a not so good day

Today was not a great day for me Kimball would have been 4 months old today. I don't really know if told anyone what his actuall heart defect was so here it is pulmonary atresia with intact ventricular septum, Severly Hypoplastic Pulmonary valve, Coronary Sinusoid, flow reversal of the proximal right and left coronary arteries, mildly lilated right atrium, moderately hypoplastic right ventricle, moderate right ventricular hypertrophy, hypoplastic tricuspid valve, moderate secundum atrial septal defect with bidirectional flow and moderate size patent ductus arteriosus with prominent left to right flow. He also had complex rearrangements involving chromosomes 4 and 22. The deletion on chromosome 4 is consistent with Wolf-Hirschhorn syndrome. The deletion on of chromosome 22 has not been previouslly described in medical literature so less information is available. There was a translocation of chromosome 22q material to chromosome 4p with a susequent adjacent deletion of chromosome 22. He was De Novo which means Eric and I are not carriers. All of these genetic complications played a roll in Kimball's growth restriction and possable his heart defect.

Updates

We haven't blogged in a while and every one probably thinks we fell from the face of the earth. We are still here and doing good. We have so much to be thankful for this time of year and I don't even know where to start. I do know we are so very thankful for all the prayers we have received and are still receiving. We needed them and still do. Each day I wake up get ready for the day and never know what it will bring. I know that as all of the holidays roll around I find myself staying very busy. I try not to just sit, because I find myself getting up set about Kimball's passing. tomorrow will have been 4 months since he was born and it still seems like just yesterday. We have had a few bad weeks Alissa got a virus and ran a low grade fever for 8 days straight and then it spiked and went to 103.8 very scary. Then a few days after that she broke out in a bad rash all over her body. The Dr. said children her age sometimes have a reaction to the virus when it stays for so long and brake out. She was so miserable. I'm glad she is finally starting to feel better and look better. I know that you are all busy but we would like for you to pray for some very good friends of ours as this holiday season will be had for them as well. They are getting ready to have a beautiful baby boy next month and they know that his life will be very short. He has a rear defect called anacephaly's and when he is born he will pass away they don't know how long he will live. Anacephaly is when the baby is born with only a brain stem and not the brain. So please remember them in your thoughts and prays this holiday season. No word can ever be enough. I feel for them. I don't even know what to say. We love them and wish they did not have to go through this. We just want them to know they are not alone.