The Champion Jeremy is....

I'm going to attempt to type up Jeremy birth and his entire past history:

Monday August 9, 1999- I wake up early morning with some light contractions, Dr. Lunn my OB/gyn already scheduled me to enter St. Francis Hospital at 41 1/2 weeks pregnant to have my labor induced. I take one last look in the baby's room to make sure everything is ready and tell the baby this is it, I am going to finally get to meet you today. I was so excited to finally be a mommy. Dr. Lunn comes in breaks my water and almost instantly the baby's heart rate starts to drop, they give me oxygen and put me on my side but it doesn't help. Dr. Lunn decided we need to do an emergency C-section because the baby or I am not going to tolerate labor and that scared me. I am being wheeled down to an OR around 8:30am to get prepared to have a C-section. At 9am, Jeremy Ray is born weighing 5'3 and 17 and 1/2 inches long, he looked perfect to me and I was thrilled to have a little boy. They had the special care team to check him out, his apgar scores were 9 and 9 so Jeremy came with us to our room. Dr. Scott Cyrus, Jeremy's Peditrician, who I interviewed and picked out when I was 8 months pregnant came in to the room at 12:30pm, it was a welcome person because he was familar to us but the words he spoke were not what I wanted to hear. Dr. Cyrus told us Jeremy looked great, but he suspected he had hydrocephalus and would do a test to confrim the diagnoses and honestly it didn't matter what he just told me because all I heard was there was something wrong with Jeremy. That evening we meet Dr. Karl Deitweiller, Jeremy's NSG who confirmed that Jeremy has hydrocpehalus and needed a shunt placed or it would result in severe brain damage or death. What choice did we have. Jeremy was admitted to EOPC, St. Francis Eastern Oklahoma Perinatal Center and you know if your baby is admitted they are sick. I was allowed to go down and see Jeremy, the walk from your room to the EOPC is the longest, lonliest walk you will have to take, you have all these thoughts running through your head and you don't know what to expect. I just had to realize that my baby who was suppose to come home with me on Wednesday is going to have brain surgery the next day.

Tuesday, August 10, 99- 2pm Jeremy has surgery to place the VP shunt and did great with the procedure, Dr. Deitweiller was impressed.

Friday, Aug 13, 99, follow up CT scan to make sure the shunt was working and doing what it should, but a brain abnormailtiy was discovered so they ordered an MRI.

Saturday, Aug 14, 99- the MRI showed that Jeremy was missing part of his brain or that is all I could understand at this time in my life, he has Agensis of the corpus callosum which we were told he could be deaf, blind, mental retardation, probably will never walk or talk. We did a bone growth study to make sure Jeremy was his birth age, that looked great. We met Dr. Stephen Groves for the first time, he checked out Jeremy's optic nerves which looked great. The chromosone test came back showing that Jeremy had normal XY kayotype for a male child. We remain in the unit because Jeremy is having trouble eating. If Jeremy doesn't start eating the other option would be a feeding tube.

Monday, Aug 16, 99- we entered the unit and our physican tells us that they heard a heart murmur so Jeremy needed an echocardigram to find out what is going on with the heart. 10pm, I meet a pediatric cardiologist who gave me the most devasting news since Jeremy was born. Jeremy was born with a "severe" heart defect, a small ASD, overiding aorta, mitral valve stenosis and a very large VSD. We were told to expect to have a sick baby in and out of the hospital and hopefully he can wait until he is a year old to have surgery. I cried all the way home and couldn't speak to anyone this was the worse day of my entire life.

Friday, Aug 20, 99- Jeremy started doing amazily well, he started eating and did gain back some of his weight so we were officially discharged from EOPC. We were given a list of physicans to see, symptons to watch for and to be honest I was really scared to take him home and didn't feel qualified to be his mother.

September 10, 99, our cardiologist put Jeremy on Lasix the day before so we had to follow up with Dr. Cyrus to check Jeremy's electrolytes. Dr. Cyrus re-admitted Jeremy to St. Francis Children's Hospital for the first time, I just didn't realize it wasn't going to be the last. We did IV fluids all weekend to regain his potassium and sodium. I cried all the way to the hospital with Jeremy and was going to fire Dr. Cyrus. This visited prompted some metabollic testing and an appointment with Dr. Coldwell metabollic physican but all testing came back negative.

February 2000- Jeremy wasn't feeling good, and by Saturday evening I felt uncomfortable with him being at home so we went for the first time to the St. Francis Children's Urgent care clinic. We were almost admitted for Pnemonia but after the cardiologist checked out Jeremy they felt his heart was stable. We were sent home with some antibotic, breathing treatments and to follow up with Dr. Cyrus on Monday. We started the treatment and was settling in for the night when around midnight the phone rang at home and it was our peditrician Dr. Cyrus in a panic wondering where Jeremy was he had called the hospital because the physican assured him we were going to be admitted. That made me realize how much he really cared for the well being of Jeremy and from that moment on he was my liason and our special doctor.

June of 2000- after Jeremy battled a stomach virus we seen Dr. Cyrus, he was loosing weight. We were required to come in for weekly weight checks. Dr. Cyrus made sure we were getting enough calories but more importantly put a call into our cardiologist that we needed to address fixing the heart. His heart was taking too many of his calories and he was diagnosed as failure to thrive. This prompted more metabollic testing only to have them come back negative as well and the thought of we are heading for heart surgery.

July 23, 00 we entered St. Francis Pediatric Intesive Care unit to be prepped and prepared for our heart cartherization with Dr. Cooper and Dr. Mathew Kimberling, Jeremy did great through the procedure and came back to PICU. We were admitted overnight because Jeremy couldn't maintain a good oxygen level and they felt uncomfortable sending us home. Dr. Kleiwer told us that we may have to stay until his heart was fixed, I was really scared Jeremy didn't do very well but amazing through the night he thrived and we were released the next morning. Jeremy's mitral valve was so severe that they really had no idea what to expect in the upper chamber of the heart.

August 15, 00- we met Dr. Richard Ranne the most dreaded appointment of my life he is the Pedaitric Cardivascular surgeon and you see him because you need heart surgery. He assured me he wanted to repair the mitral valve but really didn't know what he would have until he got in there. Jeremy was failure to thrive and congestive heart failure and not even a year old. He said the surgery could take up to 8 hours and we could be in the hospital for 14 days and then he has to discuss fataility rates with you. Major open heart surgery was scheduled for August 23, 00 and I cried all the way home. I started researching the internet for open heart surgery and it really scared me. I had to place my son in the hands of GOD his creator along with my faith.

August 23, 00- we entered St. Francis in-patient surgery to be prepared for open heart surgery, I was well aware they were going to open up my son and stop his heart so Dr. Ranne could work on his heart and they did this by putting Jeremy on the heart-lung bypass machine, I was scared cause Jeremy was so fragile and some children are not able to come off of the machine. This was a very traumatic time for me, my in-laws, my parents, my sister and brother in law where all there to help support us. I turn my 14 pd infant over to these nurses and started to cry, I was so afraid I would never see Jeremy alive again and I had wanted a baby so bad for over 8 years. I prayed to GOD, please let him survive, protect him but if it's your will to take him home with you, the strength will come from you because I can't deal with this but please GOD don't let him die. Dr. David Hall was going to place tubes in Jeremy's ears before surgery so we could get this done at one time. Dr. Hall came out quickly and informed us that Jeremy was doing really good, the tubes went in easy and after he recovered from heart surgery follow up with him on the tubes. I would dread the phone ringing each time as they would update us of what was going on, although I appreciated knowing it was the fear of each ring being told my baby didn't survive, with each call it was Dr. Ranne sewing the patch on the very large VSD, basically Jeremy had no wall. Then 10:30 the call came through that Dr. Ranne was finished, closing up Jeremy he came off the heart lung-bypass machine very easy. I quizzed about the mitral valve that was going to be our biggest issue and no one mentioned it, they said, "oh no big deal he was born with a fiberous ring around the valve, Dr. Ranne did some cutting, cleaned it up and it started working". THERE WAS LOT OF PRASING GOD IN THAT WAITING ROOM. Jeremy was headed to PICU and we were to go up to the waiting room and wait on Ranne to stablilzie Jeremy. We were then allowed to see him. Jeremy was in an induced comma so he wouldn't move, or be tempted to pull out the chest tube, vent or pacemaker. It was really hard to see him that way and not hold him. Dr. Cyrus had prepared me it would be hard not to hold him. The thing that really broke my heart is when he woke up and started to cry I couldn't hear him cry due to the vent he was on, I had to get as close as I could to his face so he would feel that comfort and me feel his comfort.

August 23, 00, Jeremy came off the vent easily and they removed the pacemaker, which he never did need.

Aug 26, we were transfered to the children's floor where we would stay until going home.

Aug 28- after the surgery only taking 4 hours and 6 days after having major open heart surgery, Jeremy was discharged to go home, his heart was doing great. We followed up later that week with Dr. Cyrus, he weighed him took out his stithes, we seen Dr. Ranne the next Tuesday and he released us from his care.

Sept 00- A phone call from Dr. Cyrus about 4:30pm sent us back to St. Francis Children's Hospital, where Jeremy was re-admiited due to his white blood count being extremely high and he was afraid he had an infection in his heart. We did an echo the heart looked great, the shunt was tapped to rule out shunt infection. We stayed for a week, Jeremy responded to treatment and we were released, unknown infection.

April 02- A follow up MRI prompted a call from Dr. Cyrus to tell me Jeremy's ventricles were enlarged need to see our NSG and I knew that meant a new shunt, Jeremy's shunt was 2 1/2 years old and I was awful fond of the shunt we had.

April 15, 02- Jeremy was admited to St. Francis Children's Hospital to have a shunt revision and we were discharged the next day.

April 21- I took Jeremy to St. Francis ER he was not doing right and something was wrong, the CT showed ventricles were not enlarged, the shunt was not tapped due to him not running a fever. The weeks to follow were several visits to Dr. Cyrus to rule out various things, we did blood work and he even cultured his blood. May 6 a phone call from school Jeremy running a high fever being lethargic prompted a quick trip to Dr. Cyrus and him calling our NSG to say he is admitting us and he needs to tap the shunt. We would spend 12 days in the hospital battling a shunt infection which means removing the infected shunt, placing an external shunt to where he would receive powerful antibotic vancyomcian until infection was cleared and then getting a new shunt on May 15. Jeremy was noted to have scollosis so we needed to address this. I was overhwhelmed and felt like we had dealt with everything.

Since May 17, 02 Jeremy has not been admitted to the children's hospital overnight. We have had our share of outpatient proceudres, dental surgery, stints placed in eyes, sleep study, CT, MRI, echo and tubes placed in ears. Jeremy can't be sedated so his procedures are done by anesthologist.

We followed with Dr. Burham Say who was our local genetcist and Jeremy was tested for Smith-Lemi-Optiz syndrome, Williams Syndrome, Jacobson syndrome, Pallister-Killiam syndrome and several others but nothing came back with a positive diagnose. Dr. Coldwell followed Jeremy for metabollic but nothing came back with that. When Dr. Say retired we started seeing Dr. Moggandam who tested and considered Jeremy for several syndromes but nothing came back positive. We found FG syndrome and Dr. Moggandam did in fact feel that Jeremy fit the critera but it required a clinical diagnoses as there was no known test. Dr. Cyrus helped us gather 5 years of medical information, school testing and sent to Dr. John Optiz who was one of the founders of FG. March 23, 2005 we took Jeremy to see Dr. Optiz at the Divison of Medical Genetics at the University of Utah Health Sciences Center and Dr. Optiz in fact diagnosed Jeremy with "severe" FG syndrome but found Jeremy to actually be in excellent shape for his condition.

FG syndrome is an X-lined genetic syndrome first described in 1974 by Drs. John M. Optiz and Elizabeth G. Kaveggia as a multiple congential anomaly. While FG syndrome was originally diagnosed as rare since the mid 1990's clinical researchers have debated and studied the likelihood that it is more common that suggested. Some of the common features of the syndrome include poor muscle tone, chronic consitpation, hearing loss, vision problems, genital abnormatilies and respiratory problems. Some children have heart defects, agensis of the corpus callosum and/or imperforate anus. Other features sometimes include kidney probelms, a large head, broad thumbs, and big toes, characterstic fingerprint patterns, webbed fingers and toes, skeletal defects (occasionally craniosynostois and scollosis) and a sacral pit. AKA, Jeremy.

May 15, after videoing the champion child video with Dr. Cyrus a recevied a call from the Greenwood Genetics clinic who was researching FG syndrome and we particpated. They found that Jeremy has a "significant" change on his L1cam gene not reported nor see in any reports, it also showed that I had the same gene change on my L1cam gene so Jeremy inherited this from me. The L1cam gene is located off of the long arm of the X q 2 8 chromosone. Females have two X chromosones and males get the X from their mom. We currently follow with Dr. Michael Kayser at the Center for Genetic testing at St. Francis.

Wow this is quit a history, Jeremy today is a 9 year old happy boy, he wears AFO for leg/feet stability, back brace to stabilize scollosis. Jeremy started walking when he was 4 years old with a walker and when he was 5 1/2 he put down the walker and started to walk on his own. Jeremy attends Sapulpa public schools where he is mostly in the multi-needs class but is mainstreamed in with his typical peers, I continue to fight for more inclusion. Jeremy is mostly non-verbal but does vocalizie and there are days I think he will talk in sentences. When he entered Kindergarden he wouldn't sit nor particpaite in group time but he now will go to group time when requested. Jeremy has taught me over the years there is power in prayers, joy in situations, laughter and strength along with the true meaning of love. We don't get stronger by never enduring hard times it's the hard times that make or break us. When he walks up and puts his arms around me and gives me a kiss time will always stand still. He loves to play with his toys.

I am Jeremy's strongest advocate but our life long peditrician Dr. Scott Cyrus will always have a special place in my heart for what he's done for Jeremy, we love him. I serve as the Northeastern Regional coordinator for the Oklahoma Family Network. OFN is Oklahoma's parent to parent, I match families up with other families in a similar situation and help them find resources. I have been an active member of the St. Franics Family Advisory council for the past 4 years, we recently built a new facility. We advocate for system changes and family centered care. I serve on the Children's Miracle Network radio-thon as the family/physican liason where I recurit families to share their experience and coordiante with physicans. I speak to the new pediatric residents by telling Jeremy's story and speaking of the family point of view in having a child with special needs. I graduated in 2008 as a Oklahoma Partner in Policymaking, which is a course offered through the Oklahoma developmental disabilities council a 9 month leadership course to learn what people with developmental disabilites deal with. I do all of this because of what I endured with Jeremy and wanting to help other families with the resources and knowledge I have learned along the way. I love visiting with new families over the phone or in the hospital and I love being the bridge that connects them to the world. I am working on getting a Sibshop in our community started. I started talking to many families who had rare genetic syndromes or metabollic disorders and I realized how much we have in common, I talked to our Executive Director Joni Bruce and told her this is my vision and passion is to get a support group in our area. I talked to another mom who has a child with a rare genetic syndrome who is helping me with this and we will co-partner the support group.