An example of the brain from a CT scan (not Isa’s)
I know that it is a weird kind of “anniversary” to mark, but it was one year ago today that a CT scan revealed that our daughter Isabel had experienced a significant brain injury from a prenatal stroke. The past year has been full of many subsequent discoveries - about Isa, her special needs, about the special needs world in general, about ourselves as a family, and about God. What follows is a bit of a recap.

Isabel last June

Isabel today
What we know today about Isabel.

• She is one tough kid - What the doctors can best assess is that at around the 8th month of pregnancy, Isabel probably suffered a prenatal stroke, interrupting the development of her brain… and she has lived to tell about it. With all of the symptoms and challenges that Isa faces, it is a miracle that God preserved her life in the womb.

• She doesn’t have hydrocephelus - One of the initial concerns following the CT scan was that Isa might have hydrocephalus, a condition where the fluid that surrounds the brain doesn’t drain properly, putting pressure on the brain. It is often treated with a shunt, which requires surgery. That Isabel hasn’t need any surgical treatment for her brain injury is a precious grace. Having had several surgeries as a kid, I know there not fun. I can’t imagine how this past year would have been different if we’d had to deal with that.

She does have an unusual variant of an even more rare diagnosis known as hydronencephaly. If you read the reports (just read here or here) on hydronencephaly, its generally pretty grim. Most children don’t live past 1 year. That Isa’s situation goes against the odds of a rare condition only confirms that she is a unique & very special child (as if we weren’t already convinced.)

• It has been medically diagnosed and confirmed that she is beautiful girl - “Wow, she is beautiful.” was the first thing the neurologist diagnosed, I mean, said when she saw Isabel for the first time. She later shared with us that based only on the CT scan, she expected to encounter a much different child, with more severe symptoms - like deformity, problems eating/swallowing, non-responsiveness, etc. Instead, she saw Isa laughing, responding to our touch and to our voice, looking around, kicking her legs - and with a gorgeous smile.

To the neurologist, Isa’s beauty is significant because of the absence of any physical deformity or the sometimes twisted musculature that accompanies a diagnosis of cerebral palsy. As it turns out, Isa has a more mild cerebral palsy, since cerebral palsy is a larger, “umbrella” term that signifies brain injury, with many different symptoms that apply differently to different cases. For Isabel, there is still a lot that we don’t know (and probably won’t know for a while) about what her capacity & potential disability will be. Right now, she is significantly delayed in her development in areas like holding up her head, fluctuating muscle tone in her arms (ie. not being able to use her arms in any functional capacity), some digestion & constipation problems, visual impairment, very little language skills and sensory integration issues (see below for more).

• Her eyes are full of life - Even if its still unclear what she sees. Officially, she is partially sighted or visually impaired, but not blind. The problem is not with her eyes, but with the processing ‘center’ in her brain that receives the visual signals, but doesn’t always know how to process them. She receives vision therapy twice a week through the Junior Blind of America (we love her ‘teacher,’ Lupe). From this, we know that she sees different colors (especially loves red), knows the difference between bright light, normal & dim light & darkness (say “bye, bye light.”), and seemingly shows more peripheral vision than direct vision. But above all, she has beautiful eyes that are always probing the world around her, trying to figure things out.

• Deep pressure equals big hugs & lots of cuddling - Even before we had discovered Isa’s brain injury, we were becoming aware of her sensory integration problems, particularly in the area of touch (also see The Out of Sync Child for more info.) Isabel has a form of tactile defensiveness, where she is sensitive to touch. For her, she really likes deep pressure, as opposed to light or wispy touch, which means a lot of hugging, strong slaps on the back, and deep squeezes.

It also affects her sleep, since she need pressure in order to relax. She used to only be able to sleep in our arms (because we could squeeze her), though now after she falls asleep in our arms we can place her to sleep or nap in her crib. But any night wakings require the same process of picking her up in order to get her to fall asleep again. Combined with her motor skill delays and having little control of her body, getting to sleep can be a bit of a process. Our nightly prayer is for God to “give sleep to those he loves” (ie. Isa and her parents), and our morning praise resounds wildly when she sleeps through the night.

• There are no guarantees about what milestones she’ll reach - As much as the uncertainty produces its own set of challenges, we’ve been grateful that Isabel’s doctors haven’t tried to be false prophets in speaking about or guaranteeing things which they don’t know for sure. We’re learning how to live in the fullness of each day - with its questions, heartbreak, challenges and different joys, even as we also learn to pray in faith for miraculous healing. The image of hope that motivates our prayers and all of the hard work in therapy, is being able to dance with Isabel at her quincenera. May it be so.

• Her best days are yet to come - Even if some of them are really difficult, we know that God has preserved her life from the womb in order to accomplish great things in her. What they are is yet to be seen. But we know they are coming.

That’s a brief look at what we know now with Isabel. We continue to covet your prayers for her healing.

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