Gabby

Gabby's an angel sent from God--we had no idea that anything was different with her during pregnancy., all tests were normal. Then came July 15, 2006.by arrived at 4:58am, 6lbs 1 oz, she looked great.  All that was wrong was that she had really bad  club feet, we thought that was her only problem.  When Gabby was 6 hours old, they brought her to me to so I could feed her, then she turned blue and stopped breathing.   So they rushed her to NICU for 6 days-ran all sorts of test-everything was normal, so we took our little angel home.  A few weeks later, I noticed Gabby wasn't growing or eating very well so I took her to the doctor. He said she was fine, so back home we went--a few weeks passed and I could tell something just wasn't right. I have 3 other children, so Gabby was my 4th.   A Mother knows. I took her to yet another doctor. As soon as this doctor saw her he said she had a genetic syndrome, so he sent us to Baptist Hospital in North Carolina. The doctors there knew she had something but didn't know what she had. At this time Gabby was 3 months old and weighed 6 lbs. The doctors started running tests and all tests came back normal. At that point in time we didn't know what to think but kept testing for all kinds of syndromes. We went to 3 different hospitals in North Carolina but nobody could tell us anything.  At the age of 4 months old, she had to have put in a nasogastric tube, at the age of 7 months she had a gastrostomy and she still to this day has this.  Gabby has pigmentation all over her body, club feet, ear tags, and an extra nipple.  Gabby has been getting occupational and physical therapy ever since she was 3 months old. When Gabby was 2 years old they told us she would never walk.  That was hard to accept, but we did. When Gabby was 3 years old she started having seizures, at times real bad ones--in and out of the hospital all the time--took all kinds of meds and still to this day 2 years later they are still very bad. Gabby was finally diagnosed December 8th, 2009 with PKS.  That was the hardest day ever for us.  We went home, got on the website and started looking and searching for some kind of answer.  We looked at all the beautiful kids and felt good we weren't the only one out there going through this. In June 2010 we went to New Jersey  to meet all the PKS families--that was the best trip we've ever taken. The kids were all little angels and the families of the little ones were so helpful--can't wait to go again in 2012!   Today Gabby is 5 years old and doing good. She had to have a trach put in November 5, 2010. We have nursing care now for her, which has helped out bunches. Gabby is still very much delayed--she does not walk or neither can she talk but that's OK--I wouldn't change anything about her.  I look at children Gabby's age and it's hard to look at them at times, but I tell myself  God picked out to have a child like Gabby and take care of her---God made her like this for a reason. As long as I can hug her, kiss her, give all the love I can, she is a very happy little girl.