Sunday, January 31, 2010

Chloe's Progress and Upcoming Surgeries

January 31, 2010 It is a bit late for an update, but I hoped to complete something before the new week started. This may run a bit short, but thanks for being here! After working so hard to raise member numbers for a while and losing them instead, i just gave it to God, took my loyal friends advice and chilled for a while. Since doing that, new people have joined and invited friends and I have been really psyched about that. Thank you to those of you who are new and welcome!! This was a very interesting week for Dr. visits. A combined visit at Children's Hospital with the surgeon who will do the surgery to untether the spinal cord and also a facial/cranial specialist was attended by Jen, Lance me and of course the Warrior Princess. The expectation was to solidify plans for the upcoming surgery and Jennie thought it might be a good time to try to close the little cleft on Chloe's eyelid in the same surgery. The specialist was really quite taken with little Chloe, I believe, and after some conversing realized she was 'the' case he had been consulted about early on in her life. "it sort of 'all came back to him' and it was much easier for him to relate about her future. The spinal surgery should not be extremely complicated, it sounds like they are done there more that one would expect. There is a small band at the bottom of the spinal cord that does not allow it to move freely. It will be a small incision and snipping of this band and Chloe should be in the hospital for about 3 days on this one. There were several surprises along the way, some more positive than others. When talking about the cleft on the eye, the doctor made it very clear that this is NOT a simple surgery. Chloe does not have the occipital bones beneath the eyes, and if they do not wait until she is older and more likely to accept the rib bone, or hip graft, and the cleft has already been fixed, things could get hairy. it certainly is our greatest hope that when Chloe starts getting the jaw distractions, all will be well...that there will be no rejection of bone or infection or who knows what else! These things happen though, and the older she is, the more likely things will be successful. So, if they fix the cleft now, then she happened to reject the bone under the eye for any number of reasons, a succession of surgeries would take place, all of which might change the original fix, shape, functionality of the eyelid. So, this doctor says this is complicated and will NOT be one of the first things to be done. The good news is awesome, although we now wonder just how we will feel when it is accomplished. This doctor believes that the tags of skin on Chloe's face can safely be removed now! Removed when the surgery on the spinal cord is being done! He does not believe it will be a big deal, unless of course, it turned out that they were more connected to ear canals than thought. At this point though, it looks like Chloe may be getting a new look! We are all so used to seeing her as she is now, she is Chloe, Warrior really don't even see things that once were quite distracting. I am sure it won't be hard to make the adjustment, but it is an interesting thing to ponder. WE are used to it. I can never forget the the little boy at Kadin's party who had never met Chloe. He was about five, and of course very curious about her...she is different, carries a ventilator behind her wherever she goes, breathes through machines, has alarms that go off when least expected. Curiosity is curiosity. It just took me off guard when he approached Jen when she brought Chloe out for the cake, casually walked up and innocently said, "Where are her ears?" Jen being Jen, didn't skip a beat and answered, "Well God made her different. She is special and doesn't have ears. When she is older, she can have some made." His reply? "Oh. Okay", as he turned to watch Kadin blow out his birthday candles! Simple childhood question, accepted simply when answered simply! Wonderful! But what struck me so amazingly was how we just come expect certain thing as we grow and when they aren't that way, is is SO APPARENT! This is what makes it so hard socially and emotionally on our children growing up. It does not seem to be taught, it is just innate, an expectation of what should be! The doctor stated to us how kids like Chloe need such special upbringing in order to retain their self esteem and mental health. Children with less issues can be very much more disturbed without support in families and friends, or much worse that Chloe and have an awesome sense of their selves. WE will MOST certainly be doing all WE can to ensure her growing up healthy and happy! So, those are the basics this time. This upcoming surgery will wait until after her first birthday, April 20th! if you can believe it! Most likely, the date will be the end of April or early May. We are all very happy that she can stay out of the hospital a while longer, but also grateful that issues can begin to be tackled while she is little to some extent. Thank you so much to all who hang in here with us! I count so very much, as do Jen, Lance and the rest of this family, to have you there backing us up in prayer and sending your special energies for healing and happiness. So far, SO GOOD! God is answering our many, many prayers! Can't stop now! Love to all til next time! Nancy

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