Cassandra Jae Park
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Casey was born 8/17/98 with a Laryngeal Web and a Deletion in Chromosome 13. She was operated on to remove the web, but was still unable to breathe on her own. After a second operation they decided it was best to perform the Tracheostomy and allow her to grow in hopes that she will eventually be able to support her own breathing without additional surgery. We are planning for the trach to remain for 3 years with the possibility of it being removed sooner with sufficient growth.
Feedings were originally by an NG Tube and whatever she would eat orally. It took about an hour for her to eat 2 ozs. She now eats everything orally and takes about 30 minutes to eat 3 - 4 oz. She has OT services twice a week with CranioSacral Therapy as the primary treatment, and we have seen outstanding improvement in her as a result.
Her growth has been very slow (3 pounds in 6mos) and she has frequent Breath Holding Attacks. The attacks were originally diagnosed as a reflux problem but medicine has failed to help. Our current plan is to have additional tests completed to determine if an absorption or reflux problem exists and attempt to improve her growth.
The genetics issue is a big unknown, her issues are assumed to relate but limited research has been done to understand what problems it causes or will cause.
Update October 10, 2000: I put Casey to bed just like any other night. Then later went to bed myself. Oddly, I decided to get up and check on her around 11pm and everything was normal. She wasn't having any problems breathing and did not need to be suctioned. So, I went back to bed.
October 11, 2000: We woke up in the morning to find Casey's trach was out, after several tries we realized the stoma had closed enough that we would not be able to get the trach back in (and we were already using the smallest size trach available). After several calls to our pediatrician, we decided not to take her to the local hospital but to drive the hour to her ENT.
This is Casey while we were waiting for the Dr. to call back with a decision on where to take her (7:15am):
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The drive was one of the most stressful in our lives. Although, Casey was not having any difficulty breathing and looked as if there was nothing different going on, we had no idea what to expect. Other than the hope that this phase of our life may actually be over. On arrival to the hospital, we went straight to the Dr.'s office. They looked at her, said that they would admit her overnight for observation and if she continued to show no signs of difficulty that we could go home without a trach.
That night, we were one of the happiest families in the hospital. Casey didn't have any problems and made sure everyone knew it. The best part for mom is October 11 is my birthday - and this was the best present I could ever receive.
As has been true for Casey her entire life, she decides when she is going to do something and there is no changing her mind. In this case, we had decided to take new jobs at work and we were planning to move. Casey was no longer the center of the chaos in our lives and she decided that we needed the reminder that she had to be the center of attention. Needless to say she won - we still moved and started new jobs in a new home with a whole lot less medical supplies.
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Casey's Christmas Picture
February 16, 2001: November was the last time she had her NG tube in, her eating continues to improve but weight gain is still a challenge. This winter has been tough with colds but is still an improvement over last year. Casey's learns new signs on a daily basis and her vocal skills continue to improve. I never realized how much we had to deal with when you have a child with a trach until the trach is gone. We really don't miss it. Casey is scheduled to have the stoma closed April 12 and we are planning a summer of swimming and boating to celebrate.
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Update November, 2003: The picture above is Casey now. Her stoma was successfully closed shortly after the last update and she has continued to develop on her own schedule. Casey started Kindergarten in an integrated program with both Special Needs and regular Kindergarten kids. She is doing extremely well, but definitely has a lot of catching up to do. We are getting her an E-Talk Impact computer to aid in communication. Her growth continues to be a concern, but her health is consistently improving.
