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

Blindsided

Dear Savannah,

I really don't have any excuses of  why I don't give more attention to writing you more letters about your life thus far. My whole intention is to share our story of you, my sweet angel, to help other parents looking for a story that may help them through their journey and for you to know all you can about our life together. I will try and get better at this:)

The word "blind" never really stood out to me, until about a year ago when Savannah when you were diagnosed with Cortical Visual Impairment and are considered legally blind. Now, every time I hear the word, my heart sinks a little. It's used everywhere. Tonight, I was watching The Bachelor and Sean used the word "blindsided." I'll just say, it takes on a whole new meaning when the love of your life is so visually challenged. I know he didn't mean harm by using the word, it's just this momma is sensitive. I have seen an episode of Family Guy and even Betty White's Off Their Rocker who use blind characters as humor. Really? I don't find any humor in disabilities.  I will always stand up and advocate for you. Like I try and preach to the Abi, Emma, and Sam, people with disabilities did not ask to be different. Love them and respect them like you do everyone else. I know you are teaching them acceptance and I am very thankful they love you for you. I strongly believe that if you know someone with different abilities, you will learn so much and have more compassion to those around you.

You are now twenty-one months with slow and steady progress. You still is need help sitting, but your trunk control has improved so much. Today during therapy, you were lifting your head and even looking at the iPad some from your belly.  That is a lot of hard work. Sometimes you complain a little, but I would too if I had to work as hard as you do all the time. Even more impressive, you can be held on my hip for longer periods. It makes it so much easier when you don't arch but, well, you make the rules and  I just follow your lead. I do try and help prevent you from arching. You are using your vision to watch the iPad and your favorite apps are the ones you can help activate because you really like cause and effect. You really amaze me daily and you are just so darn cute. I can't get enough of you. I love you to the moon and back and then some.

Love, Mommy

Think Pink

 Dear Savannah,

   I have been doing a lot of thinking lately about my pregnancy and my little miracle who is currently snoring right next to me. Yes, sweet baby of mine, you snore. Last week, I started the book Bloom, by Kelle Hampton. I was finished in three days, record time for a mom raising her own child with special needs who has not picked up a book since you were born. Kelle, well she is amazing. Her memoir had me in tears on several occasions. Maybe because I could relate in some ways, or maybe because she is so inspiring and I want I be more, as a mother and as a person.

   Our journey started much different. In fact, I woke from a dream on October 2, 2010 that I was pregnant with a little girl. Nothing was out of the ordinary with my cycle but I went ahead and took a pregnancy test, and yes, there were two, pink, faint lines so I went right in for a blood test. 

   I never wanted to be the mom to say that I didn't plan my pregnancy. I would be lying if I told you any different. While some pregnancies are planned, I would imagine that many more are not. Anyway, not really what I want to tell you either but I had kicked Daddy out and for the past five nights, I was living alone. You see, we never did well together when we would drink. We would drink too much and it never ended well. I had enough, and thought it was time to move on. Little did I know that two pink lines would change us into much more responsible adults and two people that really loved each other and would love you even more. This change started instantly and we remain this way today. It's crazy how much better a relationship works without the influence of Jack Daniels.

   On my way to the doctor to confirm a pregnancy, I was in tears talking to my bestie Kelli. She calmed me down for a short time. As I was sitting in the office, I felt very overwhelmed and scared that I might in fact be pregnant.  I had a young male doctor who confirmed the pregnancy but thought the blood counts were low. I had told him I had some cramping the night before so he sent me for my first, of numerous ultrasounds. I left the office and burst into tears calling Kelli again, who offered to meet me at the hospital. At first I said yes, and then I changed my mind. I knew there was nothing she could do and that I would be just fine. So, before my phone died, I told her I would call her later.  I had so many mixed emotions. I was just really scared to take on such a huge responsibility in the beginning. I was also very excited to know that I would be a mommy, something I have always dreamed of. Never think for a minute that I didn't want you. I was just not expecting to have a child before I was married. I loved you from the day the doctors told me I was expecting.

   My ultrasound, as I recall, showed nothing. They thought maybe it was too early to see you, guessing I was about five weeks along. I was told to wait for the counts to get higher and then I'd have more blood work. This was a Saturday and I was scheduled to go back Tuesday, which felt so far away.

   In the mean time, I called Kelli back and she offered all the support she could give. She remains one of the first people I turn to in a crisis. Normally, I would call Mimi or Aunt Lindy in a crisis too, but I was nervous about the judgements because Daddy and I weren't married. I then called Daddy, and asked him to come over to talk that evening. He agreed.

   Daddy came over after work. I told him about my dream and that the doctor confirmed two pink lines. He was very supportive of the news and I think very excited from the beginning. We had no idea at the time if you were a little girl or a boy but because of my dream, I just knew in my heart that this little baby growing inside, would in fact be a girl. Daddy even aksed, "What would we name our litte girl?" I love that we were blessed with all the innocence of the color pink. You my love, you are my everything.

Love, Mommy

A rainy success

Dear, Savannah,

   This past Sunday was the 5th annual Hydrocephalus Walk in Cambridge, Massachusetts. Despite the rainy chilled weather, 250 came out to walk. Team Savannah Smiles had nine members honoring you sweet baby girl:) It makes me want to be a part of something bigger to help all families who are affected by hydrocephalus.

   Of the 250 walkers, twenty, including you live with hydrocephalus. It was great to see so many support systems, including my dear team. Papa Don, Uncle T, and Aunt Lindy also showed support by sending Mommy texts telling me they were proud and anxiously awaiting pictures from our walk. It was a special day . I only had hoped for better weather so we would have been able to connect with more families and to share stories with each other. We raised more than $3500 as a team. All that money is to show support for you Savannah Mae. The grand total will come next month when donations are no longer collected and I will be happy to share the amount:)

I am looking forward to the weekend and spending time with you and Daddy. We are planning on taking you downtown tomorrow for the haunted happening festivities, aka trick or treat with the mayor. It should be a fun weekend!!

I love you, lovebug.

Love, Mommy