Cortical Visual Impairment

Everett Update November 2012

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Praising God for:

Everett’s new big-boy car seat and his great posture in it. That’s right, Everett has graduated from his infant carrier car seat and is now in a Radian, just like his big sissy. Mommy was really worried that he would slump over in his car seat, and eventually he would have a crooked back. He still is at risk for a crooked back because of his cerebral palsy, but I don’t think it will be because of the car seat. Maybe it’s the 5-point harness, or maybe it’s that Everett is  doing so well in his therapy, but he looks awesome sitting up nice and tall in the seat. yay!

Everett’s vision (CVI) seems to be improving a little. On the CVI scale (goes from 0 to 10, with 10 being near normal vision) he was recently assessed at a 5.5/6, which in just on the edge between Phase II and Phase III. When he was first assessed, he scored a 4, but he was probably a two before we started vision therapy and he was just light-gazing all the time.

Everett has a lot of hair! We loved the curls, but it was getting a bit ridiculous. People were always thinking he was a girl and it was in his eyes all the time. Since he has vision issues anyway, we thought we should ensure that his view is unobstructed whenever we can =). So, we gave him a haircut! And, golly, he was NOT wanting to be still. It was difficult anyway, because he can’t sit up very well, so Daddy had to hold him. But, also, he really earned his nickname of Bucking Bronco last night. I was so worried I was going to poke his eye out with the scissors. His first haircut was technically in the hospital (one month old), but they only shaved half of his head, so this is his first full haircut! And I tried to keep it long, but I still cut off a LOT of hair. Everett’s face is changing too; he’s losing his baby fat, which makes him look so much more like a little boy and less like a baby.

Petitioning God for:

Unfortunately, vomiting is still an issue. Everett has an overactive gag reflex, which we are working on with feeding therapy. It had been a long time since he last vomited, so I had thought it was pretty much resolved – but I was wrong. We are concerned about his GI health in general. Please join us in praying that his gut will be able to function normally.

Everett is still struggling with teething. It may be just teething, or he could also have an ear infection, but he’s definitely been uncomfortable for some time now. He didn’t get to take his naps on Friday because we were visiting a friend, so he went down for a nap when we got home around 4pm and didn’t wake up until his normal 6:30 the next morning! I was so glad he was catching up on his sleep because we had had quite a few sleepless nights over the last few weeks. Please pray that he would feel better soon!

Everett Update October 2012

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Praising God for:

Ev is now eating so well! He’s excellent at drinking liquids from his squishy blue cup. He really seems to enjoy yogurt and kefir. I am giving him about three blue cups-worth at each meal. I have been grinding up some of whatever the rest of the family is eating in the baby food maker and mixing that with some yogurt, which has been working really well

Rolling! Ever since our weekend in CT in Oct, he’s been rolling several times a day, anytime I put him on his tummy.

New glasses. Grateful for provision to buy them (since they weren’t covered by insurance), although Everett thinks they are a chew toy.

Anat baniel method therapy. Grateful for provision to pay for the therapy. Grateful for insurance paying part. Everett’s right hand has really loosened up. We’ve had one week with no ABM therapy (Carla is out of town) and his hand is unfortunately really tight.

Masgutova neuro sensorimotor reflex integration (MNRI) therapy. Barbara has been doing about an hour of MNRI therapy (albeit less when he’s unhappy because of teething) every weekday. It takes soooo much pressure off of me to know that he is getting some therapy. One day this week, I came down after taking a shower and Barbara had been simultaneously doing ev’s therapy and teaching Adele a colors lesson in Portuguese.

Petitioning God for:

Head turning to the left. It seems like Everett has trouble turning his head to his left. I’ve been turning his highchair so that he has to turn his head left to eat. I gently touch the food to his cheek and most of the time turns and opens his mouth wide. Sometimes, though, he turns it sharply to the right and cries out, apparently in frustration.

Teething relief. Two canine teeth have popped through a bit but the gums are pretty swollen for all four. Ev likes it when I rub his gums so hard they squeak. Teething discomfort seems to have cased some motoric regression. Also, sleep for both of us has been affected. It seems like ev hasn’t slept through the night in a few weeks. The problem is that the extra nursing causes him to exceed the capacity of his diaper. Yuck! In both of our beds!

Blessings, the hard eucharisteo exemplified

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This song captures it

the hard eucharisteo*

Wow. It’s hard. But, God, we thank you for it all.

Blessings by Laura Story

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love is way too much to give us lesser things

‘Cause what if your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we’d have faith to believe

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not our home

What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
What if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise

Laura Story explaining the story behind this song . . .

 

2 Corinthians 12:9:

[God said to Paul] “My grace is sufficient for you, for my power is made perfect in weakness.” [Paul responds] Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.

 

*eucharisteo is a Greek word that means thankfulness, gratitude, contentment, etc. It’s more of a lifestyle than an isolated act. It’s a choice to give thanks to God, for the wonderful things but also for the hard things that I’d honestly rather not deal with – because those things, the hard things, are blessings, “God’s mercies in disguise.”

I am learning a lot about eucharisteo in One Thousand Gifts by Ann Voskamp. It’s challenging, but really, really good. Join me?

Cortical Visual Impairment: resources and toys

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This post is what I wish I had found when we first learned about Everett’s vision issues. There are resources available, so just breathe! It’s actually a great diagnosis because your child’s vision can dramatically improve with appropriate therapy (mostly environmental modifications).

Resources

If your child has been diagnosed with Cortical Visual Impairment (CVI), there are several resources you should familiarize yourself with. First, order a copy of Dr. Christine Roman-Lantzy’s book (available here).

Then, while you are waiting for it to arrive, check out the website Little Bear Sees. This website has a great list of CVI resources! They also have a great book and an iPad app for CVI Tap-N-See Zoo that Everett really likes.

Toys

OK, now that you’ve been to Little Bear Sees and seen that there are lots of resources available to you, here’s where I can be of some help. Somehow, I haven’t really been able to find a list of good CVI toys. Regular black-and-white toys are not at all helpful for CVI, and that’s pretty much all that’s available at Babies’R’Us, etc., so then what?

Many CVI people recommend going to the Dollar Store and Party City, but most of the things I found there contain small pieces that could easily cause choking or are made of paper. My son puts EVERYTHING in his mouth, so paper just doesn’t work.We bought the mardi gras beads suggested by so many CVI folks, but the plastic coating came off and stained Everett’s face and hands. I don’t even want to think about the chemicals Everett ingested that day. Most of the Dollar Store toys are fine for therapy time, when someone is giving him their full attention the entire time. But they are not so good for keeping the baby happy while Mamma cooks dinner!

Everett has progressed beyond just one preferred color (he’s in phase two), so we can have toys that are colors other than just red. Still, it is difficult to find toys with only a single color. So, although it’s a short list, here are the things we have found to be both helpful and safe.

The Fisher Price Happy Apple is a vintage toy that is available on ebay for about $20 with shipping. It’s perfect for CVI because not only is it red (most CVI kiddos’ preferred color), but there is also an audible reward for integrating motion with sight (when you see the object, and then reach out to touch it, you get rewarded with the sound). The sound is like chimes or gentle bells. Anyone who knows me will smile here because I am extremely sensitive to most noises made by children’s toys and I refuse to allow them in the house. But, I promise, this one isn’t annoying!

We also have lots and lots of slinkies (mostly red, but also yellow, blue and metal). These break easily (or get bent beyond repair). I finally decided to accept it and just replace them. I think we’ve already gone through more than five; now I buy in bulk and hide some away.

We also love the iPad and specifically the app made by the authors of Little Bear Sees, Tap-N-See Zoo. People who know me are probably smiling again because I am completely against electronics and visual stimulation from television or video games for children. We don’t have a television at our house, but, yes, my one-year-old has his own iPad. In order to use the iPad for a small child with CVI, I think you really need a good case. We use a gripcase (available here or here), which will prevent it from breaking if it is dropped, or thrown across the room, or stepped on. Ask me how I know that =) Everett also mouths the edges, but it doesn’t get the actual iPad wet, so it’s all good.

I also want to mention something that isn’t for CVI, but it’s really been a lifesaver for us. I LOVE iBooks on the iPad. My daughter comes with us for Everett’s therapy appointments and she is only allowed to ask to play with the iPad during those appointments. It really helps to keep her occupied while I am trying to pay attention to the therapy. I love iBooks because many of the books have audio, which is simply the book being read out loud. There isn’t any animation! It’s great because Adele gets to look at the picture that goes with that part of the story. I love that it isn’t visually stimulating for her – it’s no more visual stimulation that if I were reading to her and she were looking at the pictures in a book. As with regular books, we don’t allow twaddle. We have found at least ten free books that are quality literature for young children WITH audio on iBooks. There are several gems by Beatrix Potter.

I’d love to hear about some things you’ve found helpful with CVI. Please share in the comments.