JEDI MASTER MADDI CORDOBI

They ended up doing an emergency C-section at UMC. After I got to Vegas (2 hours later) I got all the full details and was VERY happy to be with them (and much relieved but shaken) - The next day the Doctors started to stream in then we were told some VERY disturbing things including that Maddie would not survive for long...

At first no one knew what was going on except that Maddie had no anus and that a geneticist was going to be called in on the case and after the genetic testing was all done they discovered that she had a very rare genetic disorder known as Cat Eye Syndrome or in technical terms Partial Tetrasomy (22pter-22q11). Maddie stayed in there NICU for almost a month before it was safe to have Maddie transported back to UNM here in Albuquerque where she had spent another two months.

During that month we were very lucky to stay at the Ronald McDonald House of Greater Las Vegas - A TRULY great organization that helps families with children in hospitals with housing if they are from out of town. - Please donate if you eat at McDonald’s and happen to see a donation jar for the Ronald McDonald House!

After we got back home Maddie was seen by Geneticist Dr. Carol Clericuzio who had given us more information on C.E.S., Surgeon Dr. Karen Chun who has performed the majority of the 17+ surgeries that she has undergone. Maddie is still under the care of her primary doctor Dr. Sylvia Negrete and has therapy three times every two weeks with therapists Renee (communication), Nicky (physical), and Susan (also physical). We’ve been rather lucky to have so many GREAT caregivers involved!

So far, from what Rayna and I have seen and studied on the subject of C.E.S. (very little out there really) we know that we’ve been lucky even with all of the complications due to C.E.S. (a cleft palate, imperforate anus, anal atresia, vaginal fistula, malrotated intestines, no cardiac sphincter, no coloboma and she also has ear tags. She’s had a colostomy, had her intestines rotated, Ear tubes inserted, intestinal G and J-tubes placed, an analplasty, a Topee - a variation of the Nissan stomach wrap/fundoplication, and a very successful cleft pallet repair. Now she’s up for some serious dental surgery as well as having the G-tube removed).

Maddie is developmentally delayed (another drawback of C.E.S.) as she is almost three now and is still not really talking but has mastered very basic ASL and a more then a few words so communication works on a basic level so communication is a big barrier with her and she sometimes losses her cool when she cannot get her ideas or request across, it can be frustrating at times but we know what she’s saying for the most part. The therapists and doctors think that the cleft pallet may have been an issue with her speech as her ability to make sounds improved immediately after the cleft repair. But recently the docs have discovered partial hearing loss; we are told that it is not major - that they can determine at this time - but that it may be effecting her speech development.

Maddie has been responding very well to her physical therapy and now can walk short distances unaided (wobbly but determined mind you) and has shown very improved physical dexterity overall. There are times when she will just stand up and walk out of the room now… and it truly amazes me every time she does it.

Even after all that has been it’s still difficult to establish the extent of any mental or emotional disabilities that Maddie may possess due to her disability but she’s a very bright and wonderful little girl that is full of laughter and joy. And yet even after everything that Maddie has endured, she still has the resolve to overcome any obstacle that may come her way and with all the grace and courage befitting of any Jedi Master.