Maria Rose

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!