Understanding Cortical Visual Impairment

Dear Savannah,

You kept me very busy this past week with regular therapy, two appointments, school, and we met with the a lady from the Massachusetts Commission for the Blind. Needless to say, we were both exhausted. I am looking forward to spending extra down time with you over Thanksgiving and my time off surrounding the holiday.

One of your appointments involved getting your vision tested. The great news is that your vision has improved over the last year. The not so great news, you have a significant astigmatism and need an even stronger prescription. It is likely that you will always need glasses now. Good thing you look so adorable in your pink and purple glasses.

Cortical visual impairment has been very confusing for me to understand. Here is what I know: CVI is a neurological disorder. The visual pathways and/or the optical lobes have been damaged due to a number of different reasons. This results in visual processing difficulties. I have always been told you have healthy eyes and the nerves are pink. This indicates that your eye exam is normal. Most children with CVI are not totally blind and can increase their vision through vision therapy. With this said, most children with CVI are legally blind. Patience is key for you and others with CVI. Savannah, we allow you more time to visually process an object. Your visual behavior demonstrates "peeking" at this point. We present you with an object, and sometimes you "peek" and turn away. Again, we allow you time to locate the object if you seem interested. Other times, we can present you with an object and it is too overwhelming so you will turn away. Visual processing can be very tiring for you. You "peek" the best when you feel secure and comfortable. You do a great job in your stander  and while on your back for visual activities. Oh, and you just love light.  Everywhere we go, you find the lights. You are a light gazer.  Daddy and I used to joke about "your" lights before the diagnosis. You are very content to stare for no apparent reason. Puzzling for sure but you have shown so much improvement over time and we are very happy with your progress.

Here is a photo you doing a little therapy using a light box. You love to knock the blocks off of the light box. You really are the cutest.

Our other appointment this week were to be fitted for a gait trainer. You looked awesome and even initiated a few steps on your own. Not such a typical step, but reassuring to me that you are just on "Savannah Time".

It is truly amazing  to me that God gave me such an extra important job of raising a child with special needs. You have taught me so much and made me into a better person. I love being your mommy. You bring me pure joy!!

I love you sweet girl.

Love, Mommy

It's been awhile...

Dear Savannah,

So much has gone on in the past nine months. You are growing and changing so much. You are a few days shy of two-and-a-half years. Wow! You are growing up so fast. So let's rewind a bit and I'll do my best to fill you in on where we are now.

You are receiving three in home therapies per week. You have a PT, (Keri)  a TVI, (teacher for the visually impaired, Mary) and Kate, who has been your therapist the longest and is a service coordinator who carries over all therapy. Arielle, is your speech and feeding therapist who we don't see as often.  We have an evaluation with an OT in the next few weeks. You also started Aqua Therapy which you love!! Unfortunately, we are in a big dispute with our insurance company right now so we are not sure if we will be able to continue. Each week, we also goes to Perkins School for the Blind for a class for you while I meet with other parents who have children similar to you. You love it. It is a magical place. We also have a few doctor appointments per month.

I will start with my favorite new thing. You laugh. You are so extremely happy and smile a lot. You smile with your entire squishy face. Usually a laugh is sparked by your ticklish thighs or feet. It is pure music to my ears. I'll admit, it sounds a little like Beavis and Butthead, or maybe a dorky little giggle, but I love everything about it.

You are working hard on sitting for more than a few seconds unassisted. You feel most comfortable with someone behind you. You also throw yourself backward with full force and thinks it's pretty funny. I, however, do not. While you may not be sitting, you are showing great improvements and I know you will sit in our near future. I can now carry you around on my hip. This is great. Usually for a very quick errand, I'll test it out and often I regret my decision to leave her stroller in the car. I love to hold you but you are one squirmy little munchkin.

At this point, you do not have any words. You are making sounds and I have faith that someday you will say, "Mommy".  I recently read a post on children who have visual impairments are also delayed in speech. I will say, when you cry as if you are in pain, there is a very clear, "MOMMMM", but this only happens every so often. As much as I love to hear it, it is a sign that you are not feeling well so I will wait until you are ready. You have a "da" sound too. You work with a switch to activate some toys and do this very purposely. It's amazing!

The most important thing is that you are healthy. You had quite a few ear infections in the beginning of the year to where we were starting to get concerned that you might need tubes. Luckily, your ears continued to clear so your doctor at the time, didn't feel as if you needed them. You have had a few colds here and there, but nothing too bad.  Stomach issues, despite miralax. I have been told this may be due to low tone and often comes with the territory. Ongoing reflux issues that I wish would go away, but, I am very thankful for your health.

Savannah, you should have abs of steel by now. You are constantly doing "crunches", as if it is fun and amusing to you. You roll in both directions but often prefer to "sun-dial" from one position to another. You crave and love movement. You love to swing outdoors. Here is a photo from this summer of you swinging at work. This was a gift from the B's for your second birthday. Papa Don and Gigi also bought you a swing for the swing set Daddy built for you. You always loved your bunny swing when you were a baby. Aunt Lindy wanted to make sure you had a cozy swing like Asher. You have grown so much. I love you little sweet pea.

Love, Mommy