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!!

Scratch that

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

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

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.