Kaden right after Evan died 3 years ago...
"Life is not about getting through the storm, it is learning to dance in the rain."
I think this quote expresses what it is like to raise a child with a chronic health condition. We don't think in terms of "when" he gets better, but we live with the ups and downs of having a lifelong genetic condition.
Tomorrow, Elijah has a bone marrow biopsy, dental work (he has very little enamel on his teeth due to his SDS), an MRI and lots of bloodwork. He will go under anesthesia for several hours to get all the procedures done. The MRI was ordered to rule out Neurofibromitosis--which he has some symptoms of.
The bone marrow biopsy is an annual test that will tell us what the next year holds for him. It will tell us if there have been any changes on the cellular level that would indicate pre-leukemia. It will also tell us the cellularity rate as well. A normal child his age would have about 90% cellularity. Elijah's is at about 30%. If there is a significant decrease in this number, that would mean we may need to look at a bone marrow transplant.
So, we are learning to dance in the rain. Please pray for our little guy..he has lots of anxiety about going to the doctor. Pray for peace and positive results..
I think this quote expresses what it is like to raise a child with a chronic health condition. We don't think in terms of "when" he gets better, but we live with the ups and downs of having a lifelong genetic condition.
Tomorrow, Elijah has a bone marrow biopsy, dental work (he has very little enamel on his teeth due to his SDS), an MRI and lots of bloodwork. He will go under anesthesia for several hours to get all the procedures done. The MRI was ordered to rule out Neurofibromitosis--which he has some symptoms of.
The bone marrow biopsy is an annual test that will tell us what the next year holds for him. It will tell us if there have been any changes on the cellular level that would indicate pre-leukemia. It will also tell us the cellularity rate as well. A normal child his age would have about 90% cellularity. Elijah's is at about 30%. If there is a significant decrease in this number, that would mean we may need to look at a bone marrow transplant.
So, we are learning to dance in the rain. Please pray for our little guy..he has lots of anxiety about going to the doctor. Pray for peace and positive results..
