The Beginning....

4-26-09

My name is Beth Elliott, and we live in Roper, NC. On May 20,2008 at 32 weeks gestation God graced my family and I with a beautiful baby boy named Milton "Gage" Elliott. Right away the doctors were concerned by different morpic features that Gage presented, but the ones that were of importance right away was his congenital heart defects and his difficulty eating. He was diagnosed right away with micrognathia (small jaw), and stayed in NICU 8 days until he was sent home feeding with a haberman nipple.
While Gage was in NICU they ran a chromosome test, and the results showed that he was Mosaic, and had a unbalanced translocation 2;13. We were informed that he was the only known case ever reported with this specific chromosome disorder and that his prognosis was unknown. We were paired with a Genetic specialist to follow him unaware that she was just the first specialists of many to come.
Gage was being followed by a feed team where they determined that he aspirated his milk, and every bottle would have to thickened by Thick It. With this he developed reflux and was sent to a pulmologist. He was followed by a Cardiologist for his ASD, and PDA, and later to find he also had a VSD, none of them will require surgery as of now. He requires OT and PT because of contractions of his hands and development delays. He sees a Urologist for his undescended testicles. At 6 months old he had Craniostynosis repair, and days later started having seizures which lead us to being seen by a Neurologist. He also developed Hypertension after the surgery and is now being followed by a Nephrologist. Gage has been on several medications to try to control his seizures, and on April 18 was air lifted to Duke due to uncontrollable seizures.
While in the hospital my sister-in-law, which has been God send to us and also a pediatric nurse of 20 years, received a call from our Geneticist and told her that a skin biopsy that was done on Sept 17 2008 had just come back and results show that Gage has Mosaic Partial Trisomy 13. Immediately we all break down because we have done research on this condition before and 80% of the time the prognosis is not good.
It wasn't until we were released from the hospital and I was able to continue my search that I stumbled across www.livingwithtrisomy13.org. It has given me and my family lots of hope to see and hear the stories of kids that are living with this rare disorder.
I am still trying to learn as much as I can about this syndrome, and I vow to inform as many people as I can about this. I would appreciate if someone could lead me to some resources that are out there that I am unaware of. I have ordered 2 books from the web site already. I appreciate any and all information that anyone can give.

6-16-09
Hello to all! Well, Gage is 1yr old now, and everyday that goes by he continues to have stride in his progress. We celebrated his birthday with lots of close friends and family, and although it was a nasty rainy day, it was such a joyous occasion!
Since I last wrote in, there as been a lot of changes with Gage. I believe the doctors have finally seemed to get his seizures under control. There has been a few slip ups with his eyes rolling back in his head, and occasionally a stiffness of his arm, but NOTHING like he had been going through. We have a lot of people praying for our little man, and all I can say is there is a lot of power in prayer!!! There is not a day that goes by that I don't thank the Lord for blessing us with another good day!
He has FINALLY started cutting teeth, and now has 3. Both bottom and one top one. He has had the hardest time with them. He has been really cranky, and runnig low grade fevers, but I think the worst is over with that.
Gage is showing us his true acrobat skills. He loves to be on the floor rolling all over the place. Front to back, back to front. He is also starting to get up on his knees and scoot! I don't think it will be much longer before he starts crawling. He still doesnt have full head control but is making some good progress with that. We have PT and OT that comes out to the house now that gives him a real good work out! We are also excited that Speech Therapy is going to be starting real soon. I swear he says mama from time to time, and he coos to me all day long.
The doctors are still concerned about his eye sight. We have been waiting for his neurologist to clear him so he can have an ERG done, and we finally got the ok to go ahead with that test. We are looking for it to be done some time in August.
Well, I think that about sums things up for now. I will keep you posted as things continue to change.