Christmas 2002

Dear Josiah's Doctors & Nurses, Just to remind you, through all the many patients you have, Josiah is a Trisomy 13 little boy born January 14, 1998. If you have not seen him recently, we're sure you'll enjoy his recent picture included. What a glorious time of year to be updating you on his progress. Though "specialists" and geneticists at another hospital thought "interrupting our pregnancy would be much better for our family", to the extreme that they refused to deliver him, abortion was never an option. This little child has been an incredible blessing to our entire family, and we believe he has touched some in the medical field also.

Physically: Josiah is diagnosed as a Trisomy 13 with holoprosencephaly and a Dandy-Walker cyst. His left eye has a coloboma and he is now fitted with (the cutest little) glasses. He has hearing aids, a "flattened" windpipe, and one vocal cord is paralyzed. His cleft palate has not been repaired yet, but his lip has. A V.S.D. is in past, and has dextrocardia. He still uses a G-tube, and is just the stoutest little thing ever. Last but not least, he has the cutest sixth toe on his left foot.

Medically:
You may remember that he is under the care of a fabulous Pediatrician, Dr. Regina Brown, who herself has been blessed with an older Trisomy 13 boy. Josiah had surgery for his omphalocele and a G-tube. His second surgery included cleft lip repair, fixed his tied tongue, a bronchoscopy, and PE tubes were put in place. The third surgery was a very successful fundo. We even noticed that his hair and nails were growing faster after that surgery. His last surgery was a successful repair of his V.S.D.

Hospital visits in 2000: We were able to visit CHOC at Mission for the first time in February. My quick witted husband said, "See, and you didn't think you were going to go anywhere for Valentine's." Not as though we like to boast about our "Hotel CHOC" visits, however it was nice to be loved and cared for there too. Thank you Mission. The most recent surgery was in May for his V.S.D. repair. This surgery once again, proved Josiah's stamina and love for the wonderful care given at CHOC. We stayed in recovery longer than expected, but I believe he just thought his nurses were cute. He set anew record for the longest SVT for his age; 28hrs. (A record we pray no other child will come near!) Through the hours, the Cardiology team did a fantastic job, even consulting with another team in San Diego. The right dose and combination of medicine came together and worked on our little guy so he was able to finally rest. Thank you to all working in PICU for your diligence!!

Developmentally: Josiah has proven previous Doctors' predictions and even the CHOC Neonatalogy Team's belief of his disposition to be wrong! To compare to what we were told, developmentally, Josiah is off the charts!! We are blessed to say, he has the most endearing personality! He sits on his own, crawls, is learning to pull himself up and is working with a walker. Now how about that?! Starting January 16, 200 1, he will be going to school. We are presently finding what school is best suited for him.

Socially: Josiah needs to be in the middle of everything. If his brother and sister move their play to another room, he will follow them. When the "bath-time" song is sung, and "It's time to brush our teeth" is called, he will come to the bathroom. Bath time is playtime and he loves to have his hair shampooed. He was brushing his own teeth for a while, but that has recently stopped. Maybe just proving to be atypical 2 year old and showing his rebellious side. Kissing has become even more passionate and will embrace your neck while he kisses you. Even still, he prefers kissing women only (do you blame him?). My husband even once said, "It's a good thing you're my son, otherwise I'd be jealous." His distinguishable laughter fills the room. For those who don't know any better, they will turn and look, but once they see him bucking with a smile from ear to ear and his crescent moon eyes beaming, they smile at his frolicking.

Our plea:
To any of you, that may come across a parent about to raise a Trisomy 13, let them; encourage them, give them hope and peace that they will be blessed with the endurance to handle such a special child. And could quite possibly be their "favorite" for every reason. If any of you would like to do a study or have any questions to better yourself on this syndrome, please, please call us. We would love to show him off and update you on the possibilities of this syndrome; if only the child would be allowed to live, instead of being aborted. After all, it is a child not a choice.

Thank you to all who have been there for our little guy and we will continue to update you at this special time of year. You have touched our lives in many ways. Each one of you, in your very own way, thank you.

God's blessings on you and your family during this most joyous time of year, Christmas.

Barry and Deidri Alderson
949-548-9099
2137 Sabot Cove
Costa Mesa, CA 92627-1799