Boyer Clinic Evaluation

Today was a mixed bag. We met with the Boyer Clinic (http://www.boyercc.org/) and were really impressed and once again, thankful, for the high-quality resource in our backyard. The only downer was knowing that Taylor needs their help - you never want to have your child positively assigned as "developmentally delayed." That aside, we thought it was a good step forward.

The Boyer Clinic rep, Kelvie, came to the house and assessed Taylor using the DAYC (Development Assessment of Young Children) test. She tested across five dimensions (cognitive, communication, social/emotional, physical development, and self-help). Each area consisted of about 20 "Can she..." questions that we answered as honestly as we could - such as "Can she recognize her name?" or "Can she sit with support?" We thought it would be more of an observation of Taylor, but David and I answered the questions - which was lucky, because although she felt better today, Taylor fell asleep about halfway through the appointment and snored loudly for the remainder. As we keep reminding ourselves, she is not the slightest bit phased by all of this. Once it was determined that she was a good candidate for the Boyer Clinic (i.e. needed help), our next step will be meeting with specialists (such as a physical therapist) that will do a more specific evaluation.

For the various areas, Taylor is roughly 4-5 months of age - developmentally. David expected this more than I did - while we knew she was behind, it's still a bit of a shock to see it on paper. For the various areas, here is her first grade card:

• cognitive - 4 months
• communication - 4 months
• social/emotional - 5 months
• physical development - 3 months
• self help/adaptive - 6 months

A bit overwhelming....but there were some positive nuggets:

• We were really impressed with the range of services the Boyer Clinic offers and the rep knew of 3 other children with Septo-Optic Dysplasia that the Boyer Clinic currently serves. This was so huge for us - Taylor's condition had seemed like this ominous, scary, strange thing and to know others in our city have this condition was strangely comforting. We're thankful that they have experience with this condition and she said a few of them were doing really well.
• One of the effects of Septo-Optic Dysplasia is low muscle tone, and Taylor's upper body is weak (i.e. pushing up on her arms while on her tummy, reaching for toys, etc). This brought her score down in a number of areas. For example, she couldn't do some tasks (reaching up to be picked up out of her crib - social/emotional; feeding herself food - self-help/adaptive; and many of the physical development items) because she doesn't have good use of her arms yet. As therapy helps her with this, we should see big improvements in many of the areas.
• Her vision is another unknown now that could be bringing down her scores in the cognitive/communication areas - because she had a known eye condition her first several months of life, impaired vision may have impacted her development.
• In any case, the Boyer Clinic has a range of services that we will take advantage of to help Taylor.

Our next step is to have our case reviewed (yet again) and have a special therapy plan recommended. We will have a family resource coordinator assigned (a new "umbrella" for multiple specialists). Taylor will likely receive physical therapy 2 times a week at our home, for about 30-60 minutes - depending on how much she can tolerate at her young age. We will learn the exercises to help her too. David and I are already envisioning her "training log" to ensure she gets in all of her "work-outs". She will also likely receive a special vision education specialist that will help her catch up in the areas that she is lagging that are likely associated with vision. This will augment our opthamologist, Dr. Cadera. And, the neurodevelopment division at Children's Hospital has a neurologist that spends one day a week at the Boyer Clinic and this will likely become our primary neurologist. We hope to know more specifics within the next 2 weeks.

Taylor will be able to take advantage of these services until she is 4 years old, or "graduates" from the program - which means, she catches up to her peers. She will likely have home therapy until she is old enough to take advantage of their facilities (located in the Montlake neighborhood near UW). They also have special pre-school classes that begin at 18 months. Over time, speech therapy or other services may be added to her program if needed. They also gave us good advice regarding support networks and resource centers (i.e. "how to talk to Taylor's siblings about her special needs") that we plan to look into.

Our Microsoft insurance covers any out-of-pocket costs and the program is largely subsidized by the state and private funding, such as the United Way. We are so thankful we have excellent resources to help Taylor, and will likely become big fans of the United Way.

All in all - a lot to digest, but we're thrilled this step is underway. We appreciate all of the thoughts and prayers - we continue to be so thankful for all of you.