Severe Combined Immunodeficiency

Many of you know by now that Scarlet had a bone marrow transplant on Sept 18th because she was born with Severe Combined Immunodeficiency (SCID-ADA). We've been at Seattle Children's Hospital since May and will hopefully be able to leave the hospital soon and move into transplant housing nearby for the remainder of time until we can go home. You have to stay 100 days post transplant either in the hospital or at Ronald McDonald house. She's had a few complications along the way and has delayed us getting out of the hospital. I'm excited that she is doing so well and life seems a little more hopeful. It is still too early to say just what her life is going to be like post transplant but we know that it would have been short without it. These pictures were taken sometime in May or June. She had to have a Nasal Gastrointestinal tube placed because she had a type of pneumonia that made her tachypneac. Her respirations were so high they were worried she would aspirate milk into her lungs and she would tire so fast that she couldn't eat enough to gain weight. Poor baby!