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Trisomy 13 - Patau Snydrome - Photos, Support and Resources

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LivingWithTrisomy13.org

SOFT
(Support Organization for Trisomy 13, 18 & Related Disorders)
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July 23 - July 26, 2009 Roanoke, Virginia
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Living with Trisomy 13 - Patau's Syndrome

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Logan Arbogast    

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Born: December 4, 2001 

  Newport, Pennsylvania (PA) - Trisomy 13 Mosaic

Tina Arbogast is available for immediate support
717-821-2080. Email  hertina@aol.com 

Update 8-30-08
Logan is now in school. He can pick his picture out when offered two people. He is learning his letters, colors, and numbers, Logan receive a home health aide or a nurse at school along with a TSS worker and BSC.

Logan was recently diagnosed as severely Autistic. We had a rough 2 years of Logan only sleeping 3 hours a day. With the help of a God send Neurologist Logan is now on medication to help in all areas.

He is a joy and pleasure to be around now. Logan's left leg is one inch longer than the right. We just got him a shoe lift. I am waiting for his new reverse K walker and a weighted vest. I fully expect Logan to really making big progress with his walker.

At school the only time he uses the wheelchair is for going a long distance such as recess, and transportation. Other wise he sits in his regular school chairs or stands. Logan's new enclosed canopy bed next Monday. Logan will be receiving music therapy and vision therapy at school this year.

I am moving next weekend the address is 30 Bower St Montgomery, PA 17752 I am not sure what the phone number will be, On a side note I had to quit my job in order to take care of Logan. So we are going into low income housing and while Logan is at school I will get a part time job to help financially. I am really worried about being able to provide a good Christmas this year for Logan.

Tina

 

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Trisomy 13 mosaic, what a precious miracle. Born at 1lb., Logan just had a nissenfudoplication repaired. Logan will be going into preschool through the IU. He is becoming very mobile on his own with his new wheelchair. Logan is very social and engaging, he is loved by all that comes into contact with him.  Hershey, Pennsylvania
 

Update 9-24-05:

Logan is doing well with his walker and he is sitting up, sits on his knees or legs bent, and pulling himself up on the tv.

He has a new walker that has hip pads that are covered in the same material as his wheelchair sides. I put him on a time out for kicking the tv last week. I made him sit on the cat condo which is perfect height for him and the walker is in front of him that he holds on to. He was SOOO mad at me that he started biting the hip pads. So I thought I will show you! I smeared baby food all over the hip pads and he stopped biting it, he was too busy trying to wipe off the peas I put on it. Well his new walker went to school with him this week and I got a phone call from Lori on Tuesday, guess who walked by himself with the help of his new walker!!!! You got it he was walking down the hall by himself all proud like he should be.

So this morning he wouldn't stop licking and mouthing his one toy. I got sweet pot. baby food and smeared it like before BUT this time he loved the baby food and licked it clean!!!!! Lori (his nurse) and I sat in shock! This is the 1st time in over 2yrs that he allowed any type of food in his mouth with out gagging to the point of getting sick. So I guess while I thought I would teach him he taught me to be creative in trying to get him to eat. Tina

Update 2-15-02
Logan started his 2nd week of preschool. Logan since starting school has begun pulling himself up on toys to a kneeling position, pulled himself up to a sitting position using his hands for balance, waved bye bye after hearing the word, he is now imitating noises from Bear in the big blue house show, and crawled 4 inches by himself! I am so proud of  my big boy! Tina


 

 

 

   

 
 

 

 submitted: 1-25-05 by Tina Arbogast  

 

Have a child living with Trisomy 13?  We would love to add your child to our Album.
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Living with Trisomy 13
Focused on prayerful support and gifts of love to those touched by a Trisomy 13 child.
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Attn: LivingWithTrisomy13
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Text and graphics © LivingWithTrisomy13.org 2005-2009 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 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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