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Living with Trisomy 13 - Patau's Syndrome

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Hannah Clare Ward

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Born: September 29, 2000 

 

New Albany, Ohio (OH) - Trisomy 13 Mosaic

Click here to listen to "I Hope You Dance"
By Lee-Ann-Womack

 
 

 

"On our Prenatal hospital tour, We were told our child would never leave the NICU... NOW SHE DANCES!"

~ Kristin Ward

Update: August 3, 2007

I just realized that I have not done an update on Hannah in a year and a half and yet so much has happened in that time.

Hannah is now 6 years old and is just doing wonderfully! She just finished up her kindergarten year in a normal classroom setting and is really looking forward to starting first grade in the Fall. She is very excited about going to school “all day” and showing her little brother, who is entering kindergarten, “the ropes”.

Her kindergarten year went really well. She is now reading at a First Grade level and really loves to read. She spends about an hour each and every night reading all of her books in her bed before going to sleep. She tells me all the time how smart she is for being able to read.

Her writing is her difficult area, as she tends to see things backwards and tends to write some letters and even words backwards. She also has a bit of trouble with cross body movements and is working on those issues in her occupational therapy. In the year or so that she has been working with her therapist, I have seen amazing changes and I think she will conquer those issues real soon. Being left handed certainly doesn’t help matters!

Besides school, Hannah is also a very busy girl. She just finished up her second year of dance lessons where she took ballet, tap and jazz and had her recital this past Saturday. She did an amazing job and loves to be up on the stage. We are so proud of her.

She also kept busy all year with art classes, religious education classes, and is currently taking swimming lessons and is in rock star camp. She and 8 others wrote, sang and recorded their very own song and it was really good! She will take an eco-art class in July and spends the rest of her time using her very vivid imagination.

Hannah is just a delight to be around and all of her teachers just love her. They all tell me that she has a great balance of being a leader and a follower with her friends and she really doesn’t let too many things bother her, which is great. I am so proud of my sweet girl.

Oh, and she is really excited about being a big sister again in October. She really wanted to have a sister but is now okay with having three brothers. Daddy says that she is our miracle girl and that God only gave us one girl because she is so special. She loves that answer, of course, because she is indeed Daddy’s Little Girl.

Hope everyone has a great summer…I will update again when school starts in the Fall.
Kristin

- - -

Update December 2005
Hannah turned 5 on Sept. 29th and is doing very well! She loves her pre-k class, and I couldn't be happier with her teachers and the kids in her class. Her teachers just absolutely love every one of the kids in there, you can tell, and they tell me over and over what a joy it is to have her in their class. I actually was early to pick her up one day and overheard her teacher telling another teacher how much she loves Hannah's laugh and how much fun she is in school because she is just so excited about learning. Now the teacher had no idea that I was there so this was just off the cuff...really nice to hear.

Hannah went for an OT and PT evaluation a few weeks ago since we have moved to Ohio and have to get her into new programs. She actually has caught up to her delay in OT, and no therapy was recommended in this area. I was really happy to hear that because I know she has worked very hard on it. She had a 1 year delay in April of 2005 and has since made up a year. Her PT evaluation was good too but she needs some help in the balance area. It's strange...she is left handed and left should be her dominant side but she could do a lot more on her right (ie. standing on one foot, hopping) than on her left. She also has a big balance issue. They recommended her not for one-on-one therapy but to be part of a "class" of kids all around the same developmental level. I think that would be better for her so she doesn't think she is being singled out. It starts after the new year so we will see how it goes.

Hannah's two brothers are doing well too. The 3 year old, Brennan, is in preschool too and doing fine with the exception of a few time outs for "interrupting" and Declan is 6 months old and such an angel. Hannah is really good with both of them.

Thanks,

Kristin Ward   kstinw1970@yahoo.com
mom of Hannah - 5
t13 mosaic



Update: October 2005
Hannah was diagnosed with t13 mosaic in utero, and we were given a very grim prognosis for her future. We were told that she wouldn't survive past one week if she was alive at her birth. Well, she is now 5 years old and is very much alive and thriving! She had an ASD, PFO, and PDA at birth which all closed by the age of 3. Other than that, she has had absolutely no other medical problems. She is extremely smart cognitively, and is both sweet and stubborn all at the same time. She is slightly behind in her fine and gross motor skills but early intervention teams determined that she is still within the normal range, so she does not have any therapy at this time.
Hannah just turned 5 years old last week and is doing great. She goes to pre-K three days a week now and is really keeping up with the other kids. She still has a bit of trouble with her fine motor skills i.e. writing and cutting with scissors, but she has been thrown a double wrench there because she is also left-handed. So it will take time but I am hoping that this extra year of pre-k will help her out.

Cognitively Hannah is super smart. She never forgets anything you tell her and she uses the biggest words she can, and usually uses them correctly. Her favorite word right now is Aactually@. She always says to me, A Well, actually Mom, I can do that.@ Too funny! She is also reading bit and is getting very good at sounding things out. She amazes us with some of the things that come out of her mouth - she is a trip!

Hannah is also excited about our recent move to Ohio. We now live near one set of grandparents and she is happy about that. She also loves her new house and new neighborhood.

She also loves her new little brother, Declan, who was born on May 31st. Now she can boss him around, along with her other brother, Brennan, age 3. All in all, she is doing fantastic.

Mother: Kristin Ward,  Ellicott City, Maryland

 

kstinw1970@yahoo.com submitted: 2-23-05

 

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All text and graphics © LivingWithTrisomy13.org 2005-2010 - all rights reserved
Use prohibited without permission
All information found on this site was submitted to us directly by the families
and used on this site with their permission.

Cover photo of Pamela Sullivan & her precious daughter Maria, copyright Pamela Sullivan 2004, used with permission.
If We Hold On Together  Song Copyright 2002 by Patricia Welch, Ltd. All rights reserved.   Used with permission.
 
*Disclaimer
All material on this site reflects our personal journey with raising a Trisomy 13 (Patau Syndrome) - child. It is not meant to replace any medical advise of a professional familiar with your specific condition. The personal journeys of any parents on this site are only their opinions and their own journey with having a Trisomy 13 child. You should consult with your own physician or other medical professional regarding the opinions or recommendations expressed within these pages as to your own child's symptoms and medical condition.
 
 

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