Maria Rose

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.

We finally got home this afternoon at 5ish. Last night they moved us from the PICU to a regular room. Much less nurse presence (of course), restroom down the hall, similarly uncomfortable bed, much more noise. The 1st night I didn’t get much sleep because the monitors kept going off (and there was that pesky 64 pulse ox reading that got them stirred up until Maria sneezed and went back into the 90s). The 2nd night I didn’t get much sleep because Maria was awake and pulling at her tubes and wires. Once I saw her with one of the EEG wires in her fingers, and I kept thinking she was going to start pulling the NG tube out while the milk was dripping in (she was on continuous feeds all night). Last night I didn’t get much sleep because they moved us at midnight and Maria was awake until about 4am.

This morning Maria wiggled one of her IVs out. She almost sneezed the NG tube out once, she almost pulled it out a couple other times. They had her arms in soft splints sometimes to keep her arms straight and prevent her from pulling things out.

She was more awake and alert today. Drank her milk when I gave her a bottle. Wasn’t much interested in eating until we got home. Didn’t get the Rx for rectal valium, not sure why; so now I’m still a little confused about our revised seizure plan. It’s not the same as what I discussed with the doc yesterday.

This little incident was pretty serious. Many people in the ER were thinking the worst. I didn’t allow myself to go there. I sure as hell hope it doesn’t happen again. It was not a good thing to come home to paramedics in the house and Maria hooked up to tubes and wires and still having a seizure. I did get some video of it to show her neurologist, not sure I want to watch it though…

Hell of a couple of weeks.

Quick update to say Maria did get home this evening. She’s drinking OK although not eating much yet. She and Cathy are pretty much exhausted so will take it easy for a while.

Maria’s been asleep pretty constantly during her hospital stay, mostly of course due to the extra medication. They took her off the new anti-seizure med (which I keep forgetting the name of) so she is now just on a slightly higher dose of her regular meds.

The big fear with a long seizure is the chance of brain damage. The neurologist said the seizure was short enough that it should be fine. It’s only when seizures are 30+ minutes that there is a problem. However Maria now has a new emergency drug. We will still use the clonazepam wafers if she has bursts of short seizures but if she has another long one we get to use diazepam – rectally administered liquid Valium. Yippee.

Since Maria’s been asleep so much they have had to consider how to administer her medicine. Depakene has an IV version but Trileptal does not. We tried giving her the Trileptal orally by dripping it very, very slowly into her mouth when she was kind of awake but that wasn’t practical in the long run. So for the first time in five years (nearly to the day in fact), Maria has an NG tube. It’s just temporary but it’s a disappointing setback.

She has eaten and drank pretty much nothing in this time, again because she’s been sleeping so much. She’s been getting IV fluids and today started getting Pediasure through her (grumble) NG tube.

Since they discontinued the extra medication today they expected her to wake up, but the little imp kept sleeping all day. She woke a little when they took off the EEG leads but didn’t want to eat or drink, play with her toys, and didn’t really care I was there.

The neurologist wants to release her tomorrow (Saturday) and he’ll be on shift them so there won’t be the usual problem of the backup doctors chickening out and keeping her. However if she doesn’t wake up soon and start eating and drinking, they will keep her until she does. They wanted to move her out of the PICU into general pediatrics today but there are no beds available so they are keeping her where she is for now.

Manolis was of course pretty unhappy about the news. However he’s glad he’s not here. He said if he had seen Maria in such a long seizure he would have died. All this hospital stuff plus Maria being so drugged would totally freak him out so it’s just as well he’s in Greece. He knows we are taking care of it.

Keep your fingers crossed and hope Maria comes home tomorrow.