Chloe Maiya Duncan
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Chloe is 11 months old (d.o.b. 16/01/2002) and has a laryngeal cleft and was suffering from severe reflux. She has therefore had a tracheostomy and a gastrostomy since she was 2 weeks old. She has also had a nissens fundoplacation as she was having a real problem with vomiting all the time. What a godsend that was! Since then she has been able to put on weight nicely.
Chloe has just been to Great Ormond Street where the surgeon has told us he will be able to go ahead with Chloe's cleft repair on March 10th, 2003. That will be my 30th birthday, but I don't care that I will be in hospital for it, in fact I can't think of a better birthday present! He also lazered a granulation away which was covering her airway above the trachy which means we may well hear her making some noises! We will be trying a speech valve again soon as she should be able to cope with it now.
After her cleft repair, when it is successful, the next thing he wants is to get Chloe starting to eat orally and to aim towards getting rid of her gastrostomy. Chloe has never taken food orally so she is going to have to learn to swallow. I'm sure it's going to be a very strange sensation for her.
Worries: Whether Chloe will have a voice, but our surgeon is pretty confident even though the under-developed vocal chord still hasn't grown at all. He said that we won't have an opera singer, but I assured him we certainly didn't want one of those anyway!!!!
Although Chloe's condition was a complete surprise when she was born and my husband Malcolm and I have been to hell and back, every day Chloe does something new and she is a constant source of joy and we both love her very much and couldn't imagine life without her. Like other parents in our situation, I just cannot wait for the day that I will be able to go out and not have to remember to take an emergency bag, a suction pump, catheters, her feeding pump, on top of all the other baby items you need. It will be heavenly!!!!
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updated 12/20/02
