Life with the Lundgrens

Illinois in the Fall

2011-11-14T13:55:00.010-06:00

Here are some pictures from last week. Lovely time of year. I just adore Fall!

Caleb loved being up high in the tree :)

Cheese!

Luke getting buried in a pile of leaves...and loving it!

They had so much fun!

Gather 'em up and then .....

TOSS!!

And now for the beautiful colors of Carbondale........

Climbed to the top of this water(?) tower--quite the view!!

One Giant Leap

2011-11-11T00:52:00.004-06:00

One small step for most toddlers, one giant leap for Luke!!

Caleb's first steps were exciting. I'll never forget them. But it never once crossed my mind that Caleb WOULDN'T walk. There were no tears when he took those first steps. Just lots of smiles and laughter and encouragement. And actually a sigh of relief from this twin mommy who was tiring of carrying one baby on each hip. I remember thinking, "Oh, finally...Caleb is walking. Now I only have to carry one baby."

But Luke. Oh, sweet Luke. On Sept. 29th, 3 days after the boys were born, the phone rang in our hospital room. A request was made for us to come down to the NICU asap. We knew something was wrong.

"It's routine procedure for us to scan preeemies' brains 2-3 days after birth to check for brain bleeds."

Andrew and I nod.

"Caleb looks ok. Luke, unfortunately has suffered a brain bleed."

Our hearts drop.

"There are varying degrees of severity when it comes to these things. We rate them from 1 to 4. A Grade 1 bleed is the least severe, often resulting in very little noticeable side effects. A Grade 4 is the most severe. We have to tell you that both sides of Luke's brain have bled. Grade 3 on one side. Grade 4 on the other."

Tears.

"We can't really tell you for sure what this means for Luke long term. We can only say that because he's has suffered a Grade 3/Grade 4 bleed, the chances of long-term complications are greater."

trickle down.

"But no one knows for sure. The brain is an amazing thing. So, hope for the best and prepare for the worst."

I'll never forget how sad and just....strange that moment was for us. There we sat in this tiny room...with very disorganized shelves and random stacks of idunnowhat sitting in the corners. The doctor scrambled around for chairs for Andrew and me. The whole setting was just....haphazard. Like a "oh, and by the way.....your son has significant brain damage."

Anyway....I sort of digress here...

The point is, the future was pretty unclear at that moment. And for a long time afterwards.

As you know, just when Luke did start to make some progress around 1 year of age, the Seizure Monster moved in.

We sat in a different little room and heard, "This is catastrophic epilepsy. We want you to understand that if these seizures are not controlled, Luke's prognosis is very, very, very, very, very, very, poor." (and yes, he really did use that many "very"s)

So, clearly any milestone for Luke is just...well, miraculous. I mean really truly...miraculous.

On October 1st, five days after his 3rd birthday, Luke took his first steps all by himself!!

And, oh my, were there tears.

We saw it coming...the walking I mean.

Sort of.

Although, not really. We still stood there, holding our breath, wide-eyed...watching our little man take those beautiful steps all.by.himself.

Some of you reading know that exhilaration. You "special folks" who have to wait a little longer for your miracle milestones. :)

Here's a video. It's already very outdated. Luke has taken off!! I'll have to get new video footage soon.

http://youtu.be/7s9uNiQAyL0

Thank God for His work in Luke's life!!

Rocking in Grandma's Chair

2011-08-05T22:03:00.005-05:00

Our normally very independent sleeper has changed his tune the last couple of nights.

Caleb is known for announcing at nap time and nighttime, "(yawn) oh, I'm soooo tired!" and then promptly going into his room and getting into his bed (BIG boy bed, mind you) and that's the last we hear from him. I know, we're spoiled. Don't worry, Luke isn't a good sleeper at all, so it evens out.

But the last two nights, after he's in his jammies and all ready for bed, Caleb has insisted that we rock for a while. How can I say no? He's growing up so ridiculously fast. Way too fast. So, of course, I'm gonna take him up on the rocking idea. He snuggles up into a little ball on my lap and for a few minutes he really does seem like a little baby again.

Tonight, he wanted to sing while we rocked. So, we did. And when I'd stop, he'd say "More." I had to keep thinking of more songs to sing. Before I knew it, this oldie but goodie, was coming off my lips. God is so good. God is so good. God is so good. He's so good...to.... me.

I made it through the song twice before the memories overwhelmed me and I was in tears. Suddenly, out of no where, I was remembering my Grandma Hoggard. We'd rock in her green chair. Both of us snug as bugs squeezed side by side in the seat of the chair. And we'd sing.

Gosh, I miss her.

She left too soon. 11 years ago.

I know she's the happiest she's ever been. But still, I wish my boys knew her. I wish she could hold them and rock them like she did me.

Grandma loved kids. I think she taught the same 4-yr olds Sunday school class for decades. We taught it together for a handful of years. She's always tell me I didn't have to help her with the class. But I always did....because I wanted to. I loved spending time with her. And I loved watching her interact with the kids.

I miss you, Grandma. Some days, I really miss you. And other days, a certain memory will overwhelm me so unexpectedly that my heart will ache from missing you so much.

I'll always remember how you never turned down my request to rock. You would always smile, pull me up on the green chair, situate me just so and talk and sing and spend precious moments just being with me.

That's probably why no matter how busy things seem, I can never pass up the chance to rock Caleb and Luke. Cause life's days pass by ever so quickly. And little moments like these are remembered forever.

Twice As Good

2011-07-29T22:58:00.005-05:00

Spent the evening with these gals. I don't know if everyone has a group like this. Tell me, you SN families, do you?

This one was formed rather organically, I think. Actually, they were around before Luke and Caleb were ever born. But I didn't know them until the Seizure Monster moved into our house. One of our early intervention home therapists told me about another mom in the the area that she thought I would like to talk to.

I still remember that first phone call I made to Robyn (she's the one on the far left in the picture). Nervously, I dialed her number. What should I say? Do I tell her the whole story? Will she even care to know about my story? I mean she probably has her own problems to worry about...she is a special needs mom. ::Ring. Ring::

I don't know exactly how the conversation started, but I know it included something like "This is Kristi Lundgren. My son Luke is having seizures."

And then, on the other end of line....a friend. We'd never met. Never talked before. But I knew immediately this was my friend. "My son was also diagnosed with Infantile Spasms", she said.

Suddenly, I felt such peace come over me. Another warrior. Another parent who had been in my shoes.

Do you know how lonely it can be to be the parent of special needs child?

Somedays.....pretty darn lonely. Especially back then. You can't really drop your son off in the church nursery when he's having 120 seizures a day. MOPS? Are you kidding? Playdates? Probably not.

My new friend invited me to hang out with her and some of her other mom friends who have kids with special needs. So I did. (wrote about it here.)

And somehow over the last year and a half they've become like family to me. We all live crazy busy lives (what with doctors appointments, therapy, fundraisers, chasing after our typical kiddos, etc etc) we don't often get the chance to actually get together in person. But we text. And call. And facebook.

It just feels like home when we're together. Something about fighting the same battle makes you tighter than tight, ya know what I mean? All our kids are different. Different diagnoses. Different needs. Different abilities. But we all know what it's like to have a child who challenges us to be the kind of parent we never thought we could be. We know how to fight. How to pray. How to advocate. How to handle incompetent doctors and nurses. How to appreciate the professionals who are really good at what they do. We know how to celebrate everyday miracles. We know how to gracefully handle the stares of strangers and how to answer their awkward questions. We know there is always more to learn. We know God sometimes DOES give us more than we can handle...but ALWAYS gives us the grace and the friends we need to make it through.

I love these ladies!!

And will miss them soo much when we move.

Love these lyrics by Sara Groves: "Every burden I have carried, every joy, it's understood. Life with you is half as hard...and twice as good."

Thank you for so many great memories and for being there for me when I needed you most!!

Special Delivery

2011-07-28T21:41:00.021-05:00

I'm not exactly sure why I never mentioned it on here before. But for some reason I didn't. Sure, things have been busy. I don't think that's the reason though. The best reason I can give is that whenever I did sit down to write it out, I always had the thought, "It's not time yet. "The "It" I'm referring to is the Special Needs iPad Give-a-way that we applied for back in February of this year. The give-a-way was hosted over at Marissa's Bunny. Marissa's Bunny, an Infantile Spasms Awareness Blog, had been around a while. I hadn't visited the site much at all.

But another bloggy Mommy (whose son also has lived through the hell that is Infantile Spasms) told me about the give-a-way and I figured we'd give it a shot. I wrote an essay describing Luke's situation and telling why an iPad would be helpful for him. (that's a post all its own. How DOES an iPad help a kid like Luke? Ah...let me count the ways!! Like I said, a post all its own) To our delight, we were notified on Mother's Day that we had been selected as one of 40 families to receive an iPad. We were SO excited! And so amazed by Marissa's Dad (Mike) and his ability to organize something like this, all the while dealing with Marissa's seizures and upcoming surgeries.

There are really so many details (and, trust me, even the abridged version of this story is far too lengthy). But basically, the host of the give-a-way, Mike, promised to send an iPad, $500 worth of apps, and a cover. All along there was a ChipIn! box on his site and it was explained to us

that his (generous) employer was matching the donations, providing the money for the iPads.

It was all very believable. To be honest, I never questioned it. I never sent any personal information about our family to Mike that wouldn't be available on Google or facebook or our blog. I think I donated $5. I can't remember. It wasn't much, I know that. I never felt pressured to give. Truly, never felt that there was anything fishy about any of it.

(Plus, and I think this is important to note, it was another special needs family hosting the give-a-way. There are a few family blogs on line about Infantile Spasms. These people were our lifeline back in October of 2009. Our docs in town had ZERO answers for us. It's not an exaggeration to say that these families' blogs and youtube videos helped save Luke's life. Our neurologist here in town looked us square in the face and said, "Your son is not having seizures." (Idiot.)

But these families' blogs about their own children with Infantile Spasms urged us to investigate further. We knew there was something wrong. We just didn't know what. This online "family", this network of bloggers, helped us make the decision to keep searching for answers.... to get Luke to St. Louis for a second opinion. Thank God we did. You know the story. He WAS having seizures. And it WAS Infantile Spasms. You begin to feel pretty tight with these peeps. Even if they are only "online" friends. They were there when we needed them and that means a lot. So, what I'm saying here, is that there was a level of trust established there. We had no reason to suspect that one of our own would take advantage of us.)

But, there WAS something fishy going on. First, it was something about Apple's lawyers. And unfinished paperwork. Then, something about the employer. Then, supposedly the iPads

had been packaged, but not sent. I don't remember all of it. But almost all of June was correspondence filled with one excuse after another. It was frustrating. And getting to be more and more unbelievable. The stories just weren't adding up after a while.

Finally, during the first week of July, a couple of parents who were also "recipients" of the iPad give-a-way decided it was time to confront Mike and make him tell all of us the truth, the whole truth. There were no iPads packaged and ready to send. That was the truth. I'm not going to get too much into this part of it. Call it fraud. Internet scam. To be honest, I don't really know what happened. Deep down I want to believe that Mike's intentions were good, but that the whole thing, at some point, got out of hand. Who knows? I don't really want to use this blog as a place for speculation and character defamation. Hopefully one day we'll all know the truth. The whole truth. And nothing but the truth. For now, I know he's been reported to authorities. I'll leave it at that.

SO.

You still with me??

Not long after the truth came crashing down, we were notified by the two parents who had confronted Mike, that plans were already in the making to somehow make all of this right. We were hesitant to carry on with any sort of "give-a-way" Can you blame us? We had just been duped. But we decided it would be ok. If somehow the ship really could get turned around and good really could come out of all of this bad and somehow all of these kids really could get their iPads, then we were in.

The team of people trying to make all of this right are Mission iPossible. Their story is told here. They have partnered with the Gwendolyn Strong Foundation and are working now to get all of the iPads shipped, as funds are available.

We are SO blessed that Luke is the 2nd child to receive an iPad from the Mission iPossible team!! It arrived last Thursday!!

The ripping of the wrapping paper

was a little much for sensory -processing-challenged Luke. :)

Oh, it's an iPad....

Maybe this isn't so bad afterall...

Hey, look at that!

I like this!!

Figuring it out...

Daddy showing Luke how it works.

A huge, seriously HUGE thank you to the entire team over at Mission iPossible. To Heather, Ken, Darcy and Maureen and the generous donors to made this possible.....you are so appreciated!! Take a peek at the Mission iPossible site. These missions are changing the lives of special needs kids. Truly remarkable!

Holder of Miracles

2011-07-26T11:24:00.009-05:00

Our fridge has become our "holder of miracles". Maybe you remember this post.

This week we got to add this miracle.

Luke's FIRST picture!! Miss OT helped him (hand-over-hand) draw the vertical lines. The rest was all Luke, baby!! That's right. He actually grasped the marker. Looked at the paper. Scribbled on the paper. And looked at the paper while he was drawing! I know, I know. It's doesn't seem like much. But for months we've been trying to get him to even hold the stinkin' marker. Normally, it goes something like this:

OT: Luke, we're going to draw a picture today. (hands marker to Luke)

Luke: takes marker and throws it across the room.

OT: Luke, I'm gonna help you draw on this paper today.

(she continues by hand-over-handing it with him.)

Luke: either cries the entire time or reluctantly lets her help

him scribble while he looks up at the ceiling, at the lights, at the wall. Zero interest.

But this week something clicked! And all of sudden, he was doing it all on his own and loving it! He hasn't done it since. But, THAT'S OK! Walking out of therapy that day with my two-

yr old and a piece of paper with red scribbles seemed so "normal", it's enough motivation to keep on trying. And yes, I think this needs a frame!! :)

Then, there's this:

These are the letters Luke can identify all my himself!! Amazing, right??!! Love this little gadget that I know many of you probably have on your fridge too.

This gives Luke the auditory feedback he needs, plus it doubles as a fine motor activity since he has to work to get the letter to fit just right in there. And, with limited vision, it's definitely WORK for him. But, he's getting there.

It's so exciting to see him learning new things. It's slow and steady, but changes are happening. We're grateful!

A Quick Recap

2011-07-24T16:16:00.010-05:00

I just attempted to do a picture marathon of sorts to show you the highlights of our extremely busy May-June-July. But after clicking, selecting, waiting for about 17 pictures to upload on here, something went wrong apparently and more than half the pics are in cyberspace somewhere. I'm not patient enough to start again.

So, a brief recap.

May--My parents came to visit from Belgium. We had a great time. The boys were spoiled rotten and some days Caleb still expects to have a doughnut waiting for him when he wakes up in the morning. (Thanks, Dad.)

We got to see Andrew's brother land his (training) plane at the Springfield airport!! That was really cool! Rob will be flying jets for the Marines. Proud of you Uncle Rob!

We were invited to be guests of honor at the First Hand Foundation Annual Golf Tournament Fundraiser in Kansas City. Wow! Do these people know how to take care of families! We felt like royalty. Can't say enough about these kind, generous people. They are the real deal and we are so very grateful for all they've done for Luke to help him reach his potential.

We spent a good portion of this month hiding in the laundry room listening to tornado sirens. After we sat (awe-struck) and watched all of the Joplin tornado pics on TV, we realized the laundry room really wouldn't do us any good. Joplin is about an hour from here. My grandparents live there. They're ok. And so is a friend of ours who literally watched her house blow away while she huddled in the bathroom. Truly awful. Between allergies and tornadoes, Spring could easily be my least favorite season.

June--Family from Montana came to visit. That was a lot of fun!! The weather turned ridiculously hot and my poor flowers were scorched almost as soon as I got them planted. :(

We spent lots of time in the water...whether that be at the lake, at our friends' pool or just in the front yard in the little kiddie pool.

Andrew left his management job with Verizon in June, in preparation for our new adventure. More on that coming up.......

Luke started to make some great strides in therapy and even took 4 steps all.by.himself! We're still a quite a ways from him walking independently, but getting there I think.

July--We drove 27 hours one way (I repeat ONE WAY) to Montana. Airline tickets are so stinkin' expensive, so this was the only option really. Actually, though, it wasn't too bad. Andrew and I psyched ourselves up and drove through the night. Definitely the way to do it if you're road-tripping with small kids. No security gates. No panicking about whether or not you're gonna have "those kids" that cry all through the flight. No lugging carry-on baggage through the airport. No unsolicited advice/comments from strangers about traveling with twin 2-yr olds :) See, road-trips aren't that bad. Montana was great! Got to see all of Andrew's family. We found our inner cowboy/cowgirl and went to the Livingston Rodeo!! Watched some amazing fireworks and spent 6 whole days NOT sweating. :D

We went up to St. Louis for some more ABM therapy last week. Luke did well. He had settled back into some poor habits since the last time we had been there. So, the therapist focused on those areas. Mainly, loosening up his rib cage and helping him to use his core strength. Core strength is absolutely necessary for balance/walking. While Luke is SO much stronger than he used to be, he still needs to do lots and lots of core strengthening exercises. So, we're workin' on it......

As I mentioned earlier, there are a couple of pretty (ok, very!) exciting changes coming up for us. I'll update soon!!

Scratch that

2011-04-25T12:32:00.004-05:00

Ok, so this post has it all wrong. After all my fancy, shmancy diagrams and explanations of Luke diagnosis (as it relates to his eyes), we found out that diagnosis is wrong. Sigh. Two and a half years of thinking it was one thing...now we find out it's not that at all.

I fill out a lot of paperwork for Luke. I promise you the question "What is your child's diagnosis?" gives me mild heart palpations. (almost as bad as "Can you write your child's medical history on the lines below" or "Is there any other information about your child you think we should know? LOVE that question. Surely you note my sarcasm :D)
What is his diagnosis anyway? I'm his mom, I should know, right? I know I can get an "Amen!!" from all of you parents of special needs kiddos out there when I say the word diagnosis can sometimes over-simplify what is the beautiful complexity that is our children. Like once they're labeled, then we can fit them into some kind of neat box for our minds to understand. When really, we (their parents) are spending everyday trying to understand more about them and not just be comfortable with "The diagnosis".

ANYway, that's for another post.

But, up until now it's been easy(ish) to talk about Luke's visual impairment diagnosis. His optic nerves are pale in color...i.e. dead. Therefore not transmitting information to the brain...therefore vision is impaired.

Yeah, well this little test we did in St. Louis last month told us another story. The nerves are working. 100% baby! On each eye. They look pale when the doctor examines his eyes, but somehow they're transmitting all of the information to the brain.

Mmmh? Interesting. Don't get me wrong...exciting! But, interesting. His behavior still suggests he's not seeing well. So, perhaps it's still a neuro-processing issue? Meaning, because of the brain bleed he's not able to process all of the information that his eyes are taking in. It's possible.

So, the eye doctor in St. Louis called recently to tell us 1) the optic nerves ARE working and 2) we need to get him glasses...to which I responded "Huh?"

Here in Springfield we've been told multiple times "Luke will never need glasses. None of his vision issues are able to be corrected with glasses." This is the information I've been passing along for two and a half years to all of our well-meaning friends and family who ask "So, can you just get him glasses so he can see better?" Each time I explain that no, glasses won't help Luke....all of his vision issues are in the brain. His eyes themselves are fine.

Well, we went and ordered the glasses our new doctor prescribed and they appear to be helping some. He still doesn't engage visually the way a typical child does, but they do help. Easter Sunday was the first day he actually kept them on (thanks to a $1.99 strap from Walgreens) They are far-sighted glasses...mostly for his left eye. They seem to really be helping with his nystagmus.

That's "sorta kinda" the update on that. To be honest, the vision part of Luke's diagnosis is confusing. I don't ever feel like I can talk about it very intelligently. But, the doctors themselves seem to change their minds on what exactly is going on. For now, the plan is to wear the glasses as much as possible. And isn't he just so darn cute in them?

We'll go back to the eye doctor in June to talk more about various tests we can run, etc. We're really glad to have switched his eye care to St. Louis. They seem to have a better idea of how to treat kids like Luke. Say a prayer for us in these regards. Luke's taught us many things, but one of the things we've learned is that it really is up to us as parents to do the research, ask the right questions and do the advocating. And for that, we needs LOTS of wisdom and strength!!

God is with us and He gave Luke to us, so I know He'll continue to direct us.

Quiet Generosity

2011-03-15T10:43:00.003-05:00

First of all....they're the ones who made the 24 hour-ish trec (one way!) from Montana to help us take care of the boys. Andrew and I attended a Chi Alpha conference in Illinois this past weekend and childcare for the little guys wasn't provided. So, Andrew's mom and step-dad came and took care of Luke and Caleb for 4 days/3 nights. I mean, I know....grandparents love seeing their grandkids and Montana isn't just over yonder. So, in some ways it's a treat to get to take care of them. But these are TWIN grandsons. Who are 2. One with special needs who requires much more patience at times. Both with coughs and snotty noses and nighttime sleeping troubles. So, you know....not ENTIRELY a piece of cake. :))

I mean just THAT was a big act of kindness and generosity on their part.

They headed back to Montana on Sunday and ever since we got back from our trip that same afternoon, I've been finding treasures all over the house.

Another tower of diapers and wipes stacked up and hiding in the garage. (if you see my facebook statuses you know diapers have been delivered a time or two in the past. :) )

A bouquet of beautiful spring tulips on the kitchen table.

I go the pantry to get something out, and find it stocked with more snacks.

A freezer full of Elk meat!!

I pull something out the fridge and find more food in there than was there when we left for our trip.

I load the dishwasher and sitting behind the box of opened detergent, is a big, new box for when this one runs out.

I just started a load of laundry and found 2 new jugs of laundry detergent waiting to be used.

Go to reload the toilet paper holders and find a new 24 pack of toilet paper sitting the closet.

I could go on and on......

I doubt I've even found everything. Little gifts scattered here and there. Never a mention of anything from them. Never a "Oh, we left you some stuff to help you over the next few months."

Just a quiet generosity that moves me so much I find myself in tears.

Because it speaks of their love for us and ultimately reminds me of God's great love and provision. EVERY need will be met. Every single one.

I have amazing in -laws!! Not because of the little treasures they left hiding all over the house, but because they demonstrate how beautiful quiet generosity is....and spur me on to the same for others.

P.S. Elk meat recipes anyone? :)

P.S.S. A GIGANTIC thank you to Andrew's sister, Erin, and her family (who live in the same town as us) who helped so much with the boys this weekend and taught Luke new words like "Erin" :) Must get a video of this up here soon. Adorable.

Developmental Study

2011-02-24T11:46:00.005-06:00

Luke had an initial developmental study done last year at our outpatient therapy center, the Meyer Center. It's been a year, so we had another study done today to monitor progress.

LAST Year at this time, these were Luke's results--he was 17 months old at the time:

(the age ranges listed represent his "developmental age")

Gross Motor Skills: 5-8 months

Speech and Language: 9-10 months

Fine Motor Skills: 6-8 months

Self-Help Skills: 6-8 months

Height: 31 inches

Weight: 19 lbs, 10 oz

TODAY's results (Luke is 29 months)

Gross Motor Skills: 9-12 months

Speech and Language: 14-16 months

Fine Motor Skills: 9-12 months

Self-Help Skills: 12 months

Height: 35 inches

Weight: 27 pounds

He's made huge gains. I can see on paper that most of the "suggestions" they made for improvement last year, he has now accomplished.

And yet...these pesky age ranges. I look at this and just get tired. Twelve months of hard, hard work and endless therapy sessions for only three (THREE!!) months of developmental growth.

Sigh.

And they, the sweet therapists, try to encourage me......that they are just a LITTLE skewed....the scores, I mean. A visually impaired kiddo is gonna have a hard time pointing at something across the room, so he was docked points for that. And his limited vision also makes utensil feeding a challenge, so he was docked for that. And he's not real interested (ok AT ALL interested) in scribbling or coloring....and again, who knows..maybe it's just because he can't see what he's writing. So, docked points again. And since he's decided he doesn't want to sleep from 2am to 5am every night, he was docked points for that. So, I get that. Not all kids fit neatly into a sweet little "standardized test".

Still, it's exhausting.

Maybe it's the rainy day.

Or the lack of sleep.

But sometimes the thought of "How are we ever going to get Luke caught up to where he needs to be?" just makes me want to go take a nap.

I'm sure by tomorrow I'll be back to my "nose to the grind" self. Back to researching what else we can be doing to help Luke. Back to teaching him how to use a spoon, how to cruise along the furniture, how to say his ABCs.

But doggone it, Thursdays are usually our day off. The one day we actually don't have to be anywhere for therapy. So, I'm gonna put a movie in, make a cup of coffee, listen to the rain, and just let Luke be Luke today.

Meet me in St. Louey

2011-02-21T11:32:00.010-06:00

What a week! We are back home after a very long week in St. Louis. We got hit with the flu which turned out to be extremely bad timing since we had a week chalk full of appointments for Luke. Anyway, I'll spare you on those details. We're home, we made it, and that's what matters.

Here are the updates I promised.

Dr. Pediatric Neurologist: These appointments are getting more and more boring. "Still no seizures?" Nope. "So, is he doing new stuff?" Uhm, YES! "We're not on any meds, right?" Right. And don't get me wrong, boring is GOOD!

We did get to talk about sleep. Luke doesn't sleep well at night. So, we're trying melatonin to see if that helps. Up to 3mg. Luke sleeps great from 8pm to 2am. After that it's all downhill. So, we're supposed to try giving him the melatonin right when he wakes up. We'll see if this works. :- / We also talked about the fluid that remains on Luke's brain. We know he has excess fluid on his brain. We know that it's not causing any major problems (cause if it was, Luke would be vomiting, lethargic, not eathing, etc.) We don't know whether or not it's causing headaches or other discomforts for Luke. But, at this point, the risks involved with doing another MRI are more than the benefits of seeing how high the fluid levels really are in there. And if the benefits don't outweigh the risks, than it's a no-go. I'm fine with that. But, I'll admit, at some point I would like to get another look in there. We're also not repeating an EEG any time soon. The last one he had in April '10 read NORMAL! As his neurologist said, "Let's just enjoy normal for now." :)

Dr. Pediatric Eye Doctor: Ok, we love this guy!! We should have switched Luke's eye care to St. Louis long ago. Kickin' myself for not having done that. I just thought what we had in Springfield was good enough. And our doc here in town IS wonderful. But not great...especially considering the complicated details of Luke vision problems. So...in a nutshell. Luke does for sure have Cortical Visual Impairment, which is just another way of saying his eyes are perfectly fine, his brain is not. So, all of his vision problems are brain related. In addition, BOTH of his optic nerves are pale.

Basically, it goes like this. Your eyes themselves are just an extension of your brain.

So, images are taken in and travel down the optic nerves (think cables) to the vision centers of the brain. It is here that you actually "see"...or where the brain interprets the images and tells you that you are looking at a tree or a moving car, etc. etc. NORMALLY, our optic nerves are pink, alive tissue. Luke's are pale, i.e. dead. Likely, the brain bleed took place around these nerves. Or perhaps it was the oxygen deprivation at birth. Whatever the case, tissue died and so now information is not getting through the optic nerve to the brain. Still with me?

Now, when I say information is not getting to the brain, I really mean not ALL of the information. He clearly sees SOMETHING. We're just not sure what or how much. YET! The doctor ordered a Flash VEP test for Luke. This will take place March 24th. Can I just say, I am totallyexcited about this test!! Copy and paste definition from the Web. Thank you Google!

A VEP (visual evoked potential) is a test that records the electrical signals of your child’s brain while he/she is watching either a flashing light or a black-and-white checkerboard television screen. A VEP shows if the brain is receiving information.

By the end of the test, we should have a more precise answer about how much Luke sees. For example, he sees 30% out of his left eye and 10% out of his right eye. This will be great information for us to have!! If there is a big discrepancy between what each eye sees, than we will put glasses on Luke to keep the "bad eye" from shutting down completely.

So, the disappointing news was just that optical nerve atrophy (pale optic nerves) does not improve with time. I mean what's dead is dead. We had been told before that the brain can "rewire" and children like Luke can sometimes see better over time. But, the optic nerve is THE pathway from eyes to the brain. You can't really grow a new one. Although, having said that, if there is anything Luke has shown us it's that NOTHING is impossible with God. So, to be perfectly honest with you, I wouldn't be completely surprised if one day we show up to an appointment and the doctor says, "Mmmh...this tissue is looking pink. More, uhm..normal than before." Certainly, I am praying that way!!

The doctor applauded all of our therapy efforts. He said he does hear parents say, "But it seems like he is seeing better than before". (this is what we told him about Luke because compared to a year ago, he is tracking FAR better and reaching out for things and overall, "seeing better" than he did before) He explained that it's not that Luke is seeing more. He's just learning to use the vision he does have more effectively.

So, that's that. Luke also has something called Nystagmus. You'll see it in some of the videos we post of him. Nystagmus is an ocular motor issue causing the eyes to move back and forth in a jittery sort of way. Also, no cure or treatment with this. But I think it can improve over time...? I'll have to do some more reading on that.

Ok and now for the therapy update. If you're still reading, WOW! ::wink::

The therapy sessions went great. ABM is a very interesting sort of therapy. If you were a fly on the wall during a session, you'd be thinking "It doesn't look like this therapist is doing anything at all!!" It's very gentle. Very low-key. And yet, Luke was exhausted by the end of the sessions each day. And already we're seeing better movement. Better coordination. Better balance. More confidence on Luke's part. He's not as scared to move as he was before.

Pics and videos if you're interested.

Therapy, therapy, therapy

2011-02-14T12:09:00.006-06:00

I always sort of giggle to myself when I hear the words "I'm a stay-at-home-mom" come out of my mouth. If you're the parent of a special needs child, than you probably know what I mean when I say that "stay-at-home" is not exactly what we do! From Day 1 we've been on the go. The first four months, it was 3 trips daily to the NICU. After that crazy ride, it was an average of 4.2 doctors appointments every week (I made that number up....but you get my drift.) Luke had more doctors appointments during his first 12 months than I've had in my entire life. Those doctors appointments (thanks be to God!) have sort of tapered off and now it's therapy, therapy, therapy.

And I'll admit...I feel just a tad bit of pressure these days. There is just something about those first three years of life. I would impress with you some kind of fancy scientific statistic, but I don't have the time to go search for it at the moment. But I've read it enough times and, Lord knows, laid in bed at night hearing it replay in mind over and over again...."Those first three years are critical for a brain-injured child. We know that roughly 85% of the brain's core structure is developed by age 3." It's really been drilled into me.....do therapy now...do all you can. Don't stop. Catch it early. Despite his severe brain bleed, Luke does have a chance to develop new neurological pathways, new synapses...new neurons...his brain can "re-wire" and learn to see, to talk, to walk...to learn."

And so...off we go to "therapize", if you will, and do all we can to help Luke get the interactions and stimulation that he needs to grow and develop.

This desire to do more therapy is what pushed me to apply for the grant with First Hand Foundation (see last post). Because while we are getting excellent therapy right now, there were a few other options out there that I really thought would be good for Luke. But pretty pricey for a one-income family like ours and not covered by insurance (that's a rant I'll save for another day!)

Here are three therapies that Luke (and I) will be adding to our schedules:

**Hippotherapy--chose this because of how close Luke is to walking and this therapy seems to really help kids learn to walk. I also think this is an excellent therapy for visually impaired kiddos. We'll be staring hippotherapy in the Spring, here in Springfield. We'll go once a week for 8 weeks.

***Secondly, we're doing ABM therapy. We'll be traveling to St. Louis tomorrow to see Chad Estes, the closest ABM practitioner in the area. Here's a blurb about this therapy:

The Anat Baniel Method for Children (ABM) is scientifically based and the results have been validated by medical doctors. The practitioner of this method uses gentle, innovative techniques to help the brain of the special needs child form new neural connections and patterns that take the child beyond their current limitations. While it is a process, the changes begin happening right away and are often quite dramatic. This Method is a gentle, non-medical, learning-based approach. Movement and awareness are the main tools utilized for communicating with the brain, providing information the brain requires in order to form missing neural patterns. We have discovered that almost always, regardless of the specific diagnosis, the child’s brain is available for potent learning. It is through this learning process that children with diverse developmental issues can benefit from the Anat Baniel Method for Children. This method can be applied at any age; however, early intervention has generally proven to provide the quickest and most far reaching results.

There are some great videos on Anat's website, anatbanielmethod.com. All of them quite lengthy, so I didn't embed, but you can check it out if you're interested. I plan to take lots of video this week during Luke's sessions, so you can wait to see those too. We will be doing ABM therapy on Wed. Thurs. and Fri. of this week. We plan to go back for week-long sessions another 2 or 3 times this year.

**And finally, Music Therapy. Ahhh..music! What is there to say? Luke loves...ADORES music. Truly thank God for the gift of music....for all of us, but especially for the developmentally delayed and those among us who can't (yet) use words to express themselves. Perhaps, Luke has an even greater passion for music because of his visual impairment. All I know is, he likes it, he's motivated by it and we are thrilled to be able to take him to Drury University every week for Music Therapy. I'll be posting videos of some of his sessions on here soon. Until then, I know you'll love this story:

Pianist overcomes odds to win talent contest (make sure you click the link at the end to here him performing!)

A big thank you to First Hand Foundation for providing the funds so that Luke can participate in all of these therapies.

Will keep you all posted on progress!

First Hand Foundation

2011-01-15T16:48:00.002-06:00

Wanted to share some GREAT news we received yesterday. We had recently applied for a grant through First Hand Foundation to pay for some extra therapies for Luke. We've been tremendously blessed in that ALL of Luke's therapy up to this point has been paid for by insurance and/or our state Early Intervention program. All....as in 100%.

But I've been thinking and watching and learning and researching and praying....and realizing that there are some alternative therapies that would benefit Luke that are not covered by insurance. They're effective. They're scientifically proven. And they're pricey.

So, in this super-amazing mom's group that I'm apart of, there's a friend that told me about First Hand Foundation and encouraged me to apply.

We did.

And yesterday we found out that Luke was approved!!!!!

For about $3,800 worth of therapy.

We are elated and feel so, so very blessed!!

I promise I'll fill you in on the rest of the details soon. Can't wait to share what our little guys are up to these days.

Give Thanks

2010-11-16T09:42:00.003-06:00

"Give thanks in all circumstances for this is God's will for you in Jesus Christ." I Thessalonians 5:18

Love this little video...Reminds me a lot of what I've been thinking about lately. I have SO much to be thankful for this year. So many good things have happened in our lives lately. And I'm thankful for them. I can truly say that I also thank God for the nightmarish days we were living this time last year. Seizure-ridden. Zero answers from the doctors. A very uncertain future. I can thank God for those horrible NICU days when it seemed nothing was going the way it should and we were scared about what tomorrow might bring. I'm thankful for these "temporary" sufferings because they opened my eyes and heart to God's true character. They allowed us to be close....so close to our Father. I really believe there's a fellowship with Him that we enjoy during our suffering that we don't at other times. The difficult times allowed us to see each other's strength....our fighting spirits, our enduring faith, our perseverance. They allowed us to come face to face with our weakness. For when you are weak, then He is strong.

I stop and I say Thank You. For Everything. For Every Circumstance. Thank You.

Give Thanks from Element Church on Vimeo.

Nope

2010-11-02T18:51:00.002-05:00

My normally very good eater is on strike.

So, I've learned to ask what he wants before I get the food all ready and he just sits and stares at it. Almost always, he'll tell me what he wants and it's usually something I can live with.

This is the conversation I'm having right now.....

"Caleb, you want an egg?

'Nope'

"Do you want some soup?"

'Nope'

"Some cereal?"

'Nope'

"A pear?"

'Nope'

"Some cheese?"

'Nope'

"Well, what do you want to eat for dinner, Caleb?"

'UUUUUhhhhmmmm, let's seeeeee..' followed by silence.

(( Sigh )) I heart the terrific twos. smile.

Today is brought to you by the letter B

2010-10-29T14:40:00.004-05:00

Andrew kindly brought this home to me the other day....

He brought special attention to this fine print......

Don't get your hopes up, honey.

P.S. Author's note: I really am giving the B-vitamins a try. Heard great things about the energy-giving punch these guys have. I'm also going to be drinking green tea. More of this and less coffee (notice I didn't say NO coffee...just less coffee. *wink*) Lord knows, this momma could use all the energy she can get. I'll keep you posted.

October Memories

2010-10-27T16:54:00.001-05:00

4:30 a.m.

So, it turns out the 2-year old molars are as brutal as their reputation makes them out to be. At least I think that's what Luke's issue is these days. Restless nights, refusal to eat, stuffy nose, intense puppy-like chewing and biting on anything he can sink those teeth into. It's gotta be teething right? Poor guy. And the beloved teething tablets we used to use at night have been recalled. Bummer.

It's been months since I've rocked my babies in the middle of the night. But, I was just in Luke's room doing just that. And while I am somewhat on the exhausted side, I so enjoyed holding my sweet baby. Feeling his little nose on my neck. Hearing his little breaths in my ear.

Rocking and humming and giggling and thinking......and thanking..

For the past two years October has been downright awful for us.

One year ago today, we traveled to St. Louis to hear a team of doctors diagnose Luke with Infantile Spasms. "This is rare. This is catastrophic. His prognosis is very, very, very, very poor. The seizures have to be stopped, although we should warn you, they aren't easily controlled. In fact, sometimes never controlled." We'll never forget that day.

Two years ago today, we were sitting in the NICU. The emotions and hour by hour stress of those days are almost too much to even think about. Luke's perforated intestines had been raging with infection. We watched his belly swell and the skin redden. Nurses would leave his bedside in tears. Doctors would order kangaroo care, not because Luke was healthy enough to be out of his incubator to be held, but because it was likely this would be our last time to hold him. During that month also, Luke's brain bleed caused hydrocephalus. Fluid was building up in his brain and a surgery was scheduled to put a shunt in to relieve the pressure. It was one thing after another that October. Two babies the hospital, two tired parents, a team of doctors and nurses working like crazy to do the best they could for our 2 pound miracles.

And here we are....it's October again. Caleb is a tall, energetic, feisty 2-year old ready to take over the world. Luke is completing 8 months of seizure freedom. His intestines healed. His shunt surgery never happened. His vision has improved. He's army crawling all over the living room and has the most adorable belly laugh. If you ask him how old he is, he'll tell you "Two" and spats off a handful of other words. We've spent the last month eating birthday cake and going to the pumpkin patch and swinging at the park.

I've been thinking so much this past month about suffering and struggle. About how much it changes us. We want out of it so quickly. But God has something different in mind. The past two years have allowed us a closeness and intimacy with Christ that we've never known before. After all, He is close to the broken-hearted. It's allowed us to see in each other a strength and endurance that we never knew was there. It's offered us a beautiful interaction with the Body of Christ. It's given us a chance to tell others what God has miraculously done. It's given us more compassion. ...a chance to be comforted so that we may comfort others. It's given a great longing for Heaven...where all will be made new and whole and perfect.

Loving this song right now.

Life really isn't a snapshot. If we looked at snapshots from the past two years, some would seem so hopeless, so painful. But, it wasn't the end of the story. God still had so much to accomplish..and still does. Whatever you're going through, just remember, it's not the end. Press on and fight the good fight!!!

Safety First

2010-10-08T23:13:00.001-05:00

I decided to keep our boys rear-facing when they turned a year old. I had told Andrew that I did some research and that it was the safest choice. Now the boys are two and they're still rear-facing. The subject came up yesterday and Andrew asked to see some of the research I had read. I said, "Just Google it. You'll find all kinds of stuff." There's lots of convincing evidence out there. What's crazy to me, is that my pediatrician has never mentioned this to me. I've never seen any literature about it or any commercials on TV......nothing to educate parents on what to me seems like very important information to have. Maybe others of you have and I just haven't been paying attention....?

Anyway, here's just one of several videos we watched yesterday as we were looking through stuff online about this topic. Everyone has to make the choice for themselves. But, I think everyone should at least be told what the research shows.

**You'll see clips from the dummy crash test in this video. That's what convinced me!! Luke and Caleb will be rear-facing until they weigh 35 pounds. (unless I can find a car seat with a higher rear-facing weight limit!

Pay It Forward

2010-10-07T12:12:00.003-05:00

I just got back from the grocery store. At the checkout counter, the customer behind me came and stood at my side and said, "Could I have the honor of paying for your groceries today?"

I smile and say, "You don't need to do that."

"But I want to," she says.

I agree and my eyes start to tear up. My cashier is a sweet middle-aged lady from Eastern Europe. Overhearing our conversation, she looks at me over her reading glasses and says, "Let me tell you something. This is why I came to this country."

I'm standing there looking at the items being scanned...diapers and meat...one of the more expensive grocery visits of the month.

The lady behind me comes over again and puts her hand on my shoulder and says, "I've had two miracles in the past two days. My husband has been declared cancer free and so has my friend. I just want to pay this forward."

I'm just reminded again how aware God is of our needs. There is no end to His faithfulness!!!

Thoughts

2010-10-05T16:22:00.003-05:00

To Everyone who follows this blog, my apologies.

Initially, this seemed like a wonderful idea. This blog writing stuff I mean.

Initially, as in.....before mommyhood got CrAzY busy.

It's always been busy I guess. I mean there are TWO of them and only ONE of me. I'm not sure what exactly happened except that nap time isn't what it used to be. And nap time used to be mommy time. {grin}

The thought has crossed my mind that most of you who read this blog are probably my friend on Facebook and so perhaps this isn't necessary. Why have a blog if you're not going to post?

But, I can't do it. Can't NOT have this blog.

It's for family. It's for friends far away and friends close by too. It's for me. There are no baby books started. :( Just a day planner that's jammed packed with therapy sessions and doctors appointments and play dates...and somehow I've managed to scribble in a few things I'd like to remember....like "Caleb's first tooth" and "Luke said Momma today" Even though it seems like I could never forget, I know I will. And so, these blog entries serve as reminders of those kinds of things. I write also for the strangers who happen upon this blog. In fact, maybe mostly for them. I've been a 'stranger' before......browsing through the intimate details of someone's blog who I'll (probably) never meet. But we shared something in common....twins or the NICU Nightmare or seizures or raising a special needs child or our Christian faith...... And I've found myself hanging on their every word. Finding information. Finding laughter. Finding Hope. I trust my entries will serve the same purpose....for someone, somewhere who might happen upon this blog.

So, I have some writing to do. :) Little by little, I'll get caught up.

For now, Happy Fall!!! It my favorite time of the year....I love it.

Sharing The Journey

2010-07-17T11:15:00.002-05:00

I've had the privilege of connecting with some other families in the area who are raising children with special needs, many of them similar to Luke's challenges. When I say "connect" I mean mostly, chat on Facebook or over the phone or on our blog sites. Most of them, I hadn't yet been able to even meet in person.

Tonight I got to hang out with this...may I say...EXCEPTIONAL group of moms. Wow. What a great evening!!

It's always an amazing feeling when you can rest in the company of someone who walks your same journey.

Growing up as a missionary kid, I had some great friends. Some American. Some Italian. Some international friends from just about everywhere! There was nothing quite like hanging out with another missionary kid though. I can remember so clearly how freeing and :::sigh::: just 'burden-lifting' it was to be with another kid who was living my reality. I could relax. Let my guard down. I could finally stop answering stupid questions like "So what language do you guys speak in Italy?" and have a real conversation instead. I could just BE. Be myself and not have to explain this crazy (yet very enjoyable!) life that I was living.

When I entered my teaching career, I realized again how wonderful it is to have friends who just know. There's nothing like a fellow teacher friend. She understands that your work day doesn't end at 3:30. She knows that the stack of papers to grade never goes away. She, more than anyone else, knows that teaching isn't about just passing along information, but figuring out how each child learns and that's NOT an easy task. Fellow colleagues understand the complete exhaustion that comes along with teaching elementary children. The challenges, the frustrations, the inexplicable JOYS of teaching that keep you coming back year after year.

And now, once again, I'm finding myself resting in the presence of moms who just know. That's it....they just get it. There's no need for explanation. What bliss!! I guess I didn't realize how much time you spend e-x-p-l-a-i-n-ing when you're the mother of a special needs child. It's all for good....family and friends want to get inside your world.....doctors and nurses and therapists all need to know nitty-gritty details. Strangers and passer-byers will always have their questions and comments. It's not that any of this is bad. I'm so thankful for such a supportive community who WANTS to be a part. It's just...well, work. Sometimes, it feels like so much work. But not tonight. Tonight was just one special-needs mommy in the presence of another. No need to explain a diagnosis...or therapy regimens, or medications, or progress, or lack of progress. These are moms who understand the fears that come along with raising a child with so many needs.....who understand the work load, the worries, the frustrations. They Just Know. They know what it's like to go to bed feeling guilty that maybe you didn't do enough today. That's the question that always haunts us. Enough. Did I do enough today to help him be all that he can be? Have I researched enough? Are we doing enough therapy? Am I doing this whole thing RIGHT? These moms know that old friend, Grief, that comes around every now and then. Though time (and Jesus!) makes things better, there will always be that grief for what could have been. The grief you feel when you look at your weekly schedule and wish your son could just be a regular 'ol kid doing regular 'ol kid stuff instead of hours of therapy and doctor's visits. They're the moms that know what a miracle is. I'm talking about the everyday miracles. Not walking on water miracles. The other ones that most mommies miss. These are ladies that understand what it's like to be so overwhelmed at times at the task set in front of us. But, like me, they wouldn't trade it for the world. Cause these special kiddos are teaching us more about life, more about love, more about God than we even dreamed possible.

And when you meet another mommy who is on this same sort of journey, there is nothing quite like it.

P.S. If you are a parent of special needs child and have happened upon this post, I encourage you to check out exceptionalfamilytv.com. You will find weekly episodes featuring families around the nation raising kids with special needs and a whole host of resources available to you. I think you'll find it very encouraging to connect with others who walk this same road.

Do You Hear What I Hear?

2010-07-15T19:57:00.002-05:00

F-i-n-a-l-l-y got into an ENT about three weeks ago. My suspicion was correct and about 5 seconds after the doc looked in Luke's ears, he said, "Oh, we need some tubes in there!" I was one happy mamma. If he hadn't recommended tubes, I had plans to persuade him in that direction. :))

Luke failed the hearing test in both ears. Actually, both ears have so much fluid that neither ear drum is moving at all. Thankfully, this hearing loss should all be resolved once we drain those suckers TOMORROW. Surgery time is bright and early in the morning, which we are totally fine with since most 21 month olds aren't too keen on pre-surgery fasting. ;)

Will keep you updated on how things go. This is surgery #6 for Luke, so I'm actually feeling pretty calm about this whole process. (Is it terrible that surgery is old hat to us?! Ha!) I'm just thrilled for him to finally get some relief. And with his vision already being limited, having normal hearing again will, I'm sure, be music to his ears. :smile:

Now You're Talking

2010-07-12T11:06:00.003-05:00

I'm not a big talker by nature. Perhaps it all goes back to the beginning, when my big sis felt it was her obligation to answer for me.....all the time.

"What's your name?" "Her name is Kristi."

"How old are you?" "She's three."

Before I could even start to answer, my sister was ready to talk on my behalf. :)) Although, I'm pretty sure even without a talkative, big sis I never would have turned out to be a chatty cathy.

But, along came Luke and his visual impairment and those are now my instructions. Talk. Talk. Talk. Talk so much that you should be tired of talking by the end of the day. Describe in detail everything going on around him. Every sound. Every movement. Every object. Every smell. Every texture. I didn't realize how hard it would be for me to do this!!! Of course, with every small child, you should be chatting constantly, to expand vocabulary and build a strong foundation for healthy communication skills. But this is different....more like a running commentary. All.Day.Long.

I think I mentioned on here before that a local school, Drury University is staring a children's center for the visually impaired. Thank the Lord!! Cause quite honestly, services for blind/VI children ages 0-3 was pretty lousy around here before this amazing program started.

We've learned so much already. Luke recently had a Functional Visual Assessment (FVA). As you can imagine, it's not easy to figure out exactly what an infant can see. No chart reading here! There are generalities like "legally blind", but that doesn't really help you interact with your child. But an FVA can give you a pretty good idea of exactly what your child can and cannot see. With the skillful observations of a trained teacher of the visually impaired, you can learn all kinds of things!!

What we've learned has been encouraging and discouraging all at once. The less exciting news is that Luke doesn't really see a whole lot. Honestly, I thought he was seeing more than he actually is. We've learned his left field of vision is his best functional vision. We've learned he has more than just light perception. He sees bright colors and large objects. He is seeing something, he's just not seeing it well enough to really learn from it, if that makes sense. 85% of what infants learn is through visual processing. Since we have Caleb who is a typically developing child, we observe first hand just how MUCH babies rely on vision for information. Caleb is constantly watching and mimicking our actions. He hears a new sound and he turns to find what is making that sound. He picks up objects and waits for us to tell him what it is, so that he can repeat the word and add it to his vocabulary. He looks at books and points at pictures and again waits for us to tell him what he is seeing. Even language development depends on vision. As we say the words, I see Caleb looking intently at my mouth to see just how I'm able to make each sound. Then he copies it. Soooo much learning early on in life is done with visual processing.

Visually impaired children don't have that advantage.

It shouldn't have been a big surprise then when the told us visually impaired children are, on average, 6 months behind schedule. That's without any other "issues". Right off the top, 6 months delayed.

So that's where all this talking comes into play. We have to be his eyes and help him explore his world by TELLING him what's around him. What he hears. What he feels. What he tastes. Where we're going. What we're doing. Etc. Etc.

The encouraging part of the assessment was just simply that Luke is already adapting quite well. (which is why we thought he was seeing more than he actually is). He's already learning how to use his other 4 senses to gain information about the world around him.

He's much more aware than he's ever been. He's reaching out for things more. He's less agitated and more comfortable in his surroundings.

We're so thankful for the services he's receiving and all the help we are getting as parents. More updates to come this week.....

For now though, I'm off to do some talking with Luke. :) It's only midday and I'm already tired. I SO don't have the gift of gab!

I've been tagged

2010-07-03T10:13:00.004-05:00

A friend from my high school, Diane (Long) House tagged me, so guess I'm "It". :)

Background: Diane and I went to the same high school in Valley Center, KS. I grew up in two places....Valley Center, KS (population 6,000...?) and Rome, Italy (population 5 million). Pretty much my life was interesting right from the start. Ha! You couldn't get more different than Valley Center and Rome. Complety different worlds. But, as the Lord would have it, our missionary lives offered us just that.....living somewhere in between eating at Burger Hut and driving by the Coliseum so many times you barely glance out the window to look at it. Anyway, after...oh gosh....TEN years, we went back to Valley Center about three weeks ago. Andrew had never seen this part of my life, so it was pretty neat to show him my high school, the houses we lived in, our church and all the places that were a part of my childhood. It was a great visit!! Strange in some ways. It's just weird to be gone for so long and then revisit all the places that at one time were your life. We got to see lots of old friends while we were there....the kind of friends that you can just start having a conversation with...as if you had just talked with them last week, when in fact it's been years since you've talked. That's a pretty great feeling.

And thanks to Facebook and email and blogs.....you can so easily keep up with everyone now!

That's how Diane and I reconnected.....and we found that though years and distance have separated us, we share a lot in common. We're both mommies of twin boys. We both have a son named Luke. We both like to to blog!

So, back to the game.

Tag and I'm It. Here goes it....

1. What's my staple meal?

Well, we always have sourdough starter in our fridge (that's been in the (Andrew's) family for years and years). So, we can always do sourdough pancakes! Omlets. Stir fry. Those are the basics we usually fall back on if nothing else is planned.

2. What do you want to be when you grow-up?

A follower of Christ. Still madly in love with Andrew. A mother who has been faithful and diligent with the responsibility of parenthood. A loving and supportive daughter and sister. A best friend. Working with university students full-time. Still connecting with school-age kids too at some level, cause that love never goes away. Hopefully living near mountains or in a place that isn't so dang hot.

3. What book are you reading at the moment?

Ha! Uhm...let's see...The Rhyme Time Bible for Toddlers, I Love You Through and Through, Go Dog Go!, 1 Zany Zoo, Teaching Motor Skills to Children with Cerebral Palsy and other Movement Disorders, some book on how to read braille.....

I don't make a lot of time for reading for fun at the moment. I'm reading Strong-Willed Child. And just last night I stole Andrew's current book while he was off brushing his teeth. It's called Four Souls and it looks amazing. Realistically, I probably won't finish either of these books before summer is over. It's just my life right now. :)

4. How do you relax?

After the boys are in bed, I usually will skim through my current issue of Parenting or look through the Sunday paper adds....or watch a favorite show that was DVRed (probably months ago), Facebook, reading blogs, writing blogs. Sometimes the most relaxing thing is to load up the boys, grab a 79 cent junior frozen yogurt twist cone from Braums (my FAVE!) and just drive. Well, Andrew drives and I just get to ride and ahhh.....relax!

5. What color are your interior walls?

We have these 5 colors through the whole house. Chocolate brown, carmel-ish brown, yellow, brick red, blue, and blue with green and white stripes.

6. What is your guiltiest pleasure?

Chocolate. It's pretty unsafe for me to even be left even alone in the house with any kind of chocolate stash. And Starbucks. Guilty, because who really should pay 4 bucks for a stinkin' cup of coffee??!! Could seriously feed a lot of hungry children with that amount of money.

7. What time is bedtime/get-up?

UGH!!! Bedtime is too late.... midnight maybe. As my friend Jill told me, "You stay up so late because the silence is addicting!" So true!!! The boys are in bed religiously by 8. You'd think I could swing a 10:30 bedtime, but no.....the silence draws me in. :)

Get-up: 7:30 or so. Although today was 6:30 for a walk/run. Want that habit to continue.

8. How long do you spend reading blogs?

Some days, no time at all.

Other days, an hour.

It just depends. I follow about 8 blogs regularly.

Time to tag two other people:

Amanda: a sweet bloggy friend who has been a co-worker, a fellow NICU parent, a prayer warrior and a good listener.

Kimberly: A fellow twin mommy who I promise helps me keep my sanity.

Jill: A great blogger and friend. Mother of two boys also, which alone makes her SUPER, but I've always admired what a great mom you are, Jill!

TAG, YOU'RE IT!!!

100

2010-07-01T17:39:00.003-05:00

The most exciting news this past month.....

June 8th we celebrated ONE HUNDRED DAYS of seizure freedom!!

And now, we're on Day 124.

I don't think a day goes by that I don't remember what it was like to count. Count seizures. Always tallying. Always keeping "the notebook" handy to record each horrifying cluster.

And it's never far from my mind....that this isn't everyone's reality...seizure freedom, I mean.

So, for all of those still fighting. My heart still hurts for you. Still fights alongside you. Most of all, still believes with you.

MIA

2010-07-01T16:58:00.002-05:00

Boy o boy. The blog gods are probably angry. My last post was over a month ago. I promise I have many good reasons.

Sleep deprivation.

Grandma and Grandpa Hoggard in town.

sUmMeR!! (who wants to sit inside and look at a computer screen?)

Therapy, therapy and more therapy.

Road trips.

Father's Day.

Date nights (thanks, mom!)

Watching World Cup games.

Weddings, baby showers, going-away parties.....

Two really cute boys who are just so much fun....

And, I'll admit....a looming sense of overwheldmedness. So many things to blog about, I don't even know where to start.

I think most of our "Followers" (how weird is that term??!) on here are also Facebook friends, so most of you have probably at least seen a few pictures that I mangaed to upload this month.

Anyway, I hope to get caught up soon. I may have to post a little something everyday......

'Cause there really is a lot of great stuff happen' around here.

For now, just wanted to let you know that my MIA status has been for good reason!

Sleepless in Springfield

2010-05-29T17:14:00.001-05:00

I've been making lots of runs to Starbucks lately. My sister-in-law blessed me with a generously loaded SB gift card for my birthday.
So, you know, I feel a little less guilty spending a gift card than, say, uh...grocery money. But I've never done that. *wink*

What can I say?

::Yawn::

If you're a Facebook friend, you know sleep has been hard to come by around here.

Two words: Ear Infection.

If you've been there, done that....you know just what I'm talking about.

FINALLY, after 9 (yes, NINE) weeks, four antibiotics, several trips to the doctor, many tears, lots of screaming, and several trips to Starbucks, and countless sleepless nights, I think Luke is on the mend.

We're still going to see an ENT though, because honestly, I think tubes might be his answer.

For the past two nights, he has slept 7-8 hours straight. Relief. Our boys are usually such GrEaT sleepers. They easily sleep 11 to 12 hours without making a peep. The past several weeks took me back to the beginning....those "newborn nights" when you're up every hour or two. All.Night.Long.

In the midst of all this, Luke's actually had some great things happening. I'll get around to updating you on all of that....soon hopefully.

Fly the Friendly Skies

2010-05-23T13:55:00.000-05:00

We recently embarked on our very first airline travel adventure with two kids in tow. Last summer we pulled out of our Nixa driveway and headed to Beaver Falls, Pennsylvania. It was a 15 hour drive and fairly uneventful. My parents were with us so perhaps the 2:1, adult to child ratio made things seem much more manageable.

In any case, I wanted to just make a few comments about our trip. So many of you were helpful in passing along travel tips. Thought I'd share what worked for us and what didn't.
Overall, it was a good trip. And we'll probably do it again sometime......like in 3 months....for my sister-in-law's wedding in Florida. :)

First I should say...flying, in general, is not what it used to be. So kids or no kids, the whole process is just a hassle anymore. And expensive...increasingly ridiculously expensive.

If you are traveling with younger kids, here are my DO's and DON'Ts

DO:

* use a back-pack as your carry-on.
* pack that bag very strategically with outside pockets full of must-haves like pacifiers, antibacterial wipes, small toys, a snack or two, your driver's license and boarding passes.
* check a stroller curb side.
* bring your child's favorite blanket, lovey, or other snuggle item.
* bring a book that you normally read to your child at bedtime. (to trick them into thinking that it's time to sleep!)
* make sure ALL liquids are in ONE spot when you go through security. They tore apart my strategically packed bag because somewhere in some pocket was a container with liquid in it than I forgot all about.
* bring lots of snacks, especially ones that aren't too messy. (fruit snacks, string cheese, granola bars, raisins)
* borrow or buy new toys for the trip. Nothing fancy.... some things from the dollar bin will do. Stickers are very entertaining and easy to pack. :)
* bring a change of clothes for baby AND for you (just an extra shirt for you would probably be fine)
* bring a couple gallon-size ziplock bags for soiled clothes.
* get an extra shot or two of espresso when you order Starbucks during your layover.
* ask to board early (I was surprised this wasn't offered each time...sometimes you have to ask for it)
* wait to exit the plane until after everyone else is off (if your layover allows)
* be prepared for perfect strangers to offer you unsolicited advice : - /
*expect other perfect strangers to be absolute God-sends, placed in your path to help you along and tell you everything is going to be ok.

DON'T

* get your yourself all in a tizzy. Your kids will pick up on your nervous, flustered state and act out. Go with flow and remain flexible.
* fight with your spouse. By God's grace, Andrew and I did really well. We remained calm, worked as a team and still loved each other when the trip was over! Ha!! You need each other to stay sane through this traveling process. :)
* put anything in the overhead compartment that you're doing to need during the flight.
* expect to sit together as a family. There's only one child oxygen mask per row.
* forget to look around and see that many, many other families are doing exactly what you're doing!
* be surprised that the flight crew isn't as helpful and kind as you would think they would be (yep, there's a story there, but to save Delta's reputation, I'll keep my mouth shut and leave it at that)

Other thoughts....

*Kudos to Salt Lake City for their many play areas scattered throughout the airport. Caleb LOVED these! It was a great chance for him to burn some energy between flights.

*The concept of a Family Restroom is a genius idea.

*I'm really thankful we haven't said "Bye-Bye Binkie" just yet. They were life-savers during take-off and landing.

Brain food

2010-05-13T17:46:00.002-05:00

Luke's ketones finally measured as just a "trace" on Monday. That means he is weaned off of the Ketogenic Diet and can start eating normal portions and more carbs and proteins.

Boy is he a happy camper.

He absolutely loves regular 'ol milk and guzzled it down. Our budget is going to love it too! At $14 a gallon, that heavy whipping cream was getting pricey.

It was amazing to see how quickly Luke "perked up" after just one meal of eating enough to feel full. He was so happy....almost giddy.... to be able to take more bites!

Though it may sound very 'natural' to just change the way you eat, the Ketogenic Diet is far from natural. Our brains are wired for glucose. Did you know glucose is the only fuel normally used by brain cells? Forcing your brain to burn fat instead can be great for controlling seizures....but not so great for mental alertness, concentration, energy, etc. The diet is very strictly controlled and monitored. Luke was getting some carbs...very few. Just enough to keep the brain happy-ish. But I'm pretty sure Luke's is happier now. :-))

So, officially he was on the diet from Dec. 7th until May 10th. Five months. Still no sign of seizure activity. Truly pray we never, ever see another one. Ever.

I'm so excited for my little boy! And nervous. Never heard of anyone going off the diet after only 5 months. But, the docs in St. Louis have been great and assure us that this is the "normal" course of action. So, I'm trusting them on this one. For those of you who have been up close and personal with the Big Bad Seizure Monster, you know how the fear it creates just kind of lingers....Maybe one day, someday....they'll be back. The seizures I mean. For now, I'm clinging to the One who is able to calm every fear and trusting that Luke is healed of this epilepsy.

Photo funnies

2010-04-28T11:36:00.002-05:00

We got a picture in the mail yesterday and, boy, did I get a good laugh.

Alright, so our church scheduled photo sessions for a new picture directory. I totally dropped the ball, so we were left with the 8:50 PM time slot. Yep. And the boys go to bed (religiously) at 8 PM. You can see where this is going.

Andrew had a board meeting that same night. So I was flying solo at home. Bathe boys. Iron shirts. Dress boys. Feed boys. Get self dressed and looking presentable. Gather toys, pacifiers, sippy cups...and whatever else I can think of to make this go as smoothly as possible.

We get to the church and, sure enough, they're running behind. Finally at 9:30 PM we hear, "Lundgren family". At last!

Like a good mommy of a special needs child, I think ahead and bring one of Luke's favorite musical toys, hoping that if the photographer uses that, Luke will at least look sorta, kinda in the direction of the camera. We got all settled into position. Both boys are fussy. Bright lights, loud photographer, lot of commotion = bad combination for a visually impaired child.

As the poor photographer is up there waving his arms like a chicken and flinging around his stuffed flamingo (or whatever it was), I'm trying my best to explain to him that Luke can't see him and, if he would please use the musical toy, maybe things would go better. But alas, he's up there screaming "Luke. LUUUUUKE!!" Reminded me of the stupid (sorry) Americans that would come visit us in Italy and would just shout louder in English to the waiter what they wanted to eat. If you just speak slower and louder, magically your words will translate into Italian and they'll understand you perfectly. *wink*

Then, he was all proud of himself and said, "Oh, I'll know what I'll use. Watch this..all kids love this" And he gets out this bottle of bubbles and starts blowing them around. ? "How else can I say this?", I'm thinking to myself. Secretly, I wanted to scream..."If he can't see your bright neon stuffed animal, what makes you think he's going to see bubbles floating around??"

We make it through. (translate: the photographer finally realized we were a lost cause) and head out. The boys were more than ready to leave. So, I leave and Andrew sticks around to look at the results and select the directory picture. He comes chuckling towards the van and I know what that means. The pictures are terrible and he had to just go with whatever. :))

Quite an experience. We are clearly NOT studio picture kind of family. We wouldn't be anyway.....we don't have a single one. Well, except this lovely free one that just came in the mail. But especially now that we have twins....one of whom is totally unimpressed with the picture-taking process!

When I opened the package yesterday, I laughed out loud for a good long while. Andrew and I are saying, "Keep smiling. Keep smiling." Caleb is saying, "Uhm, I'm supposed to be in bed right now" and little Luke appears to be checking his watch and yawning as if to say, "Oh brother! Are we done yet?!!"

I love my family!

Mothering a Child With Special Needs

2010-04-27T12:57:00.000-05:00

It occurred to me today why I haven't tackled that master's degree yet....

And, that I could almost qualify for a degree in..oh...let's see.. so many things. Premature birth, pediatric neurology, optometry, gastroenterology, Ketogenic Diet, pediatric physical, occupational and speech therapy, developmental specialist.....

Admittedly, on most days while the boys nap, I do regular 'ol stay at home mom things. Laundry. Load dishwasher. Shower, if I'm lucky. Clean the high chairs. Clean UNDER the high chairs. Facebook. Unload dishwasher. ...you know what I mean.

Today, instead, was spent educating myself on visual impairment and learning about resources available for Luke here in town. I am tremendously blessed that the "classroom" is my very own living room and these dear educator souls come to me, instead of me loading up two babies and going to them.

Missouri School of Blind sends someone out twice a month for an hour session. I'm learning all kinds of things. From the complete anatomy of the eye, to various diseases of the eye, to brain function, to levels of visual impairment. For the record, you cannot imagine what is happening in your brain right now just as you are reading the words on your computer screen. It is seriously amazing the complexities of the human brain and how much has to go "just right" for all of us to be able to see and interpret images. Wow!

While all this is valuable information, I've been longing to find something, someone to help Luke in regards to vision therapy. There just simply isn't a lot around here...surprisingly enough. Not that Springfield is any kind of huge metropolis but we do have better than descent medical facilities and you'd think vision therapy wouldn't be hard to come by. (Once a child turns 3, they qualify for public education which, of course, would provide for services related to visual impairment. But, before the age of 3...not too much available)

So, I was downright elated to find out through one of my fellow special-mommy friends, whose son is also visually impaired that Drury University is starting a Center for the Visually-Impaired!!!
Today, someone from the university came for a home visit to find out more about Luke's needs and to share with me all that is going to be available to him through this new center. Awesome!! Luke will benefit so much from this. Yes, it only adds to his very full weekly therapy schedule, but that's ok. :))
I was very impressed with the gal that came out today. It sounds like they've really got their heads together and are striving for excellence as they meet the needs of the visually impaired in this area. How exciting!

The boys were great and napped during both of my "classes" today. Such good boys. :) So, the master's degree will wait. For now, mommy-hood is keeping plenty busy learning all kinds of things. And I wouldn't have it any other way.

Day 50

2010-04-19T11:11:00.001-05:00

Wanted to get back here to fill in some details.

We're still soaking in the warm, giddy feelings that those words "It's normal" evoked in us two Fridays ago. See previous post. God is so good and, if I didn't say it before....I'll say it now. We confident this is nothing short of a miracle. We see God's hand at every turn. Giving us wisdom to choose the Ketogenic Diet. Even leading us TO the diet option (via Google search...hey, God can direct however He needs to!), allowing Luke to respond as well as he did, Luke's brain experiencing a "phenomenal" recovery...at least as far as seizures are concerned. God be praised!!!

So today is Day 50 of seizure freedom.

Luke's doctors decided to wean Luke off the diet since he experienced such great results. It's a slow wean...decreasing the fat intake ever so slightly every 10 days. The one side effect that Luke suffered from on the diet was poor growth. He grew taller, but lost 3 lbs, which is a lot in baby world. So, I think that's one of the reasons that they are wanting to wean him this quickly. (Side note: If you're reading this and considering putting your child on the Ketogenic Diet, please know that Luke's weight loss is NOT typical. Luke had a large section of his intestines removed when he was a month old. His weight loss is probably more related to malabsorption issues than anything else. So, don't be alarmed or let that hold you back from trying this treatment.)

What's going on now then...other than weaning? Well, basically the same. Therapy, therapy, therapy. As the doctors said, the epilepsy piece of Luke's puzzle is solved for the moment. But there are many other pieces to consider. Most significantly, is the brain bleed and respiratory distress he suffered at birth. The boys were born on Sept. 26th and on Sept. 29th, we found out his brain had bled.....a lot. (There are specific reasons why the bleed occurred....long story for another time) They need to look at the MRI again, but from what they can tell the bleed was near the vision center of his brain and also near the part of the brain that controls motor development. Makes perfect sense since Luke is visually impaired and very weak in his gross motor skills.

What is the best thing to do? Of course, keep praying for miracles. And then, therapy!!!
Children with brain bleeds can experience very different results. Some are disabled for life.....constrained to a wheel chair, cognitively impaired, and unable to do much at all independently. Others go on to walk and run and attend university and lead fairly normal lives. The hard part: Only TIME will tell what side of spectrum Luke will be on. There is SO much even the experts don't know about the brain. But they do know that therapy is crucial....that the brain can "re-wire" itself...that the parts that are healthy can take over for the parts that are damaged. So, that's we're doing. Working very, very hard to get him all the possible therapy, equipment and resources he can possibly get.

The kind of seizures Luke was having were of the "horrible, awful, catastrophic" variety. They literally halted all development from Sept. '09 to Feb. '10. That's why we are SO thankful they stopped!!! In this way we are encouraged....that at least the "electrical storm" has subsided and maybe Luke's brain can start making healthy connections again.

I feel like I should say...please ask any questions that you have. Whether you're a long time friend or just "window shopping" on the web and happened upon this site. We will answer any questions you have and are not offended by any of it. So, please ask away and don't ever worry about saying the wrong thing. :-) Had someone ask me at church a few weeks ago, "So, is Luke gonna be... like.. strapped to a wheel chair for life?" Uhm... ok, admittedly, not the most tactful comment I've ever heard!! But, I was totally fine with it and it helped me realize that in their own way they were trying to understand my son and I appreciate that....a lot. (By the way, I just smiled and said, "Well....maybe. Then again...maybe not. We just have to wait and see.") Luke's taught us, oh my goodness....so many things. Among them....being patient, learning to wait, and being ok with unanswered questions. :) We've asked them all...the questions, I mean. Many times. Does he have cerebral palsy? Do you think he will walk? Can you tell how much he can see? etc, etc. ETC. But, alas, we are always told, "We just have to wait and see." Luke is such a joy. We've learned to do therapy, PRAY, work hard, research, research, research.....do more therapy, PRAY again....but in my midst of all that, never to stop simply ENJOYING Luke...for who he is, for who God made him to be. He is, like all of us, God's creation and we celebrate that!!

We sure appreciate all of your prayers!!

Normal?

2010-04-09T23:13:00.000-05:00

By now, most of you I'm guessing have heard our wonderful news. How do you prepare yourself for the words, "Your son's EEG is phenomenal. It looks really great. It's normal." Normal? What can I say, after being the mom of a special needs child for 18 months now, "normal" is hardly a word I recognize! :-)

I'm exageratiing just a bit. But, ya know, Luke....well, things haven't been exactly normal for him.

So, honestly sitting here in my living room just 36 hours ago, I was doing my little "self-talk" pep talk for our trip to St. Louis. Saying basically, in so many words "Well, it won't be a normal EEG. I mean he's only been on the diet 4 months. The studies show the EEG usually doesn't normallize until after 6 months. Plus, he had a severe brain bleed....they already told you his EEG may NEVER be normal...ever, even if the seizures do go away. But it surely has to at least be improved. I mean he is learning new things and these huge clusters of seizures have gone away..." Anyway...on and on I went, just trying to prepare myself for...well, I don't really even know, but certainly not what we ended up hearing today!!!

Luke's been seizure free for 40 days now. Last time he had an EEG though, the docs in St. Louis were explaining to us that at times, Luke was seizing, but there was no outward demonstration of that. They had him hooked up to the machine and a video camera on him at the same time. So when the EEG showed seizure activity, they would look to see what Luke was doing right at that moment....and, well...nothing much...just laying there. This left me feeling very apprehensive, wondering if he was actually having seizures these past 40 days and we just weren't seeing the evidence.

THANK GOD, that's not the case!! I will write another post explaining some more of the details, but for tonight (and mainly cause I'm physically and emotinally exhausted after such an exhilirating day) suffice it to say, there is NO SEIZURE ACTIVITY going on....no potential seizure activity going on. It is ....normal.... and perfect and ...."phenomenal". Luke's had a dozen or more EEGs in his short life (how sad that I've lost count!) and this is the first time it has been normal.

All the way home from St. Louis (ok, minus the 20 minute power nap) I kept thinking about the verse in Ephesians that says that God is able to do more....abundantly more. The New Living Translation says,

"He is able to accomplish infinitely more than we would ever dare to ask for or hope."

Wow. Isn't that the truth!? And to think I would have settled for just an "improved" EEG. God had more in mind than I even dared to hope for!

~Kristi

Are you talking to me?

2010-04-06T10:16:00.000-05:00

Well, Spring is HERE!!! The sun is shining, the trees are blooming and I've spent the last two weeks trying to breathe.....literally...crazy allergies. It's far worse this year than I ever remember. The boys also came down with a Spring cold, so between wiping noses, sleepless nights and lots and lots of sneezing, time's been slipping away and I haven't been able to write any new entries.

I have a a list of about 10 things that I really, really need to get done today and since the boys are napping, I should be tackling that list.

But I just wanted to write a a quick entry about Caleb and his ever-expanding vocabulary. He never stops talking!!! All day long! Parents as Teachers came last week and I was supposed to make a list of how many words he knows now. I was only allowed to count words that he actually uses without direction....or without us saying, "Caleb say ____" and him just repeating it. I asked the PAT gal how many words he should know by now and she said around 8...maybe 10. So, I started to write down his words and easily got to 20!!! Here's the list:

Mama
Dada
bottle
eat
please
ouch
no
eyes
ball
balloon
Bible
shoes
bye-bye
night-night
baby
teeth
mouth
yummy
Hi
Yay!
hot
Go, Dog, Go
keys

So proud of our little man!! The Parents As Teachers gal was thrilled. :) We got to talking about the boys and how they came 11.5 weeks early and all the complications that were involved. It was another opportunity to share about the miracle of life and all that God has done for Luke and Caleb. We talk a whole lot about all of the miracles in Luke's little body. But, equally amazing is how far Caleb has come.....starting out as a 2 lb 11 oz baby....suffering from Twin-to-twin transfusion. But, today you wouldn't know his fragile beginning. I wanted to cry as the PAT gal said he's not just caught up, he's ahead of where he should be!! THANK GOD!!

Here are some other things he can do

* Point to his nose, eyes, ears, teeth, hair, belly, and toes.

* Makes these animal sounds: Bark, meow, moo, baaa(sheep), pig snort, quack.

*Follow these simple commands: Take it to the trash, Go get your blanket, Go play with your toys, Go find your book. That's off the top my head....there are many more.

It's so exciting to watch him learn new things every single day. He's like a sponge, soaking everything in.

He was weighed and measured yesterday: 25 1/2 pounds, and almost 33 inches tall. He's growing up so fast.

Really need to get some video uploaded. I'll try to work on that!

Bliss

2010-03-19T01:14:00.000-05:00

Hello All!

You may notice that the tone of this blog may be a bit different than you're used to reading here. That is because the author is different. Kristi has invited me (Andrew) to write before, especially given the title of her, er rather 'our' blog. Until now I have not taken her up on the offer. The occasion? Our anniversary!

Kristi and I are celebrating our 4th year of marriage! I almost wrote wedded bliss, but that would not exactly be accurate. We have certainly not had four years of bliss. If I had known what I was going to experience in my first four years of marriage I would have thought twice. Before you start getting angry at me and feeling sorry for Kristi, please let me explain some of the not so blissful things I'm referring to.

About two months before we married, I lost my job. Then I decided it would be a good idea to get married, start a new job, move and buy a house in a two week timespan. Our wedding day was awesome, and we were happy simply because we were together. However, cramming all that I did into those two weeks was probably not the best idea I've ever had. It didn't exactly help us to experience much bliss-even at the start of our marriage when everything was "supposed" to be nothing but bliss.

Eventually things calmed down, and bliss did come our way. Suprisingly, I can't remember too much about that year and a half. All I can say is that we grew closer and had too much time on our hands. I know this because we spent way too much time fighting. At least we also had the time to make up...hence bliss! :)

That bliss is also partially responsible for the next season of not so blissful events. I am sure that most of you know the story...

"Suprise, we're pregnant!"

"Suprise, it's twins!"

Uneven fluid levels

Baby in distress

28-week hospital admittance

28-week delivery

2lb beautiful boys in NICU

PDA that wasn't closing

Brain bleed

PDA closed!

Hydrocephalus

Shunt surgery scheduled

Shunt surgery cancelled

Seizures

NEC

Surgery 1

Surgery 2

More seizures

50 days- Caleb home

One baby home, one in NICU

Thanksgiving

Christmas

New Year

Surgery 3

Balancing NICU, work, and home

130 days- LUKE HOME!

Dr.'s appointments

Therapy

Growth

Development slows

"Startles" appear

Happy 1st birthday!

24-hour EEG

St. Louis Children's

Infantile spasms diagnosed

Drug decisions

Seizures increase

More decisions

Ketogenic diet starts

Seizures continue

Lots of poop

18 days without a seizure!

...and that about brings us up to the present. Call me crazy, but bliss does not seem like the most appropriate word to describe this season of our lives. As it is with the truest and deepest human experiences, all words become extremely inadequate descriptors.

When I think over the events of the last two years, instead of words, I see thousands of snapshots. Moments captured forever in my mind. Many with intense emotions tied to them. Some with fear, heartache, and disappointment. Others with wonder, joy, and peace. Most with a confusing mix.

Almost all of them with one common character: Kristi.

I don't think anyone ever really knows the magnitude of what they are saying when they say, "I do." Two little words with such enormous weight. We didn't use the classic sickness/health, better/worse vows four years ago, but the commitment was essentially the same: "I'm with you, no matter what."

"No matter what" can happen a lot faster than I ever realized when I made that committment. I have experienced far more in four years than I ever thought possible.

I never thought I wouldn't get to cut my child's umbilical cord.
I never thought I'd hear people ask "Are they twins?" so many times in one day. (Some day I'll get up the nerve to respond, "No, they're triplets." and then scream in horror as if I'd lost one.)
I never thought that I would be so excited to see my son poop the right way after pooping into a bag for months.
I never thought that the same diet that would decrease his seizures by 90% would also cause him to have "blow outs" several times daily. (Thankfully, Kristi has had to clean up exponentially more of these than I have. I'm going to nominate her for sainthood the minute I have enough time to fill out the paperwork!)

Although I've been casting most of these experiences in a not-so-blissful light, I would be foolish not to mention all of the good that has also come out of this season that I never thought would be possible.

I never thought I could experience so much elation and joy even in the midst of severe heartache.
I never thought I would feel the presence of God simply by holding my child for the first time.
I never thought I would laugh so many times in one day.
I never thought I would cry tears of joy after seeing a picture of my son standing up against a couch next to his brother.
I never thought I would enjoy reading the same book over and over and over and over and over again.
I never thought it wouldn't be a chore to change a diaper.
I never thought I wouldn't cringe when I heard a baby cry.
I never thought I would see God do so many miracles in such a short time.
I never thought it would be so much fun to be a dad.

Most of all, I never thought I would have such an incredible woman with whom to share all of these experiences (that I never thought I would have). I don't know anyone more hopeful, giving, graceful, or helpful, and she does it all with a simple, elegant beauty. I am so blessed that she is the one that will be with me "no matter what." I couldn't ask for a better friend to live life with - even the un-blissful parts.

I was being totally honest earlier when I said I would have thought twice before I married Kristi if I had known what we were going to experience. On second thought, now that I have lived with the decision for the past four years, it was the best decision I could have made. If there truly is such a thing as wedded bliss, it must come from cherishing the fact that you have someone to share all parts of life with. In that sense, it is entirely accurate to say that I have experienced four years of wedded bliss, and I look forward to many more.

Wanna see somethin'?

2010-03-14T20:25:00.020-05:00

Three months ago I wrote to a handful of close friends. It was Dec. 11th, 4 days after Luke started the Ketogenic Diet. This is what my email said...

"I promised God that I would truly rejoice in every victory and CELEBRATE without fear that tomorrow I might be mourning again. Do you ever feel that way? Thinking to yourself... "Do I get happy about this?....or will that only make the disappointment that much harder if things go downhill again?" Well, I decided that is no way to live. And being "cautiously optimistic" is perhaps not being optimistic at all. Mmmmh?? Enough of my random thoughts. The point of this is share with you, my prayer-warrrior friends, that today Luke was seizure free. Nothing. Not one. So, in all honesty, there must be some fear still in me cause I'm not brave enough to put this on my status, or on my blog...or even call my family. Somehow putting everyone through a potential roller coaster ride just doesn't seem right. But I didn't think you'd mind. :-) Cause you're strong like that. ;) And I DO want to celebrate!! Thank you for praying and for sharing this moment with me."

Sure enough, Luke seized the very next day and it has been well....yeah, a roller coaster ride in some ways. Of course, we're used to this kind of ride......you remember, right? The whole 130 days in the NICU. That was a crazy ride.

Anyway, friends what I want to show you is this.........

::Huh?::

That's right....this.

THIS, you guys....THIS is not just any calendar. This is the calendar I use to record Luke's seizure activity.

Did you see it??? Scroll back up there if you need to. You're gonna want a good look.

:-)))))))) That's right. There's nothing on it!!!!!!!!!!!

October, November, December, January, February......those are all marked up. But not March.

I was wiping off the counter today and that calendar caught my eye, and I was.....well, my smile was W--I--D--E.

Specifically, Luke has been seizure free for 14 days now. 2 weeks. You gotta be seizure free for 2 YEARS before you're really "seizure-free". (reminds me of when we had to wait 5 years before my dad was declared really, truly "cancer free". What's it been now, Dad? 15 years?). So, we have a little while to go yet. And, we still have to get a picture of Luke's brain. We'll go back to St. Louis Children's in another month for an EEG. And the EEG will really let us know what's going on up there. But as far as we can tell....no seizure activity.

Every good gift is from God. And these past two weeks have sure been a gift!
And if there's anything Luke has taught us, it's to just stop, and appreciate each day for what it is, without worry or fear of what tomorrow will bring.

Will we be celebrating when Luke has been seizure free for 2 years? Oh yes!!!!!

But whether it's 2 years or 2 weeks......both are reasons to be thankful. God is so good!

I think Luke's pretty happy about it. Here he is on Day 14 of seizure freedom.

One of these days I'll have to show you all the things he's beginning to learn now that the seizure monster is moving out. They're small things to most of you. Not to us. To us, they're huge. When seizures are wreaking havoc, erasing learned skills and keeping you from learning any new ones, you appreciate every. little. thing. Ah well.....Since you're already here, I might as well show you one thing he loves to do now.....

Where's Luke?



   Wheeere's Luuuuke?

Peek-a-boo!!!

Simplicity

2010-03-10T15:42:00.001-06:00

"...Mark this: Unless you accept God's Kingdom in the simplicity of a child, you'll never get in." Luke 18:17 (The Message)

We received a very special package at our home last November. The story begins with my Aunt Sharon and Uncle Duane, who serve as the Children's Ministries Directors for the North Texas District. Uncle Duane had attended a children's conference in Minnesota last Fall. During the conference, the children were invited to simply rest and soak in the presence of God and afterward encouraged to share what they thought God might be saying to them. Later the next day, some of the children were asked to draw pictures of what God had spoken to them. Uncle Duane said it was an amazing thing to see the children respond to the presence of God.

A few weeks later, after my uncle had returned home to Texas, he felt impressed to share Luke's needs with the leader of this conference. Luke's needs were shared with this group of children at Park Assembly in Minnesota. Their children's pastor explained some challenges that Luke was facing and then they spent time praying specifically for Luke. Afterwards, they were given an opportunity to write down any words or pictures that they were given during that prayer time.

You'll see why were so touched by these letters and pictures. You'll also understand why some are tear-stained. We opened the package and read each one. I can say in all sincerity the presence of God filled our living room that day. It was all so simple, and yet so anointed by the Holy Spirit.

The letters and pictures couldn't remain in the package.

They were pulled out and read over and over and over again. We have framed a few of them to hang in the boys' room, as a reminder of God's Word and His promise.

We've endured some very difficult days in the last 4 months. You can't receive news that your son is diagnosed with a rare, catastrophic epilepsy disorder without having your world crumble. The diagnosis came at time when Luke already seemed so fragile...even without epilepsy. We were already facing a Grade 3 and Grade 4 brain bleed resulting in significant fluid on Luke's brain, ramifications of intestinal surgery, visual impairment, developmental delays, a feeding tube, a weakened immune system.......only to be followed by those frightful words, "Your son has Infantile Spasms."

Enter the children of Park Assembly in Minnesota.

They heard about Luke, as I said, through my uncle. This is what they had to say....or rather, what they sensed God was saying to us about Luke.

Hi, my name is Austin and I just wanted to tell you God loves you and that I am praying for Luke. This is God's heart and this piece of God's heart is going out to Luke.

God is going to heal Luke!!! I am praying for you and I hope you get comfort from God. Healing power is being released for Luke to heal. God loves Luke and Luke's parents and he wants them to be comforted because Luke will get healed.

Hope is always there! The sun will shine at just the right time.

Dear Family of Luke,

My name is Michelle Asare. When you get this prayer I want you to say it.

Dear Heavenly Father, I pray that you'll come over Luke. Cover his body with your blood. We cancel any plan of the devil right now in Jesus mighty name. We pray that Luke has no more sickness. Fire right now go away. Come over him and heal him. Amen.

I'm praying for you Luke. get better soon!

(I love the picture of God lifting weights, saying "This is a sinch!"

And, of course, the sun with sunglasses on.) :)

So, here they hang on the wall.....as daily encouragement.

I put a couple more on the fridge. I don't believe in a "clean" refrigerator door. :)

God will heal Luke.

The Father of God will heal your son completely.

(Can you guess which word is my favorite in this picture? Completely.)

The other day as I was preparing one of Luke's ketogenic meals, I opened the fridge and glanced at the pictures hanging on the door. I thought, "mmmh...I never would have guessed when I hung these pictures up, that part of Luke's miracle would literally be in the fridge." Certainly as far as seizures are concerned, I truly believe our miracle has been the ketogenic diet..... so thankful that God gave us the wisdom to choose this treatment and that Luke's body has responded as well as it has.

Maybe one day, I'll be able to thank the kids of Park Assembly in Minnesota in person.... To hug their necks and tell them how much it means to us that they are praying for our Luke.

I have a whole bunch of kids to thank......all over the world. From 2-year olds to tweens...they're all praying. I can't tell you how many times I've been told, "My kids pray for Luke every single night!" There are stories of kids calling parents back into the room at night "because we forgot to pray for Luke, Mom!" My cousin's children took a recent list of prayer needs we sent out and divided it up amongst themselves so that each area is prayed for everyday.

We've been so touched by these constant, fervent prayers. They mean the world to us. I can't wait to share all of this with Luke and Caleb one day. To show them how much kids matter in the Kingdom of God.

I know despite all the miracles we've already seen, there is more to come.

We simply ask.....simply trust....simply wait for a complete work of healing in Luke's life.

Good News, Bad News

2010-02-26T09:19:00.000-06:00

A quick Keto update for you. I'm thinking mostly of the other new Keto mommies following our journey (and others who may happen upon this blog in the future)

Luke is at a 3.75:1 ratio now.

About 3 weeks ago, we noticed he was consistently have his clusters (grouping of seizures that come in waves of anywhere from 20-80 seizures in a row....each seizure only last for 2 seconds) in the early morning hours. Seizure free all day, plagued by seizures at night.

Soooo.....the plan was to start getting him up at 2am and giving 2 ounces of heavy whipping cream, in an attempt to get him through the night without seizures. We were successful. Good News: Luke went 10 days straight without any seizures (at least that we could tell).

All was well, except that Luke was increasingly drowsy during the day. Getting up for 2 ounces was turning into an hour and half affair, and it just seemed he was really missing his long 11 hour nights that he used to enjoy. Therapy sessions weren't going well because of how tired he was.

I had heard from other Keto parents that they had been successful at increasing fat intake at dinner time and also giving a high fat bedtime snack. "Perfect", I thought. Luke gets the extra boost AND gets to sleep all night. I just made this change two nights ago.

Bad News: Luke had a large cluster at 5:30 this morning. 80 seizures.

And, of course, I'm kicking myself for messing with what was actually working.

Obviously, we're going back now to a middle-of-the-night feeding.

Thank you for your continued prayers.

Though discouraged, I have to remind myself how much better off we are now. When Luke was diagnosed with Infantile Spasms (exactly 4 months ago tomorrow), he was having thousands of seizures......and we never had a break. The plagued us every. single. day.

We don't deal with that reality anymore.

Luke is slowly making progress....though it's s-l-o-w....it's progess. And that's enough to keep our hope alive.

Whole-Hearted Devotion

2010-02-17T14:48:00.001-06:00

About a year and a half ago, Andrew and I were camping in the lovely mountains of Montana, brainstorming baby names....not one, but TWO. It's a good thing we didn't have two girls or they may still remain nameless.

But boys names were easy for us. We decided very quickly on the name Caleb.

::Whole-hearted, Faithful, Devoted::

I love the description of Caleb we get in the Bible. What an incredible man of God. When everyone else was shaking in their boots and allowing themselves to be overcome by fear, Caleb faced it head on. Moses sent out men to explore Canaan and all of them came back saying that while it had delicious food, the land was filled with inhabitants who were much too powerful and cities that were too large. It was Caleb that "silenced the people", saying, (my version), "Seriously, guys, we can do this!" Caleb and Joshua went on to give a motivational speech in front of the people, reminding them of all that the Lord had already done for them. Didn't really work.....the people were hardly convinced. Instead they talked about stoning Caleb and Joshua. But God saw what was going on (He always does) and told Moses, (again my own version).."The rest of these yahoos will never see the land I promised them"
Numbers 13:24 "But because my servant Caleb has a different spirit and follows me wholeheartedly, I will bring him into the land.." As you read through the whole story, you can't help but see how pleased God was with Caleb and how, in the end, He rewards him greatly for it. Caleb had such admirable determination and FAITH in the promises that God had made.

Recently, I've been noticing how much our Caleb's name really suits him.

It all started at the beginning, you know. This whole-hearted, fearless......shall we say...stubbornness. The boys were growing right along there inside of me. Other than some concerns about fluid levels, everything seemed to be going great with their health and development. I had to go in every Wednesday for fetal monitoring. I'll never forget Wednesday, Sept. 24th. Baby B (Luke) looked perfect on the ultrasound....did everything the doctor wanted him to do. But Baby A (Caleb) just wouldn't stop with the hiccups. We waited and waited....and waited some more....till finally the doc decided to have me come back the next day to just check on Baby A, mainly his diaphragm and breathing.

The next day came and without a second thought I went back to fetal monitoring to do just that...check on Baby A. Instead, it was Baby B that really needed our attention. Overnight, in less than 24 hours, Luke plummeted. They couldn't find anything other than a heartbeat...no movement, no breathing....no response to stimulus.....nothing. I was rushed off to Labor and Delivery and the rest, as they say, is history. We waited a few more hours, then overnight and then on Friday, when we couldn't wait anymore, the doc came in and said, "We're taking them today. We can't wait any longer. Baby B isn't going to make it if we wait."

In 30 minutes flat, the boys were here. Way too early. I'll always remember thinking, "It's just not time. It's too early."

Just as they suspected, Caleb came out breathing and screaming and kicking, but Luke was in major respiratory distress.

Caleb

Hours later, my OB came in to my room for a chat. "If we had waited any longer, Luke wouldn't have made it". "It was the hiccups," I told her. At a whopping 2 lbs, 11 oz Caleb had already saved his brother's life. My mind instantly went back to the Wednesday before when we were sitting in fetal monitoring thinking, "That stinker just won't stop.....hiccup, hiccup, hiccup" If he had, they would have sent me on my way, with an appointment for the following Wednesday....and as the doc said, Luke would never have lasted that long.

Luke

We bought the book 'Bringing Up Boys'....a fantastic book, I'm sure. It's sitting on the shelf because 'The Strong-willed Child' has taken priority on my reading list. Sometimes, I just want to pull my hair out. How could one LITTLE guy have one BIG, STRONG will. Caleb knows exactly what he wants. Tears are shed, tantrums are thrown and well.....you parents know how it goes. One thing is for sure, Caleb wanted Luke here and he did his part to make it happen. I'm grateful. And prayerful that Andrew and I will do all we can to guide him and shape him.....and discipline him....like every good parent should do. But when those tough toddler moments come and it's a battle of the wills, quietly I'm asking God to help me shape, but never break that strong will. It will be used for great things one day...it already has.

Thank God, thank God, thank God for strong-willed hearts! Where would this world be without "Caleb" hearts?

Our little man has a strong will ((((wrapped up)))) in ooey-gooey sweetness. He is PURE JOY! He loves giving kisses...sometimes three or four in row. Right after a sloppy kiss, he'll head butt you, just in case you forgot he is 150% BOY! He smiles, he claps, he squeals when anything new is learned. It's an adorable expression of satisfaction at what he has just accomplished. He loooves to eat and loves his milk. He adores his daddy and increasingly wants to be in his arms whenever he gets a chance. He loves to jump and climb and give high-fives. His new word is "OUCH!" and he uses is often for any tumble or coffee table collision....or head butt. Caleb loves his cell phone and will "talk" the day away. I wish I knew who he was talking to. :-) He can't get enough of books. He'll pull out his favorites and scooch his way back, back, back until he's found the perfect spot on your lap and then look up at you with those big eyes as if to say, "Well, let's get reading."

He's into everything! He is endlessly entertained with the TV remote, pulling all of the wipes out of the container, emptying his drawers, a kitchen bowl and spoon, mommy's jewelry box, a roll of toilet paper, ripping up my newest Parenting magazine......And, well, much less entertained with the new $30 toy we just got for him.

He loves to dance.

He wants us to read Go, Dog, Go! (or as he calls it, "Go Ga Go") at least 5 times a day. Even though there are 20 books on his shelf, his eyes can easily spot his favorite among all of them.

Caleb LoVeS Luke.....He gently rubs his hand through Luke's hair and leans in to give him a kiss on the cheek. He'll gladly retrieve Luke's pacifier for him. And if Luke is in his room sleeping, Caleb will stand at the door and whisper "Shhhh" to me. But as soon as Luke makes a peep, Caleb is right at my feet as if to say, "He's awake now, Mom. Go get him!" When Luke babbles, "ba ba ba", Caleb echoes it right back to him. He cheers him on during therapy sessions and cheers him on as he eats his Keto meals. Luke doesn't know it yet, but his big brother is his BIGGEST fan.

I love you, Caleb. I am proud so proud of you! I thank God for giving you to us. I love your tender heart, your enthusiasm, your friendly nature, your sweet smile. I can't wait to watch you grow.....to see all that God will make you to be. I have a feeling whatever it is, you'll be doing it with your whole heart.

Y-a-w-n

2010-02-10T22:13:00.000-06:00

Recently, Luke's seizures have been showing up at crazy hours....like 3 am, 4 am, 6 am. I'm not too sure if this is recent change or if he's been doing that all along and I'm just now catching it. We bought a video monitor a couple of weeks ago, and it has definitely been helpful in keeping a constant eye on Luke. During the day, he rarely has any seizure activity that we can see. THANK GOD! But these pesky night time seizures seem to be a constant reminder the seizure monster still lives here. Ugh.

So, after talking with his dietician, the plan now is to resume night time feedings. y-a-w-n. We've been so blessed with babies who sleep so well at night. This will be hard to get used to again....setting the alarm for 2 am...stumbling to the kitchen, getting the bottle ready.....you know the routine. Hopefully, this helps. I would do anything to get rid of the seizures, so in that sense, it's really no big deal. (but I will miss the sleep!) The dietician thinks that Luke's 10-12 hour nights are just too long for him to go without food...or should I say fat. So, at 2 am, he'll get two extra ounces of heavy whipping cream. The dietician also increased his daily caloric intake...he's at 1,400 calories per day now. He's still losing weight :( so we're hoping the extra calories will help.

Luke's been on the ketogenic diet for 2 full months now. Here are some improvements we've seen:

* Luke's vision has improved A LOT! Praise God! He still struggles some in this area and when you're with him, you can tell he still doesn't see everything. But he tracks so much better, he focuses and he makes great eye contact.

*Babbling makes a come-back! Luke lost his babbling skills when the seizures started and now he's back at it. I just put him down for the night. He wasn't getting settled and I had to go back in twice to tuck him in again. Both times I got to his crib, he started babbling "Ma-ma-ma-ma" :) Realistically he probably isn't saying "ma-ma" because he knows that's who I am (although it's nice to think that maybe, just maybe he does?), but either way, it's just GREAT to hear his little voice again.

*Luke is able to bear more weight on his legs and his upper body is beginning to get stronger too. He still has soooo far to go in this area, but we're seeing some improvement.

*Smiling.....lots of smiling...and laughing.

*Last, but certainly not least. the clusters of seizures are beginning to vanish.

Perspective

2010-01-25T12:54:00.000-06:00

My best friend and her husband are directors for Convoy of Hope Haiti. My friend was here in Springfield on Tuesday, Jan. 12th. Her husband was in Haiti hanging on to a balcony railing, riding out the quake. He was there on a routine trip....one of several this year. Can you imagine being that far away from your husband, knowing an earthquake just ripped through the city where he was? They are both so strong..... I admire them a lot.

I've been so moved by all of stories coming out of Haiti. Stories of survival.....three month olds pulled out of the rubble, alive and well, after being buried for days. ( And to think there are people who don't believe in miracles...???) Stories of lives being saved on US military ships and the injured being flown to medical facilities to be cared for by generous surgeons and doctors. Stories that tell of the unmistakeable tenacity of the human spirit. Stories of sweet Haitian children giving an enthusiastic "Thank you!" for one single bottle of water that they had to wait in line for hours to even get. It's all been so overwhelming and inspiring at the same time.

For me personally, in my everyday life, these stories just cause my perspective to change. If you know me at all, you know I dread the weekly trip the grocery store. It's just seems so tedious and time-consuming. This week I heard myself almost saying out loud, "Really Kristi, you're gonna gripe about a tedious trip to the grocery? You hardly know the meaning of 'wating in line'. The longest of lines at the grocery store can't compare to what the people of Haiti are facing."

Haven't really had time to think about resolutions for 2010. (I'm the mother of twins...what can I say?!) But, I know now that one thing I want to change is my perspective. I not an "out loud" griper.....the whiny sort that complains about every little thing. But, if I'm honest, I have to admit, I have my days and moments when I think to myself "Do I really have to do another load of laundry?" "Dishes...UGH!!!" "I can't think of anything to make for dinner!" and "Why are these pictures taking so long to upload?" and "Why oh why does this person in front of me not know how to drive?" ..and on and on it goes. Am I the only "closet complainer" out there? Not big things....ya know, just the small everyday things that can get on your nerves.
I'm forgetting all the while that the pile of laundry is there because I've been blessed TWO adorable little boys. And a sink full dishes means my family has been well fed when others in the world are starving...literally. And while I'm fretting over what to make for dinner...many people in world have no choice whatsoever...they eat whatever the humanitarian relief worker hands them to eat. And my pictures taking forever to upload means I've been blessed with many, many happy moments that I want to remember when millions are trying to forget the hell they are living through. And if I would just take a minute to think about it, I'd see that if I'm really that tired of dealing with crazy drivers, I could always do the alternative...sit at a bus stop in 30 degree temps and wait for a bus to come take me where I need to go.
I don't mean to be all somber.....and I hope this post isn't turning too melancholy. I just want to be more mindful, that's all. And a little more intentional about taking my thoughts captive and remembering how blessed I really am. I'm praying for the Haitian people and I'm thanking them for showing the world what gratitude really looks like.

So long seizures

2010-01-14T00:17:00.004-06:00

Ok, I'll start with what you really want to hear.....the answer to the question: How are Luke's seizures? Short answer: A LOT better!! Before I go any further, I have to tell you we are, ELATED and very, very grateful. Luke's neurologist told us today (and by the way, Dr. T is the smartest of the smart....world-renowned in pediatric neurology), "well, we don't really know how this diet even works...why or how it controls seizures." :) Smart people get uncomfortable when they can't explain things. It's cute.

Of the past 15 days, 12 have been seizure-free!!! "Normal" for Luke was about 2 clusters a day. (Infantile Spasms come in "clusters"...one seizure after another, 3-10 seconds apart). Each cluster consisted of 30-40 seizures. You do the math and that's 60 seizures a day, up to 2,000 seizures a month. YIKES. In the last 15 days, he's had 3...that's right THREE clusters total. That means we've seen about a 90% reduction in the last two weeks.

Luke has officially been on the Ketogenic Diet for a month now. We've made some adjustments, changed formulas, tweaked something here and another something there...... This will continue. After all, when it comes to seizures, 90% is fantastic, but 100% seizure control is the ultimate goal. Even one seizure every now and then can wreak havoc on a 1 yr. old's brain so we're working to get them gone....ALL gone. We are increasing both his daily caloric intake and his total fat intake.

That's it in a nutshell. For more information and continued prayer concerns, keep reading. :)

**The doctors didn't order an EEG yesterday. Since Luke is still having some seizures, the thought is that probably things won't look much differently in his brain right now. Once we have a long period of time without any seizures, we can call St. Louis Children's and arrange for an EEG to be done. THAT TEST WILL TELL THE REAL RESULTS. The reality of Infantile Spasms and really seizures in general is that sometimes you see them and well, sometimes you don't. And by not seeing them, I mean simply they are happening in the brain without any demonstrative display on the outside. So, while we aren't seeing the big clusters of startle jerks, it doesn't mean Luke isn't still seizing. (I know, bummer, right?) So, we wait......and hopefully we can get an EEG within the next 2 or 3 months and know for sure what is going on in his brain.

**The doctor and dietician were very celebratory with us yesterday. Any improvement is a reason to celebrate. That said, they wanted to make sure we keep our feet on the ground. There are cases when the Ketogenic Diet works wonders and then......it just stops working. Like I said before, there's a lot of tweaking that can be done and we can attempt to get it working again, but it's not always possible. Some children will end up having to try anti-convulsant drugs again.

**So, if we get these seizures gone once and for all, Luke will start developing normally right? Eh, I wish. Dr. Neuro explained to us yesterday that we really don't know what is causing Luke's developmental delay. Is is the seizures or is it the brain injury? We can't forget that at birth Luke suffered a massive brain bleed, on both sides of his brain. Nothing short of a supernatural miracle can heal the brain from that kind of injury. Again, we have to wait and see (there's so much waiting in life, isn't there?). Our deepest desire is that we'll begin to see Luke start developing more and more.

**Luke has lost a significant amount of weight. This is somewhat normal for Keto kids, however he has lost even more than normal. So, we've increased his daily caloric intake to 1,050 cal per day. His sweet baby rolls are gone. When it comes to seizures, you find yourself living to the tune of "What is the lesser of two evils here?" And, well, seizures are almost always, by far, the greater evil.

**Luke underwent a series of genetic testing back in October, in an effort to find a cause for the epilepsy. The results have all come back normal (which we expected since his identical twin shows no signs of this disease). So, we're back to what we suspected all along....the epilepsy is a result of the brain bleed at birth and other abnormalities in his brain as a result of that injury.

**Luke will soon start more (LOTS more) therapy. It's time now to bump up our efforts and get him moving, exercising, and working to gain strength, endurance and mobility.

*******WAYS TO PRAY*********

Here are seven specific ways you can pray:

1) Pray that we see continued success on the Ketogenic Diet and that 100% seizure freedom comes quickly!!

2)Pray for healing and complete restoration in Luke's injured brain.

3)Pray Luke gains weight.

4) Soon we will start adding solid foods to Luke's menu (right now he's just on the formula version on the diet). Pray Luke eats well and learns to chew/swallow. (he likes to spit it all out and gag instead)

5) A recent MRI showed Luke still has A LOT of fluid on his brain (I'll blog more about his later). Keep praying this fluid drains. The doctor doesn't feel a shunt is needed at this time, but it's still definitely a possibility if the fluid level increases.

6) Pray for Luke's vision. We still don't think Luke can see a whole lot of anything. His eyes are perfectly healthy....the connection between his eyes and his brain is not. This can sometimes improve with age. Pray it improves!

7) Pray for Luke as he starts more therapy. It's a lot of work for a little guy and he tires easily. Pray we get in touch with GREAT therapists (I'll be calling next week to set all of this up!) and that Luke begins to soar developmentally!!

Hope

2009-12-26T13:10:00.004-06:00

It's the 2nd Day of Christmas-MERRY CHRISTMAS!! Such a great time of year! We have really, really enjoyed ourselves. Last Christmas Eve we were at midnight mass at St. Johns hospital, holding one baby and tearfully thinking of our other son who was just a few floors up in the NICU. How far we've come!! This year we got to eat Christmas meals, open presents, look at Christmas lights, attend Christmas parties, go to Silver Dollar City, watch the snow fall and do many other merry things...all together as a family of four. :-)) Our hearts couldn't be happier.

On the second day of Christmas, my true love gave to me, seizure-free days? Well, yes and no. The last three days have been plagued with large seizure clusters for Luke. Today is Day 18 on Ketogenic diet. I am deeply, deeply grateful to be able to tell you that of the last 18 days, 4 of those days were (at least as far as we could tell) seizure free. And the other 14 days, while not free of seizures, offered much fewer seizures than what had become "normal" for Luke. As you can probably imagine, this has given way to us feeling very, very hopeful on some days and on other days, well, kicking and screaming and cursing these blasted seizures for not leaving our Luke alone once and for all.

The truth is, it did come to mind a time or two (or ok, maybe like a hundred times) in the last two weeks about how great it would be if Luke were actually seizure free by Christmas. I mean, I know.....they said we had to try this diet at least a month before we could really make any judgement on whether it was working or not. But....seriously, how great would that have been? And who doesn't love a good Christmas miracle story? Ahhh....but alas, it turns out, the calendar that hangs prominently on our fridge for us to record Luke's seizure activity, is all marked up this week...a cluster here, a cluster there. So, Christmas '09 won't go down in history as being seizure free. Maybe next year? Maybe....and then again, maybe not. While I've been thinking a lot about seizures and miracles and Christmas and....all the rest.... well, I began to really know deep down that our Christmas miracle already came. Over 2000 yrs ago now. Not it, but HE. He came and He will always be what we need most....more than healing, more than miracles...more than a healthy son...more than anything. We need Him...His grace, His forgiveness....
He came to give us life....eternal life. THAT is a miracle. God becoming flesh to be near to us....to restore relationship with us. That's huge. And more than a healthy brain and perfect development and freedom from seizures, what Luke needs most, is the same thing all of us need the most....a Saviour. Not that I'll ever stop asking God for a miracle of healing in Luke's body. I would be disobedient not to. I think Scripture makes it pretty clear that God's will is for us to ask...and ask again...and keep asking and believing. But deep down....while I'm praying and asking...and pulling all-nighters researching the best care options for our son, and driving to yet another doctors appointment....and desiring almost more than anything for Luke to be healed....deep down, I know that the greatest miralce is salvation and eternal life. And more than seizure freedom for Luke, I want salvation for Luke. I long for the day when Luke will have perfect eye-sight, and crawl and then walk and run and talk to me and interact with toys and friends and be able to be a healthy little boy. I can only imagine when that day comes, how happy I'll be. I just pray that the day that Caleb and Luke ask Jesus to be their Savior and surrender their hearts to him, that I'll be rejoicing even more. Because that IS the greatest miracle of all.

We all have something we're hoping for in 2010....a different job, a new car, a child, financial provision, a husband or wife, good health, a new beginning, the list could go on and on. What we really need though, already came. I pray I never forget that truth, and that in the coming year I'll be more mindful that the greatest miracle of all has already been given to me. A Savior and forgiveness of sin....and eternal life with Him!!

If you're not tired of reading yet, I'm going to copy a blog post I read recently that really captures what I've been sensing in my own heart. Matt Chandler is a pastor in TX (we listen to his podcasts a lot) and he was recently diagnosed with brain cancer. One of his close friends wrote these thoughts after he heard the news:

December 16, 2009
Thinking of my friend Matt Chandler and the difference between Hope and Desire

I write this today because I need to. I need to tell myself these things. I just read the pathology report from the Village Church on Matt Chandler (http://ow.ly/MM81). I have known Matt for many years and love and respect him deeply. I am praying for him and for his sweet wife Lauren, and their kiddos, and the Village. And, I am praying with this in mind: there is a difference between desire and hope.

I am praying with great desire. My desire is that God would heal Matt, hand him to Lauren and the kids to be her husband and their daddy, restore him to the pulpit, empower him to preach his heart out for the magnification of Jesus, and one day let him play with his grandkids. I think God wants me to desire those things and ask Him for them, knocking until my knuckles bleed, making it clear to God how I desire Him to respond. And, those desires are good. But those desires are different than our hope.

Sometimes desires are not fulfilled. But, our hope is. Hope does not disappoint us (Romans 5:5). Our hope is certain and sure. Our hope is that none who trust in Him will ever ultimately be put to shame. Our hope is that in Jesus we are forgiven, given his Spirit, adopted as sons and daughters of God, and will one day be revealed as such (Romans 8:14-16; 1John 3:2-3). Our hope is that Jesus has defeated our greatest enemies of Satan, Sin, and Death and through Him we will triumph (Romans 8:37). Our hope is that God is sovereignly moving heaven and earth to secure the good of his elect and bring about their glory and joy (Romans 8:28). Our hope is that we who are in Christ are the eternal objects of God's love and that nothing, absolutely nothing, can change that status or rob us of its privileges (Romans 8:38-39). Our hope is that these momentary and light afflictions are preparing for us an eternal weight of glory beyond all comparison (2Cor 4:16-17); that the things we suffer are not worth comparing to the glory that God will reveal to us (Romans 8:18). Our hope is that God will not leave us nor forsake us so that even as we experience ten thousand shadows of death come over us, we shall not fear because He is with us (Psalm 23). Our hope is that He who raised the Lord Jesus will raise us also with Jesus and bring us into his presence (2Cor 4:14). Our hope is that if we have been united with him in a death like his, we shall certainly be united to him in a resurrection like His (Romans 6:5). And, our hope is that Christ, who is our great treasure, will be exalted as such whether by life or by death (Philippians 1:20). This is Matt's hope. He knows this hope; he lives this hope; he preaches this hope. Lauren knows and lives this hope as well, and Matt is blessed to have her at his side.

I just needed to tell myself that today. I need to remember that as I voice desires to be fulfilled and as I plead with the "God who is able," for Matt's strength and healing and restoration, I must not confuse my desire and my hope. I am holding tightly to hope and finding my comfort in the God of Hope. Praying we all will. Apostles Church will be praying for the Chandlers

Keto Diet-FAQ

2009-12-12T10:03:00.002-06:00

Here's an attempt to answer some the frequently asked questions about this Ketogenic Diet that Luke is on. Hope it's helpful!

How long will Luke be on the diet?-- The docs have asked us to commit to at least a month. There is still some "tweaking" of the diet that can be done, so that could add another couple of months. If the diet is successful (and measuring success can be complicated........but probably something like >90% reduction in seizures in addition to a normalized EEG) than kids are usually on the diet for 2 years, after which time we would try weaning him off. Many kids remain seizure free even after coming off the diet, others have to continue for another few years.

Doesn't he gain weight eating all the fat?--Interestingly, no. He is losing weight. Kind of a bummer, but the lesser evil compared to daily seizures.

What exactly does he eat? --For now we've chosen to do just the liquid Keto diet which has three components (all of which are carefully weighed separately on a gram scale and then mixed together in a bottle): 1) RCF--a soy-based, low carbohydrate formula 2) Unsweetened apple juice to provide a small amount of sugar/carb and to sweeten the taste 3) A fat source. For Luke we are are using either olive oil or heavy whipping cream.

As he grows, and if this works.....we will slowly add solid foods to the mix. The solid food allowed on the Keto diet are not so appealing for a one year old......bacon, mayo, lettuce, popcorn, omlets, etc. So, we'll probably wait another 6 months or so to make any big changes there.

Does Luke get a balanced diet? No, the diet is not balanced. Luke has to take a supplemental vitamin/mineral powder while he is on the diet. I should also just say here that the diet is not "natural". Our brains love glucose and are designed to be fueled by carbs. So, making the body run almost exclusively on fat and protein isn't natural or meant to be a life-long diet change.

How does it work?--Ahh, this is the biggie!! I'm not sure....and really the medical community isn't entirely sure either. Basically, when the body burns fat, it produces ketones. Whereas people normally get energy/fuel from carbohydrates, the keto diet allows for the body to burn fat for energy. The increased level of ketones has shown to cause a reduction in seizure activity. That's the "in a nutshell" version. You can find a plethora of information if you Google Ketogenic Diet.

What happens if Luke comes out of ketosis? Luke is now "in ketosis", meaning his ketones levels are increased. If he achieves seizures freedom, then we have to be very, very careful. Coming out of ketosis would easily cause a seizure. Believe it or not, that means carefully controlling pain meds (Children's Tylenol is loaded with yummy, grape, sugary stuff!!), antibiotics and EVEN lotions, soaps, toothpaste, etc.

The great part about doing the diet now, while he is very young, is that Luke can't really "cheat". Stories have been told of older kids on the diet who found a few crumbs on the floor and ate them, only to come out of ketosis.

Does Luke still have to take anti-seizure meds? Ideally, no. He is currently being weaned off his last anti-seizure med. (And for the first time in his life, will be off of ALL medication!!) Some kids do find the best results with a combination of the diet and meds. However, since the diet it typically used for kiddos who have drug-resistant epilepsy, many are strictly on the diet.

Is the diet pretty effective? Research shows about two-thirds are "significantly improved", meaning they achieve at least a 50% reduction in seizures. Seizure freedom occurs in about 10%-20% of cases. The encouraging, recent research shows that particular kinds of epilepsy (Infantile Spasms being one of those) show even greater success rates.

Please know you are welcome to ask any questions!! These just seem to be the ones that people ask the most.

Going home!

2009-12-09T16:51:00.003-06:00

Luke has done very well on diet...in terms of his lab work and actually taking to the special "menu". His blood glucose dipped down pretty low, but stabilized nicely. His Ketones are in the "large" range and his BMP is at a 15. Luke is on the 3:1 ratio right now. (Putting these details mainly for other Keto moms out there in cyberspace who happen upon this blog and find this information useful! You cannot believe how much I've learned from personal blogs of families around the country I have never met.)

All that to say, he's ready to go home!

The seizures? .... I know that's what you really want to know about, isn't it? ;)

Eh. Could be better. Could be a lot better. Luke usually doesn't get too upset when he seizes. A little foggy...a little out of it. Only twice can I remember him crying hysterically over them. Today was one of them. Oh yea, it was a doozie. Usually I count them....Today I lost count. The cluster seemed to go on and on. Luke screaming, me crying and the poor dietician just standing there. She had come to give her last instructions and say goodbye. I appreciate her so much and have learned a great deal from her the last two days. I had envisioned giving her a big hug and a great big "I think we're on our way to seizure freedom" smile by now.......

Instead, I'm standing there with a seizing child and can't hear a word she is saying cause my baby is screaming so loud. This post is for those of you who like the raw honesty. There it is.

So, we wait and we pray and we go home with high hopes that his new menu will help.

Did I mention we need a miracle? We do. Infantile Spasms aren't something you can just be treated for and then be on your merry way. The more we learn about it and the more we see Luke suffer from it, the more we realize that whenever and however it happens, seizure freedom will be a miracle.

Thank you to each of you has prayed this week. Really thankful Luke is tolerating the diet and that we get to go home this soon! Still feeling a lot of peace......and hope.

Keto Kraziness

2009-12-08T13:58:00.005-06:00

So Andrew, Caleb and Andrew's mom headed back to Springfield last night. Andrew had to work today. I'm here, holding down the fort. Had several people say, "Oh enjoy your time! Just you and Luke....you can rest, read a book, watch movies." I got to thinking, 'Yea, this will be pretty nice. Just me and one baby!" Came all prepared with my book, Office DVD set, and laptop.

Wishful thinking I guess.

My word...has it ever been busy today!! If you need to get caught up on rest, don't check in to your local hospital.

You probably already knew that.

Between blood sugar checks, ketone level checks and all the other "checking in", Luke and I didn't get much sleep. Luke woke up at midnight. Not sure what woke him up, but it's never good when he's startled from sleep. He seized 35 times. This morning he seized another 50 and then has had a few more throughout the day. The seizure monster is still here.

Luke seemed hungry for his 8 am bottle. He drank it down, but unfortunately, it didn't settle well and up it came (not ALL 8 oz thankfully). Mommy and Luke both covered. Yuck.

New outfit, new sheets, new blankets.

Docs were a tad bit concerned about the vomiting so they put an IV in, just in case. So far they haven't used it.

Good news!! Ketone levels are UP, blood sugar is stable!!!

Shortly after the first clean up effort, Luke got started at the other end. My friend Amy in Kansas tells me parents should never make public the details of their children's "business". And I agree with her. I'll move on...

new outfit, new sheets, new blankets

Bridget, the dietician came in and taught me how to measure out the bottle. Me and my gram scale are soon to be great buddies. We also went through the computer program (Keto calculator) that will help us plan meals in the future, once Luke isn't just eating formula. As I was making the bottles, I realized, "Wow, this is A LOT of olive oil in one day" I'm pretty sure my Italian grandma doesn't even have that much OO in a day! As we're measuring......we hear funny sounds from Luke's bed.

new outfit, new sheets, new blankets

S0000....I ask Bridget if we can try to swap out the OO for heavy cream in two of his bottles. We'll alternate. The cream can slow things down, the OO gets things going (obviously!) so starting at 4 pm, we'll try that.

For now, Luke is doing well. He's a little sleep deprived, but other than that, ok. Of course, it will be awesome when we can FINALLY say he's seizure free. Day by day and moment and moment though, we realize that abundant life doesn't come in wishing it all way and living only for seizure-free days. As the blinkie at the top of this page says, "Be happy for this moment, this moment is your life." We enjoy every moment, we soak it in......THIS is the day the Lord has made, I will rejoice and be glad in it! Here are some photos of our moments...

Luke's latte!

His famous sleeping pose

This is my great aunt. Haven't seen her in years!! She surprised us yesterday with a visit. She officially set me straight on twins on the Hoggard side. My great-great grandpa was a twin. My great-great aunt had twins, my great-great aunt on the other side had twins, and two of my grandpa's siblings have twin grandchildren. (hope I got all that right!) Suffice it to say, when asked "Do you twins run in your family?", I will now say, "Yes!" Thanks Aunt D for settin' me straight!!

Our room

Grandma and Luke

Mommy's Keto meal.

Luke's IV

Luke and his many band-aids. He's about to run out of fingers.

Keto Kid

2009-12-07T20:06:00.012-06:00

What a great day!! Happy to say, everything has gone so well today. Andrew, Luke and I got to St. Louis Children's this morning around 8:30. (Grandma and Caleb stayed back at the hotel). Luke was admitted and we settled quickly into Luke's private room. Yay! We're waaay up on the 12th floor with some awesome nurses, nerdy neurologists (hey, you WANT your neurologist to be nerdy, you know what I mean?), and one spectacular dietician!

Luke's dietician, Bridgette. She's great!!

Turns out Luke DIDN'T have to fast all day. They changed their policy for kids under 2. So, he ended up waiting only until 1 pm at which time we gave him his first Ketogenic meal! We've weaned the Topamax and today we're starting to wean him off Vigabatrin. Adios drugs, hello RCF formula, apple juice and....olive oil. Yea, for real. We had a choice of adding heavy cream or olive oil and the Italian half of me immediately blurted out, "We'll take the olive oil" My husband looked over and grinned and then shook his head at the nurses saying, "She Italian, what can I say?" Now before you feel sorry for Luke having to down what sounds like a nasty concoction, let me tell you. The kid LOVES the stuff. He has successfully guzzled 3 of these bottles now. He likes it, Mikey likes it!!!

Luke sucking air....drank the bottle DRY!

What's the plan now? Well, every four hours Luke has his blood sugar checked. So far, so good there. No drastic dips. Praying it stays that way overnight. Secondly, we're waiting for his "ketone" readings to increase. It's the production of ketones that can sometimes, surprisingly, stop seizures. When the body processes fat, it produces ketones, hence the high fat diet. Believe it or not, that's it! It all looks so simple when I type it out like this. Of course, there are things that could go wrong, but they seem fairly minor at this point....blood sugar drops, which would mean he'd have to get an IV or extra apple juice, acidosis which would require a tweak in the diet, and potentially (though rarely) some vomiting and lethargy as he gets used to this new menu.

Nurse checking yet another blood sugar. Luke is NOT fond of this process.

******************

There seem to be so many different thoughts I could write at this point. But for tonight I'll just mention how much peace we feel. When it came time to decide how to treat these stupid seizures, I had the most peace about this diet option. And while I would still make the same choice, it hasn't always been easy these past two weeks....counting seizures, weaning meds, watching Luke's little body jerk beyond his control, all the while knowing you made the right choice, but just wondering how it was all going to play out. Luke seized 30 times on the way to the hospital this morning. I watched, I counted, I held his hand there in the back seat of our van and then I really couldn't do anything else but just close my eyes. I asked God to please grant us the peace we needed and the assurance of His presence. God really did that for us today. We checked in, rode the elevator up, found our room, walked in and.........peace.

There were three people watching over Luke today. First, his nurse who graciously listened as I told her Luke's history and how we'd come about making this choice for the Ketogenic diet. She said, "you did the right thing"...and not in a nurse kind of way and maybe not even in favor of the Keto diet, but in a mom kind of way of "you followed your heart, kid, and there's a lot to be said for that." peace. Secondly, his dietician spent a lot of time with us today. She's the barista serving up these yummy Keto drinks. :) We were talking to her about the use of the Keto diet in different kinds of epilepsy. She says, "Well, we use it for all kinds, but it's especially effective with infantile spasms." She rattled off about 5 more rare-sounding syndromes and conditions that have shown success with the Keto diet, but then came back to "But infantile spasms in particular have really responded to this diet" peace. Our last visit tonight came from the attending doctor. Never met her before. She comes in, meets Luke and looks at us and says, "So I hear you've been doing some reading. Your doctor tells me you all read the article from Johns Hopkins comparing ACTH therapy and the Keto diet. I applaud you for your interest in your sons care. I mean to sit and read through medical journals..... you guys are serious about educating yourselves on all this" (Thank you!! Thank you Dr. Neuro for acknowledging that us parents might understand a thing or two. And we are capable of plodding through medical journals and making sense of it all.) She goes on to say, "Now if it were me.." And I was thinking, 'Oh, here we go. She's gonna tell us she would have done the steroids, but she respects our decision and we'll just see what happens' But, no!! Her sentence ended with, ...."I would have done the same thing!!" ::sigh:: peace.

Must get to bed. Luke and I are snuggled in for the night...both of us in our Christmas jammies. For now I'm just pondering this....Do I wish Luke would never have another seizure? Yes. Do I wish were weren't staying another night at a hospital? Yes. Do I know what tomorrow will bring? Nope. Am I scared that I don't know what the future holds? Sometimes. Do I feel peace right now despite all of that? For sure!

The hospital looks beautiful!

Caleb and I in front of the BIG tree.

Caleb exploring St. Louis Children's art pieces. He had so much fun!!

Thankfulness, cont'd

2009-11-29T13:42:00.001-06:00

M- MIRACLES! Yes, they still happen. every. single. day.

N- NAP time. J My boys take two LONG naps everyday. It’s wonderful.

O- Let me think…..The Ozarks…. The Office….sure, those will work.

P- Our PARENTS. So thankful for parents who have always loved us, supported us and showed us with their lives how to trust God and serve Him faithfully. We are who we are because of them and I am so thankful Luke and Caleb have such a Godly heritage.

Q- This is getting hard….. ? I dunno. Quiet nights. Can that count for Q? Both of our babies sleep through the night (most of the time). I remember when they didn’t. I have my sanity back. J And I know it’s not always a guarantee…babies that will sleep through the night. So, I’m really thankful ours do.

R- Republic Elementary II—my former place of employment. This one group of people has shown more compassion and generosity towards me and my family than you can ever imagine. I love you all, I MISS you and I could never thank you enough for all you’ve been to me.

S- Smiles—You parents know what I mean when I say…there’s NOTHING like opening the bedroom door in the morning, peeking around the corner and seeing your child grinning from ear to ear. I am thankful that despite some long, exhausting days , my two sweet boys can both smile and giggle and make me pause in wide-eyed amazement.

T- 242—our Sunday school class. This amazing group of people has meant so much to us over the last 5 years. They know what it means to “bear one another’s burdens”. So thankful to have these people to share the journey with!

U- U2 concert!!!! I surprised Andrew for his 30^th birthday this year and we headed to Oklahoma for a concert he’s been dying to experience! It was worth the money and driving through the night. J

V- Our VAN!! So loading two infants in and out of a vehicle turns out to be a very difficult task. Really thankful we found a great deal on a great van this year.

W- The WORD….as in Scripture. So thankful for God speaking to us and revealing Himself to us through the Bible. Thankful to have it my language and the freedom to read it whenever I want.

X- Sheesh…was this alphabet thing my idea? I’m moving on…

Y- YOU

Z- I’m gonna have to get creative here. Zero: The number of times God has left my side. This is what I know for sure today…..He is ALWAYS with me.

P.S. As I’m typing this, Luke is laying the floor babbling. “Ba ba ba ba ba…da da da”. Luke started babbling a few months back and then kind of just….stopped. Maybe in response to these stupid seizures…who knows. But anyways, he’s been squealing and smiling and all that, but the babbling of syllables was gone for a while. And today, it’s back. He just seems more “present” the last couple of days. In the words of Sara Groves, “It’s the everyday miracles that keep my hope alive….” Thank you, God. Thank you for being with Luke. Thank you for every struggle and every challenge that teaches us how to truly live……how to recognize the miraculous in our every day life. Thank you for the struggles that allow us to see just how big you really are and for allowing us to know our weakness so, in turn we can know your strength.

Ketogenic Diet

2009-11-23T21:37:00.002-06:00

After a ton of research, lots of prayer, discussion, silence, more reading, more prayer......and then finally just a mommy's "gut" instinct, we've decided to put Luke on the Ketogenic diet in an effort to control his infantile spasms.

Our other option at this point was to try to something called ACTH therapy, steroid injections given twice a day. This method is known to be very effective, but somehow I couldn't get a peace about it. Technically, it waits ....there on the back burner, ready to be used, but I truly pray Luke never needs it.

The plan now is to wean Luke off of one of his anti-seizure meds (Topamax) over the next two weeks. We will then take him to St. Louis Children's (not sure on a date...somewhere around the 7th of December) and he will admitted for about a week to start the diet. The diet change at this stage is thankfully just a change in formula. Luke does eat some table food, but he hasn't really taken to it much. So, it shouldn't be a huge change for him to just drink a different kind of formula for a while.

Your unending support, ceaseless prayers, words of encouragement...it is all so very much appreciated!! God is with us!

Decisions, decisions

2009-11-20T21:40:00.002-06:00

We just talked to our docs in St. Louis this evening. They have scheduled Luke to be admitted to St. Louis Children's on Wednesday, Nov. 25th. Luke started a new med, Vigabatrin, about three weeks ago to control his infantile spasms. The seizures haven't stopped even though we have increased the dosage (in fact on most days, the seizures are worse than before), so it's time to look at a different option.

As we've stated in other posts, Luke's prognosis is very, very poor at this time. The prognosis can be "better" with QUICK and COMPLETE control of the seizures (that is 100% seizure free, not just a reduction in seizures). So, that is the goal right now.....getting the seizures stopped...and getting them stopped as soon as possible.

Luke's doctors are recommending that Luke be admitted on Wednesday and begin ACTH therapy.....an aggressive steroid treatment used to treat infantile spasms. The treatment will require a 3-4 day hospital stay. Afterwards, Luke would return home and we would be giving him steroid shots at home for another 4-6 weeks. Luke will have a suppressed immune system and will have to stay at home for the course of the treatment. He will be closely monitored by a home health nurse as the steroids can cause high blood pressure and other serious medical problems.

Over the past couple of weeks, Andrew and I have become increasingly interested in something called the ketogenic diet. It is a high fat diet sometimes effective in treating infantile spasms and other forms of epilepsy. The diet can be quite difficult to follow and hard to implement in toddlers/small children. But, because Luke is still mostly on formula, he would be able to switch to ketogenic baby formula and remain on this diet for a couple of months to see if it helps at all. Luke would be admitted for one week to begin the diet and achieve "ketosis" and then sent home with the formula. We can't start this diet until he is weaned off of one of his meds, Topamax. It will take two weeks to wean him off of this med.

Our doctors have been REALLY great. It's wonderful to hear them say over the phone, "We've met Luke twice. You're his parents, so we trust you completely. We want this to be a team approach". We really feel we will get their support either way. If left up to them, they would do the steroids first and then if that doesn't work, try the ketogenic diet. Their reasoning for this is simply that the steroids will work faster and since we're trying to preserve his brain, we want to get him seizure free as soon as possible. The steroids are just very intense and we (well I say "we"...mostly it's just me.. Kristi) are very scared of this treatment. Personally, I'm just not sure it's the answer for Luke. If the steroids do work, they'll work by Christmas, whereas the diet can take 2-5 months to work.

Of course, most of all, we want what is best for Luke. All we're looking at are stats....and the medical community's best guess of what will work. Every child is different, and so it's hard to know what to do next. Thank you for your constant prayers. We have a such a huge support system...it's amazing!! Please pray God will give us wisdom. We asked the doctors to give us until Monday and then we would call with our decision....

An ever present help in time of need!!

2009-11-17T19:22:00.002-06:00

Really trusting this promise tonight. As you know Luke's docs in St. Louis started him on a new med about two and a half weeks ago now. In addition to the new med, they increased his Topamax dosage quite a bit too.

For the last.....4, maybe 5 days, it's been very evident that Luke is having more seizures and not less. Could it really be, I keep asking myself. Am I just imagining this? Could the medicine that's supposed to be helping him actually be making him worse?

Couldn't get this thought out of my mind this evening as I've watched little Luke seize so much the last few days. Put a call in to St. Louis about 10 minutes ago. Thankful that Luke's doctor was actually the doctor on call tonight. Calmly I said, "Am I just crazy or could this medicine be doing the exact opposite of what we need it to do?" "Mmhhh." She says. "Never heard of that".

The paperwork that came with the Topamax says, "Contact your doctor immediately if your seizures get worse". So, I'm thinking it's happened at least once before for them to put the warning on there.

Her answer was "I'll look into it."

Our docs are GREAT. They truly are. They are just so finite in their wisdom. And, unfortunately the only answer right now is.... try this drug and if it doesn't work, wean off of it and try another drug and if that doesn't work, try another...and on and on the vicious cycle goes. The next one we try will be drug #4, and well....we're just not getting anywhere.

I hesitate to type out the same two words, PLEASE PRAY!!! I know you're praying your hearts out. But...please pray!

I hung up the phone, grabbed my mom's hand and put my other hand on Luke and asked God again for the impossible. Trusting tonight that my God will be just that...An EVER PRESENT help in times of trouble. And feeling really grateful that His answer is never, "mmmh...I'll have to look into that."

Will keep you posted. Thank you for praying.

2009-11-13T21:55:00.002-06:00

Whew...it's been a long day. Thankful for a safe trip to St. Louis and back.

Luke had the EEG first. He does so great...it must be old hat for him now. They attach 25 different wires to his head and secure them with some very STINKY glue. It's yucky. But anyway, he fell right to sleep, which was great because they always need some portion of the study to be while he's sleeping. So, the EEG showed no changes. :( I'm not surprised...he seizes everyday, so I didn't really expect his brain to look any better today. Still, it's hard to actually have them say that to you. The plan now is to increase the med and see if that helps at all. We return to St. Louis on Nov. 25th. If nothing has changed by then, they'll discontinue this med and do the steroid therapy. Sigh. I get a knot in my stomach every time I think about it. I just really don't think Luke would handle steroid therapy very well. It's suppresses the immune system (they told us we'd be home bound again for 3-6 months since it's flu season), can cause dangerously high blood pressure and has several other adverse side effects that I think would be really hard on Luke. So, the truth is, I'm pretty scared. We have 12 days for something big to happen. Nothing's impossible, I know.

Luke also had a spinal tab this afternoon. He did well for that also. Had to be put all the way under, but he handled the anesthesia ok. Thank God. This was done to check chemical levels in the brain (specifically neuro transmitters from what I understand). They are still trying to figure out exactly WHY he is having the spasms, so that's why they did the spinal tap. The results of that won't come back for several weeks.

If you're reading this and praying, thank you. The longer we travel this road with Luke, the more we come to understand we are truly FEARFULLY AND WONDERFULLY made. It's just unbelievable how every intricate detail has to come together just right in order for things to work like they should. It's comforting to know we are asking Luke's CREATOR to take care of him. We have some great docs, but it seems now, more than ever, we need a miracle.

Off to St. Louis

2009-11-12T22:03:00.002-06:00

We're hittin' the road bright and early tomorrow morning. Plan to leave by 6 am....which means we'll leave at about 6:30 :-))

We'll be at Children's Hospital all day. Luke has a few procedures to get done. When you're out of town, they cram all the appointments into one day! So, he has an EEG in the morning, then some lab work and then a spinal tap in the afternoon. That's what is PLANNED. More than likely, they'll end up adding something else to the schedule, but that's all we know about for now.

Today is Day 13 on the new med and we see no changes. He's still having a lot of startle seizures throughout the day. I even thought to myself today, "Is he having more, instead of less?!!" But then I realized maybe I'm just more aware of them now....now that we're watching his every move, hoping and praying this will be the day that we don't see them anymore. So, we'll see what they say tomorrow. I think the plan is to leave him on this med for at least a month to see if it'll end up working. Anyway, we will keep updates posted.

Thankful Thursday

2009-11-12T11:18:00.002-06:00

For the five years that I taught 3^rd Grade, I had a practice in my classroom that every Thursday was “Thankful Thursday”. We took time during our busy morning routine to stop and go around the room and let everyone tell about what they were thankful for. Every year was the same. The first couple of weeks of school, most of the kids would shrug and say, “I dunno”. I would eagerly urge, ‘’Come on. You can think of something…..just one thing….that you’re thankful for.” By the time May rolled around, I had kids bouncing in on Monday morning declaring, “Mrs. Lundgren…I already know what I’m gonna be thankful for on Thursday!” My heart was happy!! Being a stay at home mom this past year, I’ve missed those times with my students…times of learning about gratitude and what really matters in life. This year for Thanksgiving I heard of the idea of thinking of one thing you are thankful for, starting with the letter A. By November 26^th, you will have completed the alphabet and come up with 26 things for which you are thankful.

Here’s my list so far:

A- A--I’m so grateful for Andrew, my husband. I don’t even have to tell you how stressful the last 14 months have been for us. And while everyday hasn’t been easy, Andrew has been an incredibly supportive husband, a relentless fighter and advocate for Luke, a loving and VERY involved daddy, a hard worker and provider for our family, a prayer warrior …..the list goes on. I love this man!!!

B- B-- Blogs. I have learned so much by reading other people’s blogs. Other twin mommies have coached me through their blog entries. I have learned a MULTITUDE of things by reading blogs of other families who have children with special needs.

C- C--Caleb. What an adorable little guy. He fills our house with so much joy!! He makes us laugh everyday and definitely keeps us our toes as he explores EVERY corner of this house!

D- D--Doctors~ If you know our journey, you know we’ve have some good ones and some not-so-good ones. And the Great Physician has sure shown Himself to be the VERY best caregiver without a doubt. But, overall, I’ve been very impressed with the incredible knowledge and compassion we have found in our doctors this year. I am thankful for people who dedicate their lives to medicine.

E- E--Espresso!! Being a mommy of twin boys is down right HARD WORK! I am thankful for coffee that gets me going in the morning.

F- F--Financial provision. We took a huge step of faith when I quit my job to stay home with our boys. Never have regretted it once (especially with all that has gone on with Luke). Except for one month or maybe two, the budget NEVER works out on paper…and yet, every bill gets paid…every need is met.

G- G--Generosity- Along those lines…..Andrew and I have never been so humbled by the generosity of other people. I could write 20 pages just about this. This year we have been given clothes, toys, food, gas cards, had our mortgage paid more than once, free babysitting…not to mention the incredible gift of time that so many of our friends have given us through long conversations, phone calls, and prayers. It’s one thing when you’re family helps you,…it’s another when your own peers are sacrificially giving to you (and you know their budgets don’t work out on paper either!!).

H- H--Hope. We’ve learned a lot about hope this year. Our hope is in God, our Creator, Savior and the Giver of all good things! I love that no matter how difficult the circumstance or how bleak things may seem, we serve a God who inspires hope…..”Now faith is being sure of what we hope for and certain of what we do not see” Hebrews 11:1 I’m also thankful for HEALTH. Even though Luke has his struggles, the four of us have remained healthy this year. I can’t even remember the last time I had a cold.

I- I--The Internet. In all seriousness, I don’t know what I would have done without Google. When I was pregnant I was able to learn about twin-to-twin syndrome and use that information to ask the right questions. When our doctors here dismissed Luke’s startles as “non seizure” activity, it was on-line information that helped us know to look for more answers. Information is a very good thing!

J- J--Jehoavah-Rapha – I have experienced God in many different ways this year. I am thankful to know Him as Jehovah Rapha-The God who heals!!! Cannot thank Him enough for the many, many ways He has healed both Caleb and Luke this year.

K- K--Well, all that comes to mind are names…..Kari, Karlene, Katie, Kathryn, Kimberly, Nurse Kathy, Kristin…..the list could go on. Each of these people has been such an important part of this past year. …each in their own way. If any of you are reading this….I’m thankful for you!!! Kari, for your constant intercession and for being a great big sister, Karlene for UNENDING support and love, Katie for being brave enough to come hang out with a new mommy of twins everyday for 3 months, Kathryn, for fighting the battle with me, Kimberly, for your sweet friendship and understanding like no on else can what it’s really like to have two babies, Kathy, for being an amazing nurse and caring for Luke like he was your own, Kristin, for the many boxes of boy clothes and all of the other ways you’re been so generous. On that note, I’m thankful for ALL of my friends!!

L- L--Of course…Luke! Our little fighter man has taught us so much. We’ve learned to appreciate every single day, celebrate the small stuff, expect big things from God, keep on going even when you’re afraid, never give up…..and many, many other things.

Day 10

2009-11-10T10:54:00.003-06:00

Today is Day 10 of Luke being on his new med, Vigabatrin. Today is only Day 1 of him being on the full dose. We had to gradually build up to 1000 mg per day. So far, we don't see any changes. This past week, we've still been seeing the startle jerks throughout the day here and there. Last night Luke had a "cluster", meaning he did the jerks over and over, repeatedly about 30 times in about 2 or 3 minutes. It might have been more..I lost count. It was a lot. It's very sad to watch.

We head back to St. Louis Children's on Friday. Luke will have another EEG and a spinal tab, as well as some blood work.

Please continue to pray for this medicine to work, for God's healing and for these seizures to stop.

Despite the seizures, here are some ways Luke is improving:

* He is doing much better during tummy time. Even though he is is 1 yr. old, he never has learned to hold his head up very well while on his tummy. This week, he has really improved and seems to be getting much stronger in his neck/shoulder area.

* When holding an object in each hand, Luke is consistently banging the objects together. (You never knew this was so important, did you?! Believe it or not, this is a developmental step for babies and his therapists have been trying to get him to do this for a long time...so we're celebrating!)

*Luke is still doing well sitting up all by himself. He still can't get himself to that position on his own, but he is trying! And he fusses until you help him get up. He's not too content to just lay on the floor anymore.

* He is doing well bearing weight on his legs and can also bear weight on his arms and knees in a crawling position.

So thankful that Luke seems to be retaining learned skills and not regressing too much while these spasms are going on. Can't wait till they stop.

Vigabatrin

2009-11-02T14:32:00.002-06:00

Well, as expected Luke's new med, Vigabatrin came in the mail this week. We started him on his first dose on Sunday. He has to gradually work up to a full dose. Right now he's taking 25% of a full dose. The medicine is very easy to give....just powder that we add to his bottle. We are still seeing the spasms. We'll know it's working when the spasms stop and then the EEG reads normal. If the med is going to work, they say it'll work soon. And by "soon", I think they mean within a month or two. This med is only for the purpose of stopping the spasms (which look like small startles). From what I understand, that is just the first step. And then we'll fight more/different battles from there.

Heard from our wonderful doctors in St. Louis. Dr. Guilliams called at 9 pm one evening, "just to check in on Luke". That makes a heart happy....to get a call from a doctor 3 hours away who cares enough just to check in with you! We will go back to St. Louis on Nov. 13th. They'll be doing a spinal tap to run more test, taking blood for lab tests and doing another EEG. We'll make another trip there the day before Thanksgiving for another check up.

Andrew and I are doing ok. When I talk to people about the whole thing, inevitably the conversation turns to all of the obstacles Luke has already come through. Everyone can see God's hand on his life....not only in the fact that he's come through multiple surgeries, been healed of illnesses and miraculously developed skills some thought he never would, but also just in the ways God has directed our steps and led us to the right diagnosis and the right treatment. Looking back on what God has done brings a lot peace. It makes it easier to trust that God is still the same God and he won't leave us now. Still, at certain moments, and sometimes unexpectedly, we are gripped by fear....fear of the unknown, fear of the seizures returning, fear of what life will look like for Luke, fear of not being strong enough to walk this road.

We do know this--We'll never be able to see tomorrow until it gets here and tomorrow may bring something completely unexpected. I mean...that's hardly a new revelation. If you've lived longer than a day, you know that sometimes what you think will happen, doesn't and what you never imagined would happen, does. And I guess when it comes down to it, what would faith be anyway if we had all the answers...no faith at all!

A friend of ours, Becky Rhoades, recently sent a note to our inbox and all it said was "I prayed for you this morning and clearly felt impressed to tell you, 'God is with you'. That's it...just remember and remind yourselves often, 'God is with us'".

So simple....but what more could you ask for really? Yes, I'm afraid, yes, I feel weak, yes, I don't know what tomorrow will bring. But whatever it brings, God will be with me.

A new diagnosis

2009-10-29T08:45:00.001-05:00

It has been an exhausting couple of days for us, but we would like to attempt to share with you some of what we learned from our doctors in St. Louis today. Please forgive us if this reads like a medical journal. Don’t have much energy to write more than just the facts at the moment.

The diagnosis: Infantile Spasms (IS) -We arrived in St. Louis yesterday. At the beginning of our appointment, we explained to the doctors the kinds of abnormal movements we were seeing in Luke. (started seeing these early September) These startle jerks often occur when he is waking up from a nap and seem to come in clusters. Our neurologist here in Springfield had read Luke’s recent EEG and ruled out the possibility of infantile spasms. He really couldn’t give us a good reason for why Luke would have these startles though. While we felt a huge relief when we heard that it wasn’t IS, we continued to feel very uneasy about the situation since there was no explanation and the spasms were getting worse. As soon as we explained all of this to our docs in St. Louis yesterday, they immediately suspected that Luke did in fact have IS.

They asked for us to stay the night and come back to St. Louis Children’s Hospital this morning for a repeat EEG, which would be their final confirmation. This morning, Luke was hooked up to the EEG machine for about 45 minutes. Shortly after, the docs came in, gave the diagnosis of IS and immediately started talking to us about possible treatments, emphasizing that time is of essence and treatment needed to start as soon as possible. (pretty much today)

The cause: Luke is diagnosed with symptomatic IS. Most likely, his spasms are caused by a pre-existing brain injury….in his case, the brain bleed at brith.

Often IS is a genetic disorder. Since we have no history of epilepsy in our family, and since Luke has an identical twin brother without the disorder, he is quite a quandary. Washington University is a research hospital and currently neurologists there are studying the genetic component of Infantile Spasms. We have released Luke’s records to be used for research, agreed to genetic testing, and will allow them to run tests on Caleb in the future as well, as this data could greatly help their research efforts.

Treatment: There are a couple of options. We have chosen to try the drug Vigabatrin (Sabril) first. This med has been used to treat Infantile Spasms in Europe for about 20 years but has never been approved by the FDA….until 2 months ago! It is very strictly regulated and Luke will be placed on a national registry and monitored very closely. The most serious side effect of this drug is loss of vision. Research shows that vision loss typically occurs with long term use and they don’t plan to keep Luke on the med for more than a few months. Luke will have to closely watched by his eye doctor here in town while he is on this med. The drug will be shipped to our home within a week.

We will continue to increase his anti-seizure med, Topamax, as well.

In very rare cases, IS can be treated, believe it or not, with a vitamin, B-6. In some cases the body simply doesn’t process B-6 normally and infantile spasms can result. In this case, a supplement is needed. We gave Luke his first dose of B-6 tonight. While we’re waiting on the other drug to arrive, we’ll try the vitamin and see if we notice any lessening of the spasms.

Our main objective now is to stop the spasms. It’s long (and quite complicated) to explain all that is going on in his brain during these spasms, but suffice it to say that they are very bad and need to be stopped as soon as possible. Left untreated, the spasms would cause Luke to stop developing any further than he already has, and in most case, would actually cause him to lose skills he has already mastered.

So, the treatment is to stop the spasms. If Vigabatrin doesn’t work (and half of the time, it doesn’t) than we will have to do the second option, ACTH therapy.

Prognosis: The hardest news to hear by far. Really smart doctors tend to have very little tact. That was certainly the case with our doctors today. Maybe that’s a good thing. They were straight forward with us that the long-term prognosis for Luke is very, very (insert about 10 more “very”s here) poor. Children with Infantile Spasms generally go on to have severe motor and cognitive delay. The spasms themselves will often stop by age 4, only to be replaced by another kind of seizure. These seizures are typically hard to treat as they are unresponsive to anti-seizure meds. Since seizures are so hard on the brain and can often erase whatever skills been learned, these frequent, hard to control seizures wreak havoc and simply leave very little hope of any significant development.

Prayers: I guess by now we’ve left no doubt in your mind, that short of a miracle, things are looking pretty bleak for Luke. Specifically, you can pray that the Vigabatrin works and that the spasms are stopped quickly. Pray, pray, pray for Luke’s brain. The thought that has come to us over and over since he was born was a prayer for “order to be restored” in his body. These spasms cause Luke’s brain to be extremely disorganized and the EEG shows very chaotic activity. More than ever, we need to pray for ORDER. Continue to pray for perfect development. Please ask God to bring a peace to our hearts as well, as we face all these new challenges. We’ll be traveling a lot back to Children’s Hospital, so pray for travel safety.

If we’re honest, this recent diagnosis has certainly left us with a level of hopelessness, doubt, confusion, fear, and the list goes on. You can probably imagine the kinds of thoughts that run through our mind…maybe you have the same ones. How could we pray so long and now come to this? How could you do so many miracles, God, only for this to be the result? Even though we have many questions and don’t always see God’s hand….there are certain things that we are very thankful for at this moment. We’ll end with those things:

· God miraculously opened the door in St. Louis and connected us with some of the very best pediatric neurologists in the nation. We feel they were attentive to our concerns and we’re thankful they were able to quickly discern Luke’s condition.

· Both treatments are very costly (doctors estimate up to $100,000). Just two months ago, without FDA approval for the drug Vigabatrin, insurance would have not have paid for this treatment option we have chosen. We understand they are going to be paying it in full.

· Most children who get a diagnosis of infantile spasms have already begun to lose skills they have already attained. In Luke’s case, the spasms started in September, but since time, he has learned to sit unassisted and has become stronger. He is very delayed in his development for his age, but still the doctors were very surprised that he has been making progress even after the spasms started.

We know people all over world are praying for Luke. Thank you for your prayers. We love you!

Surgery....again.

2009-09-03T16:54:00.002-05:00

Yes, Luke is going to surgery again. You may remember, he has his feeding tube removed on August 10th. It was the easiest, quickest procedure ever! They quite literally pull it out and you're on your way!! The lady who did it said, "95% of the time, the hole closes on its own within five days and we never see you again." Luke doesn't seem to like being average. :-) So, here we are almost 4 weeks later and the hole (think earring hole, except in the belly) isn't closed yet. We know it's not closed cause we've had some pretty bad leaking this past week.

They have surgery scheduled for Tuesday, Sept. 8th. They will have to surgically stitch it closed. When I spoke to nurse over the phone (the same one who removed the feeding tube...and the same one who treated Luke in the NICU after his big intestinal surgery), she assured me Luke would be in the hospital for 2 days following the procedure even though most kids go home the same day. I asked her why he would have to stay and she said they need to observe him to make sure he is breathing on his own, etc. So, I went on to tell her that Luke just had eye surgery and did fine with the anesthesia and we were home within 2 hours. She was surprised and I think she was basing her expectation on what Luke was like in the NICU (admittedly, very unstable at times!!) I guess we'll have to wait and see, but I really think he'll handle it just fine and be home the same day. Sure am praying that way!! Wouldn't be too bad if the hole just went ahead and closed on its own. I asked her what would happen if it did and she assured me this has never happened. Basically, if it hasn't closed by now, it's not going to. Well, you know us....we're still praying it does. :) We know either way, God is in control. We appreciate every prayer you pray for us.....truly! We'll keep you posted!

Many have asked about his eyes. We're two weeks post-surgery and things seem better. Luke had his post surgery appointment 6 days ago. The doc under-corrected the left eye. He was pleased with this though because you never want to over correct. At this point, the doc sees that both optical nerves are, what he calls "pale in color". He says this is due to the brain bleed at birth. Both of Luke's pupils respond to light though, and this is a good sign that the nerves aren't too badly damaged. He also still suffers from a condition called nystagmus (jittery movement of both eyes). The eye doctor thinks this will improve in time also....and by "in time" he means years...by the time Luke is 5 yrs. old. So, we see some immediate improvements--better tracking, better eye contact, more accurate reaching for toys and faces. In other ways, we can still tell that is vision is impaired. We keep on....praying and waiting ...and praying some more!! Luke's a trooper and has the cutest little smile. He's pure joy to be around! What a blessing!

August turns out to be a big month!!

2009-08-13T23:49:00.001-05:00

Well, somewhat to our surprise, August has turned into a pretty eventful month for our Luke.

We had been told that once Luke was eating well and not using his feeding tube for three months straight, they would consider removing it from his belly. We were getting really close to having reached that goal. Besides taking 8 oz bottles on a regular basis, Luke has also made a decent transition to solid food (although he's not a fan of peas or green beans...or anything that's not sweet. Not yet! I'm workin' on him!). So, we felt very comfortable getting the feeding tube taken out. When I called to schedule, they said we could come in the next week. Great! On Monday, Aug. 10th, Luke had his feeding tube removed!! So far things look good. The "wound" (insertion site on his belly) seems to be closing up nicely. We have to keep some heavy duty gauze on it for now and change the dressing often, but by the end of next week, things should be better. Pray that everything closes up on its own. In some cases, the hole doesn't close and they end up having to do surgery to stitch it closed. But right now it looks like Luke's is closing and healing on its own. Thank God!

In an earlier post, I mentioned a recent EEG that Luke had, showing that he is at a high risk for seizures. Truly appreciate all of your prayers in regards to this aspect of Luke's health. We still have seen no seizure activity and thank God for that! Andrew and I really felt like we needed to go and consult with the pediatric neurologist after hearing the news on the EEG results. Again, the Lord helped us. It is usually a long wait to see this doctor. When I spoke with him over the phone, he had told me that we could come in at the end of year. I called back to ask to be seen sooner and we got in last Tuesday, Aug. 11th. :) The neurologist was very thorough and took a lot of time to visit with us and explain the results and his opinions on things. I can't really say I left with a peaceful feeling in my heart though. Something about this aspect of Luke's care just doesn't sit right with me. For now, we are following this doctor's suggestions: that Luke be taken off his current med, Phenobarb, and switch to another anti-seizure med, Topamax. The plan is for him to stay on this med until July 2010, at which time he will have another EEG to determine if he is still at risk for seizures. Keep praying with us on this. We've been made aware of a couple of different resources....experts in this field of medicine. We hope to follow up with these and make the very best decisions for Luke. In the end, it could be that we are already doing what's best for him. We just think we need to do a little more research until we can rest easy, knowing he's getting the best care.

The last thing I'll mention is Luke's upcoming eye surgery. Again, another surprise!! Luke had his eye appointment on Aug. 3rd. This was a scheduled check up and a time to discuss a possible surgery date. The eye doc had told us three months ago that he would like to do surgery to correct the crossing in both of Luke's eyes.....sometime after he turned one (October most likely). Well, at this this last visit, Andrew and I decided to go ahead and request an earlier surgery. Some of the research we've done has shown that performing this surgery BEFORE the age of one can actually lend the best results. We just really had a desire to have this done as soon as possible for Luke. To our surprise, the doctor responded, "Ok, let's do it in a couple of weeks!" So, Luke goes in at 6:30 am on Aug. 21 for outpatient eye surgery. We are anxious to see the results of this surgery. At the very least, it is a cosmetic fix. At the very best, it will improve Luke's interaction with the world around him and improve his development. Crossing of the eyes can cause double vision, dizziness, headaches, loss of depth perception, confusion since each eye is sending a different picture to the brain..etc. Since Luke can't tell us what he suffers from, we can only guess that he might be experiencing some these things. We are hopeful that the surgery will correct these issues and help Luke in so many ways!! His motor development has been delayed as he is still working on holding his head up, sitting up without support, rolling, etc. He's accomplished all these tasks, but he shows a lot of weak muscle tone in his upper body, and so these tasks are difficult for him to really master. We continue to pray constantly for God to complete His perfect work!!

The boys are both such great babies and it's so exciting to watch them grow and develop. We have A LOT to be thankful for!! Will keep you posted on the outcome of Luke's eye surgery. Thanks for praying with us NEXT Friday, Aug. 21st!

On the move!

2009-07-27T12:14:00.003-05:00

The boys are getting more and more FUN! Don't be mistaken...parenting has been fun from the beginning (minus the NICU stay). Any mother of twins can tell you though, that the first few months are just...well....WORK! There's just no way around it. Infants require a lot of attention and when there are two, it's simply double the work. I feel like we're finally getting into the season of double the FUN! :o) I recently posted a video on my Facebook page of the boys laughing at each other. It's the best sound in the world I think. More and more, they are starting to not just notice each other, but really interact. This has to be the best part of having twins. If it's true what they say, that the best gifts you can give your children are a healthy marriage between you and your spouse and a sibling, then twins have it pretty great if you ask me. A sibling right from Day 1!

Another fun moment over the weekend was watching Caleb army-crawl. Crawling is a progressive sort of skill....little by little babies sort of get better and better at it. Yesterday, I decided it was time to finally, officially mark the date (July 26th!) that Caleb started crawling. Andrew and I were getting ready for church. Normally we can leave the boys on the floor with a big pile of toys and they are pretty occupied for at least a few minutes. Yesterday morning, we did the same. I kept going back into the living room to check on the boys every minute or so. Well, in about 45 seconds flat, Caleb made it across the living room to the lovely green plant in our entry way and was about to have himself some breakfast!! Let the real fun begin!! So, now I'm off to baby-proof what I thought was already a very baby-proofed room. :) Mommy has a lot to learn!

Asking for more miracles!

2009-07-17T15:16:00.004-05:00

I've never seen Luke have a seizure. Each time Luke had a seizure in the NICU (I'd have to look back, but I think he's had 5-10 total), I was never around for some reason. Andrew was bedside for a couple of them and by the look on his face when he walked away from the bed and toward me, it's not something you want to witness. When I think seizures, I thing shaking of the arms and legs....rolled back eyes, etc. This isn't always how it is. In Luke's case, "having a seizure" meant a stiff body, constricted airway, skin turning blue and usually 2 or 3 nurses standing by "bagging" him. (think CPR).

So......you can imagine our disappointment this week when Luke's neurologist called to tell us Monday's EEG shows that Luke is at a high risk for seizures. The news hit hard. To tell you the truth, I haven't thought much about seizures for a very long time. We have a bottle of little white pills on our kitchen counter that say on the label,"In case of seizure, crush half pill and administer to child", but I really never thought we'd use them. In that past, Luke has had a seizure when he was A) critically ill or B) in the process of getting on or off a ventilator. We haven't seen any signs of seizure activity since we've had him home. The doctors have seemed fairly confident that Luke would outgrow whatever phase this was and would go on to lead a seizure-free life. And while he's been on anti-seizure meds for months now, it's been the same dosage. This means, that as he is growing (and, thank God, he's grown A LOT!), he hasn't required any more meds. So, all of this led me to believe, that even though we give Luke anti-seizure meds in his bottle twice a day, he really doesn't need it, and come July 13th when he had his EEG, the test would show that everything was normal and we could start weaning him off these meds.

Well, that's not the case. I really don't know many other details right now, except those words the doctor said over the phone..."It's way to risky to take Luke off his meds. He is at a high risk for seizures." He continued on with some generalized statements about the pictures of Luke's brain waves on the EEG and seemed, well, not so pleased I don't think with what he saw overall. Although the doctor didn't want to see us until October, I called and requested (perhaps insisted) that we go in as soon as possible. So, we will visit the neurologist on Aug. 11th, ask all of our questions, and, hopefully, have some more answers then.

This is what I know.....I don't want Luke to have another seizure...ever. So, I'm praying that he doesn't. I'm praying for God to continue what we KNOW He has started in Luke...a COMPLETE HEALING of his brain....for perfect order to be restored...for damaged parts to be made knew and for his motor/language/intellectual development to continue without any complication. I'm praying also that, since I am his primary caregiver that I will act quickly if there ever is an emergency and that I give Luke the best care possible. Finally, I'm praying for God's peace to settle down deep....really deep in my heart. I have to be honest and say the doctor's words have sparked new fears......do I let him sleep all night without checking on him...can I leave him in the church nursery, what if I walk in the room to find him in the middle of a seizure, what if he seizes in the car, what exactly did the doctor see in the EEG, will Luke be normal, etc...... as a parent, you can imagine all of the thoughts that begin to race through my head. I serve a God of peace and I'm praying he settles all of these fears and helps us rest easy knowing He really IS IN CONTROL.

The reality is "they' (and I'm referring to the medical staff in general....everyone who is overseeing Luke's care) have told us many things that haven't been true. Don't get me wrong. I adore medical professionals in many ways. They are true heroes, saving lives everyday. It's just with Luke, "they" have a terrible record. Just listen to what "they" have said about Luke:

* On the morning of my delivery, "they" said Luke wouldn't live.

* On the afternoon before Luke was scheduled to have a shunt placed in his brain, "they" said there was no possible way for things to improve. It did improve (overnight!) and no shunt was placed.

* "They" said Luke may not have enough intestine left after surgery to be normal. Instead he grew back all of the intestine that was taken out.

* When Luke became critically ill after intestinal surgery, "they" said Luke wouldn't make it through the night.

* "They" said it would take months for Luke's digestive system to get back to normal and that he would have diaper rash for two years. He has no rash.

* "They" said Luke would most likely struggle to learn to suck and eat from a bottle and that he may go on to have oral aversions to solid food. Luke has been drinking bottles like a champ since he got home and is now eating full jars of baby food and crackers.

* "They" said Luke's right optical nerve was 60% the size of what it should be and would not grow to normal size. At last check, both eyes have normal-sized nerves.

Do I go on? There's more....but I think you get the point. I think their predictions are right..in the natural sense. But God has supernatural plans!! There is no doubt!

Will you say a prayer (or two or three!) that Luke's brain will be healed completely? Pray for seizures to never be an issue and for Luke to be able to catch up developmentally to where he should be. We need miracles...that's for sure. God can do it. We get emails and cards and phone calls often, even still, with people saying God keeps reminding them of Luke. We keep praying.....and I believe God will keep answering.

Thanks for praying!!

Wow, what a day!

2009-06-30T10:46:00.002-05:00

Being parents is hard work...being parents of twins is often (in the infant stage anyway) double the work, and being parents of sick twins is...well, you get my drift!!

The boys haven't been sleeping or eating well since they feel pretty icky. None of us slept too great on Sunday night, so we were already going into the day rather exhausted.

Caleb and Luke and I made it to St. Johns hospital yesterday morning in time for Luke's head ultrasound. That went ok, although he cried through most of it. It involves nothing more than a head massage with an ultra sound tool, but he wasn't too happy. He probably just wanted to be back home in bed like the rest of us!

We came home and I fed both of the boys. Luke took 7 oz by mouth and a jar of baby food. Woo-hoo!! The most he's eaten in three days. I was really excited about this!! Since Luke hasn't been feeling great, we've been putting his feedings through the g-tube in his stomach (we don't use it normally, but it's pretty convenient for a baby that's not eating, has a fever and is getting more and more dehydrated. I found myself wishing Caleb had one too!) However, feeding through the tube didn't turn out to be as easy as we remember it being a few months ago. I'm not sure if it's the volume or what, but every time we tried to feed him this way, we sat him up to burp him and he threw up the entire feed! Ugh. Very frustrating! Anyway, you can see why I was thrilled he ate so much and all by mouth!

Next, we headed to pediatric neurology to hear the results of the ultrasound. THANKFULLY, Andrew was able to take a couple of hours off of work. Sitting in a waiting room with two feverish, cranky 9 month olds is not an easy task for one person. And we still had two appointments to go.

So, the ultrasound shows that the ventricles in Luke's brain look pretty much the same size they've always been. They don't want to do anymore imaging studies at this time. The plan now is that we'll go back in three months and they'll just measure his head, check for any other symptoms and then go from there. Luke's fontanel (aka, soft spot) is slightly bulging. They are a little concerned about this because it could signal increased fluid on the brain. They've instructed us to watch him closely... specifically for things like larger head size, extreme fussiness, vomiting, vision problems, etc. Right now there is no need for a shunt to be placed. The doc told us of a situation they just had with another set of twins. One twin was shunted, the other one had some fluid on the brain, but nothing major. Then, all of a sudden at 10 months, things got worse and they had to put a shunt in her also. Basically, what they are saying is, "We're not out of the woods yet, so watch carefully because Luke may end up needing one also." For those of you who have been with us on this journey, you'll remember the HUGE miracle that happened on the day of Luke scheduled shunt surgery. My faith was a little shaken yesterday because I just realize how fragile things are and how quickly they can change. But deep down, I know God is taking care of it. I'm really trusting for this fluid in Luke's ventricles to go down and for a shunt to never be necessary.

At the same time, we want whatever is best for Luke. Certainly increased fluid on the brain can cause developmental delays as well as other complications, so if the fluid isn't going to reabsorb on its own and starts to cause him some major issues, then a shunt would be the better option. Just pray for us to have the wisdom we need to see the warning signs of increase fluid, to push for more imaging studies if that's what needs to happen and to just make the right decisions for Luke. In some ways, I really want an MRI done. The risk of course is the radiation exposure. The benefits are that we would know for sure what things look like in Luke's brain. He's outgrown the head ultrasound (safer option) phase since his head will begin fusing together soon. So, an MRI would be the other option for imaging studies. Thanks for praying....I'll keep you posted on how things look in these regards.

GREAT NEWS....the boys are not terribly sick. Caleb's left ear looks a tiny bit pink, so the doc went ahead and prescribed antibiotics for an ear infection. He also has a croup cough. Poor litte guy sounds awful...and is beginning to sound like nothing at all. I've never known a baby to lose its voice, but he is. It's adorable and sad all at the same time. But boys' lungs sounded great (YAY!! preeemies are very much predisposed to lung/respiratory infections). They have come into some sort of viral respiratory issue. So we just have to wait that out and pray it doesn't turn into anything worse, like pneumonia. Luke isn't on antibiotics. He still has a slight fever this morning and the poor little guy has broken out in a rash. The doc thinks hives...eczema. You can tell it itches something terrible and all we can use is Hydrocortizone cream, which only brings so much relief.

Thanks, as always, for your continued prayers. I'm so amazed by God's constant, day in and day out, faithfulness to us. Our God is so good.

Oh...their weights ..I almost forgot. Caleb is now 19 lbs 10 oz and Luke is 17 lbs 8 oz. The most exciting thing about this I think is to see how much Luke is gaining on Caleb. At one point, they were nearly 4 lbs apart. YAY for weight gain!

Monday

2009-06-28T22:29:00.002-05:00

The next three Mondays will be important for us. Tomorrow Luke goes for his head ultrasound. The doctors are checking on the ventricles in Luke's brain to see if they are enlarged any more than they were back in March. We used to have to check this every other week, then once a month....and now just once every three months. We'll have the ultrasound in the morning at the hospital and then head over to the pediatric neurosurgery office to go over results and discuss whether or not a shunt would be necessary at this point. We've been praying for a long time now that the ventricles would not enlarge anymore...I'm really hoping to hear that they've actually decreased in size. The danger of enlarged ventricles is simply that the extra fluid in the brain is causing pressure on the brain tissue itself and that, of course, is not good.

The following Monday, July 6th, Luke and Caleb both will be heading to the doctor to get their nine months shots. That's never a fun day for anyone. I think it's worse as they get older. Since Andrew can't take off work that day, so my friend, Drusie, is coming with me. Thank goodness!! One mommy plus two screaming babies doesn't work out too well. It'll be great to have her help.

Finally, Monday, July 13th Luke goes in for an EEG to check on any seizure activity. Luke's has been on anti-seizure meds since October. We don't really think he's had any for a very long time, but they've kept him on meds as a precaution. The EEG is interesting. It has to done when the baby is "sleep-deprived" (apparently, sleep deprivation triggers seizures, so if you're going to have one, that's when it might occur). So, on July 13th we'll have to wake Luke up at 4 am and try to keep him awake until his 8 am EEG appointment. Now there's a Monday morning for ya! Wow...not looking forward to that. I AM looking forward to getting Luke off of his anti-seizure meds. As long as everything looks normal, we can start weaning him off. At that point, Luke won't be on any medications!!

Thanks for your prayers in the next few weeks. In addition to our two appointments tomorrow for Luke, I'm also going to have to take both boys to see their pediatrician. They have both been running fevers this weekend and don't seem to be feeling too well. It's so sad to have sick babies. Of course, we're familiar with this feeling, but since they've been discharged, neither of the boys have been sick AT ALL!! So we were getting used to healthy, happy babies. It's been hard to see them feeling so icky the last couple of days. We're praying for quick recoveries! My sister was able to visit this weekend from St. Louis. It was so great to have Aunt Kari here to help snuggle the little guys. Hopefully next time she comes, Luke and Caleb will be back to their healthy, spunky selves!

Big Day!

2009-06-12T11:15:00.007-05:00

Well, today is a milestone in our home. Luke has officially been home as many days as he was in the hospital!! Today is his 130th day at home. I know it might seem strange to count the days like we do, but somehow going through an experience like this makes you appreciate every- s-i-n-g-l-e- day.

Things are going really well in the Lundgren household! We just enjoyed a great visit with my parents. Dad was here two weeks and mom stayed about four weeks. The highlight of their time here with us was traveling to Pennsylvania to visit my mom's family. We recently bought a 2007 Toyota Sienna mini van and decided to put it to the test and make our first road trip as family. The six of us loaded up and ventured out on the 17 hour journey. Of course, with two little ones, you have to stop A LOT so all in all, it took us more than a day to get there. Luke and Caleb are amazing travelers!! They did so great!! (That's good to know, considering they'll probably be doing a lot of traveling in their lifetimes.) Anyway, we really, really enjoyed time with my extended family. With so many Italians in one room, you're bound to have a lot of fun!

I wanted to give a quick update on little Luke today. I blogged about a month or so ago about several things we are praying really hard for these days. One of those areas of concern is Luke's eyes. We were told back in February that Luke's right optical nerve was about 60% the size of what it should be. The doctor didn't have any hope that it would grow to a normal size, but told us the small size may or may not affect Luke's vision. Andrew and I have been really concerned about Luke's eyes since about 4 days after we brought him home. Those of you who have been able to interact with him in person will know what I'm talking about. He struggles to focus, track, interact with those around him. Well, we went back to the eye doctor on May 13th. The doctor told us that BOTH of Luke's eyes have normal-sized optical nerves! He admitted that on his report he stated otherwise back in February and couldn't really give us an explanation, but "somehow" (in quotes, because we know it's God hand on Luke!) things are normal now. Luke does suffer from a condition called nystagmus. This causes his eyes to be very jittery, making it hard to focus. There is no treatment for nystagmus, but it does often improve, although the doctor could give us no guarantees of that of course. Another concern is that both of Luke's eyes have some crossing going on. The doctor considers him a good candidate for surgery to correct the crossing. This would be outpatient surgery and would be done after Luke is one year old. Overall, the eye doctor is quite hopeful that Luke will have pretty decent vision, but as with most everything in Luke's little body it's a "wait and see" situation.

All we know, is that each day, his eyes seem to be better....better in the sense that he can focus better, hold his gaze longer, track better, etc. We really thank God for this and thank YOU for praying!

I'll post more info later about upcoming Dr. appointments for Luke and other things that are going on with him. He's a sweet little guy....smiling and laughing and making our home a really happy place! I'm uploading a short little video of Luke. Again, for those of you who have spent some time with him, you know how awesome it is that he's actually looking in my direction and watching my hand, etc. Just wanted to show you how much he has improved! Thank God!!

They're coming tomorrow!!

2009-05-12T15:15:00.002-05:00

I am just so excited for tomorrow! My parents are flying in from Belgium for a visit. Luke and Caleb haven't seen Grandpa Hoggard since they were in the NICU. Boy, is he in for a surprise! Of course, he's seen many pictures and videos but it's just not the same. My dad will get to stay two weeks and my mom will stay for a month! Yay!!

Something about having kids just makes you miss your parents even more. I mean I've lived on a different continent than them for 12 years now (wow, has it been that long?!) and I can't say it ever really gets easier to be apart. You can kind of get used to it, but it's never easy. Since the boys have been born, though, I've missed them so much more. I'm so glad we'll get to spend this time together!!