Miss Maddie spent the night with her Daydee (Grandmother)....well actually her Daydee spent the night with her while I went home yesterday, returning today. I received lots of updates along with many cute pictures. I was informed that Maddie mostly played ALL day, practically not sleeping a wink...hopefully that means shell sleep well tonight! Tomorrow morning at 7:30am #MyMaddie will head to the OR for her Craniosynostosis and finger procedures. I know many have asked WHYshe needs to have these surgeries & why Maddie will need a helmet...or what it means to have a Craniosynostosis? I feel that there are many people who do not completely understand, ALL thats going on with Miss #MightyMaddie, other than her heart & pulmonary issues. Im more than happy to explain & educate you☺️... These are terms that I was once not familiar with either, nor did I ever think I would need to know/learn about them. In any event, due to Maddies chromosome disorder, she was born with a type of Craniosynostosis called Lambdiod synostosis along with a double digit on her right thumb (pre-axial polydactyly). Tomorrow, January 20th Maddie will have 2 surgeries, back to back, to address both issues. First, she will undergo the minimally invasive endoscopic Craniosynostosis procedure. During an endoscopic craniosynostosis repair surgeons utilize an endoscope through two small incisions measuring about 1.5 inches each at the top of the head. A segment of bone is removed near the fused bone and in a few other places, releasing the fusion. This procedure alone takes any where from 45 minutes to an hour. No plating or reshaping is performed. Instead, in the first week after surgery a custom molded helmet is made, which patients wear 22-23 hours a day until they reach 1 year of age or told other wise by physicians. Then, Maddie will undergo a surgery to remove her extra digit (Pre-axial Polydactyl); today we were told that this surgery will take approximately 1 hour. This procedure involves the removal and shaving of bone, redirecting nerves, tissue, veins, skin & muscle. Craniosynostosis: Craniosynostosis is a rare condition that affects approximately one child in every 2,000 live births, and involves pathological fusion of the skull bones. Consequences of craniosynostosis include possible limitation of brain growth and cosmetic effects on the appearance of the child. Traditional repairs for these conditions over the past 3-4 decades have involved an open operation with a large skin incision and major manipulations of the skull bones. More recently, minimally invasive endoscopic techniques have been developed to release the skull bones, followed by postoperative treatment with either an external orthosis or internal springs and distractors to achieve the desired correction. Lambdoid synostosis: Lambdoid synostosis is the rarest type of craniosynostosis and occurs in about 2-4% of cases. Fusion occurs in the lambdoid suture, which runs along the back of the head. Surgical management of lambdoid synostosis involves restructuring the posterior fossa to provide adequate space for normal brain development as well as restoring normal symmetry. Pre-axial Polydactyl: Polydactyly literally means “extra digits.” There may be an extra thumb, small finger, or, less commonly, an extra digit in the central part of the hand. Polydactyly is one of the most common congenital hand anomalies. Pre-axial Polydactyl means extra thumb. I HOPE THIS HELPS EVERY ONE GET A BETTER UNDERSTANDING. (These are things weve had to push to the side due to Maddies heart failure. Now that she has a strong/healthy heart, doctors feel comfortable to address them❤️)
Posted on: Tue, 20 Jan 2015 01:34:46 +0000
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