Friday, October 9, 2009

You've Had a Birthday Shout HOORAY!

The post title is the name of a song kids sing in primary for our church. So really it'll mean more to you if you know the song. Gracie had a birthday as of late. This is her blowing out the candles on her cake that she requested. She first asked for a castle cake and I had a pattern I was going to use, but then when she was talking on the phone to my sister she started describing a cake that is nothing like the cake in the pattern. So I did my best to create what she wanted. This was the result. James looked at it and said "Have you seen Monsters Inc lateley?" Yes, it does kind of look like a monster doesn't it? But she said it was EXACTLY what she wanted. And unlike usual cakes that look good, this one actually tasted good. It's our families favourite chocolate/strawberry/pudding cake made to look like a castle/monster.

She LOVES to help.

So excited to get her present from grandma. It'll help her pass the time during the countless hours that she spends waiting in doctors offices and hospitals. Oh yes, she and her sister had just finished playing pioneer in their pioneer dresses that they love so much.

Longer Hair

This picture was supposed to be the last one as the post is really about how well Gracie's hair is growing. But I wanted to include this one for a realism factor. Usually we only put in pictures where Gracie's eyes are both looking in the same direction, here is one where they aren't just so you can see what it looks like. Her prosthetic is most limited in motion to look up and outwards. As a result when it's most obvious to us that her right eye isn't real is when she's looking up at us. James actually came home with a really funny story. He was talking to a lady and something just wasn't quite right with her eyes. Given that we have a daughter with a prosthetic eye that is the first thing he thought of. So through the entire conversation he just kept staring at her eyes and wondering (trying not to make it too obvious). He wasn't trying to be rude, it's just something you notice more now that you see it every day in your daughter. But then she looked up and both eyes looked up, making it very clear that it wasn't prosthetic she probably just had lazy eye. However there are times when James and I find ourselves having to remind ourselves which one of Gracie's eyes is fake. It's just such an amazing prosthetic. We're so happy with our ocularist and the work he does. Now if we can only work on insurance and their ridiculously inadequate coverage of a prosthetic. Ah, the joys of working a system.

Yesterday I realized that if I leave some bangs out Gracie can wear little tiny piggy tails. Her hair was already dried when I put them in so the bangs don't look their best, but still it's showing real progress in the hair growth department. Before we know it she'll be back to pony tails. Oh yes, she's not wearing glasses because she left them on the floor for our dog to eat them. This picture was taken right before we left to go pick out her new glasses. Stayed tuned for a post of her modeling her new glasses. Once again, they're pink.

This is Gracie playing around before church on the first day that we realized we could pull her hair back in an elastic. Her hair is so thick and so curly that it takes a lot of gel to hold it in place when it's this short or else she just looks like a fluff ball. James loves that look, he thinks it's hilarious. Gracie looks in the mirror in the morning and says "Mom my hair is CRAZY!" But when it's done she just looks super cute.

Saturday, October 3, 2009

A Call For Educational Reform in America!

Our daughter in second grade came home with an English test which had been graded. One of the questions desperately needs to be amended. It reads:

When I run, my _________________ falls off.
a. sneaker
b. eye
c. story

They graded it as if "a" was the only answer. James looked at it and started to laugh. He showed it to me and we both agreed that this definitely wasn't as straight forward of an answer as the teacher supposed. We believe that the answer a. or b. would be an acceptable one. Given an eye would more correctly fall out than off, but more or less it's the same thing. Ah, some of the things you get a kick out of when you have a monocular child. We were just discussing a primary song that they sing in our church called My Heavenly Father Loves Me. The choir just sang it in General Conference this morning and it's one of my very favourites. It's all about the beautiful world the Lord has given us and our wonderful bodies. The opening line of the second verse states "He gave me my eyes that I might see the colour of butterfly wings". We once again laughed and taught Gracie that it's okay if she sings "eye" rather than "eyes" but then there isn't enough room to add "Mr. Craig gave me my other one". Yes, we're full of one eyed jokes in our family. Don't worry we deliver them in a way Gracie finds hilarious. I'm not sure that they'd always be so funny. I guess like all things it depends on who says them and the spirit in which they're delivered. If she wasn't having part in the fun we'd all stop.

On another note Gracie had her 14th EUA yesterday. Just her dad took her this time. All looks really well. Dr. G. wishes that the larger tumor in the left eye looked more flat than it does, but we may not get that. This may be as good as it gets. He couldn't tell the difference between yesterdays pictures and last months pictures. In his words "We're nearing the end" of the laser treatments. Things actually look so good that she doesn't need to go back for another appointment until December! It seems that Gracie recovered from her anesthetic better than she ever has before and by the time James was called back to the recovery room she was stating that she was ready to go.

When Gracie goes for her next EUA she'll be going with her new baby brother! Yes, we're having another baby. James and I have both been genetically cleared for the RB1 mutation that Gracie has (which is the cause of her RB) but experience has shown geneticists that even when the parents don't test positive for the mutation there is a 5-7% chance of having another child with RB. It's due to a mosaic form of the mutation in which not all, or even most of your genes carry the mutation but more than one do. We know for certain that either the egg which created Gracie or the sperm which created Gracie had this mutation. So there is a small possibility that James or I carry more than one affected egg or sperm. For this risk our new baby has to undergo testing for RB until we can determine that he is negative for the same mutation Gracie has. We had the option to perform amniocentesis and run the genetic tests in the prenatal period but we decided not to take even the small risk that this posed for the fetus. When we explained this to Gracie's geneticist she said that this was the same decision that most families come to who decide that they wouldn't terminate the pregnancy regardless of the outcome. We will be drawing blood on this baby at the December appointment to send to Toronto for the genetic testing. Toronto has the absolute best RB testing lab in the world. In the first couple of days after the baby is born he's seeing our pediatric opthalmologist here just in the clinic to rule out any tumors that would be an immediate threat. At the December appointment in Houston (when his genetic tests will be drawn) he will also undergo an EUA so that Dr. G can 100% confirm that there are no tumors on the retinas. After that we should have his genetic tests back in a couple months and he won't be required to do any further testing for RB. Of course any child should routinely see an optometrist trained to do pediatric exams including retinal exams with a dilated pupil, this isn't only looking for sporadic cases of RB but also for a numerous host of other eye conditions where early detection is critical. And oh yes, although James and I have this 5-7% risk cousins and aunts and uncles are still in the clear. So don't worry you don't need to all run out and test your kids.