Alexis was born January 20, 2004 on a cold, sunny day.  She was born 9 days before her due date at 38 weeks and 5 days.  We were expecting a 7 lb. baby and Alexis was only 4 lb, 8 oz.  They had to use the vacuum extractor during labor and we sensed something was wrong.  Her apgars were good however.  They immediatley took her to the NICU due to the IUGR and did a full CT scan were they found a large right middle cerebral artery infarct or stroke.  Kevin and I were devistated!  After a 3 week stay in the NICU we were able to take our 5 lb. baby home.  It seems that no one should be able to take a baby home that small!  Alexis was very irritable the first three months with 2 formula changes.  We were lucky in the sense that we knew very early on what she might face in the future.  She started OT at 5 months, PT at 8 months, ST at 12 months, and DT and 12 months.  Alexis never crawled but scooted on her bumb.  She started walking at 17 months and is now able to run, skip, and jump.  We do serial casting every 6 months to combat the spasticity in her leg.  We will continue to do this until it is unaffective.  At that point we will explore heel cord lengthening surgery.  Alexis has had 8 rounds of Botox in her left hand and leg.  In 2008 we went to the University of Alabama for three weeks and participated in the constraint induced therapy program for her left hand.  She did make some gains but continues to struggle with the use of her hand.  We have met with two surgeons, one of which was involved in the first hand transplant out of Louisville, KY.  He was amazing and recommended waiting to have the tendon transfer in her hand and arm until she is a little older.  Alexis started having seizures at 15 months and still has them today.  She seems to have them every 3 months and they vary in severity.  We almost lost her in 2006 & 2007 to status epilepticus where she stopped breathing and seiz ed for over an hour.  The majority of the seizures have been complex partials but she has also had absence seizures.  She is taking Trileptal and Topamax daily to combat the frequency.  Also, Alexis and our family take part in a research study out of the Univeristy of Chicago to evaluate speech patterns and delays in children who have suffered strokes.  This study has been very interesting and it helps us to know we may help another child in the future.

One thing to remember is that no Doctor can ever predict what our children are capable of.  Alexis is very intelligent.  She knows her alphabet, can write her name (though not neatly) and loves for us to read to her.  She is very active and participates in swimming, horse back riding, dance and hopefully soccer this year.  She is our beautiful baby girl whom we love with all our hearts.  Alexis is very outgoing and doesn't know a stranger.  She will start Kindergarten the fall of 2009 and we have very high hopes for her!  Our hopes for RICHSS is that any parent in the region will know they are not alone and can join a community of caring, loving parents and beautiful children that God has blessed us with!

Kristi
Mom to Alexis, 5yrs. old