I realize it has been over a week since we arrived at the Kennedy Krieger Institute but time flies these days. I wanted to give myself time to digest the conversation we had with Dr. Hoon about Adeline's development. Honestly, I haven't really had time to sit down and think, something I miss these days.
Adeline's visit was more than positive. When Dr. Hoon entered the room he saw Savannah sitting on my lap. He asked if it was Adeline with a quizzical look on his face. He proceeded to note my concerns about Adeline and why we were knocking on his door. I relayed her prematurity, many delays and processing issues as concisely as possible. While Dr. Hoon was combing over Adeline's NICU discharge summary, Adeline and Alex came strolling in, Adeline pushing a doll stroller. She was all smiles and very active. Dr. Hoon was immediately impressed and noted that she doesn't reflect her very precarious and rough start in life.
Dr. Hoon asked Adeline questions, performed a physical exam and watched her interact with all of us in the room. Before he could ask her to point to certain pictures on his cards, she was pointing and labeling herself. He found her social/emotional skills on target.
After spending an hour with us, Dr. Hoon addressed Adeline's therapeutic needs, medical needs and more than likely, educational needs. He didn't tell us anything we didn't already know.
Therapeutic Needs - He believes that we are supporting Adeline sufficiently. He warned against chasing down every alternative therapy that claims it has been show to improve the lives of children like Adeline. He was supportive of speech therapy on the horse. Dr. Hoon thought that my idea, of mainstreaming Adeline for two days of preschool and sending her to the IU (special needs preschool) two days a week, was realistic. Of course, we will have to see what happens during their transition when they turn three.
Medical Needs - Dr. Hoon made it clear that looking for developmental pediatricians to inform us any more than we already are, is a wasted effort. At this point, we should wait until Adeline is five and have her seen by neuropsychologist. At that time an MRI will be done, IQ testing and other standardized assessments in order to identify learning disabilities. This is when my concerns about processing will most likely be confirmed. Until then, we wait. We are going to have a traditional MRI done on Adeline just because Dr. Hoon specializes in reading MRI's of children that are born prematurity, with CP or with other neurological impairments. We aren't going to have his "specialized MRI" performed because it takes a day and a half to read and he is out of network with our insurance company. The thing about an MRI is that it doesn't change anything. The brain is structured and there is no re-structuring to be done. Dr. Hoon believes that if this MRI was done, it would identify areas of the brain that are structured differently. Because Adeline was still laying down brain tissue in the NICU, her neurological system is certainly at risk. Hopefully, after sending Dr. Hoon our standard MRI results, he will not see anything that stands out.
School Needs - I have always thought it safe to say that Adeline will have IEP's thorough her school years. Along with Dr. Hoon, I am hopeful that she will mainstream with support. No one has given reason to think she will not. Learning will most likely be difficult and frustrating to Adeline. Her processing and sensory needs will have to be met which is easier said than done. I have worked in various schools and know all too well that IEP's sit in a file and are often neglected except when giving tests. I don't look forward to the inevitable uphill battle with the public school system. That being said, I have high hopes for Adeline and her schooling.
Dr. Hoon concluded that Adeline has many delays. Her cognitive skills are low but may eventually fall in the variable range of "normal" cognition. Only time will tell. In order to support Adeline as she travels a very long and uphill road, Dr. Hoon left us with this quote:
Childhood is not a race, but a journey.
