Maria Rose

Yesterday in school, Maria had 2 parties! One in the special ed class (learning center) and one in her general ed class. I went to the 2nd one, but couldn’t make the 1st one. For the one I went to, they had 5 stations set up. At each station they did a craft project (except for one table, where they just ate). Maria did pretty good with some of the things, but the height and position of the tables doesn’t make it so conducive to her being at the table and not in the way. In fact, when it came to making a mask, the aide just did it for her w/o trying to involve her.

Maria was acting tired at times, but I noticed when she was working on a craft project, she was awake and engaged. So I mentioned it to the aide as a hint to keep her busy and engaged, rather than ignoring her, but I’m not convinced she got my subtle message.

Today we had our usual Jin Shin Jyutsu in the morning and occupational therapy in the afternoon. The Jin Shin went very well she said (I always step out and do a 30-min errand; today’s was to replace the Halloween candy that I bought but have been eating all week).

Maria tried the bike again during OT; this time I brought my camera and took a bunch of videos and photos. If it wasn’t so difficult, I’d add some video to this blog entry, but Andy says it doesn’t work well or something? I think one main difference in the $2500 bike and the $800 one that we want, is with the expensive one, you can steer easily from the bar in the back. I think you’re only pushing with the one we want and if you want to steer, you need to reach around and steer with the handle bars up front??? Seems awkward! I need to check with the comapany maybe or see if the physical therapist has any knowledge of them. It is so cool seeing Maria ride a bike!!

This evening, I put the rest of her costume on (she was a pink leopard peace princess in the day with her peace sign socks and pink leopard dress), which consisted of her dress, plus glitter, lipstick (which she LOVES!), tights, fairy slippers, and wings — so by night that would make her a leopard fairy. Bet you’ve never seen one of them!!! I actually took her trick-or-treating door to door tonight. In past years we’ve either just walked around, but no trick or treating, or just sat outside at the neighbors’, like last year. I’m not sure how much she enjoyed it, but she sure was snuggly and content afterwards when we were sitting at the neighbors’! Some parts of our neighborhood, like the houses west of us, really like to dress things up in the yard and have fun. Next year we should probably do a little bit more.

Maria got over her fever issue a day or two after she started the Tamiflu. She missed a week of school and did her usual “2 steps back”, so it’s taking a while for her to get back on track and improve her strength.

Last week we had our first parent-teacher conference of the year. It was a fairly uneventful chat with the general ed teacher. What could she say, really? Maria’s not in her class much. She did say that Maria got excited about carving pumpkins the day before (she does love that goo!).

2nd I talked with the speech therapist. She came up with yet another scheme for the (damn) Tech Talk device. It’s 4 messages now–in fact it’s back to one of our first schemes. I really wish we had someone to help us more with it (more often, more consistently). So frustrating. Got a call from one of her teachers last night. She said they were trying to use it at lunch and Maria kept knocking it off her lap. One of the problems is that none of the adults in Maria’s life is very excited about the TechTalk, so how the heck is she supposed to be successful with it?

Finally, I talked with one of the special ed teachers. We talked about how I can stay more informed about the important aspects of Maria’s day. The other sp.ed teacher made a visual schedule for Maria that she wanted me to check out. It’s a cookie sheet with a plastic fork, straws, tiny book, etc stuck to the cookie sheet with a magnet. The intent is for Maria to touch and see what she’s going to do next. They’re really trying!

A few weeks ago, I went to Raising Special Kids for a consult on Maria’s IEP (individual education plan). She thought it looked pretty good, thorough, detailed, adequate minutes for therapies. When I told her of my frustration that I’m not getting enough info from the teachers and therapists about what Maria does each day. She suggested I call a meeting with all 10 people who deal with Maria, but I don’t feel comfortable/confident enough to do that, so she gave me the name of a woman who works for the school district that facilitates meetings with parents, teachers, and the district–perfect!! When I called her, she was super nice and helpful and friendly. We’re getting together Monday morning. Maria will be at this school for 7 years, so we’re well on our way to a good relationship. Sure aint easy, though!!

During occupational therapy last Saturday, we tried an adaptive bike. It was so awesome!! It’s a Freedom Concepts Discover. The child is strapped onto the bike–foot on pedals, lap belt, chest strap, and butterfly chest harness. The adult pushes and steers from the back. As the tires roll, the pedals move, so the legs move and the muscles get stronger. We loved it! But, it’s $2500!!! I found another brand, a Proseries 1416 Amtryke that’s “only” about $700-800. I think that might be what we want for Christmas. I just need to check with her physical therapist and see what she thinks.

Hippotherapy starts next week! (same day as home PT, and she’ll have to miss a bit of school, and with a different therapist, but, it’s hippotherapy!)

Still don’t know what’s going on with Maria. She’s still having high fevers at night. She slept all day today. Doc said she had a high white blood cell count. He started her on Tamiflu (which required calls to several pharmacies to find some, since our typical pharmacy just ran out this morning). Hmmmm. Tomorrow she’s getting a pig flu shot. Poor baby…

Every girl needs to be a little mysterious….Maria continues to do her part! Ever since Saturday, she’s had 101-102.6 degree temps for several hours a day or evening. She doesn’t have many other symptoms–she’s still eating and drinking, although less than usual and choking more; mostly sleeping ok; sometimes seems like she’s in a good mood; mostly breathing well; not congested. We went to the doc today, got x-rays because I assumed it was her typical aspiration pneumonia, but the x-rays were clear. They took blood, so he’ll check that tomorrow. At this point, it’s a mystery, no explanation for days of fevers. Lots of kids are out of school with fevers, so maybe it’s what they have?

And in the midst of all this, Daddy’s home!! He got home yesterday, it was my birthday gift. Although we didn’t do our dance (Maria and I), I did help her walk to him, which was pretty cool. Of course, I forgot my camera, but that’s ok because I don’t know how I could have walked with Maria and taken photos. Still, it’s a shame. Every time Manolis touched or hugged her yesterday and today, she made a gasping/squeaking noise (hard to explain). We think it’s excitement!

Now balance is restored in the house. And the yard looks better. And I have someone to cook for me again. Tonight he made giant beans, a Greek specialty. They’re soooo good and so good for you too! The Cretan diet is truly among the most healthy in the world!

Maria is a funny girl! Late last night she yelled, so I went in and she’d pooped. Isn’t that wonderful that she’s been communicating so consistently lately?! I know that when she’s in bed and yells, it’s something–usually a poopy diaper. I’m so glad that she lets me know so she doesn’t have to sleep all night with a dirty diaper!

Tonight when she yelled, I went back and holy moly–she was on the floor, with her foot still in bed tangled up in the sheets. Thank goodness it’s a low bed so nothing (body parts) was broken, and hopefully not twisted (her leg). The most shocking thing is her bed rail has only about 8″ of space between the rail and the foot of the bed, so she crawled from the head to the foot and through the gap (looking quite pleased with herself, by the way). The gap at the head of the bed is more troubling, it’s narrower and she could get stuck in it. So I’m back to stuffing pillows in the gaps…

Monday our appointment with the neurologist went well. He “didn’t care” if Maria had seizures or not last week, didn’t want to change her meds. That’s what I like about him, he doesn’t overreact. He increased her dose of emergency medicine and ordered blood work for med levels and vitamin levels (probably not the right terminology). We told him how Maria was stiff and jerky last Wednesday and I told her teachers it seemed like she was getting ready to have a seizure, and voila Thursday and Friday they tell me she’s having seizures. He said there’s no such thing as “getting ready to have a seizure”. I again asked him if we were missing anything since his specialty is seizures; he said by the time a child gets to this age, there aren’t usually many new surprises. He went through the usual things associated with CP and hydrocephalus (don’t recall the details), but he feels confident that we’ve got everything under control. He said to come back in a year unless we feel the need to come sooner. He also recommended Maria get the H1N1 shot since she’s at such high risk and to watch her swallowing/aspiration/lung health; said she looked well fed and wasn’t as stiff as many of the kids he’s seen with similar issues. All-in-all it was a good appointment. Nanny Sue came with, which was helpful.

Today I kept Maria out of school (it was only a half day) to come to the appointment at Raising Special Kids. I met with Vicki to go over Maria’s individual education plan (IEP) to see what she thought of it, are there too many objectives, too few minutes with therapists, etc. I’m feeling frustrated with the amount and types of communications I’m receiving from teachers and therapists–am I expecting too much? She has a similar child who’s 13, so can relate. She gave me some good suggestions and resources. Raising Special Kids is a very good organization, quite helpful and caring.

From there, we went to sign the papers to refinance the house — 4.8% fixed (down from about 6.25%!!), which will decrease our mortgage payments by about $100/month!! Gary Ogami is the best mortgage broker. if you’re in the market and live in Phoenix.

Last night Maria went to bed by 7pm. At 9pm she yelled, so I went back and she was burning up. The odd thing is that her torso was hot, but not her extremities or head, but as time went on (10 min or so), her head, hands, and feet were also hot. Her temp was about 102.5. I called the Blue Cross nurse line and she basically said to call back if it got worse. Maria was stiff and jerky, clearly uncomfortable from being so hot, but she was drinking like crazy! In 2 hours she had 2 bottles and I changed her diaper about 3 or 4 times! So at least she knew she needed to flush her system.

At 11pm she yelled again. I went in there and this time she’d vomited and had a big stinky poop (hope you’re not eating as you read this…), so I got her all cleaned up and she slept for the rest of the night. Her temp was down about a degree by then and she didn’t seem so agitated. She slept until 9am.

This morning when she got up, she was smiley and fine. When we all thought about it, we think she was just ridding her body of toxins as a result of her Jin Shin Jyutsu appointment Saturday morning. We hadn’t been there in a month. Debbie said the session went really well and she was able to do some flows she hadn’t done before, like a stomach flow, which helps you digest your thoughts and get rid of bad thoughts. Strange, I know, but it makes sense. Let’s just hope next week is better than last week! Tomorrow we go see the neurologist. We’ll see what he has to say about this seizure business.

The school reported that Maria had 3-4 seizures on Thursday. They called Cathy who told them to administer her emergency medicine and Maria stayed at school. Then yesterday they called saying she had another 3-4 seizures so she got another dose of emergency meds and Cathy took her out of school early. We’re concerned and have an appointment with the neurologist on Monday.

From what they’ve described, I’m not convinced the episodes were seizures. Maria’s been constipated lately and she stiffens when she gets abdominal cramps. I’d rather they were oversensitive to the possibility of the seizures rather than ignoring them, but the symptoms they were talking about didn’t fit the episodes we have seen. They mentioned one of the seizures lasted over a minute, which we haven’t seen since she started meds two years ago. They were witnessed by several people who said they were “definitely” seizures, but even a neurologist can’t say whether something is definitely a seizure without an EEG.

Other than being zoned out by the drugs, Maria did well yesterday. She ate like crazy, better than I’ve seen her eat in a long time. She was a little cranky on and off but mostly was all smiles. We were at Johnny Rockets yesterday and I was feeding her some carrots. The instant the chocolate shake hit the table, Maria focused on it and refused to eat anything else. Whatever other problems she has, the girl knows her chocolate.

Maria goes back to the Jin Shin Jyutsu lady today for the first time in a month. We are curious to see what effect that will have. It’s just a few days until Daddy comes home and I’m sure that will make Maria feel better as well.