Thursday, November 20, 2008

Are Cataracts Genetic? - Welcome to the Cataract Family

It's 2:00 am and I can't sleep. Kayla has been sick over the last week and although she does pretty well during the day, when she gets into a deep sleep she sometimes has trouble breathing well. I woke up this morning to the sound of her breathing loudly and the pulse oxymeter alarm going off which tells us that she is not properly saturating oxygen in her blood. I just gave her a breathing treatment and did some percussion on her back to loosen up the gunk and now I can't sleep so I thought I would take a minute to let you know what's going on.

At 7:30 am this morning, I'm going in for cataract surgery. You are probably wondering, why would a 42 year old have cataracts? Well, I"m not the only one in the family. Kayla was diagnosed with cataracts when she was 2 but the doctors are watching them for now as they are slow progressing. Jeff was diagnosed with cataracts earlier this year but we have no idea why he would get them at 43. And then there's me. Within the month of October, my vision started getting blurry and when I went to my opthamologist to get new glasses, he told me that I had fast progressing cataracts and that if they were impeading my vision enough that I should consider having them removed. I can see still, it's just that things are blurry and its hard to see well on the computer. I work on the computer most of the day so that's a big problem. I have been working about 8 inches from the screen for the last month which is about to drive me crazy. Also at night, any lights including headlights, taillights, street lights, and stop lights all have multiple halos and are multiplied. If there is one stop light, I see 3. It's really strange but they make a perfect triangle with the main light in the left bottom corner and the other two just above and to the right of the main one. At first I thought I was losing it but realized quickly that I was having serious vision problems.

If you aren't aware, cataracts are a symptom of myotonic dystrophy. In this lovely disease, cataracts form early and are typically a very unique type of cataract called "Posterior subcapsular irridescent cataracts". Also known as "Christmas Tree Cataracts" because the cataract has an irridescent quality to it like shiny confetti you would throw down on the table at a party. Here is some information from the vision page of the Myotonic Dystrophy Foundation website if you want to learn more:

"Blurred Vision: Visual impairments in patients with DM1 and DM2 are most often caused by cataracts. Posterior subcapsular iridescent lens opacities represent an initial phase of cataract formation in myotonic dystrophy and are detectable only with slit lamp biomicroscopy. These opacities are usually found in patients who have not developed any visual symptoms. The presence of this type of lens opacities and more mature cataracts may be the only sign of the disease. Posterior subcapsular iridescent lens opacities are highly diagnostic of DM1 and DM2 although not pathognomonic. Glare and blurriness of the vision develop as the progression of the lens opacities into stellate cataracts and eventually mature cataracts, which are indistinguishable from usual cataracts. Cataracts in DM1 and DM2 may progress faster than usual cataracts, and thus patients with DM1 and DM2 may be presented with early-onset cataracts."

For more details on vision issues including cataracts in myotonic dystrophy go to:

Well, this is probably more than you ever wanted to know about cataracts but this is just a reality of this disease and of our lives. Fun, huh?

Well on a more positive note, we got Kayla's school pictures yesterday and they are adorable. I scanned it so you could see (below). The first set of pictures the school sent home were horrible. Kayla looked depressed and didn't smile at all. Her glasses were glaring and it was just overall not the best picture of her. So of course, I insisted on a re-take and went there myself to make Kayla laugh so we could get a sweet Kayla smile. When Kayla isn't smiling, she looks sad and that is not how I wanted to remember her first year of school. Isn't she adorable!

Kayla's First School Picture (Pre-School - 3 years old)

Saturday, November 15, 2008

Our Beautiful Little Girl is Growing Up!

For Kayla's 3rd birthday this year, we decided to have some pictures made of her at Enchanted Images near our home in Rocklin, California. A good friend of ours recommended them and they were right, the photographers were really sweet and compassionate about all we'd been through over the last few years with Kayla. They took there time and got some really amazing pictures of Kayla, Jeff and me. I especially love the one of us walking in our bare feet. It really captures Kayla's carefree and loving spirit. It's also very symbolic for us to have pictures of her walking since we were told she may never walk. As you all know, Kayla was diagnosed at birth with congenital myotonic dystrophy and her prognosis was very poor. Kayla has proven to be an amazing fighter and has a strong will to live. She's the happiest kid I've ever met and spends most of her time trying to make sure everyone around her knows that they are loved. She's a hugger and kisser and I've heard that she rescues all the kids at school when they get hurt. That's my girl! Well, I had to share these photos with you as these moments are what keep us going. It's nice to have some amazing 'normal' moments in all of the craziness we'd had in our lives.

More later...