The diagnosis we received for Elijah was Osteogenesis Imperfecta Type III. OI has been classified by type according to a system based on mode of inheritance, clinical picture, and information from x-rays. Although the features vary greatly from person to person, OI Type III is the most severe type among children who survive the neonatal period.
We were told that after the first 3 months when you have your first baby that time would fly. This is a lie. Well in our case anyway. We experienced a lot of the same things everyone else does when having a newborn. It's just that we had the added responsibility of his delicate condition and managing his healthcare. Deciphering all the medical stuff really was quite overwhelming. We received a call from the school district at 4 weeks. Yes, you heard me right, dealing with the school district at less than 2 months old. Who knew! Not me, so I'm glad they reached out to us. There has been no rest on the roller coaster of medical care since he's been born.
Here is Elijah's list of Dr.'s and other professionals:
Pediatrician (a given)
Cardiologist (heart)
Audiologist (hearing)
ENT (ears, nose and throat)
Geneticist (For diagnosis, I don't really know what else)
Pulmonary Dr (Breathing, Lungs)
Endocrinologist (she looks over his IV treatment so she's important)
Neuro Surgeon (head/brain surgeon)
General Surgeon
Orthopedic Surgeon A
Orthopedic Surgeon B
Opthamologist (Eyes)
Occupational Therapist
Physical Therapist A (on land)
Physical Therapist B (in water)
Speech Therapist
Infant Stimulation Teacher
School District Audiologist
We also have to coordinate with his insurance, Regional Center, California Children Services and the school district. We currently have 7 appointments a week (2 Physical Therapy, 2 Occupational Therapy, 2 Aqua Therapy and a Infant Stimulation session) plus any follow up appointments from the list above. Some are scheduled together to make the most of the trips out of the house.
*Whew* ....so now you know why I haven't had time to update this blog.
There is much more to bring you up to date but I literally have to pack to head out to Omaha, Nebraska. We are taking Elijah to see some rock star doctors out there. I will say though, that Elijah is doing extremely well and is a very happy little man.
