3 years ago
Wednesday, July 11, 2007
First for the happy news...
Della turned 6 months last Saturday and her first tooth erupted (isn't that a lovely word) yesterday.
Onto the big stuff...
We met with the Dr. today and although we still don't know exactly what is going on, we have an idea and we are moving in the right direction. He still thinks it is a metabolic disorder and possibly a mitochondrial disease (which can cause a metabolic disorder). Unfortunately there is no cure for either however some metabolic disorders can be managed whereas a mitochondrial disease is degenerative and eventually will take the life of anyone who has it. Obviously we are hoping it isn't that.
Anyway, we left the Dr. with a renewed sense of optimism. The Dr. is hoping that we will be able to give Della the enzyme she is missing and manage the metabolic disorder with diet. She is very behind developmentally and with a few years of intense speech, occupational, and physical therapy, she could be mainstreamed into school and live a relatively normal life. There is also the possibility of her having mild to severe mental retardation as well as physical handicaps. It could also fall anywhere in between. There are still many more tests to run including more blood work, a full genetic makeup,MRI, chromosomal profile, and extensive family histories done on both sides (Relatives, expect phone calls from us soon and prepare to air your genetic dirty laundry. Don't worry, no blood required). So we meet with the Metabolic Team at CHOC on the 26th of this month and they will be able to work with us to pinpoint Della's specific disorder. Tomorrow have an appointment with a developmental specialist and he will evaluate her and help us create an eating plan (she hasn't started solids because she can't hold up her head) as well as some things we can do to further her physical and mental development. We also have an appointment with a geneticist and an MRI on August 7th. It going to be a busy couple of weeks!
In the meantime, Della is having tubes put in her ears on Friday to help alleviate her chronic ear infections. She is almost completely deaf in her left ear with severe hearing loss in her right ear due to fluid that has solidified in her eardrum. We are anxious to see how this will affect her development as well as her Equal Librium.
So that is all we know for now. We appreciate all who have prayed for Della and for those who participated in the fast on Sunday. We really feel at peace with her future even though we have no idea what that will look like. Even before we knew of her illness, many have remarked at what a sweet, calm spirit she has. There has been something special about her from the very beginning and I am not sure if this is due to her being sick, or if this is simply the way she came. Family and friends often joke that they have never heard her cry and really, it isn't often that she does. Della is the most loving baby. When you pick her up, her entire body relaxes and she snuggles right into you. We have been so blessed to have Della in our lives and I know that she was sent to teach us many things about endurance, unconditional love, and the sweet innocence that only a baby possesses. My sister-in-law Amy has been a wonderful mentor to me during all of this. Her son Tyler is autistic and she has had so many words of wisdom from a parent who in a way, is mourning the loss of the future they had hoped for their child. She told me something that has stayed with me through the past week. She pointed out that although her son may never go to "regular" school, or go on dates, or even be able to say "I love you", her son is loved by others in a very special way. This couldn't be more true. We all hold a special place in our hearts for Tyler and his sweet smile and that's the only way that I can describe it. I think the same is true for Della.
Posted by Caitlin at 7:24 PM