a season of gratitude

"As parents you may not realize it, but somewhere along the way you tend to take your children into yourself, as if they were really yours. We forget that our children our first of all God's—on loan from us for only a season.” (my father-in-law)

If there is anything I have learned from this ordeal with Aggie so far it is this. Of course on some level we all know this is true, but it is so easy to forget as we live day to day. As I researched epilepsy and began to genuinely fear for Agnes's life, I became painfully aware of this truth again. I realized that God most certainly could take Aggie home to him- and though this would feel like an INJUSTICE beyond anything I could imagine, I would have no ground on which to stand and complain.

It is so easy to let our problems completely block our vision- like a huge black bowling ball one inch from our eyes that completely blocks our vision. Some days I let my worries about Aggie interfere with hundreds of little moments that I could have been enjoying her, making memories with her and the other children, serving and loving those around me. Instead I let fears of the future take hold of my mind- I did not think of my Father who is caring for me today and who has promised to care for me in any kind of future.

These kids of mine sure are good at helping me live in the present. We have been doing a cornucopia and adding things each day that the children are thankful for (the picture above.) I just have to laugh when I look at them: “That you Jesus for wrestle time with daddy.” “Thank you Jesus for my snuggly bed.” “Thank you Jesus for superman PJ's” “Thank you Jesus for doors.”

These kids get the picture better than I do some days! They are learning to see every little thing in their lives, right down to the chocolate milk, as blessings directly from the hand of God. They do not forget that God cares for them- all they have to do is look around!

As Martin Luther asks- who can properly give thanks to God for the blessing of one healthy hand, or one day with air to breathe? Our Father gives these things freely and faithfully, and we forget that they are gifts and see them as entitlements! Then when one thing goes wrong, we throw temper tantrums and doubt God's goodness to us.

O give thanks to the Lord, for he is good. His steadfast love endures forever.

My prayer for all of us this Thanksgiving: May God grant us eyes to see His bountiful blessings that surround us each and every day. May we see the kindness of others, the love of family, the warm turkey and mashed potatoes, and even the very air we breathe as blessings directly from His hand. May He fill our hearts with gratitude for His unfailing love and goodness.

Have a blessed Thanksgiving!

meds and holidays

A quick Aggie update:
Aggie is most certainly not thankful for her medicine. She must take it twice a day, and the first few doses were torture! She worried about her first dose for at least three hours before she needed it, to the point where she almost made herself sick. Then, the next morning, as she was bringing me the medicine (wailing all the way), she somehow shot a dose of it directly into her eye!

Each does is a little easier, and I am thankful that so far no nasty side effects are showing up. The meds do not seem to be doing much for the seizures yet, but the doctor told us it would take time. While the medicine does go right into the blood stream, it takes several days- up to two weeks- for it to reach the desired level in the brain.

The boys are having some great grandma time, while the girls and I are getting ready for our Thanksgiving trip to MI! We also got the Christmas decorations out- none of us girls could wait any longer!

A treatment plan!

We just got home from our meeting with the neurologist.

Aggie does have epilepsy, and the doctor confirmed that she has been having complex-partial seizures. The spot that showed up on her MRI is most likely the cause of it. What exactly it is (displaysia, scar tissue, or a low-grade tumor) was not able to be determined from the MRI. Regardless of what it is, it is small enough that the first line of attack is going to be medication to treat the seizures.

We start her on meds tonight. The doctor said 70% of people with epilepsy are able to control it with medication. Our goal is to find the right medicine with the right dosage to make her seizure free and side-effect free. This may be a rough road of trial and error, but we will take one day at a time and go from there.

As far as the brain abnormality- she will have to have another MRI in 3 or 4 months to see if it grows or changes at all. At least we know it is NOT a fast-growing tumor (if it is a tumor at all) AND it is in a reachable part of her brain should surgery become necessary down the road.

Although I know there will still be hurdles to overcome, compared with the pictures in my head, THIS scenario seems livable. I am now going to take a much-needed nap.

Your prayers, emails, and phone calls have held us up more than I ever could have imagined. I thank God for all the people both here at White Creek at back in Michigan that care so much about our family.

Have a blessed Thanksgiving!

"Give thanks to the Lord for he is good, His steadfast love endures forever!"
Psalm 118

A thought for the day

“People tell you to be strong- I say be weak and be loved.” Aunt Julie

Little did I know as I went to church yesterday morning that I was about to “be weak and loved” right there in front of everybody. I need to teach my dear husband to warn me when he is going to preach sermons like that- I didn't even bring tissues! (thank you Crista for sharing yours!)

Now, encouraged by the love of family, church family, friends, and God himself, we are getting ready to go to our big appointment. Thanks in advance for all your prayers today- we meet with the neurologist at 11am this morning. I will post again as soon as I can!

Dear Father, thank you for your constant provision for Aggie and her family. As we go to meet with her doctor this morning, help us to remember that she is your child, and you love her more than we do. Help us to trust you no matter what we face today, knowing that you have promised never to forsake your children and to bring good out of every evil we face in this life. You have promised peace for your children even in the most difficult situations- please graciously grant this peace to her parents and all who are concerned for her. Thank you for your great love for us. Amen.

News- sort of

We got MRI results already at 10 this morning. I was not surprised to hear they did see a little "something" in Aggie's little brain. This "something" is not in any major part of the brain but underneath (sorry I did not get the technical terms from the pediatrician). This "something" may or may not be causing her problems. It could be just an abnormality from when she developed, scar tissue from a minor infection we never knew she had, or an early tumor. As the words "Aggie might have a brain tumor" have been screaming themselves loudly in my head for a couple weeks now, this report has not really changed much in my own mind.

We are really hoping the neurologist will be able to tell us more on Monday morning when we meet with him.

In the meantime, God is watching out for us- even giving moments of joy and just plain fun in all of this. Aggie was hilarious when she first woke up from the MRI. She was giggly, forgetful, and just silly. She thought she could walk but she really could not so we had to carry her for awhile. We took her out to Bob Evans for pancakes because she was starving- not sure how wise it was to take a drunk 4-yr old out in public, but it certainly was an adventure! Josh said, "It's like Aggie without inhibitions!" I never really thought she had inhibitions, but compared to drunk Aggie- she actually uses a ton of self-control on a normal day! All the way home she talked and laughed about everything she saw. "Look a ladder.. laaaaddeerrr.... ladderladder laaaader... that's a silly word!" And then of course over and over again she said "We can't forget to pick up the boys! I love my brothers. I LOOOVE Seth. I LOVE Marcus!"

Her hyperactivity started being not so funny by the time we got home. Her siblings were glad to see her but not so sure they wanted all-out wrestling matches all night long. Even this morning she was just NUTS... constantly running people over and hurting people and dropping stuff! And just when I was thinking "AAAAAAHHHHHH why can't it be summer so she can go outside????" a friend called and offered to have the kids play with hers for the afternoon. Ahhhh... green pastures and still waters- God knows what I need!

So I had a chance to do some housework, read up on epilepsy, pay bills, and other fun things. But before I started any of that I made myself do something FUN, just because I wanted to, not because it was on any list. Marcus and I got out our nativity set!!!! Garland, lights, and all- it looks so beautiful on top of our entertainment center. And now it is snowing- I love it!

So Aggie might have a brain tumor.. what of it? Today she's doing great, and we are going to get excited for Christmas! Yes, I am full of fears and worry, and tears are usually pretty close to the surface, but God is helping me to not let them paralyze me. He reminds me to take each day for the gift that it is, and trust the future to him.

As I read that last sentence, I realize that actually doing that would pretty much be a miracle. But that's what we want, isn't it? And God can do it, for Aggie, for me, for everyone. That is what Christmas is about really.

"Lord, we believe, help our unbelief."

We made it!

Just a short note to say we made it through the MRI!

Aggie is doing just fine right now... actually a little loopy, perhaps better than fine! It was a long day, and the worst part was the IV (let's just say they had to get the tissues for Aggie and her mommy!) but we are home safe, and expect results within 24-48hours.

Thank you all so much for your prayers and encouragement!

Blessings and Boogers

I had to share this- I was just looking around online to make sure I knew where we stand as far as insurance, directions to the hospital, etc, and I found this:

http://rileychildrenshospital.com/physicians/med-sub-specialties/neur/doctors-diligence.jsp

This is the doctor Aggie has been referred to- it is so good to read these good things about him! \

When you think of us for the MRI, please pray that Aggie will NOT have too much congestion or a cough- if she does they will not do the procedure. If we have to wait LONGER ... It just won't be pretty. So, as you pray, don't forget to pray for Aggie's boogers! (or rather against them!)

“Praise be to the Lord, to God our Savior, who daily bears our burdens.” Psalm 68:19

AGGIE NEWS:
Please pray for her on Wednesday as she has an MRI- she will be sedated ("conscious sedation") Pray also for her parents as we wait for results. This is one of the tests the doctor will use to look for underlying causes of her epilepsy. We meet with the doctor next monday and hope to have a treatment plan by then. She is doing the same right now- we are all learning to cope with the frequent seizures and God is providing for our family in every way during this time. Thank you for your prayers!


“Praise be to the Lord, to God our Savior, who daily bears our burdens.” Psalm 68:19


Her episodes started three weeks ago now. First they were just strange moments of staring and acting like she couldn't hear us. Then they started happening more often, sometimes with a strange giggle, sometimes with aimless walking and other symptoms. The doctor scheduled tests, we all suspected seizures, and now we are waiting.

We did research. We noticed how exhausted she seemed all the time, like whatever was going on in that little head of hers was completely draining. We learned about different kinds of seizures, and began to suspect she has some form of epilepsy. (This has now been confirmed.) We read about drug treatments, nasty side effects, restrictive diets, and safety precautions. I began to journal the episodes: how often, how long, other symptoms, anything I could think of that might be related. I now have pages and pages of details, and I do not know if any of them are important. Still we wait.

Today she had seven seizures that I am aware of. After one of them, she wanted a hug and some “mommy snuggles” while she watched TV. I held her close to me, kissed her hair, and whispered “Jesus, please help Aggie.”

“Why did you say that mommy?” she said and looked up at me with her innocent, sunken eyes.

I willed the tears that were forming in my eyes to stay there while I rubbed her back and told her not to worry, that she just seems tired and maybe her body is fighting something. She is completely unaware that she is having problems at all- her seizures leave absolutely no trace in her memory.

She is still my little hummingbird, fluttering around enjoying as much of life as possible. She knows nothing about her parent's worries, the tests that are coming, or the decisions we will have to make for her. She does not know her eyes look sunken and tired, nor why everyone asks her if she feels okay several times a day.

Tonight I thought of baby Vivian and her parents. Her life was so short, less than six months, and for her parents it was full of worry, tests, decisions, and nights of watching and wondering And she lived her short life, every day full of tubes and nurses and tests, and every day resting in the love of her parents; hearing their voices, feeling their arms around her. I do not know what baby Vivian knew of the pain, but I am confident of this: she knew she was loved. Her parents loved her while they bore for her a burden she didn't even know she had.

That rather sums up our job as parents, doesn't it? We bear burdens for our children that they do not even know they have and could not bear alone. We care for their bodies, making nutritious meals, making sure they get enough sleep, wear warm enough clothes, keep up with doctor visits, and get lots of fresh air. We care for their minds, providing for their education, socialization, and mental stimulation. We care for their souls, by bringing them to the Lord in Baptism and feeding their faith with God's Word at home and at church. We care for them when it is difficult: when they are sick, rebellious, or in need.

Unless the LORD builds the house,
its builders labor in vain.
Unless the LORD watches over the city,
the watchmen stand guard in vain. Psalm 127:1

Unless the Lord cares for Aggie, we test and learn and care for her in vain. But He does care for Aggie, He has promised in her Baptism and in His Word. She is His little lamb, and He loves her more than I do. He bore her heaviest burden: sin and death: He cared when it hurt, when it cost His life.

Aggie is God's child. She has not been promised a life without suffering: in fact, God's Word tells us that suffering is exactly what we should expect during our time on earth. Yet, we also know that “the sufferings of this present time are not worth being compared with the glory that will be revealed.” We believe that God works ALL things, even epilepsy, for the good of His children. (Romans 8)

As parents, we are called to love our children and bear their burdens with them, just as God has done for us. Sometimes it is easy; sometimes it hurts terribly.. I am not strong enough to watch my child suffer with epilepsy. My heart cannot bear holding her while she recovers from a seizure, knowing I can do nothing to prevent the next one from coming. Aggie and I are the same in that way: we are scared, fragile, and powerless over the future. What can we do but reach out for our Fathers arms?

Just like our children, we also have a Father who bears burdens for us that we do not know we have and cannot bear alone. During these recent struggles with Aggie, I have seen God's hand every single day in the love of others. Through His other children he has provided listening ears, encouragement, strength, babysitting for the other children, and even meals on nights when I was too tired to cook. He bears my burdens---giving me the strength to share in hers.

Together Aggie and I reach for God's help, and God is faithful. He gives strength for each day, and His love drives out fear. He encourages Aggie through caring siblings, cozy blankets, and “mommy snuggles.” And this mommy does not run out of snuggles, because I know that as I hold her, Jesus holds her too. And as I hold her, I am also being held by Him who loves us both.

blood draws and fast results

Our adventures today started with the mom's group at my house, which as usual was very refreshing and encouraging. Right before the group came over the nurse called and told us we could have Aggie's bloodwork done at our convenience today, so we made plans for the boys (they went to the Beck's again) and went after the group.

Aggie has had this done once before, but fortunately she did not remember that AWFUL experience (that time it took me and two nurses to hold her down while the other one tried time after time after time to draw her blood.) She was worried of course because I told her it would be like a shot, but she is SO GOOD at making the best of it.

When we got called back she started getting worried, but then had a seizure as we were getting set up. (two minutes too early I thought! Since she can't feel anything during her seizures I thought it would be perfect if she had one just before the needle went in! But how do you explain that to a strange nurse- "Quick, poke her now- she's having a seizure- it is the perfect time!"

When she 'came to' afterwards she was confused and I think she forgot why we were there for a minute. That was actually very helpful as she was so cooperative while we got setup and they looked for a vein. Eventually it clicked, of course, and while they took the 4 vials of blood she SCREAMED bloody murder! I almost cried too! Afterwards she wanted to sit there and snuggle for awhile (still tired from her seizure).

By the time we were in the car she wanted her bandaid OFF and then worked on trying to get me to promise she would never ever ever have to do that again (no luck sweetie.) We went to Wendy's for some comfort food and she quickly cheered up. When we saw the long line I said "Look Aggie- there's a long poopy line, awww maaaaan!" Of course that was hilarious, and the shot was pretty much forgotten from that point.

Believe it or not, the doc called me about 2 hrs later with the results- it all looks good. So we are on to the MRI and pediatric neurologist, both we hope within the next week or two.

Aggie is sleeping like a baby at the moment (what a day!) and thankfully I just got up from a nap too! We are hoping for a relaxing weekend, perhaps with some Madagascar 2 and craft time and lots of naps.

news

Hello everyone!

We finally heard from the doctor.

Aggie did have a seizure during the EEG- what they call a partial or focal
seizure. She does officially have epilepsy, "temporal lobe epilepsy" to be
exact. According to the doctor, as far as epilepsy goes this is the kind to
have- it is the most likely kind to go away by the teenage years.

The next step is to search for possible underlying causes (there are a million
and some are quite scary). Tomorrow I take her for blood work, and after that
an MRI (within a week or two.)

We will be referred to a pediatric neurologist in Indianapolis after we have
some more info from the tests. From there, we decide whether or not to treat,
and if so how.

Honestly I am not surprised by this diagnosis- actually I am a little relieved
that they did find something- I did not want to be the paranoid mother that had
to insist to a bunch of skeptical doctors that SOMETHING is wrong with my
Aggie!

So we will continue to wait, and rely on the Lord for strength and wisdom for
each day. Your prayers for her and our family are very much appreciated.

distractions

No news on Aggie yet!

I am thankful that the kids provide me with so many distractions......

New pictures!

Here are highlights from the week of Halloween!

(No news on Aggie yet- will post as soon as I know something!)

updates

We survived Monday!!!!!!!!

You know, sleep depriving Aggie wasn't nearly as much fun as we hoped it would be. We tried to make it fun by saying thing like "Aggie, you get to have special daddy time tonight after all the kids go to bed! You can eat Oreos and do whatever you want, isn't that great!" She was very excited for the Oreos, but after those were eaten things got a little rough. She was ready for bed by 9, and even a trip to play in the school gym didn't keep her going much longer! She was a mess by 9:45 and they barely made until 12. Then it was my job to get her up at four. Poor kid, I don't know how many baths and showers she had by the time it was all over! She sure looked awful when we left for the test! We dropped the others off at the sitters (Beth Beck sure is one brave soul!) Then Josh and I took her to the Mariott for her EEG (the hospital still being in transition from this summer's flood)


She was GREAT for the actual test. She has to sit still while they put 25 electrodes in her hair with this nasty sticky stuff (I am still trying to get it out! I didn't have the heart to make her take ANOTHER bath when she got home!) Then they had her blow on a kleenex (deep breathing can induce seizures), which she did with great enthusiasm, and then went into an abscence seizure. I was very relieved that she had an episode during the test- the last thing I wanted after all this was for them to say 'it's nothing, she's fine!' This last week of episodes almost every two hours has convinced me she is definitely not! After that, they told her she could sleep on my lap, and she was snoring in about 30 seconds. She was very cooperative, and we rewarded her with a push- up from the gas station (the only ice cream treat to be found so early in the morning.) They told us that the neurologist would read the test the same day and contact her doctor. We are still waiting to hear anything.


God is merciful, and so we got naps before the next dr appointment- my ultrasound! As Josh said, it is a strange day when the ultrasound is NOT the highlight of the day! The ultrasound was on time, painless, and wonderfully uneventful- the baby looks perfect! I am also glad I haven't packed Marcus's baby clothes too far away- it is most definitely a boy!

He was very cooperative with the ultrasound and seems proud to be a boy (I think most boys are!) Aggie was with us- when I said "Aggie, it's a boy!" she just said OH. Later when she looked at these pictures she said "It looks like a turtle!" Josh called the school after the appointment, and the principal pulled Lorriane out of class to tell her the big news! Her teacher said she was GRINNING from ear to ear when she told the class about her new baby brother!

We are very excited. I can just imaine in 2yrs when Aggie is at school and I am home all day with THREE BOYS! I guess I am glad for the wide open spaces we have here in the country! "There's a mud hole boys, and here's a shovel- see you at lunch time!"

This picture is a little hard to make out but it is my favorite! The baby's head is on the right, and his hand is on top of his head. It looks to me almost exactly like big brother Seth when he is laying down playing with his hair (or where his hair used to be!)

This morning I asked Aggie if she had good dreams about her new baby brother and she said "I dreamed he was a turtle!"

After the test we picked up the kids from the Becks- bless Beth, she also sent home dinner for us! It was definitely a blessing- I was so tired it would have been a cereal or even a Halloween candy dinner! Krista and Megan (friends from the mom's group) also made dinner for tonight for us!

So today is recovery day and waiting by the phone day. I will keep everyone posted if there is more news. What I expect is to hear "Yep, she had a seizure- here's the next tests and the specialist you have to go to."

God is tenderly caring for our family during all of this, and we are amazed at the support and love from everyone here and in Michigan, and people we don't even know who are praying and thinking of us.

updates- finally

OK it has been ages- trying to squeeze in an update! But first- the baby pics-
Seth, Lorraine, Marcus, Agnes!
(good job Robyn!)

First and most importantly-the main reason for my internet silence! (not counting the second computer crash!) We have been on survival mode once again, this time not because of pregnancy but health concerns about Aggie. Our little hummingbird is having strange "episodes" that we have come to suspect are seizures. (complex-partial to be precise- a guess on our parts, not a diagnosis yet.) She is going for an EEG on Monday the 10th, so we should have some answers soon we hope! These episodes happen several times a day and seem to make her quite tired. I have been trying to be diligent in journaling her symptoms and keeping the doc informed. Please pray for her and for us- that God would provide a doc we can trust to help us decide what to do next (if this is epilepsy).

In other news.... We had a great Halloween trip to MI- Pam sure knows how to throw a party! We also had the odd experience of visiting our old house (which we are now renting.) I had no idea how the kids would react to that, but they were excited to see the house, impressed by all the changes, and pretty much only thought about when we would let them run into the back yard to play on the swingset! Then they asked how long until we went HOME (indiana!) It was a good sign they are handling the transition just fine!

As for me, I am already 17 weeks along and can hardly believe it! The second trimester has been great and all of a sudden it feels like this pregnancy is flying by! Next monday the 10th we find out if it is a girl or a boy! that is going to be quite a day for us!

Last night right before bed Seth fell off the ladder to the bunk bed and could hardly walk on his foot or move his hand! (I guess Superman can't fly!) Josh doesn't think he need to be seen- we think he just got some good bruises. I laid wiht him in bed until he slept- of course I fell asleep and when I woke at 10 Josh was still watching the sad election reports.

SO my goals today- since Seth so far doesn't want to walk very far, much less run and play- FIND some fun table activities for Seth and Aggie, and hope Marcus can stay out of trouble! AND get one of Aggie's episodes on camera! and wipe tons of snotty noses without gagging (both boys- yuk! and marcus likes to wipe it on me!) AND of course the usual, try not to get lost in clutter in this house, try to prevent marcus from killing himself and breaking our stuff, and so on!

I will post some halloween pics soon!