Wednesday, June 10, 2009

What a difference a year can make…

A year ago today was the start of the scariest weeks of our lives. I woke up to find Kenzie’s face had transformed into one of a baby I didn’t recognize. She had a fever of 103.8 and we rushed to the ER. Upon arrival, Kenzie was diagnosed with SVC syndrome. It was a life threatening complication of the central line that we were using to keep her alive. To see Kenzie looking the way she did that week can not be described in words. Her head had gotten so swollen that at 1 point, Kenzie’s ears were pushed forward, folded into her head. Kenzie was put in the ICU and kept on life support for a week. On Friday the 13th after Kenzie’s second IR procedure where her stents were placed, Kenzie’s heart had trouble pumping due to the blood filling around it. Jordan and I stood around helpless watching as doctors and nurses ran to her bedside. To remember this day and the whole week is heartbreaking, but to see where Kenzie has come is truly inspirational!

A year ago Kenzie was 7 months old. She did not roll over and did not sit up without assistance. She did not crawl. She was hooked up to 1 tube 24 hours a day into her stomach and another 12 hours at night. We carried her around followed always by an IV pole. She got shots twice a day that we administered. A year ago, Kenzie ate or drank nothing by mouth. Now, 1 year later it brings tears to my eyes to be able to say that Kenzie is rolling over, sitting up, crawling, cruising, and starting to try and walk! She says words like “Hi, Bye, Mommy, Dada, Car and Bunny” She eats! Kenzie now takes 90% of her calories by mouth (still purees, but it’s a work in progress). We are working to try and find ways to get rid of the tube but that may take awhile. Most importantly, is that our sickly baby has turned into the happiest of toddlers! With all of the illnesses and about 140 days of hospital stays, we are so so lucky that Kenzie’s brain has developed totally normally. We are even hoping to put her into some sort of 2’s program WITHOUT me this fall in LA.

Jordan finishes his 5 years of residency next week. He takes his test to become a board certified orthopedic surgeon on July 9, and we are set to move with the help of my best friend Lindsay, July 13. We have already gone out to LA and found an apartment and setup doctors for Kenzie. Our hope is that this next year is a new start for us. We wish for it to be free of hospital stays and massive therapy sessions. We will continue to work with Kenzie to get her to eat solids and take drinks like a normal toddler her age and to hopefully one day even enjoy mealtime.

Jordan and I think back to a year ago and we still wonder how we got so lucky to have the support of our family and friends. That night when we came out to the waiting room and saw everyone there… that you all had just showed up because you heard via the grapevine what was going on, it makes it harder to move. I’m not sure I will have time to update again before the move but we hope that we have LOTS of visitors next year and promise to update the blog from sunny LA!

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