Archive for August, 2007

3rd Week of School

Thursday, August 30th, 2007

We’ve come to the end of Maria’s third week of school. Fortunately, this week was better than last. No school yesterday, few seizures. Maria’s physical therapist suggested her “episodes” are partially stress-caused, which seems plausible. I asked Maria’s teacher if she can sit quietly in the classroom during the first 20 minutes of school when the other kids are playing on the playground. I figure she can look around the class and get used to her environment before all the craziness of the other kids begins. The teacher said it’s ok for now while it’s hot out and there’s few kids, but when the weather gets better and there’s more than 10 kids in class, then all the teachers will need to be out on the playground. That seems fine for now. Today was her first day of this new arrangement, and it seems like it went well. Next week she has Monday off, so we’ll see if next week goes well too.

The other thing the teacher agreed to is letting me sit in class next Thursday to see if I can make any suggestions to make things better for Maria. I am continually impressed and reassured by the teacher, thank goodness.

I’m searching for another neurologist. One that was recommeded doesn’t submit claims to insurance. The patient pays for it and submits their own claims. The initial cost is about $2500 – $3000. Yea, right. The other one who was recommended takes our main insurance, but not our secondary–not a deal breaker, but not ideal. We’ve been playing phone tag, the scheduler said the doc doesn’t have any appointments, but she said to let her know what Maria’s issues are and perhaps she can get us in with another doctor. I figure if I lay it out for her, they’ll let us in. I ought to send them a picture or bring her in to the office so they can meet her.

Tomorrow my co-worker retires. He’s been doing a lot of my class logistics for me for the past couple of years. My workload is going to significantly increase now, and they don’t seem to be in a real hurry to replace him. I’ve begun the whining. Don’t know if it’ll do any good.

It’s a seizure-palooza!

Thursday, August 23rd, 2007

Maria has been having a very bad week seizure-wise. For example, yesterday the school said she had 26 seizures over the 3.5 hours she was there; earlier in the week she had a 40-second seizure (they are usually half that) that had the teacher ready to call the nurse. Today she had music therapy before school and had about 15 seizures during that hour so Cathy kept her home.

The neurologist continues to be unhelpful. It’s been only two weeks since she’s seen Maria, yet she didn’t remember anything about her case, her type of seizures, whether she’d been in the PEMU, etc. The pediatrician consulted her because a blood test showed Maria’s Trilepal levels were about 1/10 what they should be, which is odd when you are taking 2/3 of the median dose. The neurologist just dismissed that saying it was a fluke. She did say to increase her dose over the next few days, bringing her up to the median dose.

In the meantime, Maria has given all of her caregivers a cold. I’ve gotten over mine, but I’ve been away from Patient Zero for a week. I’ll probably get sick again after taking care of her tomorrow. She, meanwhile, just keeps getting re-exposed at school so has been sick pretty much as long as she’s been in school.

In addition, Maria also isn’t sleeping well. Lack of sleep is a HUGE seizure trigger. Between that, the cold, being in school, and life in general she is pretty stressed right now. Needless to say, her mama is pretty stressed too.

Three year well check

Saturday, August 18th, 2007

Maria had her latest well check which ended up being more a post-hospital followup while we brought the pediatrician up to speed on the latest drama.

Maria’s been feeling crappy lately, though we aren’t sure why. Cathy thinks it’s from being around all those germ factories at school. I suspect that it’s side effects from the increasing dose of Trileptal. It’s probably both. She’s been pukey and gets bouts of crankiness where she is clearly uncomfortable. Her seizures tend to be less severe but certainly aren’t anywhere near zero yet.

She’s started doing the finger-down-the-throat thing again. Cathy met another mother at the last hydrocephalus conference and her son does the same thing. She said they finally figured out that he was doing it when he needed to burp. We’ve been trying to burp Maria when she does it and so far it seems to be helping. She tends to swallow air when she’s having a seizure so she’s been pretty burpy for a while.

I was thinking we should try teaching her the sign for “burp” so she can ask us for help rather than gagging herself. I can’t remember if I’ve mentioned it before, but I found a great online ASL browser for stuff like this. I have yet to find a word they don’t have.

Cathy is getting less freaked out about school, in part because the school seems to be adjusting to Maria’s needs. She’s still concerned about a few things, but it’s a learning curve on both sides. A particular concern is that she asked how Maria was drinking and the aid said, “She hasn’t been drinking much. We’re a little concerned about dehydration.” Um, and you were going to tell us that when??? If Cathy hadn’t asked we aren’t sure they would have mentioned it. Cathy’s going to start including a bottle in Maria’s backpack in addition to the sippy cup since it’s easier to get her to drink with that.

We continue to keep the cochlear implant in the back of our minds but the audiologist, as we’ve probably mentioned before, is terrible about follow up. She just doesn’t return phone messages or emails, which is a touch annoying. She is supposed to send us contact information on some national expert we can get more info from but hasn’t yet. Since the hearing aid thing dragged on for over a year without her returning a single message, we aren’t optimistic. Frankly, even though we know the possibility of an implant is important, we have enough on our plate right now. Cathy certainly has better things to do than keep nagging her.

3rd Day of School

Wednesday, August 15th, 2007

Ok, so today wasn’t as bad as yesterday, fortunately! Maria got up earlier, ate and drank better, only grabbed the car seat straps for a short time, and didn’t curl up into a thumb-sucking ball when I put her in her stroller. When I checked her in, I put her in the shade myself, rather than relying on anyone else to do it. The teacher’s aid said they came up with a sign for Maria, it’s mouse (starts with an M like Maria). The sign is a finger touching the tip of your nose, like what Butch Cassidy and the Sundance Kid did. Since that’s probably too hard for Maria, they’re doing it by swiping the entire hand in front of your face–it looks like you’re swatting a fly. It’s nice that they’re adapting to her.

Sue had an easier time with the stroller (yesterday she couldn’t get it closed) when she picked up Maria. Maria was happy to see her, but not HAPPY TO SEE HER like yesterday. When I checked in Maria’s backpack after school, the only thing in there was a paper with several signs (sign language). She did pretty well this afternoon, tho’ only so-so with the new occupational therapist–probably because we woke Maria to see her.

So I suppose this school thing may be ok. We’ll see how it goes tomorrow!

2nd Day of School

Tuesday, August 14th, 2007

I was ok for Maria’s first day of school. I’ve been mentally preparing for it for at least 18 months. But nobody ever said anything about the 2nd day of school. I never thought past the first day. She didn’t drink much milk this morning. She didn’t eat much of her breakfast. When I tried to take her out of her car seat she was grabbing on to the straps for dear life. When I put her in her stroller she curled up in a thumb-sucking ball. Then I handed her over to the aid who let her sit in the hot Phoenix sun for a couple minutes while she checked in a couple other kids. I almost got out of my car to push her over to the shade, when the aid pushed her toward, if not in, the shade. This time I did cry when I drove away.

Sue peeked in the door when she picked Maria up and 3 therapists with clip boards were gathered around her while she was on the floor. I’m sure they were discussing how much time they’d need to allocate to the cutest, sweetest girl in the room.

She said Maria had lots of the gagging/choking seizures this afternoon, she (Maria) gagged herself several times and vomited at least twice, was close fisted, didn’t eat very well, didn’t nap, so Sue just sat and held her all afternoon (and bathed her a couple times) so she wouldn’t gag and vomit anymore.

But there’s more. It gets better. I looked in Maria’s backpack and there was a paper with the preschool weekly lesson plans. Let me share with you some of the things they’re doing in Maria’s class: practice following directions and managing routines. Display independence by walking in line, toileting, and cleaning up. Learn to recognize their symbol in class. Strengthen their large gross motor muscles (yes, it really says that) by riding tricycles, digging in the sand and climbing on the jungle gym. Learn to read names and recognize letters in words. Practice rote counting. Learn the days of the week and months of the year. Develop strategies for seeking solutions to problems. Participate in snack time activities like pouring from a pitcher. Use more complex language patterns in their speech. That’s great, isn’t it? Oh my God.

And tomorrow, we get to do it again!

1st Day of School!

Monday, August 13th, 2007

Today was Maria’s first day of preschool. I think I had my semi-melt down Saturday, so I was pretty much ok today. Her class starts at a very decent 9:30am. We got to the playground at around 9:25 or so, nobody was there and the gate was locked. This being Phoenix and this being August, it was pretty stinkin’ hot already. Finally the aid came and I hung out with Maria for a while until they checked everyone in. The aid took Maria out of her stroller and sat on the fake grass with her and a ball, and I said, “so I guess I should go now?”. It all seemed kinda unorganized, but what do I expect for the 1st day?

At least half the kids (3-5 years old) came on the bus (can you imagine?). I saw one couple leaning against the wall, wasn’t sure who their kid was. Another mother was annoyed that the gate was locked, and when they opened the gate, she dropped her daughter off and left. One mom was there with her loudly crying boy (who was in kindergarten). And that was all the parents I saw. I thought it was going to be a line of all 10 parents, crying uncontrollably. Hmmmm. I took a couple pictures and went home. I didn’t even cry, which is a real shock if you knew me. I think I felt too sick to cry…

I got a lot of work done at home, then Sue came, we chatted a bit, and then Holy Crap, it’s 10 til 12! School gets out at noon. So we scampered on down there and yes, Maria was the last kid to be picked up. We zipped over to Babies R Us to get a car seat for Sue (I put the new one in my car and she got my 2-yr old one), then home. Maria guzzled the milk down that Sue thoughtfully brought, but she seemed a bit stressed. She was stiff, eyes rolled up, jerky movements. Sue fed her when we got home and we gave her some Calms homeopathic pills (sugar pills, I call them), and that seemed to help. She stayed pretty keyed up all afternoon and evening.

I’m sure being around 9 other kids with all the activity and noise is a lot for her, especially considering the type of house she comes from (quiet), but I suppose it’s good for her. We’ll see how it goes tomorrow. They didn’t even tell me how she did today–did she have any seizures, did she drink her milk or eat her snack, how was the adaptive chair they got her, did she sit on the floor–I got nothin’. I guess that’s the hardest part. I’m used to getting the blow-by-blow description from Sue and Andy.

I got a call from one of the mom’s I met last summer at the Hydrocephalus Conference. Her daughter is 6 months older than Maria. They have a LOT in common. It was great talking to a mom with similar issues! Of course, as is often the case, she gave me a couple more things to worry about, and vice-versa, I’m sure… But so much better than hearing those moms who complain about their kid talking too much or running around too much. We WISH we had such problems. The next conference is coming up June 19-22 in Park City Utah. This time I’m hoping to bring the “tribe” (me, my sis, bro, hubby, and sweet little Miss Maria).

Open House…

Friday, August 10th, 2007

As Andy mentioned, we went to the open house for Maria’s preschool this evening. Sue, Andy, Maria, & I went. As you can imagine, it’s been a rough couple of weeks, topped off by the neurologist appt today (Andy didn’t mention her saying AGAIN that she’s sure Maria had a stroke before she was born, that she’s had significant brain damage and/or there’s brain tissue missing and/or her brain is slightly deformed. A mom really likes hearing that, no wonder Maria withdraws when we’re in there…). There’s a lot of crazy nonsense at work (re-organization, lots of retirements, 2 of my co-workers are leaving so I get to do their work also), so that’s also been a bit of a strain. And then we had the preschool meeting.

The teacher is super sweet, friendly, wonderful. Her aid, the one we’ve met, is also very nice. Both of them seem to really enjoy Maria and don’t seem to be afraid of her, even when we told them of the recent aspirating and seizure activity. In addition to her Swifty stroller, which is really tall, there’s only 1 other chair in the room that she can sit in. There are chairs with high sides, but no straps, and although the aid said she could sit in it with one of them watching her, I said that won’t work because if they left her (which they’ll do because they’re in a room of 3-, 4-, and 5-year olds), she could easily fall out of it.

The thing that freaked me (and Sue) out is that none of the other kids looked “special”. Her class will have 10 kids, 3 typical and 7 special needs. ALL of the other kids are very mobile. Almost all of them looked bigger than Maria. I asked Sue if this is the right place for her and she replied “they seem to think so”, or something like that. Holy crap. I know the Foundation for Blind Children seemed way too special, but this one, wow. Monday’s going to be pretty rough.

We did have a nice time in California. Went to the beach one day, Maria seemed to like the water and the sand. She and her cousin Amelia actually touched hands once. Maria was reaching out to Amelia, Amelia touched her hand, and Maria got a big grin on her face. So school will be ok, right? We went to the Bodies exhibit (real bodies that have been plasticized. Saw a brain with hydrocephalus, fetuses from conception up through birth, a cross-section of the throat so I finally saw how milk could go down one pipe to the stomach or the other pipe to the lungs, tiny bones in the ears). Pretty darn amazing. Maria got to lay in the grass a couple times, which she doesn’t do in Phoenix because I have no lawn. She ate well and slept well (though she STILL weighs 28 lbs). It was a nice, relaxing, much-needed week in San Diego county.

A vacation and a trip to the neurologist

Thursday, August 9th, 2007

Maria just came back from a trip to see her Aunt Rose. Cathy said she did pretty well overall. There were days she didn’t have any seizures but there were also days she’d have 30-40.

We just got back from her follow up appointment with her neurologist and we went over the hospital report with her. Maria had 13 seizures during the time she was on the EEG and I believe they were all on the second day. All of these were her “open mouth gagging” behavior however I don’t believe all open mouthed gagging is a seizure. They can start on either the right or left side of the brain and spread to both hemispheres but had “a clear left temporal predominance”. I need to look up temporal seizures to see what that means. They did point out that, though she appears to be choking, she wasn’t and her heart rate and blood oxygen were normal.

The report also mentioned numerous “inter-ictal discharges” which occurred as often as once per second. These are kind of like “pre-seizures” and can still have an effect on things like thought and memory. These occurred in the left frontocentral region (again I’m not sure of the significance of that).

They also recorded multiple “electrographic seizures” lasting 30-35 second but “without clinical correlation”. I wish I’d noticed that on the report so I could have asked her what that meant. To my non-medical mind that means “weird crap on the EEG but with no overt physical manifestation”.

Maria is currently getting a dose of Trileptal (10 mg/kg) which is 1/3 of the median dose (30 mg/kg). It has reduced her seizures but she still has many of them so the neurologist is having us increase to 15 mg/kg for a week then up to 20 mg/kg. We’ll call her in three weeks and let her know how much it’s helping. She said we are looking for increased awareness and function, which we’ve already noticed. The idea is to keep increasing it until we find the peak of effectiveness past which is the region of toxicity and bad side effects. However this is a very safe drug and probably the best anti-seizure drug out there.

During the visit with the neurologist Maria was very much in her own world and just wasn’t interacting much with us. This had the doctor concerned and started her on her usual “look it’s a seizure, look it’s another seizure, hey it’s another seizure” litany. Maria’s often like this at the neurologist and Cathy had always put it down to Maria having a bad day. However after the neurologist we went downstairs for her feeding therapy, and Maria perked right up. Maybe Maria’s just a good judge of character 😉

This was our last visit with this feeding therapist since she can’t fit us in once school starts on Monday(!). However she got us in with another therapist we know and like and who also has experience with cochlear implants (since all feeding therapists are actually speech therapists).

I mentioned during one of the hospital blog entries that we both liked the on call GI. One thing we liked about him is his attitude toward patients. He’s from Ghana and there they don’t have all the expensive equipment so they have to diagnose patients by *gasp* talking to the patients! What a wild concept! Anyhow he agreed to see Maria as her regular GI if we wanted (and we do).

The point to that is that during the feeding therapy visit Cathy mentioned (and I’ve been feeling the same way) that she’s been taking a “wait and see” attitude to Maria’s GI issues because we didn’t like the previous doctor. However we’ve also both felt that she really should be followed by a GI for things like her chronic constipation. During the EGD the doctor was surprised to see there was still food in her stomach HOURS after she had last eaten. We are both more confident with this guy so we will try to get Maria in to see him at some point.

*phew* This entry is already long so I’ll just hit some quick highlights. We are demoing a Swifty stroller and like it so the real one is being manufactured and shipped as we speak. Tonight we go for the open house at the school – did I mention that starts Monday? Maria has so many more issues than we talked about at the last school meeting. There’s probably more but that’s enough to fill your brain for now.