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| This was the worst day of my life! Seeing my baby girl hooked up to all the machines in PICU was an experiance I was totally unprepared for. My little Leigha had tubes comming out of every part of her body. Thankfully this sight is only one we had to endure for less than 24 hours. A Third blood transfusion was giver to Leigha right when she was checked into PICU and a forth sometime in the middle of the night. However, when I walked into her room Wednesday morning Leigha was awake and eating. They slowly weaned her off the morphine that day and onto tylenol with Codein. I was so proud at what a fighter I had! |
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| Bandages were taken off by the plastic surgeon early Wednesday morning. I wasn't prepared...Leigha looked worse than before. All I could think was the surgeon had ruined my daughter and we should never have done this to her. After an hour I was able to calm down and Leigha was already looking better. Things were rounding out where the bandage had constricted against the swelling. I also realized that what I thought was a ridge of bone really was only the drain tube that they had inserted to drain off fluid. |
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| Swelling Peaks at about 48 hours. When Leigha was first transferred to the normal floor she was just starting to swell. Her left eye eventually swelled shut but her right managed to stay open so she could see an was a much happier baby for that. |
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| GOING HOME!!!!!! |
| We went home on Friday. What a relief it was to be in my own house again. Children's Mercy did a wonderful job and I would never take my daughter anywhere else for something this important. But THERE TRUELY IS NO PLACE LIKE HOME |
| Leigha has continued to get better, and as of today she has no developmental delays or any other issues. We Finally won our insurance battle for the postop DOC band after a third Level Appeal. To any one else currently fighting insurance: DON'T GIVE UP!!!!! Each time you are denied you are just one step closer to winning the fight. I couldn't have done any of this without my good friends at CAPPS and my friends at the Plagiocephaly support group. They have given me a shoulder to cry on and I have made friends that will always be in my heart. If you find yourself going through this adventure please check out my links on the previous page and feel free to contact me. |
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| BEFORE |
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| June 14, 2001 Leigha doesn't have CROUZON's SYNDROME!!! The genetics appointment today ruled it out! What a huge relief and a great weight off of our shoulders. The genetitist does think she has Muenke Nonsyndromic Coronal Craniosynostosis which is a defect on the FGFR3 gene. If she test positive for the gene then she will have a 50/50 chance passing coronal craniosynostosis onto her future children. No big surprise given Mark's family background. |
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| click the double helix to read more on Muenke syndrome |
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| Surgery |
| email me:: [email protected] |