Tuesday, December 23, 2008

Happy Holidays 2008

Wishing you & yours a safe and very happy holiday season! We are heading out in the morning for my parents' house to be with our loved ones and enjoy a white Christmas. Hope your holidays are filled with good times, memories and laughter.

Monday, December 15, 2008

O Tannenbaum

How ever full your branches! We decked our tree out in style tonight with two popcorn tins and several boxes full of ornaments. It is so much fun to put them up, remembering the memories attach to practically every one. Even Cara got in the action this year. Now, if only we can get her to leave the ornaments ON the tree!

Cara, with some assistance from Ben, putting ornaments on our tree.

Caitlin, showing her seniority in ornament placement.

The finished product.

Holiday Spirit

We all been enjoying getting into the holiday spirit this year. Mother Nature (or is it Jack Frost?) has blessed us with snow numerous times, which has helped set the mood.

So far, we have taken in a Snack with Santa and Denver's annual Parade of Lights. Snack with Santa tanked again this year, with Cara, as she would not go within 5 feet of the man in red. We tried numerous approaches which only resulted in tears. Thankfully, I think Santa knows that Cara has been a good girl this year. Caitlin, on the other hand, climbed right up into his lap and told him that she wants an iPod Nano and a Barbie Jeep Power Wheel. Smart Santa said, "I will be sure to leave you a present that I know you will enjoy". Thank you Santa, our budget does not allow for such pricey gifts. We were fortunate to get a family picture following snack time, which I've posted below.

The Parade of Lights was just amazing. We went downtown early, via the Light Rail, and picked our spot along the curb. Some very good friends of ours joined us, to make it that much more fun. We watched in awe as floats, bands, balloons, flame throwers and the jolly old elf himself made their trek through lower downtown Denver. The girls were captivated the whole time and we've decided that the Parade is going to be part of our yearly Christmas season traditions.

On the 13th, Caitlin had her dance recital. She has been taking ballet/jazz classes through a dance studio that comes to her school for about 5 weeks now. Her class performed a short but cute number called, "Hanging Your Stockings". All the kids wore their PJs and used their stockings as a prop. It was so fun to watch Caitlin perform! She said she had a great time. Unfortunately, my pictures didn't turn out very well. I did, however, get two videos, but they seem to be too large to post here.

We were to take in the annual TubaChristmas (400 tuba players from around our area playing festive musical numbers) concert in downtown Denver on Sunday, but with temperatures in the single digits and windchill in the negatives, we decided to pass. It looks like the show went on, regardless of the weather. We will have to try again next year, especially if my brother happens to join the mass of players (*hint hint*).

This week, Caitlin has a holiday party at school in which I have been elected to make dozens of sugar cookies. This will be my first time making cookies as we are usually away from home around the holidays. Caitlin's class will be decorating the said sugar cookies, playing some games, enjoying a potluck lunch and having a book exchange to wrap up 2008. She is then off of school until after the New Year.

Christmas plans include a trek to my parents' home, 5 hours west, where we will celebrate the holiday and be in good company.

Hopefully, you all have been enjoying welcoming the holiday season as well. Happy Holidays!

Genetic Counseling Appointment

Today, we had Cara's much anticipation (or dreaded) genetic counseling appointment at Children's. Let me just preface this by saying that we chose the coldest day of the year for this appointment. It was a whole -6 degrees when we got there!

Anyway, we arrived on time, went through intake where we found out that Cara is just shy of 28#, a tad under 3 ft tall and that her head circumference has gone down some. All good news.

We met with a counselor who went over our family history, very thoroughly. I so wish I would've thought to bring Cara's baby books so I knew exactly when she accomplished milestones. We had to list relatives going back to grandparents, on both sides, and then any conditions that they had. I have decided that we need to have a written record of this, so that I don't have to call my mother in a panic to remember what so-and-so died of.

After the consultation, we met with an actual geneticist who examined Cara, looked over her cafe-au-lait spots (CALS) and asked us some more questions about Cara's development and neurological profile (MRIs, etc). Upon examination, she didn't believe that Cara showed the physical signs of neurofibromatosis (NF1). Cara does have several CALS, but they are not of the right shape or size to be definite signs of NF1. That being said, there are many other neurological disorders that can account for the CALS. It seems pretty certain that Cara does, indeed, have some neurological condition and now, we start the process of elimination.

Cara was sent to the outpatient lab to have some blood drawn for the various tests that are sure to follow. They took extra vials so some cane be stored for further testing, saving Cara from having to be poked again. The first test to be done is called a chromosome study in which the lab will examine Cara's DNA to check for malformations of her DNA--matching chromosomal structure to a template. Any mutation will also be spotted, pointing the way to one specific disorder or another (including NF1, which is a gene mutation). The results of this study will determine any further testing that may need to be done. That being said, we are at the beginning of a very long process, for sure.

Right now, we are just relieved to know that Cara, most likely, does not have NF1 and from the sounds of things, the other diseases that were discussed aren't as severe. We shall see though, as we continue on the quest to get answers. We are hoping to have results from this first study before Christmas or shortly after. As always, I will keep everyone posted.


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