On September 26th 2011 our Spirit Boy Casper Blaise was born at 26 weeks. He weighed only 1lb 8oz and had the cord wrapped twice around his neck and also had a very severe infection. Doctors noted it was already a miracle that he survived his birth. During his 124 day stay in the NICU he experienced many ups and downs, much of it common with micro preemies but a few surprises were in store. Casper fought jaundice, blood infection, endured 6 blood transfusions, feeding tubes, PIC lines and more. A couple weeks into his stay he went through his first bought of NEC and after successfully fighting it he then endured another bought of NEC. The second bought of NEC was more severe and at one point we almost lost him. He has a severe animal protein allergy which ate trough a portion of his intestine and he was started on NEOCATE immediately.
Casper currently receives SLP, OT, PT & sees a dietician weekly. He is on 2 meds for his severe reflux and his Neocate is at the highest concentration it can be because after his 1 month stay in the PICU in the summer for lack of growth we learned his body does not process fat properly.
Casper is believed to have cerebral palsy and is just waiting on an MRI in June to confirm his diagnosis. He is at a 6 month level mentally and a 7 month level physically.
***In March through genetic testing we received the news that Casper has an extremely rare fatal recessive genetic disorder called Fanconi Anemia. http://www.fanconi.org/. We are still processing the news and coming up with a care plan for him but we continue to be hopeful for his future and are extremely grateful we have him in our lives.
In May with the help of his OT’s, PT’s and nutritionist we decided to go ahead with GTube placement surgery for Casper. His oral aversion is proving to be extremely severe and difficult to deal with that coupled with his severe reflux has made moving to solid foods nearly impossible. He has lost over 2 lbs in just over a month and is now 13.9bs at almost 22 months old. He just had surgery for placement of a G-Tube June 4th 2013 and has been back in the hospital since for almost 3 weeks because of continued GI issues and struggles to grow.