Maria Rose

Maria got home from the PEMU last night. She’s been energetic and happy today, clearly glad to be home.

She never did have a seizure during her stay. She had a number of behaviors as they cut off her medication, including the open mouthed thing we’ve always assumed was a seizure, but the neurologist said there were definitely no seizures on her EEG. There was one sort of “near seizure” but when he reviewed the video there were no behaviors he could point to. She can still get overwhelmed by things, and that leads to unusual behaviors like the open mouth, but these are either deliberate or muscle-based, not brain-based.

However the EEG clearly showed she is a seizure patient so he restarted her meds. He replaced the Trileptal with Keppra, a drug he said is more effective on her type of seizures. Unfortunately there is an insurance glitch so the pharmacy gave Cathy a small, short-term prescription until that can get worked out. They can’t give small amounts of liquid – it’s either the whole bottle or nothing – so they had to give us pills. Of course Maria can’t swallow pills, plus the pills are 500 mg and she should be taking 200 mg, so we’ve been messing around with grinding them up and figuring out how to give the drug to her.

Right now the biggest problem is how to get the glue out of her hair. The EEG glue is pretty nasty and she has big clumps of it. They recommended olive oil, mayonnaise or peanut butter. I tried the olive oil and it helped some but I had to grease up her whole head to do it. She still has some large patches even after all that. I think it’s going to just be a matter of waiting for it to flake out on its own.

Now we have to wait to see how the new medicine works out, which of course delays yet again those new medicines prescribed many months ago.

A very bad thing happened last night. Maria got an extra dose of one of her meds. I thought I’d already given it to her and said something, but the nurse assured me it was time. Like the sleep-deprived mom that I am, I gave it to her and then called Andy to confirm that she did indeed have her evening dose. Why didn’t I call him BEFORE giving it to her? Dunno? I called the nurse into Maria’s room and told her what happened, she checked the chart, and saw that I was right. It’s along story why it happened — the usual perfect storm where 5 things in a row go wrong. She called the doc who said she’ll be ok and we’ll cut the dose a bit in the morning. She had to write an incident report. This morning the doc apologized on behalf of the hospital and said he hoped it didn’t damage her career. Yikes!!! It is pretty serious business….

I slept in Maria’s bed most of the night. I think she felt like crap and wanted me near. Neither of us got much sleep. Her heart kept racing and setting off the monitor alarm. The doc assured me the extra med didn’t cause it. So, why only last night then??

This morning the doc said Maria still hadn’t had any seizures, which he said gives him more good info. We agreed to halve one of the meds and see what happens. He’s not crazy about that drug, he would have given her another one mor targeted to her type of seizure. I want to know what to tell the teachers when they say she’s having several seizures daily. I want to know what her seizures look like today. I want to know what to do when Maria exhibits her behaviors or seizures or whatever. All these answers take time. We will tackle them 24 hours at a time. To an untrained eye, Maria’s eeg looks different to me today than yesterday. We’ll see what he says tomorrow.

I was planning to go to work this week and have Andy or Sue watch Maria during the days, but if I don’t get any sleep, I don’t know how I can work, and if she does start having seizures, it’d be best if I were nearby.

We’re at the end of our 2nd day at the pediatric epilepsy monitoring unit. So far, no seizures. I’m not surprised because Maria hasn’t had any seizures since “The Big One” or “The Event”, as it’s sometimes called. Her neurologist has seen inter-ictal spikes, which just basically means she’s prone to seizures, as I understand it. He doesn’t want to stop her meds, but I hope he decreases them some because we need to see what her seizures look like now, and if she never has one, what are we doing here and how long will we need to stay?

Maria wasn’t at all happy Fri morning when we came. She hasn’t been eating or drinking so great, but she did love the Taco Bell bean burrito and her usual organic milk-Pediasure mixture I brought her this eve. I hope she lets me get a little more sleep than last night. Between the bed being extremely uncomfortable and Maria continually grabbing wires — I got very little sleep! The one time I did sleep she managed to pull her little turban thing almost off, so now her hair is a mess! It’s so hard to be fashionable in the hospital!

Uncle Andy came today to give me a little respite. I took a shower, a 1-hour nap, and got a 90-min massage. I feel almost completely refreshed. My little “girlie problem” has been raging the past couple weeks. In a mere just-over-two-weeks, I’ll be back here getting my little girlie problem taken care of, with my body parts still in tact. I hope. We’ll see! After 8 months of this crap, I’m ready for it to be over!! Regardless, it’ll be good to see my sis and friend, Monica!

It’s been an international weekend anyway — Maria’s day nurse is from Russia, night nurse from Ghana, and my massage therapist from Yugoslavia. They’ve all been great so far…

We headed to Albuquerque to see Grandpa & Grandma Ida over the holiday weekend. We went via the Beeline Highway, for a change. It was pretty, but because of where we live, it’s soooo much better to go I17 to I40. We’d driven an hour going the new way and were still in town!!! The road goes through many small towns with traffic lights, road changes from 1 lane to 2 lanes and back again, several turns onto different roads to get to I40. I much prefer 2 lanes, divided highway, interstate, cruise control, no muss, no fuss. First time ever–Maria slept almost the entire way!! In fact, she woke up right about the minute we were supposed to arrive at Grandpa’s, if we hadn’t gotten stuck for 2 hours behind a fatal accident on I-40. Yikes!

We had a nice, lazy time in NM. Great visit with the cousins and Aunt Louise. Small group, so we got to visit more and longer. Sure wish we saw each other more often! I forgot Dad & Ida have a pool at their place, so I took Maria swimming. She had a great time, kicking her legs, moving her arms. I think she knew the day we were leaving because that morning she was fighting to get into Grandpa’s lap. She really loves him! I tried to get some current photos of them; too bad Maria wasn’t cooperating. I have many cute ones of them, but nothing recent.

She slept great Fri and Sat eve; yet the night before we left, she did her usual sleepless night thing. (It’s been a week and I’m still not caught up on my sleep….) Not only did Maria sleep most of the way to ABQ, she slept much of the way home also — I don’t know what got into her. She NEVER sleeps in the car, and this trip she slept several hours each way! Our little girl is growing up!

The 11-year old daughter of one of Maria’s special ed teachers catsat. It worked out great! Cats were happy, new catsitter loves them! It’s so sweet how Bella and Kijana get along with each other and with Maria and with the new catsitter. I’m thrilled that it worked out so well!

We went swimming this week, and Maria was kicking so much, I had to really hold on tight! The coolest thing, though, was yesterday when Sue said she was going to put the vest on Maria and we both heard her say “no”–plain as day!! Sue also heard her say “no” last week! Sue was sick 2 days this week so I had to stay home and work while taking care of Maria. Not a good thing. I’m thinking I may need to find someone else for a few hours a day and see how it works…

The other big event this week was our quarterly meeting with the state. State person was less of a bitch than usual and the best news–she’s passing us off onto yet another coordinator because their unit is splitting into kids and adults and she’s staying with adults. I found out that she’s never had a kid as “involved” (disabled) as Maria. Now I understand why they think we’re trying to take advantage of the system. Often Maria’s asleep when they come, plus they rarely pay her any attention, so obviously if she and others don’t have experience with someone like Maria, they don’t get how much help she needs. Why the hell did it take me 6 years to figure that out?!

The funniest thing of the week was this afternoon while Andy was feeding Maria, he told me Kijana finally caught the gecko that’s been hanging out in our house (that’s not the funny part). I caught it and put it outside (it was still alive, fortunately). A bit later he said, “I let her eat the lizard’s tail because I figured it wouldn’t do any harm.” (or something like that). It’s Friday, I’m exhausted, so naturally I thought he meant Maria, not Kijana! I couldn’t figure out what the hell he was thinking letting Maria eat a lizard tail! hahaha. hmmmm, guess you had to be there…. still makes me chuckle!

Although this blog is for Maria’s antics, her daddy’s antics are integral to Maria’s well-being and state-of-mind. I talked to Manolis this evening. His asshole boss wanted him to go to work Thursday or find another job. That would be less than a week off after getting out of the hospital, not the recommended 10 days. I expected him to call Sunday (every 2 days); when I called him Monday to see what was up, he said he was too weak to call the day before (he has to walk to a pay phone, his cell won’t call the US), but he’s feeling better and he’s pretty sure he’ll probably be ok to work Thursday.

Then his AHB (asshole boss, who I hope doesn’t read English or know about this blog) wanted him to go into work today!!! (which is Wednesday there–about 5 days after he got out of the hospital). He said he and his boss (the captain) have to go to the nearby town to talk to the Port Authority, something about the doctor not clearing him to work yet and maybe the captain getting in trouble because he wants him to work. I couldn’t understand what he was saying exactly, but it didn’t sound good, and it sounds like his boss is pissed at him. Maybe the doctor’s report goes to the agency that manages his seaman’s book (which tracks his work time for retirement, licensing, etc), so they have to get special permission for him to work against doctor’s orders??? It pisses me off that the guy is so mean! (One of Manoli’s friends said, “That’s a Greek for you!”) This is a guy he’s worked for for about 15 years or so, so he knows Manoli isn’t a flake.

He only needs to work 10 more days to qualify for retirement, but we’d both like him to come home with some money, so we’re both hoping he can stick it out for the season–without seriously risking his health, of course.

I might be projecting, but Maria seems better when she hears her daddy’s voice periodically.

We took Maria to the Ringling Brothers circus yesterday and she seemed to like it. She watched the performers, stood a lot during the performance and generally had a good time. The performance was VERY overstimulating with lots of noise and lights and sparkly bits, but she never seemed to get overwhelmed. Usually she’ll roll her eyes up into her head when she’s had too much but she never did. I think she got bored before it was over, but it was a good experience overall.

We were going to go look at wheelchair vans after that but they were closed so we’ll have to try another time. Cathy looked at their website but of course they don’t list prices so it’s hard to shop. We need to do that soon because time is slipping away and Maria’s just getting bigger. I’m not sure what the status is on the new wheelchair but these things take months so who knows?

The neurology nurse agreed it was strange the doctor canceled the PEMU but he’s out of town for a while so we’ll have to wait until he gets back. Meanwhile we’ve almost certainly lost our spot which is annoying because it was perfect. Next month Cathy has her surgery, then after that it’s school. Maria’s seizures do appear to have calmed down and she’s sleeping less during the day. Maybe we can finally start the new meds we got over THREE MONTHS ago.

We talked to Manolis today and he’s out of the hospital, thank goodness. He sounds good. Apparently he had 3 new polyps that grew since his surgery in Dec 2008 and it was them, not his nose, that was bleeding? His blood pressure was very high in the hospital, but is down now. I’m sure he lost weight and a lot of blood; he said he feels weak. His doc wants him not to work, bend down, or lift anything for 10 days!! I sure hope his boss is ok with that..

It’s a good thing he was planning to work longer than the minimum needed for retirement — can you imagine if this screwed up his work credit and he had to go back again?! yikes. The billing people caught him before they let him out; it was only $300 euro for 4 days in the hospital. Thank goodness!!

Sue said Maria was in a bad mood, almost depressed today. She was asleep practically the entire time I was home, but the little I saw her awake, her eyes didn’t look good. Almost like she wasn’t feeling well? She better get better by tomorrow–we can’t miss the circus!

I’m so glad Manolis is out of the hospital. I was worried. Still am a bit, but not as much.

I was wondering why Manolis didn’t call Maria on her birthday yesterday. I tried him several times, left a message and a text — although I’m not sure his phone accepts them. I just figured his phone broke (he buys a cheap phone each summer when he goes to Greece) and he’d call when he could. He called today on his friend’s cell phone (his battery died) and said his nose started bleeding again, they couldn’t get it stopped, and he’s been in the hospital since Monday!! They shoved a balloon up his nostril a couple times and have cauterized it a couple times and it still hasn’t stopped. He had surgery for the nose bleeds in Phoenix 18 months ago and it was better than it had been ever in his life; he was so excited!

I don’t know what happened. His doc said the polyps came back, that surgery only lasts a year (which sounds like bs to me). Fortunately Manolis’ heart and blood tests are good, but his blood pressure has been very high because of the pain. I don’t know why the hell they don’t give him more pain meds. He needs an advocate there to help him. He’s scared of doctors and hospitals and it makes me crazy to think of him there alone (though he has had friends visit). He said the food is really bad (rice, mashed potatoes, macaroni and cheese — must be a special on white food that are simple carbs) and that he’s losing weight. Oh yea, and he said he doesn’t want to die there because he wants to be cremated over here…….. How am I supposed to get my work done this afternoon with this nonsense going on?!

Maria had a good birthday yesterday. She immediately noticed the purple streamers I put up in the living room, but not the balloons in her bedroom. She also immediately started grabbing for the gift bags! The gift she loved the most was the phone. I gave her a kids phone that sounds just like a real phone. I only wish we could record a message on it. I swear she kept thinking her daddy was going to be on the line, so she seemed excited yet disappointed. She ate cupcakes before dinner and just had fun all day long!

Saturday we’re going to the circus. I just hope her daddy gets out of the hospital soon, and fixed, and not too traumatized.

Manolis asked me if I had a dream that he was in the hospital, I said no, that I thought everything was fine, but now that I think of it, Maria has seemed a bit agitated and out of sorts this week, not sleeping well at night. I wonder if she knew somehow…

Yesterday and today I took Maria swimming. Yesterday it was at a party in downtown Phoenix for the Deaf-Blind Project (hate the name! but they won’t change it), which is for parents of children with hearing and vision issues. The other kids there were younger than Maria and all so tiny; I assume they were micro-preemies. Today we went to Telephone Pioneer Park in Phoenix. I sure wish more people knew about that pool. We went at 4:30 and were the only ones there (besides the life guards, of course). One other family came as we were leaving.

Maria had that silly grin on her face in the pool, especially yesterday–the one with all her sharp teeth showing–the one I love so much! It was mostly when the water touched her face or ears, when I had her on her tummy. Today she was even laughing! It was so cute!

Yesterday we went to the pool party, home for an hour to eat, then to her OT and new speech therapy appointments. She didn’t do much for Chris and was totally asleep for the new therapist. Chris thinks she’s still getting over her traumatic experience and we should go easy on her. The PT doesn’t want to do extra visits this summer because she doesn’t think Maria’s ready for it, and now her OT is saying the same thing. I just need to tell myself that it’s ok to take a break…. When I used to play guitar, if I took a break for several months, I always started back up stronger and better.

I don’t think the new speech therapist is going to work out. I don’t think she read anything about Maria (e.g. previous progress report) because she was reading it during our appointment. She didn’t notice that we’re not working on oral-motor anymore, we’re focusing on augmentative communication. She hardly asked me any questions–even when I asked her more than once, “do you have any questions?”. She had no suggestions, didn’t talk much, didn’t seem all that interested, really. I came on a little strong about my goals for Maria, but even so, she had plenty of opportunities to chime in.

Today, Maria slept late (about 10:30am), ate a good breakfast, then we went to the outlet mall. I got her some shoes that might work with her new AFOs. I asked for a shoe horn. When we were checking out, I asked if she’d charged us for it and she said it was free; when we got home, she’d forgotten to put it in the bag. Very aggravating! I have to go back up there to exchange a dress for Maria that I got in the wrong size (I thought the S was a 5), so I’ll just go back in and get the dang shoe horn.

After the mall, we went swimming, she had dinner, then went to sleep. So I suppose if I keep her busy enough, she doesn’t sleep as much (except for those times she’s fallen asleep mid bite, in her walker, in her stander, anytime, anywhere, if she’s tired enough).

Friday I called the neuro nurse again about them cancelling us for the epilepsy monitoring. I hope she calls me back Monday. I also hope the dang state “advocate” gets back to us. We’ve now been a month without habilitation hours, and I’m still trying to get her to transfer 4 hours of aug comm training to the person I asked her to transfer the hours to. It’s so hard to find good help….

Of course, since today is Father’s Day, we called Manolis (and my dad). Two times now, Maria has started complaining as soon as she hears his voice. It is sweet and sad at the same time. She’s been seeming more aware of things. I’m sure when I put her swim suit on today, she knew we were going swimming because she smiled. She’s been petting Kijana nicely more often. There were several other things I’ve noticed the past week or so, but of course I can’t remember what they are. She’s really getting big and long, harder to pick up, much harder to put in the car seat. Dang it, I’m going to have to go see about that wheelchair van pretty darn soon….

3 more days and my sweet baby will be 6 years old!!!

Maria’s been doing OK since her hospital stay…maybe. I saw her Monday the 7th and she was fine, completely back to her old self. However when I went back Friday the 11th Cathy told me Maria had been sleeping a LOT – like all day and all night – ever since. Cathy called a nurse who specializes in seizures and asked her about it but she said as long as Maria is wakeable and she eats and drinks when she’s awake, we shouldn’t be worried. Maria has done this before, usually a growth spurt or something like that, but it’s a bit worrying so soon after this other drama.

That Friday she had an appointment with the orthotist because we were concerned about the fit of her new AFOs and her new body brace. She checked them out and they seem to be fine. The body brace left a bad mark on her thighs one day at school but we think the school just put it on wrong. When school starts Cathy will have to be sure to put Maria’s braces on in the morning rather than letting the school do it.

To give you an idea of Maria’s sleeping pattern, that day she slept until about 9:15, woke for the trip to the orthotist and then fell asleep again about 11:30. She slept until I woke her at 4, got a little supper and then went to sleep at 6 for the rest of the night. So she was up about 4 hours for the whole day and had roughly three bites of food (no exaggeration).

Yesterday she did better. She slept until 10 and then took a 2-hour nap in the afternoon, so it’s still above normal but better than it was. She’s alert when she’s awake so it’s fine. Probably.

The weird news is the neurologist’s office called to cancel Maria’s PEMU stay. Our reaction was, “Huh?” That makes no sense to us considering the recent seizure emergency. Cathy called back to find out what the reasoning is because we really would be more comfortable with her having a seizure study but Cathy hasn’t gotten a return call yet. The timing was perfect because if it happens later, it gets into Cathy’s upcoming surgery and after that school starts up again. The annoying thing is we’ve probably already lost our slot.