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  • About Heather

    Hi and thanks for stopping by!

    My name is Heather. I'm a child of God, wife of 12 years, and mom to two young boys nearing 3 & 6 years old.

    I have been blogging on and off since 2003 and have covered a variety of topics: recipes, cooking, photography, being a stay-at-home-mom, surviving melanoma, retiring from photography, my faith, hobbies, mommyhood, the array of therapies required for the special needs in our household.

    I'm far from perfect. His grace is enough! Join me as I share my journey...

big update on Little Brother’s vision: next up, Vision Therapy

I realize it’s been a couple months since I’ve posted an update on Little Brother’s vision.  It’s not because nothing has changed or happened: it’s that I’ve had way too much on my plate to consider sitting down and blogging.

Jesus Saves Bro

Let’s see, where to start:

Little Brother has been attending “vision impairment school” at the Anchor Center, doing Physical Therapy, and we’ve been doing “passive” vision therapy for him at home.

At his last eye exam, right around his 1st birthday, his eye doctor said since he’s switching between both eyes now, we don’t need to use eye-patch therapy anymore (at least for now). 🙂  I was QUITE relieved to hear this because he had been successfully ripping them off and immediately trying to eat them – MAJOR choking hazard and it was stressing me out daily. We’re not talking about me leaving for a 2 minute bathroom break – we’re talking, I’m making breakfast, turn to grab a banana and BOOM: eye-patch is OFF and IN HIS MOUTH! AGH!  What a tricky age.

We are still using what’s called nasal occlusions – a fancy term for tape placed on the nose side of his glasses to encourage his eyes to track straighter as he alternates using them.  We started out using Scotch tape and now use a more opaque Washi tape. (It’s a crafting tape that’s colorful and fun – but more importantly, in our case, blocks out more vision where applied).

See the picture above – we usually use silver Washi tape. 🙂

Dr. B adjusted his tape position so that his eyes will need to work a little harder so they don’t float inward very much at all. Does that make sense? Basically it’s “going up a level” in this form of occlusion.

Dr. B also determined LB’s new prescription: baby bifocals! I have heard this is a good thing and I have heard generally not a long-term prescription since it’s generally used to “train” eyes to have binocular vision.  Makes sense, right?

We are big fans of Miraflex.  Not only are they basically indestructible, but they have adorable styles and colors to chooses from.  A vision therapy board I’m on got me connected with the owner of Miraflex and he was amazingly quick to respond to a question on a Friday night, AND make sure we got a replacement strap for his current Miraflex frames.  Top notch in my book.

The second change Dr. B is adding is a second pair of glasses to LB’s daily routine at mealtime and the very end of the day.  This will help his eyes not strain and stay as straight as possible.

I noticed there were certain times of the day, certain activities and certain focal points that he was consistently pulling off his glasses. So I’m happy to understand this better: his prescription needed adjusted!

So, LB’s second pair of glasses will also be Miraflex.  We’re going with the same shape and a completely different color to keep track of the two different prescriptions.  Can you guess which one we’ve ordered?

The third change is an exciting one. Dr. B said now is a great time for LB to start in-office Vision Therapy.  We knew that this would be coming at some point since we’ve been doing “passive vision therapy” at home.  I asked about his age: he’s pretty young, but he encouraged me and said they do have tools and an approach for young toddlers.  With this program, they (he and another eye doctor he works with) have seen around an 80% success-rate.

I realize Vision Therapy vs. surgery tend to fight like PC vs. Mac or Canon vs. Nikon.  I feel like there is a time and place for BOTH in some cases.  We won’t know if LB will have both or not yet. But we know that with his eye measurements being different every 3 months, this isn’t a great time for surgery (plainly put: which set of measurements would they use to adjust?)

So for this VT program: the average kid/baby needs 40 weeks, but it’s done in 10-week-segments.  It ends with an evaluation to determine if another 10-week-segment is recommended.

So, here’s my visual explanation of LB’s eyes.  I took his glasses off so you can see: he has the muscles to move his eyes and track straight. His brain doesn’t know how to do it at the same time – at least intentionally, YET.

Vision therapy will train his brain to use his eyes at the same time. With the “passive vision therapy” at home, we’ve seen small glimmers of hope with him spontaneously having BOTH eyes track straight… then reverting back to using one at at time.  This is just one validation that we are on the right path. Vision Therapy will include two in-office sessions a week and intense, short bursts of activities to do at home DAILY.

While all this seems very time intensive, we are excited to get to this step. I long for the day to hear him tell me he is using both eyes (and knows it). The day he gains depth perception, I will throw a party. NOT KIDDING!

With both our boys, we want to set them up for success in life.

Balance is 30% vision.

How does driving work with no depth-perception?

Vision impairment left untreated can result in double-vision or your brain decides to just stop trying to use an eye…

I asked a teacher at the Anchor Center if there’s a way to simulate what LB goes through – and she said they have ways to show a lot of the impairments at their school but not his.  So if you are reading this and have a tool to show this, please share! I think it’s so much easier to understand and empathize once we experience what someone else goes through! I’ve tried nasal occlusals on my glasses and have worn an eye patch, but my brain already knows how to see 3D… so, how do you simulate 2D?

…. Emotionally speaking, I have good days and bad days. Hubby doesn’t have nearly as much time to research all the options we have or to attend as many appointments, so I often have to condense our day for him.  I’m sure it’s frustrating for him…

Little Dude has days where he just wants some special 1-on-1 time with me. He does great at school, but then comes home and shows signs of learning regression (his teacher encourages me and says it’s completely age-appropriate for the attention he’s trying to gain).

I’ve been doing my best to keep LB’s appointments during LD’s school hours, so he doesn’t become jealous of our limited time together.

He has been 99% sweet on his little brother and I want it to stay that way.

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Little Brother is extremely bright but stubborn.  I think he’ll need this stubbornness but more importantly, I want to teach both boys to lean in for support to the Lord. Some days I feel like I am a horrible example of this.

Sometimes my Divine Appointments with God come in the form of reading. This time it’s been The Best Yes by by Lysa TerKeurst.

It’s helped me realize that it’s OK to turn down “good” opportunities for the sake of a “better” one. Vision Therapy will be both time intensive and expensive.  I will be diligent in carving out quality time (actually blocking it off in my calendar) for BOTH Little Dude and Little Brother, so that they don’t look back and remember I neglectful of them during this process.  I’ll need to block out time each day to get his VT “homework” complete. I realize it seems like there’s a lot of time in the day, but it’s rather limited when you work around transportation to and from school, nap-time, and eating – then finding little pockets of time where he’s “in the mood” to do successfully accomplish his daily VT.

This is partially why my blogging is so sporadic! Sometimes my “Best Yes” is sleep (and not blogging). 🙂

BOTH boys need me and my husband needs me at home (he works 12+ hours a day, 5-7 days a week).

Which is why I’ve prayerfully considered how to make Vision Therapy possible. It’s going to come down to my Best Yes.  Saying “no” to vending machine snacks, drive-thru cake-pops, buying “a good deal” a CostCo, or using Amazon’s “Buy Now with 1-click” transactions – all the little things that add up in time and money. It will also delay some “Yeses” like much-needed vacations, well-deserved things my husband works so hard to give our family and down-scaling the holidays.

Vision Therapy is not covered by insurance. We called to double-checked. Nope.

I cried my eyes out at church a couple weeks ago.  Our pastor asked me in advance to talk about our son in his sermon – I delighted in the fact that God was willing to use his story for His kingdom.  I told my husband, I feel like the ONLY reason why LB still has all this is to point people to Jesus.  It’s hard to embrace God using littles in this way, but I know it won’t be in vain. We are taking a “whatever it takes” attitude – not just for his vision but for eternal purpose, too.

Thanks for reading – I know it’s a BIG update and I appreciate you all following this. I’ll be making shorter, more frequent updates. With more pictures, so you don’t get lost in the words. This is a blog, after all. 🙂

 

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