morning, I went to get Eliana from her crib. She had a small scratch above her left eye. I thought maybe she had scratched herself with her nails, but asked my sister to look in her crib for a toy or something that might have scratched her overnight, so we could make sure it doesn’t happen again.

My sister began to move Eliana’s blankets and stuffed animals around and found what appeared to be a small metal “nub” of some sort.

We both commented that it looked like a bullet, laughed at how ridiculous that was and wondered what it broke off of.

I brought Eliana on to the floor and got her dressed for the day. My sister sat down on a sharp piece of pink plastic from a toy, tossed it and we didn’t think much of it.

The boys came in to see Eliana and they noticed some powder on the stovetop of her kitchen. I said, “It’s probably baby powder that got spilled” and finished getting Eliana dressed. When we stood up, we noticed a hole in the wall above her kitchen. There's the white powder - drywall. My sister commented that it looked like it came from the other side and was pushing out. I called for my husband to come look. His reaction was quick and his voice was panicked.

“That’s a bullet hole.”

“What!?!”

“And THAT is the bullet.”

Oh, sweet, sweet, Jesus, you spared her life. . . again.

A bullet in my daughter’s crib. Who would ever imagine?

My mother came in and found the bullet hole in the crib that we had missed. It was facing downward as the projection of the bullet moved at a downward angle once it entered Eliana’s room.

We found her bright pink baby doll bassinet, one side was splattered with drywall where the bullet entered it and made a whole clear on the other side. There was the pink plastic broken toy part on the floor. We found tiny shards of crib mixed in her blanket. There’s what hit her eye.

“Did you hear anything last night? Did anyone hear anything last night?”

“Yes, I heard what I thought was a toy falling. . .or Caleb falling out of the bottom bunk like he does at least once a week.”

That was the shot?

“I did get up to check on Eliana after she was fussing. I didn’t turn the light on. She fussed for a minute and seemed to roll back over. I went back to bed.”

That was her eye getting hit?

We called the police and waited a while for them to arrive. We began to discuss how no one knows if the neighbors are even okay, but we didn’t know if we should go over there or wait for the police. No one really knew what to do.

The police arrived and we learned the neighbors were fine. And this is where the story will lose its detail. I don’t know what I can share with you, because it is an investigation. I will tell you that it appears to be accidental in nature and that awkward apologies were made. I will also tell you that it appears truth is being hidden and I pray that God would bring things to light for his purposes and glory.

The bullet hit the crib’s top bar at a downward angle, and should have kept going until it hit the mattress, the other side of the crib, the wall in between the slats or my precious sleeping baby girl. But it just fell. It just fell onto her mattress, fully intact, speckled with drywall. And the crib splintering could have blinded her, but it just bruised her along her brow bone.

It doesn’t make sense. We don’t know what stopped that bullet.

Oh, but we do know, don’t we?

In the middle of the night, while we slept soundly in our beds and other people were reckless and thoughtless and dangerous, my God was watching over my sweet Eliana.

I don’t know what God has planned for Eliana’s future. I hope with everything in me that it is a long, long future. But, whatever it is, he is THERE. He is always, always there. And nothing will hurt her unless he gives it permission to. No tumor, no surgery, no infection, no bullet. Everything is subject to God’s will.

And, you, yes, YOU, . . .he is watching over you as well. Who knows what plans God has for your life? But, he has plans and nothing will prevent him from keeping those plans. Nothing. Whatever comes at you, whatever is allowed to touch you, is only allowed to as part of his plan. There’s freedom in that. Rest in it!

Be amazed by our God today. He is worthy of all our wonder, all our awe. He is worthy.

I lift up my eyes to the hills.

From where does my help come?

My help comes from the LORD,

who made heaven and earth.

He will not let your foot be moved;

he who keeps you will not slumber.

Behold, he who keeps Israel

will neither slumber nor sleep.

The LORD is your keeper;

the LORD is your shade on your right hand.

The sun shall not strike you by day,

nor the moon by night.

The LORD will keep you from all evil;

he will keep your life.

The LORD will keep

your going out and your coming in

from this time forth and forevermore.

Psalm 121 ESV

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Discovering Medulloblastoma: Our Daughter Has A Brain Tumor (Part 3)

2011-06-26T09:30:00.000-07:00

September 24^th Eliana was eating and drinking very little. She was put on IV fluids and was seen by multiple specialists all within a few days. Talk began about her head circumference. Questions were asked about her well-baby checkups. Had the ranges of her head circumference ever been alarming to the pediatrician? Have you noticed a change in her head size?

What?

I mentioned that she’d lost weight and that now I was wondering if what I thought was her body getting smaller, was really her head slowly getting larger. I talked to a woman whose “listening” facial expressions looked like scowls and I wanted someone else to talk to. I felt like an idiot.

The docs began to monitor Eliana for possible Intercranial Pressure (ICP). She had to have a light flashed in her face to watch her pupils every so often - even at night. Her head circumference was measured to watch for changes. No one explained more to me than this. The docs said they were looking into a metabolic disorder. We saw someone from neurology. We saw someone from genetics. We saw someone from ophthalmology. We waited for the GI specialist who was apparently swamped with patients. Eliana was still throwing up periodically.

We hit the weekend and things slowed down. An MRI was ordered, but couldn’t happen over the weekend. We were just waiting and waiting. I read so much scripture, had so many encouraging phone calls, texts, Facebook comments and messages. It was frustrating for me to not be able to give anyone answers. I was still hoping for some connection to her delay. Genetics docs had me hopeful. The ICP talk had me confused.

September 27^th. Monday. Eliana’s MRI was scheduled for Monday, but it kept getting pushed back because of emergencies. She was put on fasting from midnight, awaiting the scheduled MRI. That morning she began to throw up every hour. Discussions were taking place down the hall and I was screaming inside. Nurses seemed to have lost their ability to hear. Every time she threw up, I made a fuss. Eliana was listless. She would barely keep her eyes open. I kept telling myself, It’s because they are starving her. She’s barely eaten for a while and now she’s fasting. She’s lethargic from all of that. She just wants to sleep. You just think it’s worse than it has been. I knew I was lying to myself, but I just kept at it.

No one moved until she had thrown up every hour over 5 hours. I told the docs about her listlessness. I started noticing that when I could get her to open her eyes, she wouldn’t look at me. Her eyes were doing strange things, moving in ways I had never seen before, bulging it seemed at times. I demanded that somebody do something. I felt angry and terrified.

An emergency CT scan was ordered. The docs were so reserved, even as they began to say things like “It’s become more urgent.” and “Let’s not wait for the MRI.” I continued to feel like maybe I was just being an idiot. I was guided down a hallway carrying my princess wrapped in a blanket. The doctor talked to me about how a CT scan was going to give us a clear picture of what’s going on and it was quicker than an MRI. I asked how soon the results would be available and was told immediately.

There was a strange foreboding in that walk to radiology. And I don’t just mean because I now can look back and know what we discovered. There was a very real feeling that something was being kept from me. That I was being coddled. I had a million thoughts going through my head and the most persistent was this feeling of incompetence. That this wouldn’t be happening if I had done xyz. I tried to shake thoughts away as I watched them run Eliana through the CT machine. A nurse walked me back and no one said anything.

I don’t remember how much time passed after we got back to the room and before it began to fill with doctors and nurses. Two doctors that had been with me prior to the CT scan were standing with someone I hadn’t seen yet. She was a social worker. What was she doing there? The doctors and the social worker asked me to take a seat. I stopped breathing.

“The CT scan revealed a mass on Eliana’s brain.”

There was a sudden fog in the room around me. As doctors and nurses were tending to Eliana to prep her for moving from the room. There were half a dozen conversations going on in that room. All I saw was the woman in front of me. My mouth was dry. I was dizzy. I thought I needed to sit down, then remembered that I already was.

“Oh!” It was softly, squeakily whimpered more than spoken.”Is it. . . cancer?”

“We don’t know what it is yet.”

I was told the first concern was the fact that the tumor was blocking the natural flow of her cerebrospinal fluid (CSF). There was a build-up of the fluid, which is why she was vomiting and why her eyes were changing, why everything was happening. She needed a drain placed to relieve the pressure and she needed that drain placed now. We were moving to the Pediatric Intensive Care Unit (PICU).

I remember saying I needed to call my husband. My voice cracked and tears started as I said, “I don’t know how I’m going to tell him.” The social worker suggested I tell him to just come and not tell him what they discovered until he’s here. She wondered if he would be driving safely. She wanted me to calm down before I called him.I thanked her over and over again for that suggestion. I thanked the doctors for jumping on the CT scan.

I called Andy and asked him to come. I don’t know what my voice sounded like to him, but he agreed and hung up without saying goodbye.

A doctor came in and introduced himself. I had no idea who he said he was. I still don’t. I learned later (or re-learned) that he worked alongside the neurosurgeon who would perform Eliana’s tumor resection. He quickly explained to me the procedure for the external ventricular drain (EVD) ( also known as a ventriculostomy) and the risks. He said, “You know and. . . in some rare cases they can. . .ya know, go to Heaven.” I wanted to laugh. I couldn’t believe he said it like that. I felt even more like a child. And all the grown-ups were talking like Charlie Brown’s grown-ups.

The drain would be placed. She would be stabilized. We'd have an MRI and figure out what to do for surgery. I signed a consent form. It would be the same generic consent form I would go on to sign more times that I could count.

Nurses started gathering our things. The social worker was shadowing me around the room as I was trying to help pack up the room. She was driving me crazy. I turned to her and said, "I don't want you to think I'm just going to lose it and go into hysterics or something. I know God is fully in control of this situation." She blinked a few times, like they do in those old cartoons and then said, "Oh, I don't think you're going to lose it. I wasn't thinking that at all." Later, I would play that conversation in my head and wonder why I enjoy making an idiot of myself.

We were whisked downstairs in a blur. I called Andy to find out how close he was. He asked me to tell him what was going on. I told him. I begged him to be careful driving and told him I knew little of what was going on. They were getting her ready. Things were moving too quickly to think. I kept having to tell myself to breathe.

We hung up. I called my mother and had no answers for her. I posted on Facebook. The prayers and Scripture began literally flooding my phone as notification after notification came through my email. I answered calls from friends. I made arrangements for childcare for the boys. I was just moving and moving. Not by own volition at all. I felt trapped inside myself. To those around me, I may have appeared calm, but inside I was very much crumpled up in a corner, sobbing and begging Jesus to take this all away.

Discovering Medulloblastoma: Signs of Something Wrong (Part 2)

2011-06-24T07:59:00.000-07:00

So, how did you actually know something was wrong?

In September of 2010, Eliana began to have random bouts of vomiting. We thought she had a stomach bug, but no fever developed, no diarrhea came. And no one else got sick. That was what bothered me the most. I was waiting for someone else to get sick. When you have four kids and someone catches a bug, someone else is going to catch it and then EVERYONE else is going to catch it. This was no stomach bug I had ever seen.

Eliana would vomit and then a day would pass and she would seem okay. Then she’d vomit again. This went on for a little over a week and when no one else was getting sick, I made an appointment with her pediatrician. At that appointment, it had been about 33 hours since she had thrown up last. The doc thought she was just having a stubborn stomach bug and that she just may have an irritated stomach from the virus. She was happy to hear that she hadn’t vomited in such a while and that she was drinking okay. We were told to push the fluids and to keep an eye on her. On our way home, Eliana threw up again.

I spent the next few days on the phone with a nurse at the ped’s office and we monitored Eliana. I began to have trouble getting her to eat and drink anything. The vomiting seemed to be sporadic and then it would pick up and then it would die back down. But her intake was declining. I was having to give her Gatorade with a medicine dropper. I was back in the ped’s office exactly a week from the first visit. The ped asked me if I wanted to go home and push the fluids, if I wanted to have her given IV fluids at a clinic, or if I wanted to take her to the hospital. I chose the hospital.

September 22nd. We went to the local hospital. I was complemented repeatedly on my “Mommy instincts” to push the pediatrician that something wasn’t right. I was praised for my “dedication” evidenced by getting Eliana to drink using a medicine dropper. “Oh, you were just taking care of her like a little baby bird, weren’t you?”I didn’t want goofy compliments. I wanted someone to fix my baby.

The pediatrician wanted us to explore GI issues to see if there was a blockage. Her developmental delay was discussed. Murmurings of metabolic disorders began to mix with murmurings about her head circumference. At the mention of metabolic disorder, I began to silently wonder if maybe her being sick was going to unearth the mystery of her and Liam’s delay. I began to hope for answers.

Eliana was given IV fluids and she seemed to respond almost immediately. She wasn’t vomiting and an Upper GI study came back clear. She had some labs come back showing elevated white blood cells that indicated she had a virus. The pediatrician said that we were waiting for her to hit a 48 hour window of not vomiting and then we could probably just go home since she was doing so well.

At 44 hours, she vomited.

It was recommended we transfer to Children’s Hospital in DC for “a higher level of care”. A pediatrician mentioned the possibility of Intercranial Pressure (ICP), but he really sounded like he let that slip and then regretted it. I wasn’t sure what to do with that.

We were packed up into an ambulance for the transfer and I rode up front while an EMT tended to Eliana in the back. She was doing fine watching something on the TV they had set up for patients.

When we got to the hospital, we were sent to the GI floor first. We had students, nurses, doctors, - a ton of people – come in and ask me the same questions over and over again. I thought I had seen a GI specialist, but later learned she wasn’t among the many. At a certain point, I had the details of Eliana’s illness as well as her complete medical history memorized. I spouted it off like lines in a script. It felt cold and clinical, even coming from a mother’s mouth. I hated how detached I began to feel from it. I hated what all the doctors were turning it into.

Discovering Medulloblastoma: The Back Story (Part 1)

2011-06-22T12:43:00.000-07:00

Back in February, I began to post about the journey of Eliana's medulloblastoma diagnosis. In that post, I mentioned that I had updated quite a bit with Caring Bridge and referred readers to that site for more detail. My intention was always to write more when I felt like I could separate myself from it a bit. As if that would ever be possible. And I have been putting off writing the ordeal just about ever since. But, little snippets left on Facebook (and later copy/pasted to Caring Bridge) would never have the detail that other medullo parents may want to read. Or have the detail that any of our loved ones may want to read.

So, I have begun to write things down in more detail, in the hopes of having a richer resource for parents that may stumble upon this blog looking for medulloblastoma information and a more detailed account for our family. Please feel free to post questions or just comments. I would love to hear from you, even if cancer is far from you. I am not sure how many posts will come of this particular "series", but I will write Eliana's story as best I can and with as much candor and vulnerability as I can. To God be the glory.

How did you even find out about the tumor?

This is probably the question we were/are asked the most often. I’m sure it’s the question I would be asking. Who would think that a toddler would develop a brain tumor? And how would he or she ever tell you?

Well, before I can answer that in the manner in which the question is intended, you need to know Eliana's background a bit.

Eliana was 18 months old when the tumor was discovered. She never told us her head hurt. She never grabbed for her head. We didn’t see changes in her behavior. She wasn't yet walking, so there was no stumbling to witness. All we had were these random bouts of vomiting.

At the time of her diagnosis, Eliana was already showing signs of developmental delay, just as her older brother, Liam, had. (You can read more about Liam's delay by following some of the labels about developmental delay or hypotonia.) Eliana had a vision delay like Liam had. She wasn’t hitting her milestones on time, but she was clearly stronger than Liam. Her delay seemed different than his. We just didn’t have all the pieces yet.

When Eliana was a month old, I noticed that she would shake her head back and forth repeatedly. It was done in the manner that she and Liam do now to make us laugh. You know the game - yelling “Uh-uh-uh-uh” with their mouths flapping open as they shake their head back and forth? Yeah, that one. Well, this was Eliana at one month (minus the “Uh’s”). I was watching Eliana like a hawk after dealing with Liam’s delays and so I immediately mentioned the head shaking to her pediatrician. Her pediatrician also noticed some tracking issues with Eliana’s vision that we had seen. She thought maybe her head shaking was a focus issue, but ordered an ultrasound of her brain just to be sure. We had the ultrasound done and the report came back totally normal. Within a couple of weeks, Eliana’s head shaking had stopped.

Moving right along in a mirroring of her brother, Eliana skipped over milestones. When she was closing in on 8 months and was continuing to model Liam, we called Liam’s neurologist and Early Intervention. Early Intervention set us up with an Occupational Therapist. Neurology set us up with tons of blood tests and an MRI.

Now, here’s where things get tricky. We had Eliana’s MRI performed at a regular hospital (not a Children’s hospital). Please DON’T EVER DO THIS. I am begging you for your child’s health – for her life - travel to a Children’s hospital. Eliana’s MRI was performed and the radiology report came back fine. A copy of the MRI images were never sent to the neurologist. I didn’t know this. I began to experience a great deal of difficulty getting phone calls returned. Nothing was getting forwarded to our pediatrician. No reports. No lab results. Nothing. The nurses were having difficulty getting any communication from the neurologist’s office. So, I angrily gave up on scheduling a follow-up. It’s a decision that will probably always haunt me.

Months later, my husband and I sat in a room full of oncologists and were told that they were able to get a hold of the MRI performed on Eliana when she was 9 months old. And the tumor was visible on the MRI.

Was the tumor there on her ultrasound at 1 month old and the tech and pediatrician missed it?

Was the tumor there on MY ultrasound when she was in my womb and the tech and ob-gyn missed it?

Can a doctor and radiologist only see a tumor when they already know it is there?

I mean, my goodness, how could an MRI radiologist looking for cerebral abnormalities to explain a developmental delay NOT see a TUMOR growing on my 9 month old’s brain stem?

“It was very blurry because they opted to not sedate her.”

“They were not using the contrast we use in looking for tumors.”

“You went to a hospital full of heartless and incompetent staff.”

(Okay, that last one was my addition.)

I apologize to our close friends reading this and, perhaps, discovering this information for the first time. It is not something we wanted to disclose to everyone. It is horribly painful to know that her tumor was there and missed. I don’t even want to write about it. I have gone through countless conversations and tears with Andy about how I feel like it was my fault. I dropped the ball with my frustrations with countless specialist appointments. I should have made a follow-up even if I had to beat down a door to get an appointment scheduled. I should have just gone to a different neurologist. Shoulda, shoulda, shoulda. And one day, my husband, who was given to me by a most gracious Lord, looked me in the eye and said some of the most powerful words I’ve ever heard:

“Do you think I think that? About you? I want you to know that I don’t think that.”

Gratituesday: Loving Laziness

2011-06-21T06:54:00.001-07:00

hammock image from Microsoft Office Images

Our family can breathe for three more months. Well, two months and a couple of weeks, as my husband playfully corrected. “Because you know we’ll start panicking as the MRI gets closer.” Well, yes, two months and a week. . . or less.

Until then, we can enjoy the summer. It’s officially the first day of Summer. We are done with our school year. I just need to finalize the progress reports and grade some penmanship papers. Then the final package of Jonathan’s 2^nd grade is off to A Beka Academy for final grading. I didn’t know if we’d get through this school year, but we did and it feels great. Jonathan and Caleb are ready for 3rd grade and 1st grade, respectively.

I love having nothing to do. Of course, as a wife, homemaker, mother, and financial administrator for a few church plants and a coffee ministry. . .there’s rarely nothing to do. But, you know what I mean. We don’t have to get a certain amount of schoolwork done each day and that feels good. We can sleep in. (Well, we could if my kids weren't completely opposed to that concept.) We can sit down in the morning with our baked oatmeal and watch Sesame Street. That is exactly what we are doing on this first day of summer. Then it’s off to do a few chores and play and cuddle and draw and imagine and laugh. . .

I love lazy days. Yes, I am grateful for laziness. I am happy to be resting in the moment of peace that has been gifted by our Father.

I have been pondering Christ's faithfulness lately. Whether he heals us or just holds us, he is faithful. He’s taking care of all of our needs. Yes, we have responsibilities and tasks and appointments – some of which he actually never asked us to schedule ourselves around. What he does give us, we need to be doing whole-heartedly and with a Gospel-minded intentionality. I am not advocating that we ignore Colossians 3 or the entirety of Scripture. But, I am saying it’s okay to enjoy rest. And not even just a physical Sabbath. Tell your brain to shut-up for a bit. Remind yourself that Jesus promised new problems for tomorrow and told you to leave them there.

Today, I am grateful for no worries. And, you should be, too. Even if your moment of no worries is just a matter of minutes. Spiritually, we can just lie back in our hammocks and relax in the Sonshine.

It’s going to be a beautiful summer.

What are you resting in for this moment? What are you grateful for?

Join us for Gratituesday at Heavenly Homemakers!

The Next MRI

2011-06-19T11:58:00.000-07:00

Thursday morning was somewhat of a blur for me. Every time I thought to write about it, I was having trouble even thinking of where to start.

That morning, I was vacillating between wanting to be excited to be spending the day with the whole family and wanting to throw up when I would remember why Andy had actually taken the day off. It was strange to actually be forgetting in moments, even as we were getting ready to drive to the hospital. How could I possibly forget and remember over and over again? I wanted to gain control of my thoughts, but I felt like they were controlling me.

Along the drive there, I wanted to listen to the radio, hoping for some kind of encouraging but overplayed song to inspire peace, but we chose to let the little ones watch a movie. I kept trying to get us to pray (mostly because I needed to) but Liam and Eliana kept alternating who was going to fuss. It was making me feel angry, then guilty.

I kept going through that process where you have to remind yourself to breathe. And then I’d catch my breath, taking a huge gulp of air as if I had just come up out of some deep swim. Then the butterflies would come. I’d start feeling nauseated again. Looking out the window wasn’t helping. The drive there was taking forever at some parts, going by too quickly at others.

I decided to pray for Andy because I couldn’t think straight. I prayed that he would have peace in his heart. That God would hold him and encourage him. That I would not fall apart on him if the news wasn’t good. That I would give him time to sort out his own feelings and not just bombard him with mine.

At some point along the drive, Andy looked over at me and decided that now was the time to point out a hair on my chin. It’s been there for years. I pluck it. It comes back. I pluck again. But, NOW was when he noticed it. I decided this was his focus point, necessary for coping. . .maybe an answered prayer. I jokingly whined that he’s picking on me. And that it’s been there forever. He laughed about it. I asked him about having tweezers on his Swiss Army knife. He reminded me he doesn’t carry it anymore. We got quiet again. I began to pick at my chin hair and continued to for pretty much the rest of the drive.

It took a while to get called back, but the kids enjoyed coloring in the waiting room. When we were called, Eliana didn’t want anything to do with the nurses. Weighing her scared her. Taking her blood pressure scared her. The pulse ox check scared her. Putting on the gown scared her. I couldn’t decide if she was no longer use to these things or if she now remembered them with fear. I told a nurse that “I’ve been told that when they are this little, they don’t remember the scary hospital moments. I don’t think I believe that.”

They had me hold her down while they held the mask to her mouth. It felt torturous and I fought back tears. Her breathing was strained because she began crying so hard. In my head, I was talking ugly to the nurses around me. I thought about telling them to leave her alone and that we’re done here. As usual, it took us forever to get called back, but once she began to fall asleep, they rushed me out of there. I wanted to kiss her and hug her. She was already asleep. I needed to hug her.

When I went back out to the waiting room, I was grumpy and Liam was fussing. I had no patience for him. I snapped at Andy about something I don’t even remember and then basically begged for us to get lunch.

We were paged after Eliana’s MRI was complete and we went back to see her. They had completely wrapped her in a blanket to keep her warm because she was trying to come out of sedation too soon. I was confused and a little alarmed when I saw her covered up so much. The recovery nurse was very sweet and she loved on the boys, bringing them popsicles and snacks and juice for our bag. Eliana woke up on her own and we packed to go upstairs to the Oncology floor.

Eliana’s favorite Nurse Practitioner, Heather, had a hard time getting Eliana to cooperate. Eliana decided she didn’t want to sit on the patient bed, but she wanted to sit on the pull out-step at the foot of the bed. She kept saying, “I sit in high chair. I sit in high chair.” Heather accommodated her request and examined her practically on the floor. Eliana still wasn't very cooperative and Heather did the best she could. We waited for the Oncology doc. When she came, Eliana had warmed up a bit from post-anesthesia. She played a little bit and the exam went okay.

The oncologist had briefly looked at the MRI and said things looked good, but she asked the radiologists to do a “more thorough quick look”, but still not a final report. Radiology would page her when they were done. The page came quickly and the good news of a clean MRI was a relief. It felt strange, because I still want(ed) that final report. After talking a bit more, the doc asked if we had any questions. I asked, “If it came back, what is the course of action?” We were told that it all depends on when it comes back, where it comes back, how old she is. . .etc. etc. But radiation is pretty much the go-to option. I immediately thought about how I need to look into traveling out of the country to somewhere that isn’t so radiation-happy. My thought scared me. I just wanted to go home.

I don’t’ remember the drive home. Later we were sitting at home and I think I was finally letting it sink in that we had the MRI and everything was okay. I was feeling silly and looked over at Eliana. “Eliana! You’re brain is okay!” She pointed at her head and said, “My head. I happy. Happy Happy Happy.” She’s such a silly little goof.

Later that evening, Liam got a hold of a pistachio and had a bad reaction. We knew peanuts made him sneeze and his eyes itch, but we’d never seen him break out into complete hives and swelling. Thankfully, his breathing was fine. We dropped the other kids off with friends and headed to the ER to make sure he was okay. He wouldn’t stand alone on the scale and when they tried him on the baby scale, red lettering lit up that read “Overload”. I cracked up laughing and offered to stand on the scale with him for them to figure out his weight.

He responded well to Benadryl and prednisone. His breathing checked out fine and we were sent home close to midnight.

That was a long, long day. But we are grateful for God’s protection over all of our children.

"I'll pray for you."

2011-06-09T13:22:00.000-07:00

Years ago, I was challenged by a young man, Jon, who led our high school's Bible club. He and the Vice President, Felicia, took me under their wings and worked with me toward a position leading the Bible club when they graduated. Had I been upfront with them - a lot more transparent, a lot more vulnerable - I might have shared with them my shortcomings and my fears. But, at the time, I was very immature and too afraid of the skeletons in my home's closet to let just anyone in. I was all mixed up with what grace really was, what forgiveness really was, what Christ's redemptive power on the cross did for me. I thought I wasn't good enough, but I didn't want to turn them down.

I wish I could say the Bible club was a roaring success, but it wasn't. I caved to the pressures of an aggressive admin and a sporadic group of attenders. . .and to my own struggles with grace. It fell apart. To this day, I don't know if another Bible club is even going on in my high school. I effectively may have killed the study.

But failure is not what this post is about. This post is about what Jon taught me that stuck. One day while on the phone, he asked if he could pray for me about anything. When I shared, he immediately led me in a prayer on the phone. That weirded me out. I'm not sure why, but it did. Years later, I sat on the phone with a family member and she mentioned needing prayer about something. I stopped our phone conversation and asked if I could pray right then. It was awkward and foreign, but it felt amazing. Some of you are laughing at me right now, because you have always done this. But, for me, it was a new way of sharing in someone's pain, frustration, mourning and I attempted to adopt it as a practice.

Well, that practice has gotten away from me recently. I find myself offering to pray for someone and then never getting around to it. That's awful. I find myself commenting on someone's FB post and promising that I will pray. Then I see their next post and the situation either escalated or resolved and I never interceded for them. I effectively kill promises of Scripture.

Okay, that last statement was a bit dramatic, but you get the idea.

So, the other day I was listening to KLOVE and Louie Giglio came on for a little commercial/devo snippet. Now, I couldn't hear much of it over my ~~children~~ squawkers, but I heard something about a challenge to pray for 5 specific people over the next 6 months keeping 2 Peter 3:9 in mind. At least I think that's what the challenge said. (Again, I have my squawkers.) I thought this was some great intentionality and with everything going on with Eliana, it would be a good point of mental/spiritual distraction. And even if my prayers are not for salvation, they might be for a need for a reminder of Who they belong to.

And, now, I've got my five:

1) someone who has lost much, but God has not missed one tear (Psalm 56:8)
2) someone who has hopes and dreams and I pray that God would place His desires in this person's heart that God would be glorified in their fruition
3) an old friend who does not know my sweet Jesus
4) an older friend who I believe God can restore to health to and for His great glory
5) this sweet girl, someone I do not know, but I am moved by her story

And the next time you ask if I could pray for something, expect me to ask you to bow your head. :)

Who could you be more intentional about praying for?

Counting Down

2011-06-02T11:25:00.000-07:00

Eliana's next MRI is two weeks from today. Please join me in praying for a clean scan.

We will all go together as a family, something Andy and I have committed to doing. Each scan we will all be there. We are trying to prepare the boys. They are pretty excited that we're all going together and that a trip to the hospital doesn't mean they can't be with us. All of that separation is fresh in their minds.

Caleb says, "I'm worried it's going to be back. I think it is coming back."
Jonathan doesn't think so, "because she's not throwing up all the time anymore."
And Liam, according to Caleb, "Well when he turns 4, he'll probably be worried."

Jonathan told me, "I’m even worried that her tumor could go on to someone else, like she could get them sick, too."

My poor, sweet boys.

I am trying to find a balance between making them aware of reality and terrifying them. For us, that balance has been reminding them of God's sovereignty every chance we get. It has also helped to refresh my own soul.

Some of the truths we've tried to repeat to them throughout this whole ordeal:

1. God is in control.
2. God knew about her tumor before she ever got sick.
3. God can see what MRIs, CT scans, blood tests and doctor's knowledge cannot see.
4. God had/has a plan for her cancer. He has a plan for her life and he'll make that plan happen however he sees fit.
5. God is good and we can trust him.

And some new verses we will be working on with the boys, helping them to hide God's truth in their hearts:

Psalm 62 ESV

1For God alone my soul waits in silence;
from him comes my salvation.
2 He only is my rock and my salvation,
my fortress; I shall not be greatly shaken.

Jeremiah 32 ESV
27"Behold, I am the LORD,the God of all flesh.Is anything too hard for me?

Psalm 112 ESV

1 Praise the LORD! Blessed is the man who fears the LORD,
who greatly delights in his commandments!
7He is not afraid of bad news;
his heart is firm, trusting in the LORD.
8His heart is steady; he will not be afraid,

What are some favorite passages that remind you of God's presence in your times of fear?

Moving Right Along

2011-05-31T10:28:00.000-07:00

Today, Liam had another great session with his speech therapist. He has made so much progress with his chewing. He is speaking in full sentences just about all the time now. He has really come a LONG way. His therapist, our beloved Ms. Patti, has said that she thinks he's ready to move to just one session a month for monitoring! We don't want to see Ms. Patti any less, but I have to admit that was wonderful news to hear.

Tomorrow: ??

2011-05-30T17:39:00.000-07:00

Do you know what I would give to know right now that Eliana will grow up to be a strong, healthy, beautiful for Jesus, woman full of grace and years? But, that's not something I can know. And I can’t know that for any of my kids. YOU can’t know that for any of your kids. We can’t know that we will even be around to see them age and have families of their own. Everything is an unknown. Except to our Father. And that’s where faith meets the grittiness of life. It comes down to this: Do I believe God holds tomorrow or don’t I?

Do I believe God holds June 16th, the date of Eliana’s next brain MRI? Do I believe he holds the next three months and the MRI at the end of that? And the one after that?

Yes. YES. I do. But, I would be lying if I said I didn’t still catch my breath and toss butterflies in my stomach every time I think about it.

Now, I do have some days where I'm almost forgetting she’s even been through what she’s been through. . .forgetting what we’ve all been through. Things are starting to be a little normal around here. Eliana’s hair is coming back. Her scars are fading. She’s not vomiting unpredictably or spiking a fever that has me practically reciting a memorized transcript of a call.

“Yes, that was under the arm.”
“No, she’s not vomiting or acting differently. It’s just a fever.”
“Yes, we’re headed in now.”

Those days feel distant somehow as we move forward into routines and ministry again. I feel like some of those insane moments happened to someone else. It's like that weird fog when you wake up and are wondering if something happened last night for real or if it was just something you dreamed last night.

But it did happen. And when I remember sometimes, it's like I get that same punch in the gut I got when two doctors and a social worker sat down with me and said, "We've discovered a mass on her brain."

We walked through (are walking through) the valley of the shadow of death and the imagery of that valley has never been more real to me. The promises of that Psalm have never been more real to me, either.

He is comforting me in those moments where I have to catch my breath. He is refreshing me in those times when I emotionally crumble into a heap in the corner of my mind. He is leading me beside still waters when I can feel that he has sort of infused me with a new faith and my spirit is at peace - even from moment to moment sometimes.

Even as I write this now.

I don't worry o'er the future
For I know what Jesus said
And today I'll walk beside Him
For He knows
What lies ahead

Many things about tomorrow
I don't seem to understand
But I know
Who holds tomorrow
And I know
Who holds my hand

Even The Hairs of Your Head. . .

2011-05-29T18:56:00.000-07:00

I see tiny drops of grace when I look at the soft fuzzies growing back on my sweet girl's head. As I watch her hair come in a little bit more each week, my mind is repeatedly drawn to Scripture verses that speak of adornment and fleeting beauty. And I find myself praying that the Lord would see fit to give her a heart that fears Him and a life that honors Him. A long, long life.

Changing Things Up A Bit

2011-05-29T10:38:00.000-07:00

If you've been following this blog for any length of time, you'll notice that a few things have changed. This blog will continue to be our family's blog, but my hope is to expand my writing and to expand our audience just a bit. You can read more about my thoughts on this here.

Please feel free to leave comments, share my posts, etc. To the right of this, you'll see several new options for subscribing as well.

Thanks for Reading!
Rebecca

A Much Needed Vacation

2011-05-28T20:43:00.000-07:00

The last week of April, some dear friends of ours told us that a high school group's planned trip to Williamsburg fell through. This trip involved a timeshare and it was too late to rearrange dates. So, there was an opening for their family and our family to be able to go for a short vacation at the beginning of May. We jumped at the chance. It was a much needed time of rest and just being together. What a blessing! We are very grateful.

Liam's on the move. . .and he can't stop talking! :)

2011-04-13T12:08:00.000-07:00

It's been a long time coming, but Liam can now stand on his own for at least a few seconds!! Woo-hoo!!! In the same week, he decided to stand at his push car and walk across the room with it!

Liam walking with his car! from Rebecca Wire on Vimeo.

And, because God is so wonderful at linking our development, Liam's language has exploded as well. I have been keeping track of some of the new things he's said in order to update his Speech Therapist and so, I figured I'd share these goodies here as well:

Liam picked up a book that Jonathan had. "Can I read, Jonathan?" Jonathan said, "Yes." Liam said, "Okay, I can read."

Liam stood up at the window and said, "I'm trying see car." He later was pushing on an open drawer in the kitchen and said, "I'm trying close drawer." Throughout that afternoon he began to use "I'm trying. . ." in several different ways.

Liam was trying to sing part of the theme song to a cartoon the boys have been watching.
Me (to Andy): Did you hear him?
Liam: Daddy, did you hear me?

Andy was taking him to bed. Liam motioned for me to come and said, "Mommy come with me" as they started to go up the steps.

Liam was telling Eliana, "Go see Mommy" when he saw her trying to climb the stairs. He looked at me and said, "I call her. Her not coming."

4/5/11
Liam said "I'm happy" He pointed at me and said "You happy" then back at himself and said "Me happy"

4/6/11
Looking out the window after Andy left the house.
"Daddy, where are you? Are you there? Where is he? Where is he?"

Jonathan said: Liam, do you want something to drink?
Liam: I do. Yes!

4/8/11
Liam - Can I have chocolate milk?
I handed him his cup with white milk still in it.
Liam - I said chocolate milk, Mommy.

4/9/11
Liam wanted to watch something. He came over to me and said, "Momma, I don't know where remote is."

Caleb joked that we were watching Toy Story.
Liam - We're not watching Toy Story. We're watching Cars!

Saw Jonathan playing and said "He'S playing. He'S playing." He was very clear about the contraction!

In his high chair, calling softly to Caleb and then yelled "Caleb, get me down!"

4/10
Jonathan gave Liam a car. Liam: "McQueen, Mommy. Jonathan gave him me, Mommy"

4/11
Liam and Eliana were screaming at the table. I looked at Eliana and said, "No screaming. We don't scream like that at the table." Liam said, "I screaming, too, Mommy."

4/13
Eliana woke up from her nap and was calling me.
Liam: Eliana wants you, Mommy. Her coming, Eliana! Can I go see him, Mommy?

Epilogue

2011-03-21T07:26:00.000-07:00

There was discussion of focal-point radiation post-chemo. Due to there being a complete resection of the tumor and all of the other best-case scenario options during her treatment, her team did not think it was necessary. They still were obligated to tell us about the option. We declined it. There are no guarantees that it would aid her chances dramatically. There were guarantees that it would cause significant damage to her brain and give us unknown complications to wait for as she grew up. There was also a guarantee that should the tumor come back, we would then be limited with further courses of treatment because we had already used radiation on that part of her brain.

There was also sort of an ambush discussion where we were told about a clinical research study that the docs had all along intended for Eliana to be a part of after her 6 chemo treatments. They didn't tell us about this study until we were approaching her last chemo round. It's a research study, so there's no real proof that it would improve her odds. However, once again, there is real proof that it increases her risks as far as the drugs and combinations they would have her on. We still don't know about any delayed effects of the chemo we've just had her on. We declined the research study.

Eliana has been through enough and we don't even know if the cancer will come back. We can't bring ourselves to hurt her anymore at this point. We just want our family back. God can handle the rest. We trust Him.

So, here's what our future is going to look like (at least according to standard protocol for our Oncology team):

Wednesday, March 23rd - Eliana will have an MRI of her brain and spine in order to show the current state of her improvement since the hydrocephalus and tumor were present and since the chemo regimen has been completed. This will establish a baseline for future monitoring.

Sometime after that we will sit down for a surgery consult and make plans to remove her broviac. Until her broviac is removed, we will still need to report to the ER if she has any fevers because of the risk of infection.

We will watch her counts with a few lab visits and home care visits in the next few weeks.

It will take "at least 6 months" for her immune system to repair itself. We can basically treat her like a normal kid, but with the understanding that she will get sicker more often and things will be harder on her system.

Every 3 months - for the next two years - Eliana will receive an MRI to look for new tumor growth. In most cases, if the tumor is going to return, it will do so during this time. At the end of the two years, those MRIs will move to every 6 months until we've reached 5 years. We will then move to an MRI every year. I was reading on a mom's blog a while back that her family lives "from one MRI to the next". I can imagine.

Eliana will not be considered out of danger. . .pretty much ever. . .but the 5 year mark is the big one to look for. Whenever you see stats about cancer "survival rates", it speaks in terms of 5 year survival (i.e. 5 years cancer-free).

And now you know pretty much everything we do. :)

Last Chemo

2011-03-21T07:00:00.000-07:00

Eliana had her last chemo in the beginning of this month, but prior to that we went through a whirlwind of worrying about her health because the previous chemo, a bacterial infection, and an antibiotic regimen had her bowels beaten down.

Again, I was updating on our Caring Bridge, so I'll spare you the repeat. But, overall, it was a terrifying time that made me want to pull out of chemo altogether and never let the docs touch her again. Ever.

But, God's power and mercy shown through once again, and Eliana recovered beautifully. We told docs we wanted to stretch her chemo out to give her more time to recover. So, on Friday, March 4th, we started her last chemo.

The other day we were discussing finishing up chemo and Jonathan, our 7 year old, echoed what we've been trying to convey to our boys this whole time: "And it's still okay if God chooses for it to come back, because that's God's decision. And He can do what he wants. He's God!" God has truly blessed us with some remarkably brave kids!

Eliana did great with her last chemo and we were able to enjoy some sweet time at home before her counts dropped and a fever hit. Even that time went by rather quickly. We are home now and waiting for Eliana's post-chemo MRI scheduled for this Wednesday.

Good times with great boys!

2011-02-10T17:29:00.000-08:00

The boys and I decided to make this Applesauce Bread tonight. They were very excited about it!

All the ingredients. . .except the applesauce was still in the fridge. Oops.

The little bakers

Caleb trying to make sure he got all the flour out.

The breaking of the eggs. . .the part most looked forward to

Jonathan fussing at Caleb about getting the shell in the bowl.

Caleb: "That does NOT look like bread. It looks like ice cream."

Caleb: "That looks like oatmeal poop."

What the babies did while we were baking. Meh. I've seen worse.

Voila! Not exactly a loaf. . .but that didn't change the taste!

Dreaming of Spring

2011-02-09T16:05:00.000-08:00

If all goes according to the calendar for Eliana's chemo, then we should be finished her last chemo treatment on the last of the month. Of course, we will need to see how her counts return, if there are additional transfusions, fevers, etc. But, the chemo itself will be done. March will begin with no chemo.

I have so many thoughts about what life will return back to. I know monitoring will continue for the rest of her life. I know that no one will consider her "cured" until she hasn't had a return for at least 5 years. I know we still have Liam's delays to look after and Eliana may even have new issues that come about as we see delayed effects of her chemo. But, I see hope for this spring.

I picture our family being together for hours and days on end.
I picture homeschooling returning to what we planned for it to be.
I picture a homeschool co-op returning to what we planned for it to be.
I picture being able to serve in a ministry capacity again.

I want to start a vegetable garden.
I want to start baking bread on a regular basis for our family.
I want to finish the sewing projects floating in my head and learn more about new ones.
I want to focus more energy on improving my family's health and nutrition.
I want to date my husband again.
I want to be a stay at home mom again.

I know that not all of my plans will work out. I know that God will continue to show me that His plans will be the plans that succeed.

And that's okay, because I trust Him.

It's just nice to dream sometimes.

Artistic License

2011-02-09T06:05:00.000-08:00

Caleb decided that "The Wheels on the Bus" needs a new version.

Liam singing his version of "Itsy Bitsy Spider" to Eliana

It wasn't all bad news.

2011-02-08T20:02:00.000-08:00

Caleb's school notebook left on van roof by Daddy + Mommy returning from the hospital at 2 a.m. = Successful recovery

ER Visit. . .stupid fever

Excited to see Daddy

Excited to see Mommy

"I had to have surgery for this line again?!"

Ready for chemo baths for round #2


My nurse's accidentally sarcastic note about how to bathe Eliana

"Where's Eliana?"

Eliana teaching me how to count.

This is probably the most epic Wire family video of all time. It's okay to watch it over and over. Everybody does.

First Week in February

2011-02-08T19:43:00.000-08:00

This week has been insane. It's hard to believe that it's only the 8th of February because of how much craziness has been packed into this first week.

Friday, January 28th: Eliana is in clinic. Labs determine she needs a blood transfusion. The blood begins to pool up under her skin. A dye study shows the line has migrated from its original position. We are there all day.

Monday, January 31st: Follow-up in the clinic. Her counts are checked again via IV. Her counts look good. We meet with the surgical team to discuss a new broviac placement for this Friday.

That evening, Eliana spikes a fever and we have to go to the ER. Her counts are good, so they give us antibiotics and send us home. We get home at 2:00 a.m.

Tuesday, February 1st: Follow-up in the clinic at 12:00 p.m. She is given a 2nd round of antibiotics - two shots, one in each leg. We are there for a short afternoon.

Wednesday, February 2nd: We get a call at 12:00 a.m. stating that Eliana's lab culture done from her ER trip came back positive for a bacterial infection and we need to be admitted.

We get to our room at 5:30 in the morning. She is started on a round of antibiotics and another culture is sent out. Another IV.

Thursday, February 3rd: Nothing has grown in Eliana's 2nd culture. Her IV came out at 3:00 am and they had to redo it, along with another separate blood draw. Her antibiotics are giving her diarrhea.

That afternoon, additional tests have determined that her 1st culture was a form of streptococcus naturally found in our bodies, but her immune system is all out of wack so bacteria is dangerous.

She has to get another IV that night when it goes bad. Surgery scheduled for in the morning.

Friday, February 4th: Surgery goes great. Chemo begins that night at almost 7 p.m. Eliana spikes a fever and another culture goes out.

Saturday, February 5th: At 1:00 in the morning, she had her first chemo bath. The water was freezing and the nurse wasn't listening to me about it. Eliana gets cold water poured over her after waking her up and stripping her down. I try not to lose my mind on the nurse.

We get skipped for breakfast because her order still says nothing by mouth per surgery. We get a very late breakfast.

A tech comes in later and doesn't seem to know how to give Eliana proper baths for this chemo. I realize each person coming in has told me something different. I tell the charge nurse: "I need to know that my daughter is being taken care of. How can I know which way is best for her when different nurses tell me different things?" She is very sweet about it and helps us out.

I can't get a visit from my boys because Jonathan has a fever.

The doc tells me that because her chemo started so late, we can't do the infusion on Monday. It has to be Tuesday.

She is still on the antibiotics and her diarrhea continues. I make a comment about it to everyone that comes in the room.

The meal cart has stopped having Boost available for Eliana. I have to push to get it. She loses it for a few meals. She doesn't want to drink anyway.

Sunday, February 6th: After several days of telling anyone who would listen that Eliana continued to have very loose stools, I get very upsetafter she had 3 episodes today. They are going to have it tested, but need her to go again so they can send it out.

The boys come by for a short visit.

She goes again, at 10:00 p.m. so they send it out.

Eliana gets her last chemo bath.

Monday, February 7th: I struggle with nurses who don't seem to be forthcoming with the information. I finally get some Boosts.

I tell a doctor: I feel like I have to drag information out from everyone at this point.

I tell a nurse: It seems like no one is concerned about her diarrhea.

Tuesday, February 8th: Eliana's labs came back normal and her cultures came back negative! They are going to try to repeat them again today to be sure. Her stem cell infusion is due to begin around 11 a.m. We should be able to go HOME this afternoon!

She vomited 2x this morning and is now on Zofran. Her weight has plummeted this week.

Eliana's infusion went great. Then we got some surprises. The doc wants to keep her longer today because he wants to watch her hydration. And, a chest x-ray done after surgery shows her line, ya know, the THIRD one she's received, has a kink in it! I just now received this news today. Unbelievable! So far, it's working fine.

Also, she'll need to continue antibiotics at home. They are IV given and I have to learn the technique.

Later this evening, we were given the clear to go home. And we're exhausted. :)

January

2011-02-08T19:30:00.000-08:00

Playing Nurse

Waving "hi" while in the OR waiting room for surgery to make her line a double lumen instead of a single

Right in the middle of yelling, "Want down!"

Enough with the pictures, woman!

Ready for her first of many chemo baths for her high-dose chemo round #1

Andy is on speakerphone and has just told her to eat her Mac N Cheese.

A new hat from a new friend

Eliana's stem cells were taken from her back in November and frozen to be redelivered to her over 3 rounds of high-dose chemo

The clumps in between the bubbles are actual stem cells

Liam feeding Eliana's poor neglected baby.

Liam turned himself around while standing and was so excited to just lean his bottom on the couch.

Passed out in the car after a late night at the hospital

I can not get over how tall and straight he's standing! That's "Voltron" in the background. Yes!

"Cheese" I'm three years old!

Birfday Presents!

Cuddles with Uncle Chris

Caleb came with me to clinic one long LONG day

Passed out in the ER waiting for a room. . .that didn't become available until 5:30 a.m.

December

2011-02-08T12:03:00.000-08:00

Babies playing together

Eliana finished out her second round of chemo the end of November and a week later we were back in the ER for a fever.

In the ER, I told her to go to sleep. She grabbed Red Panda and rolled over.

Letting me know she was done with pictures.

Learning to tell her platelets are down by how many bruises keep popping up on their own.

Visiting with the boys!

Loving on Liam

Kissy face

New talent = Bear Crawling

Early Christmas gift from Oncology

Passed out before the Holiday Party

Reading

Sleeping while getting a blood transfusion

Back in the ER for Christmas Eve because of another fever following her 3rd round of chemo. New Christmas present from ER.

Andy started painting our room while I was away.

Celebrating Jonathan's 7th bday at the hospital.

Skyping with Grams so she could join the party.

Drunk on meds prior to her hearing test done in the OR.

My beautiful new room awaiting my arrival home!

Family Pics

2011-02-08T11:40:00.000-08:00

In November, we decided to take some updated family pics. Andy set up the tripod and our backyard became our photo shoot location. I think they turned out great!

Eliana's face cracks me up every time!

I love that Eliana couldn't take her eyes off her brothers!

"Knock it off!"

A friend said this looks like we're sharing secrets. Love that!

Finishing out November

2011-02-08T04:45:00.000-08:00

Trying to pretend they are "big kids"

Begging Jennifer for toys

Eskimo Princess

Getting upset about wet leaves

Not minding attacking me with dry leaves

Asking to learn a new chore

New bracelet - Gray is the awareness color for Brain Cancer

We lub each other

I sure hope Andy has some unedited pics of Caleb from November. :)

November - Chemo begins

2011-02-07T18:49:00.000-08:00

One last group shot before chemo begins

She handled her chemo like a champ!

Eliana spent most of the week hamming it up for every person that came in her room and then whining when they left. She is such a little goofball! Several nurses and doctors told me that Eliana was the talk of the floor. One of the oncologists that I hadn't met yet came in all excited and said, "So this is the little one I've been hearing so much about from ALL the nurses?" Later another one came in and said, "Everyone I talk to says, "Oh, I love Eliana!" and then I tell them, "Yeah, join the club!"'

It was such a joy to see her light up that floor. She is so amazing to me. I pray that she will continue to bring joy and hope to all who meet her. To God be the glory.

Checking out the playroom on the Hemo/Onc floor!

A week later, we were in the ER due to a fever and were admitted because her counts were too low.

Killing time waiting for her counts to come back up.

Falling in love with her new red panda.

Showing me she still has her sense of humor

Visiting with Daddy


and Maw Maw

and Aunt Kathy

Doing fine after her stem cell harvest

We got home Wednesday after Eliana's fever finally stayed away. We were able to have her next kidney function test while inpatient. Everything looked great! We were also able to have her stem cell harvest. It went wonderfully! The docs were able to get twice the stem cells they even needed. So, we should have no problems with moving forward without additional harvests.

We had some pretty sweet moments this week. One night I Skyped with Andy and the boys. Caleb said, "I don't want you to be there anymore." It was hard to not cry.

Eliana's day nurse (that we had for most of that week) was talking to her night nurse in transitioning/introducing her to Eliana and said, "This room is my safe haven. When everything is chaotic out there, I just come in here and it's such a high. I just see her and everything's good."

Eliana's doctor told me, "I keep thinking it must be her strong spirit that made it possible to keep collecting and do so well with the numbers." Well, it's Somebody's strong Spirit. :)

October continues

2011-02-07T12:54:00.000-08:00

This is from my Caring Bridge post on October 18th

Today has been my first day alone with all of the kids in quite some time. My mother-in-law was here until shortly after we got out of the hospital and then my mother was here for a week after our return. Andy and I had a much needed date night - which was a big blessing - while my mother was here!

Liam had an Occupational Therapy session with Early Intervention today. He is doing fabulous! It has been a wonderful encouragement for me to see the progress he has been making lately.

Jonathan and Caleb have been having fun with visiting grandmothers and are trying to adjust to all of this craziness. They are doing great! I have rearranged things with Jonathan's school to have some video-streaming teaching available for days when Eliana's chemo is giving her too hard of a time.

We are being spoiled by dinners delivered to our home from our loving church family. I can feel the pounds creeping on with these multiple batches of cookies!

We are being well cared for in more ways than I can count. I am thankful for the opportunities I have had to discuss my faith with loved ones and total strangers. I pray that God will continue to use Eliana as a testimony of his faithfulness and his mercy. He is good and worthy of all praise!

"And from his fullness we have all received, grace upon grace." John 1:16


A few weeks after surgery, Eliana is back to cruising!

Playing in OR holding before her spinal tap and line placement.

From October 22nd. . .

"Then Samuel took a stone and set it between Mizpah and Shen, and named it Ebenezer, saying, "Thus far the LORD has helped us."' I Samuel 7:12

1. The tumor was not entwined in the brain stem.
2. There were no signs of tumors anywhere along the spine or in any other areas of the brain.
3. It was completely resected.
4. It was a kind of cancer that is sensitive to chemo
5. Her ventricular swelling/hydrocephalus repaired itself and a permanent shunt has not been needed.
6. All of her cognitive and physical abilities have returned post surgery.
7. Her spinal tap revealed no cancerous cells in the spinal fluid.

We spent some time at home practicing some new skills. . .


Synchronized baby half-standing and Solo Pivoting Looking back at this video, I can really see how much her hair has thinned out from chemo. :(


In her papoose, ready for her first of many kidney function tests.

"Three times I pleaded with the Lord about this, that it should leave me. But he said to me,"My grace is sufficient for you, for my power is made perfect in weakness." Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me. For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong." 2 Corinthians 12:8-10

October begins

2011-02-07T12:08:00.000-08:00

But let all who take refuge in you rejoice; let them ever sing for joy, and spread your protection over them, that those who love your name may exult in you. For you bless the righteous, O Lord; you cover him with favor as with a shield. Psalm 5:11-12

Andy switched off with me in the hospital over that next weekend, so I could hang out with my boys!

We have had several families helping to take care of the boys during my hospital stays and I am forever grateful to them for loving on my boys!

Eliana's head had to stay at a certain level while the drain was in. This made eating rather ridiculous.

We had to wait for the all clear for Eliana's drain to be removed and for some monitoring before we could go home.

Nothing draining here!


My poor sweet girl - post drain removal

She's gone wireless!


Eliana was thrilled to be leaving!

Eliana and I came home in time to celebrate Caleb's 5th birthday on October 9th!

Okay, one more, I promise.

The evening ended with a few rounds of Caleb's new Marvel Superhero Squad game.

And many rounds of , "Caleb, you're too close to the TV. Calm down and scoot back."

Diagnosis & Surgery

2011-02-07T06:55:00.001-08:00

Update: You can read in more detail about Eliana's journey by reading through the Discovering Medulloblastoma posts.

I had been mostly updating via Caring Bridge and Facebook, but I want to blog about this in the hopes that another parent dealing with this may find it in a search. Reading other parents' blogs has been a great comfort to me at times.

In late September, after battling a few weeks of random vomiting with no other signs of being sick, Eliana was admitted to Mary Washington Hospital to check her fluids and search for a GI issue.

An upper GI study came back fine. Bloodwork came back looking like there was a possible virus. The docs were willing to release Eliana if she didn't vomit for 48 hours. At hour 44, she vomited. One of the docs mentioned ICP (Intercranial Pressure), but almost seemed scared to mention it. We were transferred to DC Children's for a "higher level of care".

Her vomiting continued and docs began to look into Eliana and Liam's developmental history. They thought maybe this was a metabolic issue. They also began to monitor her for ICP. An MRI was ordered and then delayed.

The morning of her MRI delay, she threw up 5 times in as many hours and her eyes began to bulge out, move crazy in her head and she zoned out on me quite a few times. A doc ordered an emergency CT scan.

It was discovered that Eliana had a brain tumor. She needed an emergency drain placed to combat the spinal fluid building up.

Depending on who you talk to/what you read, something like 35-50% of kids who need an EVD (external ventricular drain) end up needing a permanent shunt placed to control the hydrocephalus. Shunts increase risk of infection, something that would endanger Eliana even more as chemo began.

She didn't need a shunt.

He only is my rock and my salvation, my fortress; I shall not be shaken. On God rests my salvation and my glory; my mighty rock, my refuge is God. Trust in him at all times, O people; pour out your heart before him; God is a refuge for us. Selah . . .Psalm 62:6-8

An MRI was performed on her brain and spine. Good news: No sign of additional tumors anywhere along her spine. Scary news: The tumor was right along the brain stem. The neurosurgeon discussed with us the possibility that it was entwined in the brain stem. In cases like these, parents are asked to make the choice between removing the tumor and giving their child a neurological deficit. That night, sitting in PICU together Andy and I prayed and cried and prayed some more. At one point I told him, "There's no one else I'd rather be going through this with than you."

I posted this on FB on September 30th: Today we will sit down with the neurosurgeon who will be operating on our little girl tomorrow. He will tell us more than we want to know about the procedure to remove this tumor from her brain stem. It will be intense and frightening. I pray that this brilliant and skilled surgeon will see that though we are confident in his expertise, our Hope is found in the One who knit Eliana together.

I know not what of good or ill may be reserved for me. Of weary ways or golden days before His face I see But I know whom I have believed and am persuaded that he is able to keep that which I've committed unto him against that day.

The night before surgery, her brothers came to see her. I was trying to keep it together, but I couldn't help but wonder if she would even make it through surgery. Every time they hugged her, I wondered if it would be the last time.

And in the wee hours of that next morning, waiting for surgery to come pick her up, I thought the same thing about us holding her.

All good things come from You, O God. All that is whole in me is from You. I have learned since my infancy that all that is good, either inside or outside of me, is Your gift. Every good gift proclaims to me who You are. - St. Augustine

Sleep did not come well that whole night. I was up early reading Scripture, crying, praying, crying, praying. I knew I should be trying to sleep, but I just felt too scared to let myself.

Friday, October 1, 2010 3:46 AM, EDT
With my whole heart I cry; answer me, O Lord! I will keep your statutes. I call to you; save me, that I may observe your testimonies. I rise before dawn and cry for help; I hope in your words. My eyes are awake before the watches of the night, that I may meditate on your promise. Hear my voice according to your steadfast love; O Lord, according to your justice give me life. Psalm 119:145-149

Eliana's surgery (tumor resection) was on October 1st. Things started very early and there was a lot of waiting. I was praying for a chance to help someone else and God was faithful. A young Spanish-speaking mom was over on the other side of the waiting room. Her translator left and as she sat there, she began crying. I told Andy I'd be right back and I walked over to her. Her English was broken, but we managed okay. Her son was having dental surgery. When I told her what my daughter was having, she felt silly and told me "Oh, it's not the same as you." I told her it was okay. The fear is still the same. We talked about faith and she told me she was a Christian. She told me her son's father was not with her anymore and would not be coming today. I asked if I could pray with her and I prayed for her son. She then asked if she could pray for Eliana and she did so, in Spanish. After she finished, she told me, "I know it is going to be okay for your daughter. She will not have to come back again." She also told me that I was an answer to prayer because she prayed for encouragement and peace. I told her she was an answer to prayer because I prayed for a chance to help someone else and not to think about just me. We hugged and I returned to my family that just arrived from Baltimore.

We also had some wonderful friends from church join us in the OR waiting room. I wish we had thought to take pictures, but I don't think I will ever forget the love I felt in that room.

The surgery took over 8 hours and when it was complete and successful, we all sang "How Great Thou Art" right there in the waiting room.

The neurosurgeon was able to completely remove the tumor. He said that although it was a very hard tumor, he was basically able to peel it from the brain stem. He also believed it was a type that responded well to chemo, desmoplastic medulloblastoma. A cytology report would later confirm that to be the diagnosis: nodular desmoplastic medulloblastoma

Catching Up (Part 3)

2011-02-06T12:04:00.000-08:00

September

September started out with the usual. . . birthday parties

and temper tantrums over chores and schoolwork

We started a fun co-op with friends

and the babies enjoyed "Naked TV watching"

But then things changed

Catching up (Part 2)

2011-02-06T10:09:00.000-08:00

July (continued)

Liam got stronger

Eliana got cuter

and she got braver.

Jonathan got scarier :P

Caleb got smarter

The house got crazier :)

The babies got cleaner

August

Andy and I celebrated 8 years of marriage on the 10th!!

Liam continued to love "Toy Story"

Caleb practiced his church planting skills at Pillar

and his photography skills at CWAC

Jonathan lost more teeth

Eliana invented new ways to fall asleep

and new ways to be cuter.

I hung out with 9000+ people at a Beth Moore conference in Richmond

And we started the school year

Catching Up (Part 1)

2011-02-06T06:40:00.001-08:00

Let's see. . . the last time I blogged was May of last year. A few things have happened since then.

May

We finished out the school year.

Caleb is signing "K" to let you know he's going to be starting Kindergarten. Jonathan is ready for 2nd grade.

We also finished out the boys' first AWANA year.

June

I started leading this AMAZING study with some ladies from church

We had a visit from Uncle Mark. . .

We all hit up Red, Hot & Blue together where Eliana loved the BBQ sauce

and Liam approved of the sweet tea.

Eliana navigated us all through Shenandoah State Park.

We took a ton of pics that Andy still hasn't edited from his camera's 15 mb format that I can't open.

I snagged this one with my phone!

July

In July, we went on a big family road trip traveling to a few specific places in Kentucky. Again, Andy has the majority of the pics unedited, but I have a few of my own.

Eliana enjoyed making new friends at a hotel.

Liam just enjoyed the Cheerios

Sometimes our GPS got us lost

Eliana got frustrated with long drives

but then she got happy

Liam also got frustrated

and then he got angry at my picture taking.

Jonathan and Caleb enjoyed their kid's meal toys

And all the kids enjoyed the hotel pool :P

We visited the awesome. . .

and randomly ran into a friend from home

The kids had fun exploring hands-on exhibits

and riding a camel!

I enjoyed the Gospel-centered goodness

I don't know what Andy enjoyed, because I still haven't seen his pictures. :)

We went underground cave exploring

and met a lone knight along the road

Eliana got cold

Liam got ginormous

And the older boys dreamed big at the National Corvette Museum

Discussing future careers

Liam and Eliana hung out

Jonathan lost his first tooth

And Andy and I got fined

Trying Something New

2010-05-22T18:51:00.000-07:00

Several months ago I discovered an app called "Couch to 5k". I thought it sounded like a fun idea for a new form of exercise. I had never been a runner. In fact, I have a crystal clear memory of a former gym teacher announcing to the class during our running of a mile, "Becky could have gotten here faster if she crawled." Entirely inappropriate? Yes. Inaccurate? Probably not. Yeah, I was pretty content to stay back with the asthmatics.

So, I looked over the C25k program and thought, "Eh, I'll teach myself how to run." Up until then I was happy with Pilates as my sole form of exercise. I mentioned the running program to my sister and Kathy wanted to try it with me. The discussion turned to actually racing a 5k.

Woah, woah, woah. . .I didn't say anything about actually doing a 5k.

We then began to discuss it further. "Well, this would help us stay accountable. It would be something fun to do together. It would be 'our thing'." I soon found myself looking up the Semper Fred 5k that takes place at the same time as the Marine Corps Historic Half Marathon. Then I found myself on the phone with Kathy where we were simultaneously registering online for the 5k.

And the training began. On days when I didn't want to run, I would remind myself that I paid money to race and that Kathy would probably "yell" at me for not running. There were at least two minor muscle pulls. There were many times I wanted to quit. Even in the middle of the race What was I thinking? repeatedly made an appearance. But we finished our first 5k on Sunday. We came in at 39 minutes and it felt great to finish it. Kathy definitely pushed me more than I wanted her to, but it is a great feeling to have accomplished a goal.

We are already discussing training for a 10k. Oh boy. . .

A Big Day

2010-04-17T10:44:00.000-07:00

Eliana is getting stronger every day and I really think she's going to disqualify herself right out of Early Intervention if she keeps up like this. Yesterday, she pulled herself up to stand (and stood there for quite a while) all by herself!! I think she's a little proud of herself.

As if that wasn't awesome enough, Liam decided to make a HUGE step forward himself.

Feeding has always been an issue for Liam. As an infant we learned that he was swallowing liquids improperly and "micro-aspirating". Because of his low-tone his muscles weren't strong enough to properly control how he swallowed. He was risking filling his lungs with liquid, developing pneumonia and all sorts of complications. The solution was to begin to add a colorless, tasteless thickening gel to everything he drank. He eventually outgrew the need for the thickening gel and can now safely swallow liquids.

When it came to his food, we first had to get him to stop thrusting his tongue out in front and mashing everything with his tongue instead of using his tongue to move food to the sides and back of his mouth. We could not move him into Stage 3 foods or table foods because he was not following the proper munching --> chewing pattern that a child needs to develop to safely process their food. He was losing weight, dropping in his percentile, all because his body could not capture calories properly. We had to give him pureed foods.

Over time, this seemed to become a Catch 22. He couldn't safely chew so we had to puree everything, but he wasn't learning to properly chew because he didn't HAVE to chew because we had to puree everything. We moved from purees to chunky purees. We began working even more on his oral motor skills. Liam basically skipped the whole oral exploration stage. He found his thumb and didn't try to put toys and things in his mouth too often. Working on his oral motor skills meant using "chewy tubes" and stretching exercises to get him to begin to realize what his mouth needed to do and to help build the strength to do it. Months went by before he would begin to bite down on the chewy tube. When it finally happened, more time would go by trying to get him to understand that the same biting and chewing he did on the chewy tube needed to be done on his food as well. Biting down finally came, but then he would simply suck the food until he felt comfortable swallowing it. He would bite using the front teeth and move the piece to the back of his mouth using his fingers instead of using his tongue to move it to his teeth and chew it. He would gag and choke, tears would well up in his eyes at meals. . .all the signs of distress. Andy, the boys and I would sit down with him during meals and over-exaggerate chewing. We would give him a bite and model chewing for him. And again he would suck the food, swallow it and then imitate the chewing we were showing him. I think you can imagine our frustration. I was really beginning to wonder if he was EVER going to master chewing. . .until yesterday. On the same day that Eliana reached up and pulled herself to standing for the first time, Liam put a Gerber baby puff in his mouth, moved it to the side of his mouth WITHOUT using his fingers. With his mouth open for me to see exactly what he was doing, he chomped down over and over and chewed his food. Tears immediately came to my eyes. I could not believe my sweet little Liam was finally chewing. Andy and I must have given that boy 50 fruit puffs. He kept asking for "snack" and Andy said, "I'll give you as many as you want if you keep chewing like that." It was amazing to watch. He was so excited by our response, that when he was finally done his snack and began to drink some water, he actually chewed the water!

I will praise you, O LORD, with all my heart; I will tell of all your wonders.
I will be glad and rejoice in you; I will sing praise to your name, O Most High. Psalm 9:1-2

Eliana's 1st Birthday Party

2010-04-03T20:12:00.001-07:00

Today we celebrated Eliana's birthday with family and friends. It was a beautiful day and the party was a lot of fun.

On a special note, Eliana crawled for the first time on hands and knees last night. Her Aunt Kathy was playing with her and she crawled to get closer to Kathy. Too cute!!

Here are some pics from our fun day.

Happy 1st Birthday Eliana!!

2010-03-26T22:05:00.000-07:00

One year ago, we were racing to the hospital like some crazy scene out of a movie hoping to not deliver on the side of 95! How has a year passed already? Our precious little Eliana is such a joy. We are so blessed to have this sweet girl in our lives. Happy Birthday, baby girl!!

Princess Eliana's Latest Adventures

2010-03-02T08:56:00.000-08:00

Our little princess is bringing a lot of joy to this house. Eliana is always laughing. She has this one raspy-sounding laugh that she only occasionally does that really reminds me of my paternal grandmother's laugh. The first time I heard Eliana laugh that way, it was a very sweet memory for me.

Eliana's development is continuing at a great schedule for her. She is picking up skills in the order that she should be. She is rocking back and forth on her knees and has begun to shift her knees a little bit while rocking. She belly crawls and when she extends one hand out to reach for a toy she bends the appropriate knee in. This past week she began sitting up independently and she is beginning to get up on her knees at the little landing at the bottom of our stairs. Her babbling is picking up quickly. The day after she sat up by herself she began to say "Mama". So we've got "Dada", "Mama" and "Hi" as her actual words. She is also waving and signing "more" and "milk"! While she doesn't seem to have chewing issues that Liam has had, she does have the "wet sounds" when drinking milk. We began to add the thickening gel to her milk to see if that made a difference. It really did. So we will schedule a swallow study for her in the near future to make sure she's not aspirating.

Eliana is having visits with her Occupational Therapist from the Early Intervention program two times a month. Ms. Brenda is awesome and Eliana is thriving with her help!

Lately With Liam

2010-03-02T07:16:00.000-08:00

Liam continues to amaze us with his growth. He is such a little fighter. I feel that we are witnessing a growing testimony to the Lord that Liam will take with him through his whole life. God did indeed knit him together. We are truly seeing that demonstrated as his muscles begin to strengthen, work together better, and prepare for developing skills. I don't think I have ever been in more awe of how God designed the human body. God is already receiving the glory in Liam's life and he's only 2 years old! This is such a faith-building time in my life and I feel so blessed to be this little man's mama!

Liam is beginning to crawl on hands and knees! In part due to his watching Eliana getting on her hands and knees to rock, but also because he is beginning to trust his growing strength and try new things. It's pretty typical for kids with low tone to skip stages and return to them. Liam never got to the on hands and knees rocking stage and preferred to belly crawl everywhere. He has now returned to this stage and is working on "real" crawling and a "bunny hop" move where he uses his hands to move forward and then hops his bottom forward to catch up to his hands. Liam also pulls himself up on the couch and tv stand to knee stand. Yesterday, he began to experiment with cruising while on his knees at the tv stand.

He's reached a place in his language development where he's taking on the "sponge" stage of repeating things we aren't intentionally trying to teach him. After hearing me repeatedly call Eliana "princess", Liam now says it. We are working on building his vocabulary to two word sentences. So far he has figured out how to say "more _____" and "want _____"!

His therapy continues to go well. Liam is still seeing both the physical therapist and the speech therapist two times a month. Last month we met with the transition team that will help us move Liam from the Early Intervention program to the Preschool Age program in September. We are still not sure what he will qualify for as far as their different program options. Liam has never been diagnosed with having a cognitive delay and many of their options are assuming a cognitive delay. I'm not sure what that will mean for our available options for him. It's a lengthy process of getting things in order before the beginning of the school year, but we are to be kept largely in the dark for the majority of this time because they break the process down so much. We won't hear anything else until around April, and even then that will just be another step in the paperwork. It's strange, but we'll see how it goes. I'm a little bummed that we will need to lose our therapists that we've become attached to.

Liam also experienced his first time-out after repeatedly hitting his sister with a toy. This monumental event was captured in all its pathetic glory.

On a happier note, Liam loves "Cars"! He loves to wear his Lightning McQueen shirt and point to it saying "Keen! Keen!" He likes to line up all his matchbox cars and then drive them forward a little bit one at a time or fly them down the hall and go after them.

What's Jonathan been up to?

2010-03-01T12:45:00.000-08:00

Jonathan is our little detail-oriented perfectionist. I sometimes lovingly call him "Andy, Jr." He may look like his momma, but he definitely acts like his daddy. He is also quite sensitive and hates when he disappoints someone. That may be similar to his daddy as well.

Jonathan loves being a big brother. He is always asking to help with the babies and is disappointed when he can't do something to help. Although, I can't seem to get him to want to change diapers! He is enjoying becoming more independent because he wants to be able to do things for his brothers and sister. He likes to feed Liam or Eliana, make PB&J sandwiches for lunch or get cereal for breakfast. He is struggling with Caleb becoming more independent because Jonathan still wants to do so much to help. This applies to Caleb's schoolwork too!

Jonathan's love of math and Legos continue, so much so that Eliana's therapist has begun to call him our little engineer. His creativity comes across in his drawings or his Lego creations (or Lincoln Logs, Fiddlesticks, anything he can build with). Whenever we learn a new skill in Math he proclaims, "I can't believe I get to ____!" He sees learning (at least as far as Math) as a privilege and I love that! Handwriting is another story.

If Caleb is our little story-teller, Jonathan will be his illustrator. He loves to draw whatever he can imagine. We recently got him some drawing instruction books and he's enjoying learning to draw things he never thought he could. So, Jonathan will have the *privilege* of creating the look of our new superheroes.

One of Jonathan's recent creations:

What's Caleb been up to?

2010-03-01T12:17:00.000-08:00

Caleb is so much like me, that it is crazy. He is full on emotion. He wears his heart on his sleeve, completely. You always know what's on his mind. He loves to entertain. Making people laugh (especially when he's in trouble) is one of his favorite things to do. His mind seems to always be going a million miles an hour and he's always creating characters and stories. Many times when I was younger, I remember one of my family members walking in on me as I was "talking to myself" because I was playing out some story. He's always talking in a different voice, so much so that sometimes I actually forget what his real voice sounds like. This is just part of his non-stop creativity.

Caleb loves Cubbies! He has trouble containing his excitement each Wednesday as we get ready for AWANA. He will sometimes wear his Cubbie vest all day. He loves to learn his verses and tells me that Mr. Hunter (one his Cubbies teachers) is his best buddy. I love listening to Caleb learn his verses and talk about what they mean. We really get a kick out of him using his verses at times that are really fitting.

Lately Caleb has been really getting into school. We kind of took a step back with his A Beka K4 program and began it again in January. He's really excited about it and now is writing letters and his name in cursive. One of our next steps for school is to begin story-writing. We've decided to create our own superheroes. This is going to be fun!

Caleb loves music and wants to learn how to play the guitar. He loves to grab it and tell me that he wants to play me a song. Here's one of the first times he did this.

Untitled from Rebecca Wire on Vimeo.

Holiday Travels

2010-01-03T20:04:00.000-08:00

Some of you already know about all of the craziness we experienced in trying to get to Denver for Christmas. I thought about trying to retell all of it, and then thought it might be best to allow my dozens of Facebook updates to retell the tale. (This will also be a fun little record for us to keep!) For those of you who were following along and commenting, thank you very much. Your jokes, prayers and "oh no's" were a great encouragement to us and added to the fun of the adventure. We really did feel like we were stuck in a holiday movie. It ended up being a blast!

December 18, 2009 at 12:46 pm
Rebecca Wire is wondering how our flight is going to go tomorrow morning. This should be interesting. :)

December 18, 2009 at 4:37 pm
Flight's canceled and rescheduled for tomorrow afternoon. I don't know how that's going to happen either. Hmm. . .

December 19, 2009 at 11:29 am
Rebecca Wire is now rebooked for a flight for tomorrow evening.

December 20, 2009 at 1:15 pm
Rebecca Wire is headed to the airport. Let the madness begin!

December 20, 2009 at 4:12 pm
Madhouse!

December 20, 2009 at 4:44 pm
They gave us two seats together and two seats completely apart from one another. When we said we have two kids with ticketed seats, the guy said, "Your best bet is to negotiate seats with other passengers." Oh boy!

December 20, 2009 at 8:53pm
Flight worked out great. Some kind soul helped us all sit together. Our flight arrived late and we missed the connection. The board says no flights departing to Denver. The adventure continues. . .

December 20, 2009 at 9:12 pm
Rebecca Wire will be spending the night in Indiana.

December 21, 2009 at 9:45 am
Rebecca Wire needs our baby food and formula to multiply like loaves and fish!

December 21, 2009 at 12:01 pm
Talk about providing for our needs. Our hotel is right next to a Sams Club. They offer day passes to hotel guests. We got diapers, baby food, and formula. We packed what we could and took the leftovers to the front desk in case anyone else gets stranded. The lady at the desk told me another family just got stuck and called the hotel asking about diapers!

December 21, 2009 at 12:13 pm
Rebecca Wire just got to tell a stranded young couple that we have tons of diapers for their baby. The father said, "That's the only good turn we've had all day!"

December 21, 2009 at 2:58 pm
Playing on the escalator. The guy at Enterprise said we were awesome. :)

December 21, 2009 at 5:46 pm
Rebecca Wire is at Christmas at the Zoo at the Indianapolis Zoo!

December 21, 2009 at 10:33 pm
Rebecca Wire is watching the Indianapolis forecast and hoping we won't see snow and freezing overnight like they are saying.

December 22, 2009 at 8:12 am
This note was put under our door this morning. I hope they saw Jesus in all this!

December 22, 2009 at 9:56 am
Back on the phone with United trying to resolve new ticket errors for today's flight.

December 22, 2009 at 10:56 am
Rebecca Wire has boarding passes in hand to take us to Chicago this afternoon and then on to Denver!

December 22, 2009 at 4:24 pm
@ Indianapolis on the plane for the second try. Chicago is having delays. First time we've met a flight attendant who hates kids.

December 22, 2009 at 5:51 pm
We were supposed to fly out of here 2 hours and 40 minutes ago. Our connecting flight leaves in an hour and ten minutes.

December 22, 2009 at 5:53 pm
As we were getting off the plane for now the second failed attempt to get going, a flight attendant gave us his home number and asked us to call him or his wife at home if we get stuck.

December 22, 2009 at 6:16 pm
Rebecca Wire is drowning my sorrows in a large serving of cheesecake fantasy from cold stone!

December 23, 2009 at 1:21 am
Rebecca Wire is in Denver!!

December 23, 2009 at 3:12 am
We have our luggage that beat us here by three days, and are on our way to the house. Thank you God!!

December 23, 2009 at 3:38 am
For those of you following our saga. . .We didn't get to Chicago until almost 9 pm Central. Our flight to Denver was long gone. We checked the departures, found a flight leaving in like 15 minutes, ran to the gate, and got on standby. An awesome end to our crazy journey.

Let it Snow!

2010-01-03T19:47:00.000-08:00

There is a whole bunch to catch up on, so I'll start here. We had a huge snowstorm come right before our planned trip to Colorado. The boys were hysterical trying to plod through so much snow. We measured about 14" and some of our friends saw over 2 feet. It was fun for the kids, but dramatically altered our travel plans. That's for another post. . .

Lately. . .

2009-12-09T06:03:00.000-08:00

On November 30th, I turned 30. I vividly remember when I used to think 30 was old. :) A few days prior we met up with my Baltimore family at PF Chang's in Tyson's Corner for a birthday lunch. It was a nice time to catch up with family and everyone had a good time.

My beautiful mama and sister

Love that man!

The boys playing in the mall we would never actually shop in.

The other day, we took the van in for inspection and all piled into Andy's little car as we waited. This, of course, led to silly picture time.

How many kids can you fit into a sedan?

Jonathan's model pose

Daddy and his girl

We had Eliana's county evaluation and they determined that she needs Occupational Therapy 2X a month. The OT will work with her in several areas and if she needs more help with speech we'll determine that at a later date. Her first session with the OT is tomorrow morning. Next week, we'll have an MRI and labwork done to see if anything shows up abnormal.

Today we had Liam's yearly evaluation. He has met many goals that we had previously established, but of course we have new goals for the upcoming skills. We'll continue with his speech and physical therapy with the county.

God has been ever-faithful to my family. This has been such a crazy time of adjustment (and will continue to be as we begin to have six therapy sessions a month). I feel as though God has really been using this to draw our family closer. We have been rearranging schedules and trying to get creative with how things should go. We have come to the realization that Liam and Eliana may never "catch up". . . and that's OK. This is our life. These are our children. They both have a beautiful spirit and are a joy to have in our life. Our continued hope and prayer is that God use whatever circumstances arise to shed light on who he is and our great need for his salvation. We pray that as we move forward with homeschooling, therapy and just how our family functions in general, that our children will see grace demonstrated in our home and that they will know the source of that grace is Jesus.