I posted this yesterday and it struck me that “normal” people don’t know what half of this stuff means! So I’ve provided some explanations below. I hope it helps you understand K a little bit better.
K had lesions in her brain as a toddler. Basically, a lesion is part of the brain that looks abnormal on CT or MRI. Thankfully, K’s lesions resolved at some point and her more recent scans are clear from these.
K experiences migraines that are very unlike what you typically think of as a migraine. In fact, she may not even have a headache! K can experience involuntary movements as part of these episodes, as well as dizziness, decreased consciousness, nausea, vomiting, light sensitivity, hot flashes, and a host of other things that you would not expect from a “headache” phenomenon.
This just mean K’s eye muscles are weak.
Rapidly progressing myopia:
K is near-sighted and her vision is getting worse very quickly.
K is profoundly deaf in her left ear, and it has been progressive loss. When we initially found out she had hearing loss, it was only moderate and has progressed to profound. We hope that it will not progress to affecting her right ear and she is reassessed yearly.
When she is asleep, sometimes her brain forgets to tell her body to breathe.
This one is easy. Her eyes are very sensitive to light, even when she is not having a migraine.
K was recently diagnosed with this (and I’ll write more in a later post about this), but it basically means that her autonomic nervous system (which is the part of the nervous system to control things like breathing, heartbeat, digestion) is significantly malfunctioning. When the part of your body that controls tasks that should be running smoothly on autopilot malfunctions, it causes a whole host of problems.
K forgets to breathe sometimes and it leads to this weird breathing pattern. We have had a difficult time getting to the bottom of this one. She will breathe eventually, but there are times when she just forgets…not long enough for her to pass out, but definitely longer than normal. If you have spent much time with us, you’ve probably heard one or all of us remind her to breathe at some point.
Needs supplemental O2:
K sleeps with oxygen on every night because of the central apnea, and sometimes she requires it during the day for various reasons…especially when she is fighting an infection.
Another “easy” one. Everyone knows about asthma!
K’s stomach does not function well and sometimes basically stops working altogether. If she eats a lot of solid food, it can cause pain and bloating because her stomach can’t process it efficiently. Sometimes we have to drain things back out. When she is sick and her energy reserves are being used up in other ways, her stomach frequently “powers down” to compensate.
K does not eat a wide variety of foods and she never has. Part of this is related to the next item on the list and part of it is related to her poorly functioning stomach and yet another part of it is tied to the fact that she doesn’t feel appropriately hungry like most people. She relies heavily on her tube to support her nutritionally and to ensure she gets sufficient fluids every day. The food she takes by mouth is for pleasure rather than survival. When her stomach stops working, we are able to bypass it with her J tube.
Sensory processing disorder:
K doesn’t experience all parts of the world like we do. Simple things, like certain types of plastic are unbearably irritating to her. Certain sounds make her dry-heave. Textures can make her vomit. The sight of something like slime would definitely equal instant puking! Part of this definitely compounds her complex relationship to food.
K’s body has difficulty with utilizing proper forms of energy stores. Her body jumps to breaking down fats for energy (producing high levels of ketones) when there is not a steady, significant input of sugar or when she is sick and her energy requirements are much higher. Shortly after becoming ketotic, her glucose will begin to drop which can quickly become dangerous.
It took us a long time to figure this one out; what we thought was nighttime asthma was really reflux that was untreated for too long. Food and acid travel upwards from her stomach, often all the way to her mouth. This was much better for a while, but has become a significant issue again recently. Obviously when food = pain for a little one, it also impacts their relationship with food.
Like her esophagus and her stomach, K’s intestines don’t work quite right. We have to carefully medically manage this issue or things get bad quickly.
K’s muscles tire much more easily than most people. Voluntary muscles and otherwise.
Fine motor weakness:
K’s hands are weaker than those of her peers. Things like handwriting are difficult as a result.
Needs wheelchair for distances:
K fatigues easily, so she uses a chair for distances. It preserves her ability to be active once we arrive at a destination, and we’re never really sure when she will peter out, so we use it as a protective measure sometimes. If we are halfway through a museum when she can’t walk anymore, she’s a wee bit too big for me to carry the rest of the way these days. Sometimes she needs it to keep her safe when her dysautonomia or migraines are an issues.
Gross motor delays/mild balance issues:
K’s coordination, strength, and balance are that of a much younger child, though she’s made great strides through years of therapy (and she’s about to restart) and has good function overall.