Welcome to my blog!

Thank you for taking the time to stop by and visit! We hope to share with you our journey of raising a child with Achondroplasia, the most common type of dwarfism. If this is your first time here, please start by reading Caitlyn's Story. It will share the beginning of her life with you. Enjoy!

Saturday, April 5, 2008

Caitlyn visits a Skeletal Dyplasia Clinic at the Kaiser Hospital in Oakland, Ca. This is an article that I recently wrote for our LPA Chapter's Newsletter....

"Caitlyn was born in March of 2005 and was diagnosed with Achondroplasia within an hour or so of being born. We met with a Geneticist while still in the hospital and two weeks later we had the pleasure of meeting Ericka Okenfuss, who then set us up with an appointment at the Clinic. So when Caitlyn was 3 months old we made our first visit. When we learned that we would be meeting with 8 different doctors we had all kinds of questions running through our minds... the main one being “what will this day bring?”

We arrived at the Clinic and when Caitlyn name was called we walked through the doors of uncertainty. She was weighed and measured (which she screamed through), then we were brought to our room. Outside the door there was a list of the different doctors coming to visit us on this day: Genetics, Orthopedics, Physical Therapist, Occupational Therapist, Neurologist, Head and Neck Surgeon, Nutritionist and finally a Social Worker. We wondered how long we were going to be there. We quickly learned the Clinic is run so incredibly well that one doctor would enter the room and as soon as they were done, another would follow. We were seen by the different specialists in about a 2 hour time span, however she cried the entire time. Once we were done with our visit we went back into the lobby where a small reception was set up. There is a Representative of LPA waiting to talk with parents if they are not yet involved in LPA. With Caitlyn only being 3 months old, we didn’t stick around long as she was LONG overdue for a nap. As our first experience, it was a little overwhelming; however we have become veterans of visiting the Clinic. Caitlyn has been seen several different times – this initial visit and again when she was 10 months, 18 months and lastly when she was 2 and a half. Or last visit to the Clinic was a totally different experience than any others. It was the first time she didn’t cry the entire time, which made the visit so much more enjoyable. She showed the doctors her vocabulary skills as well as her gross motor skills in which she decided that it was a fun game to throw a ball through the doorway into the hall, which my mom reluctantly went and got every time. I’m glad that the doctors thought it was “cute” – hey - whatever keeps her happy!

We’ll visit the Clinic in or around September/October 2008 as the doctors want to see her once a year. We always look forward to our visit as it is a reassurance that Caitlyn is progressing as she should be. We feel that the doctors have given Caitlyn the specialized care that she needs and we thank them graciously."


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