Shortly after my last post, Renny started to become more like her old self. In fact, it really was after her checkup with neurology, where she was making us out to be liars that she seemed to get better. So, we had a good almost-full week where she was pretty much back to normal. The sleep-deprived EEG went okay. T woke her up at 3 a.m. and stayed up with her until 6 a.m., and then I took over until 9:00. The appointment was at 10:00. She had to have 25 electrodes “glued” to her head, and she did not like that AT ALL. After 20 minutes or so of that, we had to get her to go to asleep, but she was so worked up it took at least 15 minutes or so to calm her down, and she did finally fall asleep in my arms. After 15 minutes of sleep time, we had to wake her up again. A bright light did some various flashing for a few minutes, and then all of the electrodes were taken off with some latex-free lubricant stuff, and then we washed her hair quickly and left. The whole appointment took about an hour and a half; we were home by noon and she slept the whole afternoon. We will learn the results from the test on September 10th.
So, that was last Wednesday. Then Saturday comes, and Renny wakes up with puffy reddish eyes. I think perhaps it’s pink eye. No big deal. But then throughout the day, the puffiness and redness gets worse…and we see some rashes here and there on her arms, leg, and a little on her face. T does some researching and finds that an allergy to her anti-seizure medicine, phenylbarbital, can show up even up to two weeks after first administered. We call nurse advisory, who says all of the signs point to an allergy, who talks to the neurologist on call, who says to take her off the phenylbarb and makes a new prescription for a drug called keppra. This sounded good to us, because we also worried that perhaps her latex allergy was jumpstarted somehow. She had taken all of her clothes and diaper off during her “nap” time that day and pulled the sheets off the crib, so she was just on the mattress, which is vinyl, which usually has latex. But, we left it at assuming it was the medicine.
So, Sunday we fill her new prescription. I love it! With the phenylbarb, it came as a small pill, and we had to hide it in food for her, either whole or crushed, but she started figuring this out and was not wanting to take the food or was spitting the pill out. The new stuff came as a grape-flavored liquid, administered by syringe. Yippee! (The things I get excited about…) BUT, throughout the day Renny’s eyes are extremely puffy and very very red. She just looks miserable.
Our oldest son had a doctor’s appointment on Monday, so we decided to take Renny with as well to try to get her pediatrician to take a look at her, just to see if she saw anything else. We get her in, and after talking with her for awhile, she has Renny come over on my lap and gets a good look at her. After one look at her eyes, she says, Oh! That’s adenovirus! Say, what? It’s called a summer virus, characteristic with the very red eyes, and the swelling and rash can sometimes accompany it. And no real drugs for it, it just has to run its course. SO….that’s that! For now, though, we’ll keep her on the keppra.
So, today (Wednesday), she had an MRI in the morning, followed by spina bifida clinic in the afternoon. This is when various specialists (urologist, neurosurgeon, orthopaedics, OT, PT, etc) rotate around and come in to examine her and check things out. Most visits were fine and with no real areas of concern. However, that is not necessarily the case with the neurosurgeon. He looked at the MRI results and explained that Renny’s backside of the brain was a little off, structurally wise. He said it was called Polymicrogyria, which can cause a person to be prone to seizures and developmental delays. When asked if this may be why she isn’t talking yet, he said yes, most definitely. Wow. When asked if this was a permanent thing, he said, yes, in the sense that she may always have developmental delays, but that the speech could very well come, just much later down the road than normal (obviously), and that a lifetime seizure disorder could be a possibility. He did not necessarily state that she was doomed, but he also didn’t really give us any encouragement in any way. We felt a little depressed after that. Along with all that, the catheter from her shunt that goes into the ventricle in her brain is “getting short.” So, that will need to be replaced within the next 3-6 months, which means another surgery for her. Ugh.
Though depressed about this news about her brain, T and I discussed how we know that she is young and that the brain has a great capability to change and grow through stimulation, and we just need to work more with her to try to do this. Right?
We are so ready for a stretch of uneventful “stuff.”
Prayer Requests!! Please, please pray for her brain to “outgrow” or “overcome” this structural problem, or really to just “get better”. Please pray for her ability to speak. That she will not have any more seizures. That she will learn to walk. And that she will not have anything else “go wrong.” Thank you…..