BCLC – Gavin’s therapy progress with velcro squares

I received permission from Gavin’s OT (Occupational Therapist) at Blind Children’s Learning Center, to document photo/video of his sessions with her. I want to be able to look back at his progress. There are so many times things “click”, and I see it in his expression, I see it in his self confidence. I see it in his sweet smile!

Not only is he making phenomenal progress, he is having fun. His OT, Joan, pushes him, yet respects him. If he says ‘no’, she tries once with him, and then they are all done. Typically the ‘no’ response from him, is because he is uncertain. Usually after she shows him, he enjoys it, and wants to do it again.

I will be posting pictures and video of his his weekly progress. I may be late, because I am just getting to post from his therapy session 2 weeks ago! But I will post about it each week. Ok, fine – I will try my best to post it each week.

This particular session we worked on his midline. Midline basically is the median plane of the body – basically working directly in front of him. Like many blind children, Gavin would throw objects he had in his hands. When he is all done, he throws them to the side/behind him. Getting his two hands to work simultaneously is something we have been working on for a long time. It will increase his strength for good cane use/control, as well as continue to work on the midline.

This particular video shows Gavin working with two velcro squares. To a blind child, the velcro squares really don’t have any meaning. We had tried the squares (along with other pull apart toys) for weeks now. This was the first time, and I have it on video, that he actually worked at trying to pull them apart! He did not get frustrated that the first time attempt was not successful, he continued to try …and we pulled them apart! He took it a step further, and he put the squares together, and pulled them apart again. You can see from our reaction, we were elated. It’s these small things that we work on with him day in and day out, but not in such a way to where it is frustrating for him, or where his self confidence is hindered.

Working on midline, is huge! Until he works more with midline, and using his hands in front of him, we can’t move to him brushing his teeth, feeding himself with a spoon, etc. We are getting there. Baby steps… You can see when he was done, they were thrown to the side – but not until after he pulled them apart.

Stay tuned for more video/photos from his sessions at BCLC.

Faker and Peaches

Ok, from Amazing Grace extreme to this! Here is the "video". Please keep in mind, we did not teach this to him. Yes, laughing eggs him on (how can you not laugh), but no harsh comments please! It's in innocent fun, but is so funny - and you asked for it!

This started with Gavin pretending to cough when he wants attention. It's been a joke in the household for over a year, and Troy or I would always say "you're such a faker!", or "you're so dramatic like your brother!". Well.... now, this is what he says back to us.

DISCLAIMER: Gavin says bad words while trying to say something else. Don't listen if you are easily offended! You've been warned, so just skip down to hear the innocent Amazing Grace. :)

Gavin singing Amazing Grace

... the last part gets me everytime. I will have to try to get video of him finishing the entire song -- he just loves the cheering!

"I once was lost, but now am found, was blind, but now I see."

Reflections

Gavin’s second birthday has come and gone.

WOW.

Where has time gone, and why hasn’t anyone figured out how to make that pause button for life? Reflecting to the past 2 years, I think we are finally getting to a place where there is a little less sadness. I’ve touched on this a little here and there. Our activism has helped to work through some of those emotions, and even face them when you do not want to (through interviews, speeches and the like). We have turned into walking fundraisers, but it is not all who we are – and the same with this blog. I have been offered some exciting opportunities, and I will share when I can, but I am trying to find a way to fit it all in?

This blog post has no real direction, so bare with me.

My time constraint is the biggest struggle right now. With the foundation moving to a full time job, I cannot neglect the basis of where this all started. Things have happened so quickly (again, where is that pause button), that it’s nice to have moments where Gavins birthday allows me to reflect. We have a life before Gavin, and a life after. The basis the same, but the direction, somewhat different.

Foundation work is a full time job for me now (not paid people, we’re all volunteer). The best non-paid job I have ever experienced! No salary could make me want to do anything different right now in my life. But finding that balance is key, with everything! Family, friends, business, etc.. We have found, we are saying NO better. When we first started fundraising, we jumped at every opportunity, now we are getting to a point where we don’t feel like we need to. We are taking a moment to breathe, and stay consistent with our belief when we started the foundation, that we will not do a function if it interferes with all of the family being together. Landon is involved in sports, and his interests are just as important as Gavin’s, or ours. We have actually opted out of a possibility of a foundation function because Landon had a game, etc. This weekend we skipped a fundraiser, etc. We feel good about it though! We are getting a little bit of control and focus on the center of us, which is our family. We’ve never lost sight, it’s just the nature of the beast, when an opportunity is given to you, you jump!

I am so grateful for our family and friends taking on their own fundraising, at work, school and in their community. I cannot thank you enough!

Upon reflecting on this 2 year milestone, which is Gavin’s birthday… we are being wiser with our choices and I am proud that we are. Not that there are regrets, it’s just relevant to understand where it could be getting crazy at times. To get back to the post, and my reason for it… I will pop in with foundation posts, but the substance of the blog will be the relevance of why I started this, and that is Gavin! It’s nice to have this blog NOT be about our foundation in a way. I know that sounds weird, but it is refreshing. It’s a way for me to compartmentalize things – and I like it that way.

We have all of our websites that is foundation based. You can find all of them in nav bars. I want to try to keep the blog, back to Gavin, our journey and his progress. Of course, I will throw things in here about GRSF, but for the most part, it will not be.

Oh… to keep you all back on track with our upcoming events, you know we have our Facebook pages, Gavin’s Groupies and the Gavin R Stevens Foundation. We also have our mailing list, that I know many of you are on and I AM SO SORRY for the lack of monthly newsletters. We will be utilizing that tool again to get back on track with keeping everyone up to date with us. You can sign up on Hands Down Monkey, which is where this all started, and the home of Gavin’s Groupies! We have some exciting info coming on upcoming events, as well as our online stores. So, make sure you are signed up. We will NOT share email addresses, nor will we clutter your inbox. Promise!

These momentous milestones are a good time to reflect, and it has given me a chance to reorganize some things. Life can get so busy, it is easy to not reflect, because you are so busy. I am going to try to reflect more, it’s refreshing. :)

I’m going to leave you with Gavin’s FAVORITE toy right now.. the “round and round” as he calls it. I think I have mentioned it, but he LOVES it! It gives him a lot of confidence too, as he feels good about himself when he can climb on or off, at his will, and he has the control to manipulate the speed. He can go “round and round” as fast or as slow as he likes, or he can just spin it and also manipulate the speed that way. This toy came highly recommended to me from a fellow LCA mommy, back when Gavin was just a few months old. Just now is he really liking it, or loving it. I highly recommend it as well, if you are looking for a new toy to fulfill sensory motor development, as well as vestibular stimulation.

This is his other favorite toy right now. His brother. His big brother who is on constant look out for his safety! Landon’s nerves are on edge with Gavin learning to walk, I have had to talk to him about allowing Gavin to fall (of course not in harms way) sometimes, because that is how he learns. He is such an AWESOME brother to him! They are both so lucky to have one another.

Just keep in mind, 2 seconds after I snapped this picture, Gavin was getting mad at Landon for “helping” him. Landon gets mad because he wants to help him. It’s this dynamic of support, comfort and independence. I love watching it grow, and enjoying each level that this brotherhood brings.

Reflection. I will be doing more of it, and looking back at the importance. I’m grateful for this blog to give me an avenue to express it, if I have zero readers or a million. It’s a place to personally reflect. I am so glad I have this to see the beginning of our journey with Gavin, and see where we have become. Not just with our activism, but more importantly than anything, our acceptance and joy with what God has given us.

I hope you find times to reflect. It’s so easy not to, but can bring such a firm grounding of where you are when you truly know where you have been!

“Follow effective action with quiet reflection. From the quiet reflection will come even more effective action.”

Words from wobbly toddlers

***Disclaimer ***
No I do not approve of foul language in my home. Please do not read if easily offended.

Don't say I didn't warn you! LOL




Toddler times. These have to be my favorite times. The unstable, getting better at walking toddler times. Also, the pronounciation (or lack of) certain sounds when talking, times.

Don't know what I mean? Let me explain.

*Gavin fake coughing for attention when you do not talk to him *

Me: "Gavin, are you coughing, you faker!"

Gavin: "I coughing you f**ker."

*Gavin getting ready to eat some fruit*

Me: "Gavin, would you like some peaches."

Gavin: "I want some bi***es."

I know this is HORRIBLE. But you gotta know it is funny! These words couldn't possibly come from the mouth of this angel, right?

Riiiiight.

PS - I DO have video -- do I dare share??

Eeeeek!

A messy thank you!

You guys are awesome!

I received so many wonderful wishes for our little boy, on his birthday. It reminds me how much it means to people, when you know you are thought of. My inbox was inundated with sweet messages from people I know, and only know through the readers of the blog, or Facebook friends on our pages for Gavin. Regardless, they were EACH read to him. I did it in spurts, but he felt the love - and kept singing "Happy Birthday" every time I read it. You all put a smile on his face, as well as mine. :)

We did a low key immediate family dinner. We opted to not do a big party, like we do each year for both the kids. Honestly, Gavin wouldn't have fun. Too many people, too much noise, and he gets antsy, and is not comfortable. I figured I would make his favorite, homemade spaghetti dinner.

Two full servings later, I think he liked it.

Caprese salad is the best!

Grandma’s and aunties are always around to do the clean up!

Homemade Monkey cards are also the best.

He didn’t care for the balloons, so they stayed away.

But the ice cream cake, that’s a different story.

Just don’t sing too loud!

My cousin shipped us some really cute Monkey decorations!

Thanks Jessica. :)

He loves his “copuuuder” (computer).

He also loves hanging out at night listening to music with dad.

 

I would love to be in more pictures with my boys, but this is as good as it’s going to get after a long day, especially when you’re the photographer.

I couldn’t have asked for a better birthday for my big boy!

A Happy 2nd Birthday to my boy!

10.02.08

A scheduled C-section allowed me to pick his birthday. I am a lover of October and Fall. When I knew it was an option to have my baby in this month, I sacrificed some very uncomfortable last few days of pregnancy to make it happen!

Gavin was born healthy, and off I was wheeled away for about 8 hours to get my vitals under control. I just wanted to hold my little boy! We did not want to know his gender, and I will always cherish that intimate moment between Troy, Gavin and I. The moment we knew we had another son, and Landon, had a baby brother.

My pregnancy was abnormal. I was on bed rest. We thought we lost Gavin at about 9-10 weeks, but he held on. It was a miracle to me when I found out, in an unfamiliar hospital, there was still a beating heart. The moment when the ER doctor explained to me I was still pregnant, was shocking. The words following "... but this is probably the start of a miscarriage..." is all I heard. We left the hospital (we were temporarily living in Las Vegas at the time), and my OB demanded to Troy that we come home. We packed the car, and left 2 hours later. The dreaded drive home...

Hours passed, and our baby held on.

Days passed, and our baby held on.

Months passed.... and our baby held on.

The subchorionic hematoma that caused us to think we lost Gavin initially was not healing. To begin with it was somewhat large, and not getting better. We were approaching 6 months, and I was faced with the reality of a possible still born. Something my mind could not even grasp, and at the time, I couldn't really tell anyone. I couldn't even really relay those words.

My baby held on. But my mind was trying.

The anticipated words that "everything will be ok" in last month of pregnancy was music to my ears. Hindsight, that difficult pregnancy was almost a foreshadowing of events to come. Shortly after Gavin's birth, we were again given news. News that he was blind, and there was no cure. Gavin had it together, he was fine. My mind was trying, and I had a difficult time conveying in words to others what was going on. Hence this blog. This was my way to reach those around me, at a time when I couldn't even open my mouth without sobbing.

Gavin was fine. And I was trying to be.

Days went by, months went by, and now 2 years have gone by.

Gavin is fine. And so am I.

This little ball of stubbornness brought the world around him a shining light, even through his world of darkness. I treasure him, I value him, and I love him.

Happy Birthday to my precious little boy! You are perfect, and stunning. But we will continue what we are doing, to make sure you have an option.

Through you, and for you, we will continue the fight!