We have begun the process if plugging Marley into all the medical and therapy services that Seattle has to offer. Our first appointment was with the Boyer Clinic where she will receive the majority of her early intervention (EI) therapy. We met with a nurse who did a brief assessment of Marley's delays and quickly confirmed that she eligible for all services. Of course, we didn't doubt that for a minute. Here in Washington, EI first bills your insurance (if you have any) and then the rest of the therapy is covered by state and federal grants. So I will have to pay a copay every time the therapist comes to our house and of course I have to meet a $2000 deductible before insurance will cover the sessions. Ouch. I love how companies are choosing high deductible health care plans for their employees to save them on the monthly cost of premiums. That works great for people who are healthy and only have to go to the doctor for preventative care... but that does not include Marley.
Anyway, I digress. A family resource coordinator contacted me to tell me that I will be contacted soon to schedule a time for her and an occupational therapist to come to our home to assess Marley. I am hoping this happens sooner than later.
Yesterday we met our new pediatrician, Dr. McPhillips. She was recommended to us by our fabulous neurologist back down in SF. As our main doctor, she will be responsible for helping us coordinate care with specialists and make referrals. The list is as follows: Orthopedist, Neurologist, Ophthalmologist, Nutrition, Genetics and Endocrinologist. She mentioned that she would connect us with a metabolic/genetics specialist who may help us figure out Marley's syndrome and the implications for her life long term. She weighed and measured Marley and she is now 15 lbs 10 ozs and 24 inches long. She is height/weight proportional but is concerned that she may be dropping off in length. One of her thoughts was growth hormones which is something that we can discuss with an endocrinologist.
Today we trekked a whole 2 blocks to Seattle Children's Hospital for a cardio echo (ultrasound of the heart), a chest x-ray, a meeting with a cardiologist and a visit with an audiologist. Wow. Seattle Children's is AMAZING. Nothing like decrepit UCSF. It is so clean, organized, efficient...I could go on. Marley was a doll during the echo and x-ray. The cardiologist, Dr. Conwell explained in detail his findings. He believes that she has stenosis in both of her pulmonary arteries and has a moderate coarctation of her aorta. He recommends a cardiac cath to investigate further and possibly dilate the arteries with a balloon. He is going to chat with one of the cath doctors and call me with a decision. He said most likely, the catherization would take place in the next couple of months. She'll be put under general anesthesia and need to spend the night. I am not surprised by his findings. At this point I'm just ready to get her heart issues corrected as soon as possible. He also recommended that she be on monthly injections of Synargis to prevent RSV which is more common in babies with heart issues.
Lastly, we visited audiology today to have her new ear molds fitted and to establish care. We attempted a hearing test but Marley is not consistently turning to sounds. We will try again in a few months when she needs new ear molds or we may have to have her tested during light sedation. The audiologist was very kind and helpful and gave me a list of centers that provide EI services for hearing impairment.
Whew! I feel like I got a lot accomplished. I'm starting work on Monday and Jason starts his new job the week after that. We've hired a full time nanny to care for Marley and she will also bring her 2 year old daughter to our house. I think that having another young child around will be really good for Marley. I hope that her daughter will be able to teach Marley a few things and help Marley develop her social skills. Already at their first meeting, Zoe took away the toy that Marley was playing with (in true 2 year old form) and Marley began to cry. I loved every minute of it because it showed me a side of Marley's development that I had never seen before- a small developmental milestone happened before my eyes all thanks to a little, feisty 2 year old.