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| On our way to the airport |
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We found a cross!
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| On the plane |
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| Kamryn made a friend on the plane. |
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| Chicago |
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| Chicago |
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| Chicago |
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| Kamryn LOVES ice water! |
Our trip to Minnesota went very well. While the trip was a little emotional overwhelming, it was still fun to get to travel to a new place. We stayed at Kahler Inn & Suites, which is right across the street from Mayo Clinic. It is a very nice place to stay.
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| Our Homemade HighChair |
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| She is always in good spirits! |
Mayo Clinic is such a good hospital. The clinic has a small museum inside, and we had a great time learning about the history of the Mayo clinic.
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| I loved the sign in the museum. |
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| Kamryn loved steering this boat. It had a horn that you could pull, and she thought it was so neat. |
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| She was too cute! |
The pediatric department was wonderful! The staff was helpful, and the environment was upbeat and playful. Although we had to wait a while (we got there an hour early), we had a great time in the waiting room! Here are a few pictures of us waiting to see Dr. Patterson.
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| Pediatric Department |
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| Waiting room. It was very stimulating for children. |
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| Kamryn & Daddy |
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| Kamryn & Mommy |
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| We were Auburn cheerleaders while we waited. I think everyone in the waiting room knows "Botta Getta" by heart now. She loved it, so we cheered our hearts out. |
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| Me & Will on our way to the airport. |
Dr. Patterson was very encouraging! He did lots of observational testing, and he said that she looks great. He is referring her for the Miglustat treatments!!!! Getting him to refer her for the treatments was the main purpose of the visit, so we were so glad that he did! Now that our first step is complete, we will just need to get our doctor in Birmingham and the insurance company to approve it. Although Miglustat is not a cure for NPC, it has proven to help prolong the lives of patients. In mice, it prolongs life 20-25%. Cyclodextrin is another form of treatments that we are interested in. However, the doctors have said "absolutely not" for Kamryn right now - at least not until the trial at the NIH has been completed. They feel that Kam is too young right now.
With our great report to the doctor, we figured it was time to relax before coming home. So, we walked around downtown and got a feel for Rochester, Minnesota. We always try to get Kamryn something special when we go on our trips. While we were in Minnesota, we got Kamryn a toy that I would advise any parent to get for their child - Sophie the Giraffe. My cousin lost her baby, Sophie Leona, about a month ago, and our family was devastated over this loss. I will be writing a post in memory of Sophie soon. Since the name Sophie holds a very special name in our hearts, we renamed Kamryn's giraffe, Josie the Giraffe. It has a nice ring to it, doesn't it. Josie the giraffe is a small giraffe toy that babies love! Kamryn definitely loves hers. The link to the website is below:
http://sophiegiraffeusa.com/
A highlight of our trip: I really wish that I would have gotten a picture taken of her doing this, because it was hilarious. - The airport at Minneapolis is extremely big, and they have shuttles that take you to different terminals. We rode one of these shuttles to to Terminal D where we were flying out of. We had to hold on to a pole, because the shuttle went pretty fast on the tracks. Will and I grabbed the pole, and Kamryn grabbed it with both hands - She even tried grabbing it with her feet. It was so funny!! She was laughing, smiling, and the star of the shuttle. At the next stop, a man got on and didn't grab any of the poles. Kamryn looked at him, looked at Will, and back at him. She yelled at him, as if she were saying, "Why aren't you holding on!" Needless to say, the man grabbed the pole. We were all cracking up!
