Sunday, October 6

Miracle League Baseball

Bryce participated in his first baseball game today. It was only 2 innings long and no one got out but he didn't notice. He batted for a home run in the first inning, with just a little assistance from yours truly. 

After I was able to escape the field he did well on his own, with his buddies, and enjoyed a second inning RBI and some fielding with his coaches and buddies in the outfield. 

I had pretty much given up on ever getting the chance to watch Bryce play my favorite spectator sport. Today was a dream come true. 

I can't wait to see how the weekly games improve his independence and walking endurance. 

-one proud mama

A family selfie - one full face and several partials will have to do. 

Tuesday, August 27

First Day of School

Today is Bryce's first day back to school. I'm not going to cry, I'm not going to cry...okay maybe just a little. 

I can't believe summer has come and gone. It's often hard to mark the passing of time with Bryce - his abilities are not vastly changed (though progress has certainly been begrudgingly made), his feet are one size bigger and his glasses new but his clothes from last year still fit. Despite the typical signs of your child growing older and bigger, time still moves as fleetingly. 

Soon we'll have to figure out where Bryce will go next year, we'll have to settle in for a fight against kindergarten and a serious look at alternatives. 

But today I'm just going to relish in the pure joy of having two amazingly loving and sweet little boys that will let me hug and kiss on them {almost} as much as I want. 

I'm going to focus on summoning the will to make the tough decisions (therapy, back to MI, kinder, Botox, posterior v. anterior walker, insurance...and the list goes on and on) over the coming weeks and months. I'm going to soak up all the little boy love I can and will Bryce's first day into an exciting, fun and friend filled success!

We have so much to be grateful for today! 

His favorite teacher was just as happy to see him as he and I were to see her. 

He was so excited he could barely bother looking at me while waving good-bye. 

I am so, so proud of how brave and confident Bryce is despite his challenges. 

And there went my heart, without even looking back...

Thursday, August 8

Ready to Go, But Not Ready to Stop

I know I should be overwhelmingly happy to be going home, to be getting back to normal and to be sleeping in my own bed again. 

And I am but the truth is - it's bittersweet. 

I do miss home but I've seen the other side, the vast potential that is Bryce, and it's utterly addicting.

Bryce has been in therapy a minimum of three times per week for the last three and a half years, since he was six months old and one month out of the NICU. 

I believed fully that we were doing everything we could for him, that we were giving him every possible opportunity and that the progress we were seeing was his full potential for change. 

I have to admit that while I was hopeful, I was also weary. I came here with an open heart and a doubtful mind. 

Y'all - it was so much more than I could have ever hoped for, so much. 

Sure, I would have loved for Bryce to have come home walking independently but that simply wasn't realistic. I have seen him make full-scale, across-the-board progress that makes his past progress seem just silly. 

And did I mention, I witnessed full blown, absolutely independent steps? FOUR of them!? 

I'll admit that I was skeptical. I was raised to question everything and that if a thing seems too good to be true, well it probably is. 

But this place is the real deal. I've personally witnessed subtle, consistent changes in Bryce including:

- increased walking endurance
- a longer attention span
- more safe walking and transitions in and out of the walker 
- putting hands in front of his face to brace against falling (this is epic - maybe no more ER chin stitches!)
- more consistent use of right hand
- using BOTH hands together (unless this is a problem you battle, you can't begin to understand how much it changes everything about your day and daily routine)
- longer periods of stable, independent standing
- more often standing up from the ground completely independently
- vastly increased vocalizations
- much, much more intentional "communication" coupled with an eagerness to communicate we've never before been privy to
- more social independence
- and more!

Seeing Bryce have the opportunity to exceed his own, and our, perceived limitations, interact with peers and be in a group of children with similar challenges has been life altering. The way he lights up when we run into another kid from the CLC almost makes up for the 10 extra minutes that means it will take to reach our destination. ;-)

The conductors here have this perfect balance of stern, do-what-I-say and loving affection that results in optimum performance. If I could take them home, if that were an option, I'd do it in a heartbeat and figure out the details later. 

Unfortunately, that isn't an option and so now I begrudgingly prepare for our return home while trying earnestly to figure out how to continue this forward motion and get back here as soon as possible. 

The simple fact is that every step of progress, every milestone before this came so slowly that it was hard to even celebrate. Bryce didn't roll over until after his first birthday, he sat up independently just before his 2nd birthday and only began walking with a walker at 2 1/2 years. His endurance walking in the last 1 1/2 years has limited him to short distances at home or school. 

His progress in the last five weeks is incredible and, as I've said to people here many times over the last week or so, I'm ready to home but I don't want to stop. 

Unfortunately, that isn't realistic. And so to home we go, with a heavy heart and hopeful eye. 

Monday, August 5

Liebster Award

This little blog has been nominated for the Liebster Award! 
Thank you to The Farrell 5, for the nomination.  The Liebster Award is a fun way for bloggers to give recognition to other small bloggers (with 200 followers or less) for the contributions they make to the blogosphere.
The rules are:
  • Thank the Liebster Blog presenter who nominated you and link back to their blog.
  • Post 11 facts about yourself by answering the 11 questions you were asked and create 11 questions for your nominees.
  • Nominate 11 blogs who you feel deserve to be noticed and leave a comment on their blog letting them know they have been chosen.
  • Display the Liebster Award logo.
  • No tag backs- you can't re-nominate the person who nominated you.

The questions given to me (with my answers) are:
1.  If you could re-live one day of your life so far, what day would that be?
A hard question right off the bat!  Can I change my actions on that day?  If so, then I'd definitely relive the day Bryce was born.  I'll never fully get over the guilt of not going to the hospital immediately when I suspected something was wrong. 
2.  What is your greatest accomplishment? 
100% my two amazing, sweet, smart and incredibly handsome (biased?) little boys!
3.  What is your favorite meal?
Anything deliciously Tex-Mex from Chuy's...and if you don't know Chuy's stop reading right now and go find out!
4.  What is your favorite book?
This is constantly changing but right now I love reading The Pout-Pout Fish by Deborah Diesen to the boys.
5.  If you were to change careers, what would you do?
I'd be a children's therapist.  We've had many over the years and I think it's a job I would love.  Actually, I guess I kind of already have this job, I just don't get paid for it ;-)
6.  What kind of jobs have you had?
My very first job was picking up pecans from our front yard - my dad paid me a penny a piece.  Funny, I work for him today as well.  In between, I was a sandwich artist, a bartender and an office manager.
7.  What is the best thing about where you live?
Um, it's in the great state of Texas, obviously.  Plus it's close to family and that's what it really is all about!
8.  Tell us something about you that most people don't know.
I can pop my big toe on my right foot over and over and over and over.  Most people probably don't know that because they don't care. :p
9.  What is your favorite thing about being a mom?
Why, cuddles and snuggles of course!
10.  What is your favorite age (of kids)?
So far, 6 months to one year.  They can't get far, they smile every time they see you (just because), they are sleeping or are close to sleeping through the night and they will still cuddle endlessly.  It just doesn't get any better than that.
11.  What is your favorite baby or kid product?
Our new (to us) Chicco Clip-On High Chair.  I got it just before we came to Michigan and it has been a life saver.  I think we'll continue using it at home to save room as well.
I nominated the following blogs:
Here are my 11 questions:

1.  What is your biggest fear?
2.  What is your super power?
3.  How do you deal with bad news?
4.  What is your favorite thing - EVER?
5.  What song do you listen to to make you happy?
6.  What one place have you always wanted to go?
7.  What do you hope your children will learn from you?
8.  How do you want to be remembered?
9.  What is your best parenting tip?
10.  If you could choose to be any age right now, what age would you choose?
11.  What one person - dead or alive, famous or not - do you wish you could meet?

Sunday, August 4

Week 3, Part 1

Week 3 started out great. We met up with another family Tuesday evening in Rockford for some live blues music and a stroll by the river. The weather was beautiful, the company great and the boys love live music of all kinds. 

Unfortunately, on Bryce's walk back into the hotel that evening he let the front left wheel of his walker fall off the edge of the curb and he broke his fall with his chin. Since he split it open 6 months ago it's a weak spot and split right back open. Luckily, one of the hotel employees helped me get the boys and all of our stuff back to the room. I had to carry a bleeding Bryce and otherwise would have just left everything but Gage on the curb out front. 

We ran into the grandmother of another CLC kiddo at the elevator and she walked into our room minutes later offering her help. I quickly put Gage to bed and she sat with him so I didn't have to drag both boys to the ER in the middle of the night. Thank God! And did I mention a few hundred times that the people here are SO nice!?!

Helen DeVoss Children's hospital made it an easy task - I mean free valet at the ER entrance, Cars on demand on the tv, they played Jack Johnson for him during the stitches, pre-numbed his chin (awesome!), gave him a truck and a slushie! And we were immediately triaged and sent to a room for registration. Dell is nice but this hospital has the kids ER thing down to an exact science. 

We went from above to below in about an hour!

The in between was gruesome and difficult but three of the four stitches came out Tuesday (who knows what happened to the other stitch) and healing is coming along nicely. 

Camp was good, no new exciting news just lots more hard work for Bryce. We were so excited though to pick up Poppa and G2 on Friday after camp for a short visit!

We spent the weekend with them in the Traverse City area north of Grand Rapids which was a nice escape that would have been even better if it hadn't been freezing (disclaimer: my idea of freezing might differ slightly from that commonly recognized by the scientific community) and raining the whole weekend. But we still saw some great stuff, my favorite of which was the Sleeping Bear Dunes (450' dunes!):

We also ate some really yummy Cajun (no, really!) food in Elk Rapids and visited a park on the beach despite the weather. 

And visited the lighthouse, which was literally just a house with a light:

More soon...

Monday, July 29


I owe you all a three week wrap up but I couldn't help but post this right now. 

Today after we picked Bryce up from camp we (my dad and Sharon are here visiting us - Hallelujah!!) took him and Gage to the play area at the mall just up the road. We've been a few times before because they really like it and it's convenient, free and safe. Oh and it's all breakfast themed, which I think is really cute. 

Today was special though because as my dad and I were watching Bryce watch another mom try to get her baby to walk we witnessed Bryce take 4 very deliberate, completely independent and controlled steps. 

He was standing leaning against the giant waffle, stood up and walked four steps before sitting down. And absolutely refusing to show the least interest in repeating it for me to video or G2 to photograph. 

It was amazing and I'm so glad my dad was standing there next to me to see it!  

We ended this awesome day with a world class sunset that pretty much sums up the way I feel about my little trooper, this amazing place and finally getting some much missed time with family!

Saturday, July 20

Week 2 Wrap Up

 We had a great weekend last week, venturing out to the zoo, the lake Michigan beach in Holland and other local attractions. Everyone here is so friendly but the weather has been warmer than we hoped. From talking to family in Austin it sounds like we brought the hot with us and they got the weather we had hoped for here.

On Monday I was able to observe Bryce in the classroom during the morning. It seems the magic is in the consistency, routine and repetition. Which of course means there is no magic at all.

Bryce is one of the faster moving kids in the class so I was a little frustrated to see how much time he spends waiting. Waiting for everyone else to get to their spot or to finish a task. But since patience is not a virtue he was blessed with this I think this is actually a good thing for him. He's being forced to stop and wait and hopefully learning that it is possible to do. 

I'm sorry to report that the two of us have been butting heads quite a bit. I was happy to learn during my afternoon observation yesterday that his poor behavior - out right refusing to cooperate and repeatedly doing what he is told not to (like shoving Gage) - are not behaviors he demonstrates in the classroom. It seems that he saves this special behavior just for me. 

An example would be yesterday when they were eating lunch. Bryce had chicken nuggets and the conductor had helped him cut them so he could use his fork to eat them - something he is capable of doing with just a little focus. He correctly did so several times until the conductor felt comfortable letting me step in. Which is when he began refusing to use the fork and insisting on just picking up the pieces with his hand. No matter what I tried, I could not get him to cooperate. If I tried hand-over-hand he would use his other hand (use of his right hand = bright side) to pull his hand out of mine, push me away or actually pretend like he was going to do it but then grab the chicken with the fork hand when close enough. 

I don't think his conductor believed me when I said we'd been struggling at "home" (the hotel) with this until she saw it for herself. She said that sometimes she has to remind him of the right way but that he never outright refuses like that for them. Thank goodness!

On the other hand, at "home" and camp he's been doing great with his potty training.  I think it will still be awhile before we can expect him to be able to venture outside the house or school or go over a nap or the night without a diaper.  But we are already doing so much better than I truly hoped we would be even a year from now before coming here.  Yesterday he kept his diaper dry all day and went potty in the potty 7 total times!  We haven't moved to the underwear yet but I am hopeful we will before the end of camp.  As long as I keep up my end of the bargain.

At pick up everyday each kid walks out and the parent gets a short visit with one of the conductors.  Thursday Bryce walked out with the quad canes (a cane with four points at the bottom to provide more support than a standard cane).  I suspect we'll be moving to either a forward walker (Bryce currently cruises around pretty well with his posterior, or rear, walker) or possibly some sort of cane.  But both are very much different than his walker - a pushing motion as opposed to a pulling motion - so we'll have to see how it goes.  He is very unsteady with both right now and far from safe or independent, which he barely is with the walker we've had for the last couple of years.

During the Thursday chat with his conductor she warned me that we really need to work on completing tasks.  She is concerned that Bryce's inability to stick with something until completion will inhibit his ability to move forward at all with any of his skills.  I completely agree but this is something we've struggled with since he began therapy at six months old and will probably be something we always struggle with.  Her point was that if he can't stop to focus on something and put his mind to it until it is done he's going to have real trouble learning, making improvements and moving through milestones.

But at pick up yesterday his other conductor said that they have seen a steady increase in the time he can sit during class and pay attention to what is going on.  She said that on the first day of camp he couldn't sit still for more than a minute or two at the most but that yesterday he was doing so for 15-20 minute stretches.  He still needs a lot of improvement but this is great news because it means he's getting better and will be able to continue benefitting from the program.

I'm happy to report that Caleb is here now and we have a big day planned at the beach so I'm done blogging and off to enjoy this very special treat!  Have a great weekend everyone and thanks for checking on us!

Thursday, July 11

Day Four Wrap Up

We've wrapped up day four at summer camp and are happy to be finally settling into a routine.  I won't lie - there are at least a couple of times each day that I ask myself, 'What have I gotten myself into?"  But then I talk to a veteran CLC parent or see the special, sparkly pride in Bryce's eyes and know we've made the right decision.

Immediately after dismissal yesterday I had Bryce's conference with his conductors (teachers/therapists).  The main purpose was for them to have a chance to get a full grasp on Bryce's (extensive) medical history, his current schedule and routine and our hopes and goals for camp.  I appreciated the one-on-one time and their genuine interest in getting to fully know Bryce.

While we were there, they showed me a new walker they are trying with Bryce.  Unfortunately he took a pretty good spill and so I didn't really get to see.  I'm hoping to have more on that soon.

They are also trying some orthopedic shoes that they had on hand.  They think he needs some more ankle support to keep from over-extending his calves/ankles back.  He has a tendency to lock his knees and extend his calves back behind his heels to help steady himself and make up for his poor core and hip strength.  The shoes, which look remarkably like a hiking boot, seem to help but they also seem heavy so I'm still waiting to see how they work out before we sink a couple hundred bucks into a pair of his own.

The last big thing they've been working, and working hard, on is potty training.  I remember when Bryce was two thinking oh, maybe he'll be potty trained by 3 or 4.  Last month on his fourth birthday, I honestly thought it would be another couple years still.  But they've got him on a potty routine, are working on earning "wishes" (isn't that a way better word than reward?  I mean, who doesn't want a wish!?) and insisting that I keep up with it at "home."

Let me tell you, potty training is exhausting!

It's way easier to just throw on a diaper and go.  But I know this will all be worth it for Bryce.  So we're constantly on the potty: picture me in a perpetual state of completely folded over whilst being climbed by a very mouthy little one-year-old and hefting 27 pounds here, there and everywhere.

We're all learning to be more patient.

Tonight was a great success too!  He kept his diaper dry from when he woke up from his nap until bedtime.  Apparently he also kept it dry all day at camp yesterday (not sure about today, no report).  He's doing so well, even, that they suggested we bring in some underwear for him to possibly try in the next few days.

Underwear, people - UNDERWEAR!

I happily drove us all to the nearest Target to get the smallest sized super hero underwear pack they carry.  And the day he starts wearing them successfully I will shout it from the mountain-tops.  Or at least the blogoshpere. 

They like for parents to observe one morning and one afternoon during the first week but since I didn't know that and have no one here with me (who's crazy?) I haven't been able to do this.  I'm really chomping at the bit to get in there and see what the heck is going on.  Fortunately, the vast majority of the families here have been here many, many times before.  Several have teens in the program that started at young as Bryce and many remember what it's like to be out here with little ones in tow.  To say they've been welcoming would be an understatement.  One such mom and former little one have agreed to watch Gage for me next week so I can do my observation time.  Yay!

So that's it for now.  It's going to be hard to compete with day two news, I know.  Trust me, I know.  But here's to appreciating the now and looking forward to the future too!

Thank you all for your support - we love and miss you!

Tuesday, July 9

Tears of Joy Today

Today was Bryce's second day of summer camp and I honestly didn't expect a thing. 

I most certainly didn't expect to peak around the corner to his classroom at pick up and see him WALKING!!

The look of pride and joy on his face was the most incredible thing I have ever seen. 

He was holding a loose piece of rope in both hands, I'm not clear on that method yet, and his conductor was walking backwards in front of him. She counted two steps and then gently touched his chest, reminding him to stop and find his balance. They did this for at least 6 steps before he got to me. It was amazing and I balled like a baby. 

Another mom put her arm around me, totally understanding the significance of the moment. She said it's hard to put into words the amazing things they do here and I said we could go home today and this would all be a success in my mind!

I can't wait to see what the next few weeks have in store for our Bryce!!

Monday, July 8

We Made It!

What a trip?!

We are officially in Grand Rapids and more or less settled in. Caleb is right now flying back to Austin, the boys are sound asleep in their "cribs" and I have a boat load of work to catch up on.

Just wanted to take a second to let everyone know we arrived safely and Bryce's first day of camp was great. He had a huge grin on his face when we picked him up this afternoon and the first thing he did was show off how well he can stand on his own for the entire classroom's parents.

I'll post more later but so far so good!

Sunday, March 10

Goodnight Bryce

As I lay you down to sleep
You hold me tight -
And I remember when

As I tuck you in tonight
I remember when I had to leave

You are so big and brave today
But wasn't it just yesterday?

Yesterday you lie so still
Always awaiting my return
I'd wipe your brow, say a silent prayer
That tomorrow you might lay with me

Now you're three, almost four, years old
But always my sweet boy you'll be

No matter how much you grow
Or how old we are
My baby I will always see

Fighting so, for your life
Now you'd never know

But mommies can't forget
Don't want to

I relish every hug and kiss
Awaiting your sweet words to me

Thank you for teaching me so patiently
What life really is to be.

Wednesday, February 27

We're IN!!!!!

It's official.  After much too much anticipation and excruciating waiting, waiting and more waiting...I just received Bryce's letter of acceptance from the Conductive Learning Center in Grand Rapids, MI. 

He'll be attending their 2013 Summer Camp in the Early Childhood Group.

Can I just say, "YAY YAY YAY YAY...."!  We are beyond thrilled!

And then can I further say thank you again to each one of you who has supported us in the endeavor, reached into your pockets and donated for Bryce or even simply helped spread the word.  I feel immensely blessed to be able to pay the $800 deposit by March 29th and the remaining $2000 tuition balance by April 15th without stress.

I know I've said this before, but I just have to say it again.  I honestly never dreamed that we would raise all of the funds necessary for this adventure.  I just assumed we'd raise as much as we could and then start selling kidneys, or whichever organs fetch the highest dollar, to pay the remainder.

My kidneys thank you.  As does my heart.

With a heart full of gratitude and excitement,

Wednesday, February 20

Communicating with a Non Verbal Three Year Old

We still don't know anything about Bryce's acceptance into the Conductive Learning Center's summer camp in Grand Rapids. So I'm going to do a little distracting with tonight's post.

You've heard it a bajillion times before: communication is key. And it's so true. Though many of us struggle with it for one reason or another.  Bryce struggles with it daily, hourly maybe even from minute to minute.  Thankfully, it doesn't seem to bother him nearly as much as you would imagine.  And no where near as much as it would bother me!

But I digress.

What I'm getting at is there are some exciting things on the horizon.  Last week I was lucky enough to be invited to attend a communication workshop for children with visual impairments along with Bryce's teacher, vision instructor and school speech pathologist.

I think they all already knew everything Phillip Sweagert had to say that day.  But I learned a LOT.  And even better, I got the chance to spend an entire day talking about Bryce with some very special ladies.  I have to say as well, amongst the 5 districts with children in the workshop that day none of the others had parents in attendance.  Leander was there with two children, Bryce and a middle-schooler, both of whom had entire teams on hand that included moms. 

Now I could assume that Leander has some pretty special moms, and while I don't doubt that, I fully believe Leander has some pretty amazing special needs teams.  As a matter of fact, the lead speech pathologist for Region XIII, who hosted the workshop, took video of Bryce's teachers materials to share with the other 59 districts in the region as an example!

Now if I could just get that amazing system together at home and actually use it we might be getting somewhere.  But it just ain't ever that simple.  I've got a lot of work to do and very little extra time to do it in.  I'm excited though and can't wait to get it going and share the process with any other special needs moms out there that might be struggling through these same challenges.

Anywho.  I said there were exciting things and that wasn't even it.  So here are the top 3 reasons I'm excited about Bryce's communication right now:
  1. While at hippotherapy this week, Bryce's PT reported that he used 3 signs together without prompting.  He signed, "Go horse, please."  Not only is he using more signs but he's bossy and polite about it.  I knew that kid was mine.
  2. Bryce's teacher reports that yesterday he was trying to get her to do something with her.  She didn't understand what he wanted so he used his walker to walk to her, grab her hand and proceed to pull her in the direction he wanted her to go.  That doesn't seem like a big thing but it's a whole box on the communication matrix, y'all!  And going that extra step to really try to get his point across, well, well that takes me to 3...
  3. Today I earned the mommy of the year award when I bribed Bryce with a package of 2 Oreo cookies in order to get him to take a nap.  He came home from school wound up like a top and I knew if he didn't get a nap soon it would bad.  Really, really bad.  So I used my tools of persuasion, what can I say?  Of course, I had to deliver after he napped.  But you wouldn't believe how quickly that skin and bones kid can take down to Oreos.  And when they were gone he was using his "B" sound to get my attention and furiously signing more.  I kept explaining to him that there weren't any more cookies (it's no accident we don't keep cookies in the house).  I'm not sure if he didn't understand or just didn't want to hear what I was saying but he began to cry.  Again I explained and again he signed more.  Then out of frustration he picked up the tiniest little crumb of a cookie, held it out for me to see and then signed more in the most assertive way I have ever seen him sign anything.  We still didn't have cookies but I promptly got him some organic chocolate graham bunnies.  
All three of these things seems small and inconsequential but I'm telling you, my mommy intuition is working in over drive and I have a good feeling that these are building blocks.

I'm so excited I could go buy some Oreos right now.

Well, that's all for today.  Sorry there isn't more to say about summer camp.  But I'll be in touch.

Wednesday, February 13

Thank YOU!

I want to update you all on the status of Bryce's application to the Conductive Learning Center in Grand Rapids but first I just have to take a moment to express our immense gratitude.

We honestly did not believe that we could raise the minimum amount of money we needed in order to make this trip possible. We figured it was a long shot that we just had to take.

Boy, did you guys ever prove us wrong. And I've never been so happy to be absolutely, categorically wrong, wrong, wrong.

Our small network of friends and family spread the word about our fundraiser and we stood by in shock every single day watching the donations pour in.

The fact that complete strangers reached into their pockets and donated their hard earned money for our little man leaves me speechless. Well, almost.

I hope that every single person who donated, spread the word, supported our fundraiser or sent up a prayer for us is reading this right now.

Because I need you to know that we are eternally grateful. Not to mention completely astounded by your generosity. Thank you from the bottoms of our hearts.

As for Bryce's admission status.  We don't really know more than we did last week. 

I spoke to the director and she said that she has reviewed Bryce's application and assessment video and feels very strongly that he would benefit greatly from the program.  She said that she had no doubt that he could make great strides toward becoming more independent. 

BUT that they need another couple of weeks to review all of the applicants before they can say whether they will have a spot for our Bryce this summer.

The last thing she said was that she hopes that if Bryce doesn't get to go to their summer camp this summer that we won't give up and that we'll make every effort to get him into a conductive education program somewhere, sometime.  She was of course saying that they have other programs that run throughout the school year at their center but also that he should just go somewhere.  She said that she felt like it would open his world up to so many new opportunites for success and independence that it would be a shame if he didn't go. 

With that said, Bryce will be going somewhere.  Our first choice is this center in Grand Rapids in the summer but if I have to fight the school district to get him a month off during the school year to go or if I have to take him to a more expensive program in some other state - we will put your donations to use for Bryce one way or another!

Thank you for believing in us and our little guy.  And thank you a million times more for your support and generous donations. 

I hope to be back next time with celebratory news!

Thursday, February 7

No News is... Good News?

Just wanted to post a quick update to say we still haven't heard from the Conductive Learning Center. We still don't know if they are going to be able to or want to accept Bryce into their summer camp.

I definitely expected to know by now and that is starting to concern me. We have a second and third choice school but each would be more expensive than the previous.

Lucky though we have had the most heart warming and, honestly, completely surprising outpouring of support. At this rate we might actually be able to swing those other options. If need be.

{I have a whole other post planned on the fundraising but can I just say - thank you to each and every one of you from the bottom of our grateful hearts!}

We still have our hearts set on Michigan. So if I don't hear by lunch tomorrow, I'll cease not bugging them and call them myself.

You'll be the first to know!

Fingers crossed. XX

Monday, February 4

Steady Progress


How awesomely blessed are we to have such an amazing group of friends, family and extended network!?  With your support and beyond generous donations to Bryce's fundraiser we've raised an astonishing $2,325!! That's quite nearly half of our total goal!
I honestly never dreamed we would be able to raise the money by our goal date in April but at this rate I think we just might get there.

Woo hoo - you guys are the bestest!! 

The Application Process

We've completed the application process and I spoke to the director of the Conductive Learning Center today.  She said that she had already reviewed Bryce's application and would be looking at his video this afternoon.  

We spent some time trying to capture what Bryce is currently capable of, based on the recommendations for the video assessment given by the center.  Not being absolutely sure what they were looking for was hard since I really just want them to accept him but I guess they have their methods.

Here's what we sent:

The director said that I should expect to hear back from her if I could only make it come a little quicker!

Friday, February 1

Help Bryce WALK Fundraiser

We've officially begun fundraising for Bryce's 2013 Conductive Education Summer Camp at the Conductive Learning Center in Grand Rapids, Michigan.

We started yesterday afternoon and have been humbled by the generous support of our friends, family and extended network. We have already raised over $500!  And while that is just a fraction of the total we will need, it makes this seem like a real possibility.

Our fundraising goal is $4,810. I know that is a LOT of money so I'm going to break down how we came to that total.

We're using the online fundraising tool Fundly, which allows us to accept credit card donations from anyone interested in helping Bryce reach his fullest potential.  It's a fantastic tool because our supporters can donate as well as share our story and fundraiser with their network of friends and family via Facebook, Twitter and Email.  We're already impressed with how this has helped to spread the message and optimistic it will further enable us to reach our goal.

I hope you will consider donating to our fundraiser.  But if you can't (and if you can too!) please click on the image above and become a supporter - then tell everyone you know about Bryce and the big plans we have in store for our little fighter!

I'll be posting updates as we produce Bryce's assessment video, progress toward our goal, plan other fundraisers and know for sure that Bryce has been selected for the camp.

Wondering what happens if they don't accept Bryce's application?  That won't stop us!  We have a second choice camp in Orlando, Florida as a back up plan.  No matter what I have to do, we'll get Bryce into a program!  Thank you for your support and generosity!

Much love & appreciation,

Wednesday, January 30

Exciting Possiblities

Many of you may already know that Bryce is no longer receiving his regular therapy, except for hippotherapy. We had an insurance change effective November 30th that left us with no coverage for the sessions of physical therapy, occupational therapy and speech therapy that Bryce has been receiving at least weekly since he was six months old.

I didn't blog about it because, quite frankly, I was devastated. I felt like a failure. Valid or not, that is how I felt. My job as Bryce's mom is to care for him and give him every possible opportunity to reach his full potential that I possibly can. And in my mind's eye, that means I should be doing everything there is to be done. I considered regular therapy to be a vital part of that plan.

First I panicked, then I resigned myself to it and decided to enjoy the holidays and our time together before really getting down to brass tacks and figuring out our next step. Well, as the holidays came to a close I noticed that my feelings had begun to shift slightly. We had never had a real break from therapy and it was good to see that Bryce could continue to make some progress even without it. His speech is still a huge worry for us, especially since he's made little to no progress on that front in I don't even want to think about how long. But Bryce has begun balancing to stand for up to 20 seconds at a time.  And our little turkey could definitely stand longer if he wasn't so determined to take a step, too!

Despite coming to terms, I've been racking my brain every second of every day trying to figure out our best next move. I'd considered leaving a job I love to find one with insurance but realized I'd have to work outside our home full time and then when and how would Bryce get to his 5 or more hourly therapy sessions per week?

We looked into changing insurance, thinking we could pay more if it gave us the coverage we needed, but low and behold - private insurance policies all have these ridiculously low therapy coverage limits. Even Caleb's policy through his employer would cost more per month than we could afford with a $3,000 deductible before covering just 25 visits per year.  Bryce would use all of his visits in the first two months of the year.

Maybe I should stop working and we could qualify for CHIP or Medicaid but then how would we pay for our home and expenses?

The list of possibilities seemed endless but unfortunately so did the reasons why none of them would work for our Bryce.

Beyond frustrated I returned to the website where I periodically search for clinical studies that Bryce might qualify for and benefit from. And this time, for the first time, there were several I thought could be mutually beneficial for us and the studies.

I began contacting some and asking questions, filling out applications and medical histories, researching the studies and their leading doctors. And it was during the research of a constraint induced therapy study being held at the Columbia Teacher's College in New York that I accidentally found Ability Camp through a paid Google Ad.

I clicked that ad with full knowledge that it was an advertisement and was floored when the very first page showed video of children very much like Bryce making incredible strides in just 5 weeks at this intensive camp.

I had to know more.

So I read up on their method of teaching for children with Cerebral Palsy, traumatic brain injuries and other such brain related motor issues: conductive education.

First founded in Budapest, Hungary in the 1940's, conductive education was hidden behind the iron curtain for decades but has since become the standard of care for these children across Europe. Several years ago 60 Minutes did a segment on the methodology, which you can watch here:

Since that 60 Minutes segment Conductive Education has been spreading across the U.S.  There aren't currently any facilities in Texas but 20 states now have CE centers.  After thorough research we decided that this has to be our next step for Bryce.  We simply can't pass up an opportunity to help him be more independent, to build his self confidence and maybe, just maybe, to walk.

I looked into the various programs being offered and have excitedly decided on the Conductive Learning Center in Grand Rapids, Michigan.  Here is a video they did for their annual fundraiser a couple of years back:

We're hoping and praying that Bryce will be accepted to attend their summer camp this year.  The summer camp is a 5 week intensive conductive education program where the children attend small group classes for 5 hours, 5 days per week.  I can't begin to tell you how excited we are at the potential progress we hope for in that 5 weeks!

Of course, as you can imagine, this is no small endeavor for our little family.  Things are tight, we have a 6 month old baby, Grand Rapids is on the other side of the country and a significant investment is necessary to make this a reality.  It's a lofty goal but one we feel we have no choice but to go for.

And things are moving fast!  The application deadline for the summer camp is February 1 but the center sells out of spots every year, maintaining a wait list each summer.  So I sent in our application yesterday and will be sending in an assessment video by week's end.  By God's grace, Bryce will be accepted into the program and there will be a spot still open for him.  And then we'll be working our butts off to raise the funds to help cover the cost of driving to the center, staying at the Ronald McDonald house for 5 weeks and paying Bryce's tuition.

I hope you will all come on this adventure with us, as you have walked along the challenging, heart breaking, joyous journey of Bryce's life thus far.  I'll be back in a couple of days with a video assesment of Bryce so we can all see where he is today and hopefully can look back this summer and see how far he has come.