Archive for August, 2010

Starting Another New Medicine

Wednesday, August 25th, 2010

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!

Escape Artist

Wednesday, August 18th, 2010

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!

1st Day of 1st Grade!

Monday, August 16th, 2010

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.

New Medication

Saturday, August 14th, 2010

We started Maria on a new drug this week — one of the ones her physiatrist prescribed in March. It’s Amantadine, originally an anti-viral and for Parkinson’s patients. It’s supposed to help her hearing and cognition. Monica (my friend visiting from WA to help me out) and I noticed a difference almost immediately! She seems happier, more mobile (rolls/army crawls across the room to reach me or someone else), pushing up to a crawling position more, she almost sat up from laying down once. Lots of things!

Thursday evening we went to the school for “meet the teacher” night. We met her new general ed teacher, special ed teacher, and nurse. Didn’t meet the new speech therapist. Found out she’ll have the paraprofessional we liked from last year, plus another one they say we’ll like. All-in-all things went well. Her gen ed teacher placed Maria at the end of a table near where they do reading. She seems to be integrating Maria into the class as a forethought, rather than an afterthought like her Kindergarten teacher. We liked her, but this one seems better (or perhaps I’m more relaxed?). The other comforting thing about this teacher is her husband and brother have seizures, which isn’t good, but she’s not as freaked out about Maria having seizures as some teachers might. Her sister is Maria’s school physical therapist, so she’s had more experience? with special kids.

It took Maria a little while to relax when we went to the school, but when she saw Sara (special ed teacher from last year), she was happy; and when we got home, she was in a really good, goofy mood. It was cute, really.

Friday I spent about an hour with her new nurse giving her all the prescriptions Maria might need for the year, when to take what, and how. She’s an RN, used to work at another school, very experienced. Seems like she’ll work out well.

Monday I’m going to send Maria off to school on the bus alone. (Last year I spent the entire 1st day with her in school by mutual agreement. And I rode the bus to school with her when she started riding it a couple weeks after school started. — ahh what a difference a year makes!). I knew last year would be the intense year; now that I know some of them and they know me and Maria, we’re all a bit more comfortable!

Monica left today. I was sad to see her and my sis go. I’m still not ready to lift Maria up, so tomorrow night I might have her sleep on the floor…although that could put her off a bit the night before school…. We’ll see. Nanny Sue is going to come every morning next week to get her ready for school and will be here when she gets home until she goes to bed. Surely by next weekend, I’ll be ready and able to lift her again? I have a follow-up appt Wednesday, so we’ll see how that goes. I’m still feeling quite punky and am not convinced the pelvic pain is gone, but trying not to be too depressed too soon.

Mama’s Surgery Done

Wednesday, August 4th, 2010

I went in for my pelvic surgery yesterday, thinking it was going to be out-patient. That morning they even said I’d be in the recovery room for 1-3 hours. For some reason, they decided to keep me overnight, so we had to scramble and have nanny Sue stay the night with Maria and Rosie stayed with me in the hospital–none of us with jammies or toothbrush or anything. Kind of annoying. As it turns out, I’m really glad I stayed in the hospital with a morphine drip because I was in pretty wicked pain and w/o the morphine, I hate to think how I would have felt.

They found no endometriosis, but took lots of samples for biopsy, only found one spot of scar tissue, which they removed. The primary thing he did was cut some nerve that goes to my uterus, so if my primary problem is pelvic pain from cramps, then I shouldn’t be able to feel them anymore. Downside is I wouldn’t feel contractions if I got pregnant, but since I’ll be 50 in October, that shouldn’t be an issue. My sister was pretty excited about them doing that. I don’t know what I am…. All I know is the bowel prep was much worse than I remember it the past 4 or 5 times I’ve had surgery for my pelvic pain, and I’m in a lot of post-surgery pain. I have 5 incisions, which look big to me, and a very swollen belly. I got no sleep last night because everytime I nodded off, I breathe so shallow that the apnea alarms would go off waking me & Rosanne up. They gave Rosanne earplugs, but I didn’t use any; then at 2am I had a mini-nervous breakdown because I couldn’t sleep and I was in so much pain, so they gave me a percocet on top of the morphine and oxygen through a canula, and that seemed to help a bit.

It’s going to be hard not to lift Maria for at least 2 weeks. I sure wish Manolis was here, but with Rosie here for a week and my friend, Monica, for another week, and Sue and Andy most days, it should work out. It’s just a bit more complicated with sweet Maria around….. All I can say is thank goodness it’s over and I sure hope it worked….