Didn't want to see that sunrise

For the short version, see the "Recap" secton below.

We just had a successful trip to MN, to get a second opinion in orthopedics and for a neurology follow-up. While mom, dad and Melanie were at our first appointment, James was with Grandpa and got pretty sick, with fever. He was down for two days, and we even took him to a clinic for a strep test. Next morning he woke up, mysteriously, completely fine. That afternoon it looked like we'd have to take Melanie to the same clinic for a UTI. Thankfully, after some running around, that was averted with a home test strip and mysteriously vanishing symptoms.

We arrived home last night around dinner time, and all was uneventful. Mom had an inkling, so we gave Melanie a dose of ibuprofen in case she might be coming down with a fever. 3:45am I awake to alarming breathing sounds and rush up to find Melanie in a partial seizure and very hot. Since laying her down always encourages the seizure to generalize into a grand mal, I brought her downstairs and kept her upright. She was sitting on the couch, feverish and shaking while we got ibuprofen and tylenol in her, and some water. Then, it decided to come anyway. So I gave her her first-ever dose of our new rescue med, midazolam, which is sprayed up her nose. The convulsions stopped within a minute. Then I believe she was in a non-convulsive seizure, but ambiguously slipped into her sleepy post-ictal state after not too long. The midazolam has an extremely short half-life, so it was working out of her system pretty quickly-- unlike the 24+ hours of diastat. So we got to see how she shakes it off, without being drugged. Her eyes are always out of commission in this state, and her jaw is clenched and mouth doesn't work well. The rest of her body is limp, but all of this slowly improves (while she's still shaking from fever).

New this time, since she wasn't druggy, about 15 minutes into the post-ictal state we heard a tiny voice attempt a word. Then a few words... But her tongue and mouth weren't quite functioning yet. When Daddy stepped in the room, with her eyes still closed, she said "haa Daddy." As I watched, I sensed that 'coming out of anesthesia' feeling, when you just want to shake it off and get up and move around. She tried and tried: moving, talking and even singing it off. "ooooOOWEEEEEOOooooh!" If James had been awake, he would have been laughing at her. It was confusing, sad, cute and funny all at once. This started getting annoying the more she came-to, and I was almost lamenting the loss of the diastat stupor, because we used to be able to put her back to bed right away and let her sleep it off for a solid night and late morning. Wellll, she woke up around 7:30.  So we all missed church and took turns sleeping... kinda. Still exhausted.


Recap: Took a family trip to see the grandparents in MN for the week, beginning with an orthopedic appointment, then neurology. Both appointments went well. James was sick Tuesday and Wednesday with a relentless fever, but woke up completely fine Thursday. We got home Saturday night, and it seems Melanie may have caught that bug, and began with a seizure this morning at 4am. Our first trial of the new rescue med, which sprays up the nose, seemed to go well. The whole seizure, including the ambiguous ending and coming-to was much quicker than usual. Since the new drug has a 30-min half-life, she's looking pretty good today, just more wobbley and fighting off an illness. Mom and Dad lost a lot of sleep and we had to miss church this morning. We got back in bed after the sun rose.

We made it nearly four months without a seizure!

Real Help from Professionals

After three evaluation appointments with a neurophsychologist, we sat down with the doctor for the results last week. We pretty much heard what I was expecting: Melanie tested to be around 2-2.5 years old cognitively. Her strength is in social skills, where she's more like 3+ years. Again, I knew all of this, but the doctor had some good thoughts and advice for how to use this information to try and give her the best education. I'm now looking for a part-time group/classroom-type setting for her during the school year. I don't want to go back to public school and IEP's, but she needs some social time with other kids around her developmental age. If you have any suggestions or know of a good place, please let me know.

Also last week, on Friday we took a half-day trip down to Chicago to have two lessons with a master ABM teacher. She's practically at the same mastery level as Anat Baniel herself (and therefore the same pay grade...). Melanie cooperated better than I had expected, and the timing of our day worked out much better than I'd expected. Marcy did a lot with Melanie in the short 40-min lessons, starting immediately once she was on the table. I saw a lot of rocking of Melanie's pelvis, working with her neck and shoulders, moving her legs...
In my opinion, I believe the most valuable thing we got from this time came from our short conversations after the lessons. I have the contact info for a world-class pediatric podiatrist, who will evaluate a video of Melanie's walking for free. I also have info for a fabulous speech therapist, from whom we may be able to get some advice via Skype. Marcy used to be a voice teacher (we're talking Metropolitan Opera), so she noticed a certain quality to Melanie's voice which needs to be addressed. I feel really good and hopeful about these gems from our conversations.

Next week, we see more professionals in St. Paul. First will be a second opinion in orthopedics, and then we see my most favorite doctor ever for a follow-up: Melanie's neurologist.

And by the way, Melanie is getting cuter by the day, and she's finally in a big girl bed!

Melanie just had to leave the house in style, with her best bud.

More colors and numbers

I haven't posted in a while, because we haven't had much to report. No news is good news! So here is another update on her development.

Melanie can now help me count to ten. She will count to 3 on her own (or maybe 5, but skipping 4). But if I count with her and pause at each number, most of the time she can say the next one on her own. And she's starting to count on her fingers. This all really took off when I discovered what is apparently the MOST entertaining tub game, with our two Ernie toys counting with each other and jumping into the tub at various numbers. Apparently it's a hoot, and Melanie would be happy if it went on until the water got ice cold.

Melanie also has more colors on her pallete. Now we have blue, green, pink, yellow, and maybe red. Still not very consistent, mostly because she struggles with focusing her eyes on a task. She'll tell me something's pink, without even looking at it. If she looked, she would know it's really blue...

We have not seen much improvement in movement in a while. We're hoping to see some great results next week, when we travel down to Chicago to see a master ABM teacher. Some days I have taped her ankles in hopes it may help stability and keep her ankles from rolling inward (pronating). I think it helps a bit-- my mom said today she's not lurching so much when she walks. Pati has been working on her feet, legs and pelvis in ABM lessons, and in our last session we saw some really great things! Toes flexed instead of always curled, pelvis tucking towards chest which gave her a stronger voice, etc.

Well, we've had this atrocious heat wave for too long now, keeping Melanie inside most of the time. She doesn't sweat at all, so we need to keep her cool. I'm pretty sure we'll be needing a cooling vest soon. Thankfully, she loves water and can handle it just fine without seizures. She has gotten too warm a few times, but no seizures, so I still feel really great about her seizure control right now.

In my next update(s), I'll let you know about our results from her neuropsychology evaluation and our time in Chicago working with Marcy.