As I drove Melanie to preschool this morning, I tuned in to Dave and Carole on KLH (classic rock station) and heard the end of their "Tell me something good" segment. Listeners can call in or email with some piece of good personal news, for a happy contrast to most of the stories in the news these days. I wished so badly that I'd had a chance to call in this morning!
I realized a few days ago that Melanie's inflection-filled, unintelligble babble is.... gone!! When did this happen? Every word she says is a real word. Not always clear, sometimes not understandable, but no more "fluent aphasia," as Dr. H called it. Some phrases don't use quite the right words, such as "Mommy, where's a you name?" but who wouldn't understand exactly what she means? She's using whole phrases and forming entire thoughts with complete sentences, people! C'mon, say Melanie's newest favorite word with me: "BOOYAH!" And a few more: "Ha-wa-what?!" and "What you talk about?!"
She can repeat/copy any word- not perfectly- but hey, a year ago she couldn't even say two one-syllable words together with two different beginning consonants. ("Pink toe" was 'pih poh.') Now she can approximate "hippopotamus" and "upside down." A typical thought from Melanie's lips: "Jae, you sitdown here. You prayer, a brush-a teeth, a go nigh-night. Jae, come-a here!"
She can sing her ABC's! On pitch!!! (She's got better pitch than her brother!) My absolute favorite sound in the world is Melanie's singing, along with her sweet voice playing in her room when she wakes up in the morning. I love to just lie in bed and listen to her through the monitor, talking to her baby, singing ABC's, "Baa Baa Sheep," reading her favorite books... That sound is like being wrapped in silky-smooth, freshly-washed cotton sheets-- only on my insides. Ahh, I just love it.
Thank you all for your prayers! You have no idea the magnitude of hardships Melanie and our family have been spared, considering her diagnosis. There is so much pain, suffering, sadness, frustration, tiredness and loneliness in these Dravet families. My heart breaks for my brother/sister-tiger parents, but at the same time rejoices over the wellness and great strides we continue to see in our little girl. Did you know that she is still in what are supposed to be the rockiest years for a Dravet kid? Between about 3 and 5, she's "supposed" to be having too many seizures and ER visits and ICU stays for respiratory infections and major regressions and GI issues and behavior problems and and and....
She's not following statistics now, and I hope she never does. No matter what, she'll always follow the course God has laid out for her. And no matter what, it will all be part of His good and perfect will.
Soli Deo Gloria
Thursday, June 27, 2013
Wednesday, June 19, 2013
Minnesota Adventures
We had a long vacation in the beginning of June, when we spent 11 days in MN visiting family. Melanie brought lots of smiles and joy to her family, especially with her significant gains in speech and understanding. And her dancing, of course. :-)
The last few days of our trip were spent in SW Minnesota, with Great-Grandma and Grandpa DeVries. We went out to Great-gpa's farm, where Gr-Aunt Jan and Uncle Ajay now live, and the farmland is rented out. We were getting a tour of the acreage and the family garden on a warm, sunny, windy day. We passed by (down-wind) the extremely pungent cattle yard, saw the garden, and the kids walked through some tall grass. Uncle Ajay picked up Melanie to help her to some shorter grass, and when he set her down I saw her staring at the sky, blinking. Poor Ajay! I assured him it had nothing at all to do with him carrying her. Nick ran back to the van to fetch the midazolam, and I ran back with Melanie in my arms, causing a mini stampede in the cattle yard (which made James laugh). I got my workout for the day! She was already coming out of it when we got to the van, but I tried the first spritz anyway. She whined, so I stopped with that.
I sat with her in the van while everyone else toured the buildings and James got to climb on machinery and then got a ride with Great-gpa on his restored 1951 Allis Chalmers tractor. By that time, Melanie had gotten over the post-ictal screamy pain and sat in her seat with a pacifier while she watched the tractor.
We got back to the house and put Melanie to bed. She woke up happy and recovered, so in the afternoon we walked two blocks over to visit Luella, her twin Dravet sister! They live so close to Nick's family in this small farm town! Our six kids played together in the sandbox and backyard, and I got some precious photos of Melanie and Luella. They even have the same blonde curl in their ponytails. I'm so glad we got to see them.
At dinner the same day, Melanie was thrown into a full-on tonic-clonic (grand mal) at the table. I'm thankful that only Gr-gpa seemed to notice. I wouldn't want to leave Gr-gma with that mental image. We took her to the front room and used the midazolam, but I think this one would have ended itself. Nick and I took turns laying down with her on the sofa and then eating. At some point, she had another seizure, but this one was also quite short and less violent.
This breaks Melanie's pattern. For a couple years, she only seizes when she's sick, and we just see one seizure-- usually lasting at least 5 minutes, with a long, ambiguous post-ictal phase. Well, last week she was not sick, but had numerous triggers on the farm, and I believe I mispacked her meds and she was a bit short on wonder-drug. Also, 3 in one day is unusual. She may be evolving to seizure clusters. But I'm wondering if that might be healthier for her ultimately. If her airway is blocked, I'd rather that happen during a very short seizure. She also recovered much more quickly from these. Normally it takes 2-2.5 weeks for her to fully recover. This time, she was "off" for only one week. Her light clicked back on yesterday, and now her walking is back to her norm, her brightness is back, cognition is back (and progressing), and she's eating again.
The last few days of our trip were spent in SW Minnesota, with Great-Grandma and Grandpa DeVries. We went out to Great-gpa's farm, where Gr-Aunt Jan and Uncle Ajay now live, and the farmland is rented out. We were getting a tour of the acreage and the family garden on a warm, sunny, windy day. We passed by (down-wind) the extremely pungent cattle yard, saw the garden, and the kids walked through some tall grass. Uncle Ajay picked up Melanie to help her to some shorter grass, and when he set her down I saw her staring at the sky, blinking. Poor Ajay! I assured him it had nothing at all to do with him carrying her. Nick ran back to the van to fetch the midazolam, and I ran back with Melanie in my arms, causing a mini stampede in the cattle yard (which made James laugh). I got my workout for the day! She was already coming out of it when we got to the van, but I tried the first spritz anyway. She whined, so I stopped with that.
I sat with her in the van while everyone else toured the buildings and James got to climb on machinery and then got a ride with Great-gpa on his restored 1951 Allis Chalmers tractor. By that time, Melanie had gotten over the post-ictal screamy pain and sat in her seat with a pacifier while she watched the tractor.
We got back to the house and put Melanie to bed. She woke up happy and recovered, so in the afternoon we walked two blocks over to visit Luella, her twin Dravet sister! They live so close to Nick's family in this small farm town! Our six kids played together in the sandbox and backyard, and I got some precious photos of Melanie and Luella. They even have the same blonde curl in their ponytails. I'm so glad we got to see them.
At dinner the same day, Melanie was thrown into a full-on tonic-clonic (grand mal) at the table. I'm thankful that only Gr-gpa seemed to notice. I wouldn't want to leave Gr-gma with that mental image. We took her to the front room and used the midazolam, but I think this one would have ended itself. Nick and I took turns laying down with her on the sofa and then eating. At some point, she had another seizure, but this one was also quite short and less violent.
This breaks Melanie's pattern. For a couple years, she only seizes when she's sick, and we just see one seizure-- usually lasting at least 5 minutes, with a long, ambiguous post-ictal phase. Well, last week she was not sick, but had numerous triggers on the farm, and I believe I mispacked her meds and she was a bit short on wonder-drug. Also, 3 in one day is unusual. She may be evolving to seizure clusters. But I'm wondering if that might be healthier for her ultimately. If her airway is blocked, I'd rather that happen during a very short seizure. She also recovered much more quickly from these. Normally it takes 2-2.5 weeks for her to fully recover. This time, she was "off" for only one week. Her light clicked back on yesterday, and now her walking is back to her norm, her brightness is back, cognition is back (and progressing), and she's eating again.
This tractor was built in West Allis, WI, almost in our neighborhood!
(You can see Melanie in the van, watching)
Melanie (R) and Luella (L) in Luella's back yard. They so enjoyed each other!
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