Mesquite, Texas (TX) - Full Trisomy 13

"Kristopher is an example that GOD does exist and that miracles do happen." ~Leigh Anne Akins

2-19-08

Some updates on Kristopher. We moved to Mesquite Texas last year and love it! Kritter has gained almost 10 pounds since then and is about 22 lbs now. We celebrated his 2 b-day back in Tampa with family and friends. Everyone was amazed at how big he has gotten!

Since we moved Kritter has been pretty healthy. He had pneumonia in Sept, which ended our 9 month illness-free run! He stayed for roughly 20 days for that and we were introduced to a GJ tube to help with feeding and reflux issues. Also, he was diagnosed with myoclonic jerks. I always thought this was a side effect of one of his meds, but boy was I off!

This past January, he was back at Children's Medical Center in Dallas. This time our complaint was irritability and excessive crying. Kritter does not cry. EVER. So we knew something was not right. An xray of his chest was ok, but drs could see air in the wall of the intestine. After a quick exploratory surgery to check for perferations in the intestine, he was admitted. No perferations though! Later it was diagnosed as a bacterial infection called C-diff. Then, the central line in his chest was infected and a fungus began to grow, so he was treated for that. A PIC line was inserted and after 25 days we were able to go home on IV antibiotics. We just finished those so we are ready to have this thing taken out! We did have to postpone his cleft palate surgery until mid April. They are going to put tubes in his ears and perform and ABR to further check his hearing. We are so ready for that!

Kristopher current ailments include, coritcal blindness, cleft palate, mental delay, mino ASD and VSD, also bicuspid aortic valve, none of which require meds, seizures, myoclonic jerks, reflux, poly cystic kidneys, high blood pressure, and constipation. Currently, he can only roll around. We have gotten a standing frame approved by Medicaid so we are waiting on that. He is trying very hard to sit up, but just needs a little extra oompf! He likes to chew on dill pickles, oranges and peppermints!

LA

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10-14-06

My name is Leigh Anne Akins. My son Kristopher was born on 12/13/05 in Tampa, FL. He was full term. Kristopher weighed in at 6 lbs 8 oz and was 18 3/4" long. While I was pregnant he was diagnosed with Dandy Walker Syndrome. But, once Kristopher was born we were told after having had an MRI and CT scan that he did not have DW. Blood work was drawn and 1 week later we were told that he had Trisomy 13. I am assuming he has Full T13, as every cell tested had the extra chromosome.

Kristopher was born with a bilateral cleft lip and palate as well as an extra finger on his left pinky. Tests showed he had an insignificant VSD, which did not require any medication or surgery. Today, he is 9 1/2 months old. He is delayed some, he cant roll over all the way and he has trouble holding his head up. He was declared legally blind and has failed his hearing test 2 times.

On April 27th, Kristopher's lip was repaired by a wonderful dr in St. Pete at All Children's Hospital. We are now getting ready for his palate to be repaired. Kristopher is fed only through a peg tube. We recently did a swallow study and were shown that he swallowed most of his food, but some of it was going into his air way and some goes up into the palate and comes out of his nose. His hardest challenges have been seizures and reflux. He is on 2 different meds for the reflux and is on meds for both high blood pressure and seizures. To date Kristopher only weighs 12/5 lbs.

Even with all of "the shrimps" problems, he is still a miracle baby. Most of his doctors early on in life said that he would probably die within the first couple of weeks of life. Kristopher is an example that GOD does exist and that miracles do happen.

Attached are 3 pictures - 2 of which are when he was a newborn, the other a few months ago.
 
Leigh Anne Akins
leighlabob@yahoo.com