John-Robert Martin

Born: December 22, 2004  

Update: 8-28-07

I just wanted to send a little update on John-Robert he seems to be doing very well since the operation I just wanted to send before and after pics of him with the G-tube  man what  a difference.

He was 20.3 when he went into the hospital and now three weeks later he is 26.5  but here they are and we are very excited  and hope to update more very soon.

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Link to video montage presentation

Hello my name is Jennifer Martin My Husband Rob and I have a son Named John-Robert who was born with full trisomy 13 on Dec 22 2004.

We are from A small town in Western Pennsylvania Called Summerville.

Update 10-27-06
Just a quick update on John-Robert he had another eye operation last Tuesday and all went well. He is to have the other eye done again on Nov 10, I am hoping everything goes as well. We got his MRI back and they found nothing really out of the normal but there was the back and the right frontal lob showed some delay in growth but like I said they were expecting worse.  He is still have seizures but they are changing his meds because this one is making his teeth go bad in a hurry and to help with the few seizures he is having a week, but he is doing great.  I have some new pictures to share hope to add them soon.   Hope all is well And God be with each and every family and thanks again for the prayers for our family and John-Robert. You are all in our prayers and hope to update you all soon.  
Jenn mother of John-Robert full t-13 and Kassie 10 and Dakota 4

Update: 9-8-06
Thanks all for the prayers and emails.  We are home now it is 9:20pm on sat night Sept .9th, it has been a long couple days but i wanted to let everyone know that John-Robert is stable and doing as good as to be expected. We were sent to Pittsburgh to Children’s never did make it to the eye operation on Friday instead he was taken in for mild seizures only on the left side.  They did a ct scan and nothing abnormal there. It seemed to be looking really good.  They did an EEG and determined at Dubois he was have some trouble in the right side temprial area causing mild left side seizures so they sent him  by ambulance to Children’s when we got there, they  determined he had anemia -with iron count of only 8. -something so they gave him iron meds and multi vitamin. They  changed his diet to high iron meat and  less milk,  then they did another EEG and said the same thing as the  other hospital but with more signs of epilepsy still in the right side temperal area so they put him on Tegretol to help control them. Now we are being scheduled  for an MRI to decide just what is the trouble but will keep all updated again thanks for the prayer and love.  Hope all is well and my prayers are with all in need and  to all my wonder trisomy 13 family – thanks again
Rob ,Jenn, Kassie, dakota, John trisomy 13 full

Update 5-28-06
All is going ok with John.  He still having a little trouble with gaining weight we are giving him a few more weeks to put on some weight or we are going to have a g-button put in to help him catch up from being sick.  He also could not have any milk because we found  out  he is allergic.  Here are a few pictures of John in his wheel chair and with his glasses.  
Jenn - John-Roberts mother. He is 17 months.

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John-Robert seems to be doing very well he is starting to lift his head for longer periods of time and is making great strides with his ot, pt, vision therapies as well as we have added speech which he will be starting this week . He is legally blind and they have done two operation for glaucoma which now they are saying he is showing signs of some close range vision he will be having another operation in may and then being fitted for glasses .

We were told at birth John-Robert would never make it past 6 months and there were no other children out there with this..

Please feel free to contact us at any time would love to hear about all your wonderful children and the miracles they have been thank you

Jenn John-Robert also has three sister Haliegh 14 Kassandra 10 and Dakota 3 babypooh_15864@yahoo.com