Change the Outcome

Thats the slogan of Cincinnati Childrens Hospital. Change the Outcome. And it is what we are continually hoping and striving for... a change in the outcome.

We headed back up to Cincinnati on Monday for Brooklyn to see her neurologist and developmental pediatrician on Tuesday. Since we have spent 12 days of the last month in the hospital, they wanted to see her since they are the managers of her care. I had high hopes that they would find a quick fix that had been overlooked, but I'm afraid that wasn't the answer we received.

However, we prayed for answers, and we did get some.

Brooklyn's muscle tone was noted to be significantly reduced, unfortunately most likely from the excessive seizures she suffered that sent her to the hospital the first time. Sigh. This causes her to have difficulty walking well and also difficulty swallowing.

She also was noted to have multiple sensory processing disorders. This may have been present all along and just now becoming apparent because of her age, and it may have been exacerbated from the seizures.

The first sensory disorder is oral defensiveness. It is characterized by a preference for soft or pureed foods, gagging with a change in textures, difficulty chewing or swallowing, frequent choking, and resistance to trying new foods. Obviously, Brooklyn didn't act this way previously, but these disorders commonly associated with special-needs children often become prevalent around 18 months of age. Also, losing tone and having issues swallowing doesn't help matters.

There is no quick fix for this, but it will involve feeding therapy, appointments with a nutritionist, and GI specialist, and occupational therapy. It is a behavioral thing, but not something that can really be helped. The change in textures and flavors legitmately feels extremely irritating to her because of her hypersensitivity in this way. She will also continue with pediasure 3 times per day.

The second sensory disorder is proprioceptive dysfunction. This is one we have seen in Brooklyn from birth. It is characterized by seeking out jumping, bumping, and crashing activities, stomping feet when walking, enjoying bearhugs, roughhousing, tackling/wrestling games, grinding teeth throughout the day, dragging objects, jumping off furniture, climbing, high pain tolerance, etc. I've often said that Brooklyn should've been a boy because she is so rough, so this one fit perfectly. My eyes got huge when they mentioned the symptoms because I've asked multiple medical professionals why Brookie always grinds her teeth so hard. This couldn't have been more descriptive of our girl.

There is no quick fix for this either, but PT and OT will help with the process.

The answers aren't easy to hear, and the road will be long and filled with lots of hard work, but Brooklyn has been a fighter from day one. If I was half as tough as she is, I would have it made. I know that she can do it, and hopefully with the help of her pediatrician, Cincinnati, and therapists, we can change the outcome.