Update 5/4/2008 from CarePages.com

Happy Late 30TH Birthday to my sister in law Jen. You are the greatest and we love you! Sorry we had to miss your party. It's late and I need to get to bed but first I wanted to say THANK YOU! I feel like I can never find the right words to express everything that has been done for our family. I don't think there are enough words to convey how much we really appreciate all you have done. The big things, the little things and all the things in between is what keeps our family going. You help keep our chins up and our feet moving forward. You help us take the next step on this unfamiliar and unplanned journey. Thank you from the bottom of our hearts. Your support means more than you will ever know. I have received alot of emails & phone calls about Emma. Since we all know how quick I am to respond to both, lol I thought I'd just post here. Emma started getting sick from her treatment on Thursday evening. Thursday night was awful. She was so horribly sick. Jeff and I either forgot how bad it used to be or Emma was sicker than she has ever been from the IVIG. But thanks to help from the kids amazing peds office we changed some meds around and it helped. Emma slept for 16 hours only waking when we gave her meds. By Saturday afternoon she was feeling much better. We were all feeling cooped up so we went out for a bit. Emma made it a few hours before getting exhausted. She did manage to wake up and get in a bit of outdoor play time with Isabel and Lexi, before bedtime. Tomorrow we are hoping to go to the Birthday party for our special friend Connor. I could tell you about Connor but his mom says it best. This is what she wrote The happiest day of our life turned into the worst....Around Midnight the next morning I was holding Connor and he wouldnt stop crying and he was sweating and his lips where blue so I called the nurse in, she told me it was probably his lungs since he was born by c-section, she took him and I dozed off from the drugs, a couple hours later I was told to call my family because Connor was very sick and he probably wouldn't be here much longer....I called my parents and Tim and his mom who was staying with us...They quickly came up and we met in the NICU...a cardiologist was there and briefly told us what was going on but to be honest with you I don't even remember him talking, a chaplin was brought down and he was baptized before he left for Childrens. Even though I just had a c-section my doctor let me go the next morning. When I got to Childrens I learned that Connor was born with half a heart. They also did an MRI and it showed that he also suffered a stroke most likely while they where trying to figure out what was wrong with him. We had to decide if we wanted him to get a heart transplant or a series of 3 surgeries or just bring him home with us. After we found out he had a stroke the chances where not very good for him, he was a very sick little boy and we would not know his quality of life until he got older. The recomendation was to take him home and let him die, I would not accept that, even my whole family was telling me that was best for him. The night before we where to tell his surgeon what we wanted to do I layed in bed and prayed, I asked god if Connor was meant to be here then I would wake up and know that. When I woke up I knew I had to fight, just give him a chance and if he didnt make it through the first surgery then he wasn't meant to be here. Connor had his first open heart surgery on May 15, 2003 and that was the day he was supposed to be born so we took that as a sign that he was going to be ok and 5 years later he is doing great. He has had 4 open heart surgeries and recently had has feeding tube removed, He now has Epilepsy which was more than likely caused by his stroke. He is such a wonderful boy and, he lights up my life every single day. I've been asked many times if I could take away his heart defect would I? At first I would always say no, now I say yes, I would give him a normal life because I know this world is cruel and even though he probably won't remember the surgeries he has had I wouldnt wish that on my worst enemy, no child should have to go through that ever. I know him being born has made him who he is, strong and determined to be a normal kid but If I had 1 wish it would be to give him a perfect heart so I don't wake up every morning wondering if this is my last day with him. The recently saw that the oldest person with HLHS is 30 years old compared only in the 20's....knowing this gives me hope. Sunday we are having a HUGE party for Connor, statisitics say only 70% of kids with HLHS live to age 5 so I told connor if he made it to 5 we where going to have a huge party for him. He loves to golf so we are having his party at a Putt-putt place here in millard. Thank you all who have prayed for Connor over the years and who still do. It truely means the world to us. Happy Birthday Connor! Love Shelli