Maria Rose

Yesterday Maria had her latest developmental psychology evaluation. They are supposed to be twice a year, but this one got put off a couple of times for various reasons.

These evaluations are very un-fun because they are all about what she isn’t doing. This one went pretty well, though the bad part is when we get the report in a few weeks. The only bad news in the appointment itself is that Maria’s spine has two spots where it’s just starting to curve wrong. We should be working more on getting Maria to sit up or stand so that her posture can improve. It’s still very early and not serious at all, just one more thing to be aware of. We need to work with the PT to switch Maria’s stander from supine (on her back) to prone (on her tummy).

The doctor also suggested hippotherapy (therapy with horses) which is one of those things that’s been on our list for months/years. There is apparently a very good hippotherapy place here in Phoenix not too terribly far from Cathy.

Her weight is at 29 lbs, 11 oz (including shoes and clothes) and her length is 36″ so she continues to stay right about the same size.

Maria’s chest congestion is gone finally. Cathy tried to reschedule the barium swallow but they can’t find the order so she had to go back to the feeding therapist and get it all started from scratch. It may be a while before they get us in. She does have an MRI and appointment with the neurosurgeon coming up toward the end of December. We’re still trying to get these “episodes” under control. I feel that fewer of them are seizures than before, but it’s so hard to tell which are which.

Cathy mentioned before how strange it is that she’s excited at getting her daughter a walker. She’s also excited that she got her application for handicapped parking done. It’s a very different world with a special needs child.

I was in Boise all last week at a meeting. Maria had a pretty rough week. It was very hard on me being gone while hearing about all the episodes she’s having, 2x people told me she seemed “out of it”, and one day the teacher sent her to the nurse–although why that day and not another day I’m not real sure… I did go by and see my old house, still looks the same, I still really miss it. Ate at all my favorite old restaurants, stayed at one of my favorite B&Bs (which has gone a bit downhill), had a pretty good time, considering at the same time my sweet baby is having many many many seizures or whatever the hell they are.

We went to Jerome yesterday. It’s an hour or two from Phoenix. Cute old mining town, but more of a Rosanne and Cathy town than a Manolis or Maria town–narrow streets, rough sidewalks, not very stroller friendly; lots of cute tiny shops–also not stroller friendly, Manolis got bored pretty fast. Nice drive up and back. Poor Maria was in the back having multiple episodes. I wondered if she was carsick and showed it through open-mouthed gasping. She doesn’t seem to enjoy travelling as much as she used to. Maria did puke a LOT the previous midnight–so much that I had to change the sheets, bathe her, wash her hair, and do laundry that night–so perhaps she was still feeling a bit puny??

And speaking of vomit, last weekend we went to Manolis’ boss’s (sp?) so Maria and I could meet his wife and let Maria ride a horse. They have bunches of horses, dogs, and cats. Maria & I “rode” (sat on while the horse ate) on a HUGE draft horse. Not sure if she liked it much. Of course, that was the day she went in for the blood test and got the new breathing treatment and more antibiotics that Andy was talking about. She puked a lot that day too, I was thinking of cancelling, but we decided to try it since she seemed better in the late afternoon. Less than a mile before their house (they live about 60 miles from us), Maria really let loose. Completely soaked her shirt, pants, car seat. It was a LOT. But Danielle (wife of boss) wasn’t bothered and held Maria facing out the 3 or 4 more times she vomited. Somehow we all survived to tell the tale.

Maria didn’t have school today, back to our routine tomorrow with the added twist of a feeding therapy at 8am at a place that’s probably more than 30 min from us, so we’re going to attempt to leave the house at 7:15am. I managed to bathe her this evening, so all we have to do by 7:15 is give her her 3 oral medicines, the breathing treatment, breakfast, and milk, and do her hair and dress her. Tonight I decorated a paper turkey feather for school (it was a family project). I glued elbow macaroni to the bottom like feather tips, and silver balls to the top, like I have no idea what. Hopefully it won’t be the worst one.

I got a call Friday telling me a spot opened up for Maria to start the Vital Stim treatment (hook electrodes to her throat and slightly shock it while drinking to build the swallow muscles) as early as this week. We’d have to go to one of 2 locations (75 min away or 60 min away) at 8 or 9 every morning, 4x/week for 5 weeks. With all the other stuff going on, I told her we just couldn’t do it now. I also missed a talk on Saturday about how to communicate with a person that has multiple disabilities. It was way the hell down in the far SE corner of the valley, probably 60-70 miles from our house. Andy gave me permission to skip it. As challenging as it is sometimes, Manolis and I always say that one smile from Maria wipes away an entire bad day….

Cathy had to take Maria for a blood test yesterday to check the Depakene levels. Since Maria’s still congested she asked if she could see the doctor. They sent her to a PA who said Maria should get a breathing treatment. It uses this little machine which vaporizes Albuterol or some other medicine to open up the brochi and make breathing easier. Maria just HATED it. Both Cathy and Manolis held her down while the nurse held the mask over her face and Maria struggled and struggled and struggled.

Then, as though that weren’t enough, they still had to draw blood. It went the way it always does. Cathy says, “She’s a hard stick.” They pat her on the head and say, “Yeah, whatever.” They then proceed to torture Maria for several minutes, poking her with the needle over and over and finally getting blood. Then they say in amazement, “Wow, she’s a hard stick!” Um, yeah, that’s why we said it.

They sent the breathing machine home with Cathy to do every four hours and Maria doesn’t like it any better. It takes two people to do it and there aren’t always two people around.

They also put her on antibiotics again, which just seems absurd with no fever or other signs of bacterial infection. Because lord knows we need yet another medication to give her. Then again the good thing about antibiotics is they sure make her constipation go away.

They are concerned about the possiblity of aspiration pneumonia - which it obviously isn’t because it doesn’t get worse when she eats or drinks but the usual “better safe than sorry” which means “we don’t want to get sued”. So Cathy had to take her for a chest x-ray this morning on her way to the airport, since she’s leaving town for a week. It’s not a good time to leave, but it never is. One thing we’ve learned is you can’t plan your life around Maria because you never know what’s going to happen.

I went along to the x-ray in case things didn’t happen exactly on schedule and Cathy had leave early for the airport - which they didn’t and she did. Luckily I decided to run an errand yesterday afternoon so I discovered my dead car battery yesterday rather than this morning. There is an auto parts store five blocks away. Have you ever carried a big block of lead (filled with acid) in 90+ degree heat? Five blocks is a long way

Cathy talked to the neurologist yesterday. Maria is still having many episodes every day even on the medication. Each time we up the Depakene dose she has fewer seizures for a couple of days then they start up again. Cathy is reluctant to up the medication anymore because Maria has become…well, not sleepy exactly but lethargic. The doctor said that the temporary seizure suppression is a sign that the medicine is working so he wants to up it a bit more but told Cathy to start tapering off the Trileptal.

She also talked to him about the seizure emergency medication which I guess we never talked about in the blog. As our regular readers may remember, in July when Maria was first diagnosed with seizures they were so concerned about shutting them down immediately that they gave her Valium in her rectum. For home emergencies you can even get your very own rectal Valium kit! During our first visit Cathy asked him whether we should have that and he said that we should have some kind of emergency dose, but that there are also dissolving wafers that are administered orally. That idea seemed better.

The problem is we aren’t sure what is an “emergency” so Cathy asked him for advice. He of course couldn’t just give us numbers since every case is different, but we should be using the additional medicine any time she’s having a bad day with lots of seizures. We can all certainly think of past days where we should have and we’ll be more likely to use it in the future.

Maria’s episodes are still a mystery though. We’ve long known that some of them aren’t actual seizures but clearly deliberate and it’s hard to tell which are which. Even some of the more serious ones we can distract her out of, and you absolutely can NOT distract someone out of a seizure. Part of our worry is that none of them are seizures and we’ve been drugging her for nothing.

The school has been trying to get in a vision therapist and one finally started this week. She is, like everyone, concerned about her seizures. She thinks Maria should be going to preschool at Foundation for Blind Children because they can cater to her needs better, for example creating a quite environment where she is less likely to have seizures. We don’t that’s necessarily a good thing. As we’ve mentioned before, FBC preschool is basically all day so Maria’s at-home therapies would probably just disappear. Besides, it’s a tricky balance between catering to her needs and enabling her disability. We feel the public school strikes a better balance to prepare Maria for real life. Going to the FBC wouldn’t be a bad choice by any means but, especially now that Maria has adjusted to school, wouldn’t be the best choice for Maria.

She is *still* congested even after antibiotics. I think what probably happened was that there was a cold and allergies together, one bringing on the other, and the allergies are persisting. It’s also possibly she could be aspirating, especially during these episodes, but the pattern really doesn’t fit that. She was supposed to have her barium swallow next week, already rescheduled because of this congestion, but that’s pretty certainly not going to happen so it will get rescheduled again.

I don’t think she has anything much coming up until Thanksgiving, and then she’s going to be on the road for a couple of weeks. After Thanksgiving we are going to stay on with her grandparents so Cathy can attend a class for work and the week after that we head to Salt Lake City to have Shriners Hospital examine her. We aren’t sure if we are going to be able to come home in between or not.

Here are those pictures Cathy was talking about. Click on the thumbnail to see a larger version.

Maria dressed as a hippie witch for Halloween.

A demo of the MiniWalk, a walker from Norway