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.

Meet me in St. Louey

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

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

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

"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

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.