Wednesday, August 27, 2008

My Auntie and Cousins in Ketchikan, Alaska

I went on my first plane ride during our first real family vacation. We went to Ketchikan, Alaska, to visit my Mom's sister, Aunt Kyanne. I had a great time meeting my cousins Noah and Hannah. Clare did a great job on the plane and boat. We went out fishing two of the days and spent about 8 hours each day on the Ocean. Clare was a trooper and hung out in cabin of boat in her exersaucerwhile Daddy and Mommy were fishing. Daddy caught some fish for us and we even caught some crab. We ate seafood almost everyday.

Happy family waiting to board the plane. I think Clare was a little hungry!!

We finally arrived in Ketchikan (notice how we are surounded by ocean, the airport is on an island)
The three amigos: Cousin Noah, Cousin Hannah, and Clare.

The cousins just loved sitting with us at all times.

Mitch and the kids.
I love my Aunt Kyanne.

Our Little Pirate.

It rained most of the time, so we all had rain gear on. We had to mix and match items for Clare but she didn't mind.

Mitch and his first fish.

Here we are after our second day of fishing.

We caught 11 Dungeoness crab.

Mitch caught all these fish on our second day. He caught the all the salmon in one hour.

My sister's family.

My Niece Hannah and I.

My sister and I.

Mitch and Clare looking at the bald eagle in the Ketchikan airport before heading home.

First Business Trip

Clare went on her first business trip to Spokane. I had a week of training in Spokane and I wasn't ready to leave Clare so I brought her with me. Mitch was able to come for a couple of days but had to return home to attend some special trainings. My mom also came on the trip to watch Clare while I was in training. Clare did a pretty good job staying in a hotel room.

Before we could leave on our trip, Daddy had to do some fishing in Grandma Gorze's pond.

Clare sitting on the side of the pool smiling at Mom and Dad. She really wanted to go in but couldn't because of her skin disease.
I love sucking my bottom lip just like my Daddy did when he was little.

Laying in bed relaxing with Mom.

Grandma let me play on the bed.

Meeting Coretta, my Great Grandma Leola's best friend.

Daddy and I enjoying some relaxing time in the lobby. We love Grandma but sometimes Daddy needs some alone time.

I love playing on Mom's computer.

I love getting my way!

Finally Answers

We finally have answers to the issues Clare has been having with her skin. Clare started have issues with her skin at 4 months. She would get these inflamed, red, pussy areas on her elbows, knees, and back of head. There were also times where her entire body would turn a bright red like a sunburn. The areas would definitely bother her and she would scratch continuously until she bled. About a month ago her skin was the worst we had ever seen it. We had tried several creams and still no cure. We finally were sent to a Dermatologist.

The Pediatrician had thought it was a severe case of eczema, however, the dermatologist took one look at it and had a hunch that it was something else. Clare had a chunk of skin taken from her leg to be sent to a lab. I had to leave the room during this. It took Mitch and a nurse to hold her down so that the Doctor could do the procedure. She received her first stitch. It broke my heart hearing her scream through the door but she calmed down once I took her.

It took a week for us to get the results from the test, which was the longest week of my life. The results came back positive for the disease that she was tested for. She has a disease called Mastocytosis, commonly referred to as Mast Cell disease. Here is a short blurb about the disease:

Mastocytosis is a rare disease whose cause remains unknown. What we do know is that the disease is the result of an overabundance of mast cells that are found normally within every human being's body tissues. Mast cells contain chemicals that are released into our systems to perform their various duties. In mastocytosis, the excessive number of mast cells release more of these chemicals than the body requires. The symptoms of mastocytosis are caused by the excessive amounts of chemicals interacting with body tissue.

We are thankful that she has the benign form of the disease and that there is only about a 2% chance that it will evolve into the more serious form. There isn't a treatment for the disease we just have to try to minimize the triggers of the disease. She is on an allergy medicine that we give her every night, special steroid creams when it flares up, and benadryl during the day. We are also required to carry an Epi pen with us at all times because it is highly likely that if she gets a bee sting she will have a severe allergic reaction to the point she will have issues breathing. This can also occur with anything else she is allergic too. The disease is manageable but we definitely need to learn the triggers that cause the outbreaks. Her skin is looking so much better with her medication. The Dermatologist is hopeful that she will outgrow it by the time she is 5. We will continue to see the Dermatologist on a regular basis.