Unpacking HIE: The Pieces that Make Up Hudsyn’s Puzzle

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The other day I was rummaging through some paperwork from the first year after Miss H came into our lives. I ran across the piece of paper I hated for a really long time. It was the paper that listed every diagnosis Hudsyn was given after birth. It’s not the longest list I’ve seen, but at the time it crushed us. It was overwhelming and to most people outside of our world looked as if she’d die tomorrow. So we didn’t talk about it much.

It took a long time, but eventually…we learned to think about this “list” in a different way. We know that God doesn’t create anything less than whole, and so we don’t believe she is any one of these labels and see her each day as perfect and amazing. I also believe that because we approach her care this way, she has a higher quality of life and is generally happier. Our attitude and energy is directly connected to how she reacts to each situation.

No matter what her diagnoses, Miss H is a beautiful soul and we make every effort to describe her as such. We don’t see what’s “wrong” with her…we see our child just like any parent would–with all her quirks, personality, and light. We do this so much that we’ve never really publicized her medical documentation like this. So please see these only for what they are…medical documentation that allow us to provide better care for her on a day-to-day basis.

hieHudsyn’s Diagnoses
She sees a primary care physician, neurologist and orthopedic surgeon regularly. Her team of therapists includes physical, occupational, vision, and speech. Hudsyn has perinatal HIE, Grade II-III (Hypoxic Ischemic Encephalopathy – oxygen deprivation at birth). Over the course of a few years, following her birth, our little girl is diagnosed with the following:

Spastic Quadriplegic Cerebral Palsy
Mixed tone-spastic extensor tone and dystonia in the extremities and hypotonia throughout the trunk and pelvis.

Global Developmental Delay, including impaired mobility

Structural Focal Epilepsy
She presented with seizures a few hours after she was born and although we had them under control when she was discharged from the NICU, they started up again with a vengeance when she was 3 months old. They have continued on and off since then.

Because of her seizures, she’s on the Ketogenic Diet (We received 40-50% seizure control from this within the first year. We’ve talked a lot about how the Keto diet has helped Miss H with her seizures.)

Her seizure medication has included Phenobarbital, Zonegran, Clonazepam, Topamax and Keppra – none of which worked to control her original 40-50 seizures per day). She doesn’t take any anti-seizure medication at the moment. She was weaned off all drugs by February 2014. How’d we do it? Seizures dropped significantly two months after her first stem cell treatment and disappeared completely after the second round of stem cells in 2013. (Here’s a summary of our journey with stem cell therapy.)

Cortical Visual Impairment
Hudsyn CAN see, but how her brain is “seeing” things and how her eyes are truly taking in information are two totally different things. CVI is measured on a wide range and can improve with therapy, but is rarely ever “fixed.” With stem cells, her CVI (originally a 1-2 on a scale of 10) is now a 5+. She identifies toys and objects…and can identify people from time to time. In addition, she sees more peripherally than straight on…which is why she moves her head from side to side. She sees better out of the sides of her eyes than out of the front. Her color perception and recognition have also improved with maturity and constant therapy.

Microcephaly
This literally means “small head.” Her head circumference is smaller than normal. It’s usually associated with neurodevelopmental disorders like HIE, along with many others.

IMG_5780Hip Dysplasia
Both of her hip sockets were formed incorrectly because she never walked. As a result, the ball of her leg bone is out of socket permanently, a common problem for kids with Cerebral Palsy. Her legs and hips are tight and difficult to move, which is a problem like when we tried hippotherapy. As time goes on, we will have to manage her pain with this diagnosis and why we see an orthopedic surgeon regularly for follow ups. Right now, we work on weight bearing activities like putting her in a stander; doing PT on all fours; pushing off the side of the pool during swim therapy, etc. This will always be a challenge for Miss H.

Gastroesophageal reflux disease (GERD)
We give her 4mls of Omeprazole twice a day to help with her GERD and consistent vomiting. This is given through her G-tube.

Gastronomy tube dependent nutrition
Hudsyn has a plastic tube that is located on the outside of her belly and goes directly into her stomach. We are able to feed her this way and not sacrifice her growth and nutrition each day simply because she’s unable to take the volume she needs by mouth. Because of her brain injury, she’s also at risk for constant aspiration. The G-tube allows us to easily feed and medicate her quickly.

Here’s a quick video of how we give her a feed with her G-tube.

As you can see, there’s often a lot to unpack and manage with an HIE diagnosis. However, she didn’t get all of this list at once. Many of them came in the first year and a few in the second year. But we also know that it’s likely not going to be a static list. It will change and possibly grow longer as she ages. Brains that have had the damage she’s sustained have bodies that don’t “age” well.

Because we’ve had such success with the stem cell treatment in Panama, we plan to go back again this fall for her 3rd round. We’re constantly grateful for all who have helped us get there and back – both in prayers and in donations.

If you’d like to participate in this year’s t-shirt fundraiser, please Buy a Shirt. Thank you in advance for your love, support and kindness.shirt

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