Illinois in the Fall

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

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."

t

e

a

r

s

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

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

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

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

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.

or

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

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!!