Maria Rose

A couple weekends ago, Grandpa and Grandma Ida came to visit and watch Maria for a bit so I could get a wee bit of sleep. The cutest part of the weekend was shortly after they got here, Maria started rolling and army crawling toward Grandpa Dick, then tried to pull herself up on his pants. OMG, it was adorable! She loves her Grandpa!

The 2nd weekend of October Rosanne came to Phoenix, Maria and I picked her up at the airport (after Maria missed school all week because she had a relapse of her strep) and drove 3.5 hrs to a bed and breakfast in Sierra Vista (south of Tucson). We spent the whole weekend bird watching and hanging out. It was great! Rosie came here to celebrate our birthdays–mine’s the 12th and hers is the 14th.

We went to Ramsey Canyon, which is supposed to be such a great birding place. The gift store was nice, but the canyon wasn’t very wheelchair accessible, so it was a big pain in the ass to drag Maria up there. I couldn’t tell if she liked the bumpy ride or not. I don’t know why it irritated me so much that it wasn’t accessible; it’s owned/managed by The Nature Conservancy, so they’re not required to follow the Americans with Disabilities Act. I guess I was annoyed because it wouldn’t be all that tough to smooth out the road a bit, which would allow lots more people to experience the place. Plus we didn’t see squat for birds. I’d give it about a D.

We went to the mining town of Bisbee, which reminds me a lot of Jerome, but smaller. Cute little town; most people were super friendly. We ate at a restaurant where an older gentleman said hi to Maria, then she grabbed his hand and started pulling him toward her. Very cute. A lady that worked there had spent a lot of time in Crete, so we talked about that for a while. Food was good too! I bought a cute tie dye skirt and a loose floppy dress at various little artsy fartsy stores. Some of the places were super expensive (not where I got those items, but some other places). Turns out a couple days after we left I heard a news story that they’d found a pile of human bones. Apparently a place was supposed to be cremating cadavers and they just dumped the bones instead. Creepy!

My favorite place was the San Pedro Riparian National Conservation Area, run by the BLM! The gift store was awesome!! Great books — I got some bird books on sale, a Southwest Slow Cooker cookbook, and a Dr Suess book about birds. Fantastic selection! Plus, since it’s managed by a federal agency, they DO have to follow ADA, so there were lots of accessible trails. We sat under a big tree for a while, then walked down to the river. Rosanne walked farther down the trail to the pond (not so great she said), while Maria and I stayed by the river. I took off her shoes and socks and stood with her in the sand next to the river; she was grinning like a monkey (she LOVES water!). She’d stand for a bit and then move her feet real fast, like she wanted to run to the water, so I’d hold her while she “ran” into the river. We did that several times, then just sat in the sand, while she chilled out and I checked out the birds through my binocs. I saw lots of cool birds, but for some reason the voice in my head that usually tells me what birds I’m looking at was curiously silent, so I didn’t identify any new life birds. I’d go back there any day!

The other place I really liked was Ash Canyon Bed & Breakfast. We paid $5 each ($10 total) to go sit in the yard and look at birds (the $ is to help her pay for bird food). We saw lots of birds, as well as squirrels, rabbits, a deer and a fawn, and a flock of turkeys. It was quiet and relaxing and very active (wildlife, not people) with lots of places to sit. Might be a good place to stay next time.

Our B&B was ok, not great. Loved the suite we had–a room for me, one for Rosie, an extra bedroom with a day bed, and a bathroom. Plenty of space, and Rosanne wasn’t disturbed by Maria’s antics during the night since she had her own room. She (Maria) was pretty good, except the last night when she was up most of the night. The breakfasts were the same all 3 mornings–crustless quiche, biscuits, and cut up fruit with walnuts. The coffee was Folgers. They didn’t fill the bird feeders, even though they knew we were bird watching (the hummingbird feeders were full and very busy, but I wanted a bit more diversity than just hummers). We did see some Pyrrhuloxia birds (like cardinals, but not so red), which were about the coolest birds I saw all weekend, but nothing too spectacular. We heard Great Horned Owls right outside the front door the first night; that was cool, but I didn’t see them. The owners were nice and it was a fine place, especially for the price, but next time I think we’ll stay at the other place or maybe in Bisbee.

We drove back, dropped Rosie off at the airport, and went for the 5th time to try and get Maria’s blood drawn — finally we had success!! (checking her seizure med levels — it really took 5 times and 4 places and countless sticks/pokes to get the proper amount of blood. Very aggravating!) Ever since we’ve been home, Maria has slept through the night every night. Most night she yells once, I change her diaper, and she wakes up the next morning. I’m feeling much better since I’m back to my 5-6 hrs/night. And in a couple more days, Daddy will be home and all will be back to normal…

I had a rough night Friday night, hardly slept at all, very sore throat. So Saturday morning, I took Maria with me to Urgent Care. 2 1/2 long hours later, they diagnosed me with strep and bronchitis, told me to do breathing treatments, gave me penicilliin, sent me on my way.

I sounded so desperate that Sue volunteered to come over Saturday afternoon, so I could sleep. She said she’s never seen me look so bad. I don’t remember ever feeling this bad. As far as I recall, last time I had strep was when I was 10, and I don’t think I’ve ever had bronchitis. She talked me into asking Andy to come spend the night — thank good ness I did, because although I didn’t sleep well, Maria was up a lot and it was wonderful that Andy was there to take care of her, so I could just lay in bed.

Andy stayed all day Sunday (as usual), then Sue came at 6:30pm to take the night shift. Again, thank goodness, because Maria was up a lot during the night. Although I feel guilty about disrupting their sleep — at least it’s only one night, and I really don’t think I could do it now.

But, there’s more! Last night my lower left lip was swollen, and this morning, the whole left side of my mouth and cheek was swollen. I came out to show Sue and I think it scared her a bit. So we got Maria ready for school (I was afraid she wasn’t going to make it to school, she looked bad Saturday, not sure about Sunday, but this morning she looked more clear-eyed, so off she went), and then I went back off to Urgent Care.

The doc told me I’m now allergic to Penicillin, so he gave me another antibiotic and something for the swelling. Pure madness this is!! I have a busy week scheduled this week at work. Oh well… I just hope Maria can stay at school all day AND I hope she sleeps tonight AND I hope Sue doesn’t get sick. I just need to take it easy, so I keep getting better. Crazy summer this has been. And not in a good way.

I got a call from the nurse today. She said Maria was really rubbing her nose, pushing on the roof of her mouth with her thumb, and the rash on her face was getting worse and spreading. She said she seems very uncomfortable. All the same things I’ve been emailing the teachers about. duh. So I went and picked her up early from school and took her to our Greek doctor because he’s closer and better with skin stuff than her regular pediatrician. He was puzzled and did a test for strep. Both Andy and I were thinking–”she just had a strep test 1 or 2 Fridays ago and it was negative, so of course this one will be”; and “dude. strep? really? it’s a rash on her face!” So, boy were we surprised when he came back and said it was positive!! Wow. He gave her Keflex, which helps both strep and staph.

I have not been at all careful about washing my hands after touching her face or nose (she had a boil or cold sore or something like that) or finger (similar kind of large pimple-like thing). I’ve been battlling an eye infection. You can’t really see it, but my eye is very weepy (I thought it was a clogged tear duct), incredibly painful, and is giving me a massive headache on the entire right side of my head, from the tip of my brain to my teeth. I went to the doc Thursday and she gave me some antibiotic ointment for it; I wonder if I got it from her stuff??

I know Maria has been in much discomfort for a while. It’s probably why she’s kept me up just about all night 3 times in the past 2 wks. Very annoying! I’m back at work this week and because of my lack of sleep, I feel worse this week than last. And my belly button incision is oozing again, I noticed today. I really need to be careful not to spread Maria’s strep to my belly button. That’s all we need!! Manolis is still having trouble with his nose, so he’s having as rotten of a summer as we are. We’ve only got just over a month now until he returns. I just hope we can all keep it together long enough to see that day!!

We met Maria’s new state coordinator and her supervisor. We like them both. They actually seem to care about Maria!! They talked about her, looked at her, said how cute she is!! OMG! The last 3 we’ve had have hardly even looked her way unless they were walking out the door; they were crazy/scary, not even smart enough to know how smart she isn’t (not to mention not smart enough to understand anything I said), and just plain mean as a snake. We had a very good meeting, and in fact, they’re coming back next week because we didn’t finish. The supervisor is very thorough, which I appreciate, and the coordinator is “new”–she’s back working for the state after being retired for a year. I am so glad! I was beginning to wonder if they hired anyone who cared about the kiddos.

We took Maria to the Out of Africa Wildlife Park over the weekend. We went on the Bush Safari, where they take people out on a bus among the animals. They gave us carrots to feed the giraffe and camel. I gave one to Maria and, after stopping her from eating it herself, I guided her by the elbow and she held it out. The giraffe ate it and Maria got a big grin. So we did it again. She wanted to pet the giraffe, leaning way out of the bus to reach it, but it wouldn’t come quite close enough.

She also watched the antelope and zebras as they walked around us. She tried to pet the camel but wasn’t as interested as she had been in the giraffe.

After that we walked around a bit to look at some of the other animals, but that’s when the sun came out and it got hot. She kind of hit the wall. We had left her food and juice in the car, not realizing it’s a major effort to get back to the parking lot after you are in the park. We had milk and scrounged some food for her but she was pretty tired. We took her to the Tiger Splash and she kind of watched the big cats as they jumped around but they were too far away for her to care much even though we were in the front row.

We wanted to do more but she was pretty tired so we headed back home. I think she had a lot of fun.

I talked with the physiatrist’s nurse again a couple times Tuesday. The doc said we should try the Amantadine and Artane again, starting with Amantadine. He said the Artane should actually make her drink more, but I forget why; and it’s not uncommon to have “GI symptoms” (or something equally vague) with the Amantadine. Nothing specific about swallowing problems. It’s pretty tough when I have to go through a middle person rather than asking the doc directly the questions and follow-up clarifying questions. As it was, I think the nurse called me back 4 times, and I’m still not satisfied with all the answers I got…. We have an appointment with him in a few weeks, so that should help.

We started the Amantadine again yesterday and already Maria has more energy. Although it’s almost midnight, Maria’s still not asleep. I don’t like to go to sleep until she’s asleep usually. Tonight is the first night (so far) in over a week that she hasn’t stuck her fingers down her throat and vomited in bed. I’ve been having her sleep on towels so I don’t have to change the bed every night. I usually wipe as much from her hair as I can, change her shirt, change the towel, and shower her in the morning (although one night I did bathe her at 10:30pm). (Mother of the Year Award)

So far, Maria’s still not drinking hardly anything at school (only 2 oz today…in 6 hours!), but she is drinking great at home, so I guess that’s ok??

Nanny Sue is sick again today; something different than yesterday. I’m feeling fairly exhausted; not sure if it’s from lack of sleep or still recuperating from surgery? I also feel like I’m fighting off a little bug. I’m supposed to go back to work next week somehow. How do single parents do it? Only 6 more weeks until Manolis comes back. Then I think I’ll sleep for 3 days straight!

Things got pretty bad last week. The pediatrician was worried because Maria has been drinking half what a girl her size should be, and that’s been going on for three weeks. The constant vomiting of course makes the problem of dehydration worse. We were pretty sure Maria had headaches from the dehydration as well. Then Friday, Maria got a fever and became very lethargic. Cathy called the pediatrician again.

We drove down there, pretty convinced they were going to put her in the hospital, the night before a three day weekend no less. The doctor told us later she was pretty convinced of that before even seeing Maria. However shortly before we left, Maria started drooling up a storm. The doctor was thrilled, saying any kid drooling that much couldn’t be too dehydrated. Maria also perked up once the doctor came in and her lethargy went away. So we took her home.

Today she’s been drinking really well and has a lot more energy. We still are unsure what this episode was all about, but are glad it’s over. In fact, while I was writing that I noticed she was tugging at her diaper. I checked and she had more pee in that one diaper that she has had in all her diapers over the last three weeks combined.

To add to the fun, Maria has had only one good night’s sleep. And that means Cathy has had only one good night’s sleep. The constant finger down the throat, vomiting, risk of aspiration thing has kept things lively. It’s a lot easier when Manolis is around since they can trade off who loses sleep.

We’ve discontinued the new medicines, and that could be why she got better. She stopped drinking a few days after starting the amantadine, and resumed a few days after stopping it. Coincidence? Maybe. She had such a strong positive reaction in her sensory awareness and cognition that we want to try it again, but we will keep a closer eye on things this time. If that was somehow the cause of the not drinking, we’ll have to figure out how to deal with that.

On the other hand, the Artane never did anything we could see. She might just need a higher dose, but that’s not high on our list of priorities now. Cathy called the doctor who prescribed both drugs but, again, three day weekend so we won’t hear back until Tuesday or so.

And in mildly amusing news, we are STILL finding patches of EEG glue in her hair over a month later.

I’ve had to go back to work a few days this week to monitor a new class we developed. And of course, this is the week that Maria chose to be sick! Yesterday they called me from school to say Maria had vomited a couple times, so I left work to go get her. They said in the 15-20 minutes it took me to get there, she vomited a few more times. I think she vomited a time or two last night, heck I can’t even remember, it seems so long ago. I feel like I’m getting a head cold and I have a wicked sinus headache, so we’re wondering if Maria’s getting a cold also and is trying to pre-emptively get rid of the mucous. (gross, I know)

Today, of course Maria stayed home from school with Nanny Sue. She (Maria) vomited so many times that Sue was traumatized by the time I got home. She said she did laundry all day, bathed Maria twice, everytime she turned her head, Maria stuck her fingers down her throat and puked. Nice, huh? I used to be able to hear her across Maricopa County if she was sticking her fingers down her throat to vomit, but she’s getting much quieter about it — in fact the only time she did it this evening was when she was laying in my lap!!! I didn’t even catch her until it was just a little too late. Sure hope tomorrow fares better. For all our sakes!

Yesterday we started giving Maria Artane, which is similar to Baclofen; both are for muscle spasms, but Artane interferes less with seizures (Baclofen lowers your seizure threshold). Haven’t noticed any changes yet. But if there are any improvements, we should notice them soon. So now in the mornings she takes 4 meds (4ml, 2.5 ml, 2.5 ml, and 2 ml) and in the evenings we add fish oil, so that’s the 4 meds + 3ml — that’s a lot of syringes!! (We’re still using the ReliaDose to give her her medicine. I still think it’s the best invention ever. I heard the manufacturer wasn’t making them anymore, so I’ve been buying them like crazy on eBay!)

Maria’s still doing well at school. Only slept once in the 8 days she’s been there. I went to the school and had lunch with her yesterday. Gives me a chance to chat with her paraprofessional. I met the afternoon para, but only talked for a minute. She’s wearing her AFOs all day and her vest (TLSO) from 8:30am to 12:30pm or so. I told them to keep it on as long as she’s comfortable, eventually working up to having it on all day.

Friday we’re going to look at some wheelchairs. It’s been 2 1/2 months since our first visit; I thought it was all worked out. I should just call the guy with all my questions, but I’m a better emailer. He’s not so much–drives me crazy not to get answers to all my questions. I’m sure it’ll all be clear Friday — like what are the next steps, how long should this take, what else do I need to do, and most importantly, when do I need to get a van. Rosanne asked me if I was going to keep my car. I hadn’t even considered doing that, but since it’s paid off, I just might do that. That way, the van will always be here to transport Maria, we won’t have to worry about whether Manolis or I should be driving it for the day. We’ll just have to juggle the cars on the driveway, the street, and the garage.

And since we’ve had more than 2 or 3 calm days in a row, something had to happen. My belly button incision is infected. It’s been hurting for a while, getting worse by the day. Last night I had myself pretty worked up. Today I spent quite a bit of time on the phone trying to get an appointment; finally got one for tomorrow morning. The redness around my belly button is getting larger, so I traced around it with a pen to see if it gets any bigger tonight. It really hurts. And it looks pretty bad. I’m actually fairly concerned about it, but probably a course of antibiotics and it’ll be ok. I just hope they don’t have to open me up again…. It seems to have given me the dropsies — I dropped 3 glasses of water today. THREE! I never drop glasses of water. Annoying!

A couple nights ago, I heard a noise at 10 or 11pm. Both cats were with me, and it sounded like it was coming from inside the house. So I walked down the dark hall, heard a noise coming from Maria’s room, walked into her dark room, reached down to turn on the night light and to my surprise, there was my cutie patootie, out of bed, on the floor, across the room, next to the freezer. But that’s not all, she had unplugged the freezer!! I guess it was too loud for her…

The rest of the nights this week, she’s slept well. She’s been awake every day at school, has eaten all her lunch, loves the pet rats in her general ed class. We’re using chocolate kisses to encourage her to use the Big Mack switch (communication device), and it seems to be working. She’s getting better with it.

She’s still not drinking as much as I would like, but is eating very well (and not just the kisses. vegetables too.). Dunno if it’s 1st grade, the new medication, or the change in seizure meds, but whatever it is, it’s been great!

Today was Maria’s first day of school. I didn’t get a call from anyone until the end of the school day — amazing! Last year I was with her at school all day the first day to tell them about her (since she’s non-verbal), and I got lots of calls over the next few weeks regarding her actions and whether they were normal or not.

One of her special ed teachers, same one from last year, said Maria had a great day, didn’t sleep at all, ate all her lunch, took her medicine, spent most of the day in the general ed classroom getting to know the other students. The only not-so-great thing is she only drank 4 oz all day (nothing before school, even). She looked great when she got off the bus! Not smiling, but eyes wide open. She’s been in a good mood since getting off the bus and drank a whole 8 oz, which made me feel better.

The speech therapist was the other one who called at the end of the day. Said she met Maria today, she’s so cute, and she’s already fallen in love with her. She’s new to Maria’s school, they’re still trying to decide which therapist will see which kid, but she asked all the right questions and they’re already using the Big Mac switch. See seems much more what we need than the last year’s therapist. I’m feeling so much better about school this year than last! It really helps when many of the adults working with her already know and love her.

Today was my first day alone since my surgery, and I slept all day! Hope that helps speed up the healing.