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. 

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:

Not So Jumbo Jack
The Gort Family
Team Aidan
Thinking of Starting a Blog
Before the Morning
Transcending CP
A Life Less Ordinary
Baby Pierce
Life with Jack
P for Peanuts
Little Miss Moo

 

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?

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...

Steps!

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!

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!