Archive for May, 2007

Her latest neuro tests

Thursday, May 31st, 2007

Maria had her EEG and MRI yesterday. For the EEG, Cathy had to keep her up until 11 pm Tuesday night, then wake her up and 4 am and keep her awake during the long drive to the hospital. Maria did her gagging thing during the EEG, which is good. We are pretty sure it’s not seizure related but this will prove it.

We went to see the neurosurgeon for followup today, though we saw only the PA. The doctor looked at the MRI and said it was a lot better and that her ventricles were definitely smaller than the last on in October. There had been a little bit of concern back that because that one showed her ventricles had grown a bit, which implied a backup of fluid. However the shunt was clearly working so he wasn’t too worried.

We won’t have the results from the EEG for several days.

Sue had said she was coming back today, but has had to postpone her trip back for another week or so as her mother took a turn for the worse. There’s also a bit of a soap-opera story about her mother’s caregiver, but suffice it to say that he is gone now so I’m not sure what’s going to happen there. So the temp nanny can stay on for a bit longer, but won’t be here next week so Cathy and I will have to take some extra duty.

I think the only appointment next week (other than the regular stuff) is her orthotics fitting on Friday.

As you may have noticed, I’ve added a little thing to the blog that automatically gives definitions to the acronyms if you hover your mouse over them. I’ll add to it as we come across new ones. It works even on old posts, which is nice. It’s a little intrusive though so I might tweak on it later.

The Miracle Worker

Monday, May 28th, 2007

Cathy and I went to see a local production of “The Miracle Worker” yesterday, about how Annie Sullivan helped Helen Keller learn to communicate. It was quite good. The problem with a play like that is that the whole show is carried by a little girl (Helen Keller was 7 years old at the time, though the actress is usually older), and most kids can’t act well enough to pull it off. The girl in this production was outstanding, though not all the actors were.

It was, of course, quite interesting to contrast Helen Keller’s life with Maria’s. Helen didn’t lose her vision and hearing until she was almost two, so had the roots of language already. She didn’t have other problems so could walk, feed herself, and so on. She also had a live-in teacher who did nothing but practice communication with her all day.

Then again, Maria’s vision and hearing are improving. Her father isn’t a big jerk. Medical and therapeutic science are much further advanced. And Maria’s a sweetie, while Helen was a horrible little brat (lots of pent up anger, not surprisingly).

In those days, the focus was on language. Today, the focus is on communication which is not necessarily the same thing. Many impaired kids were assumed to be mentally retarded as well, so there was no effort to actually teach them.

Most chilling is that if Maria had been born back then, she probably wouldn’t be living at home. She’d likely have been sent off to some rat-infested asylum full of dying old people, child molesters, and teen prostitutes with disease-infested babies (like the asylum Annie Sullivan lived in much of her young life). Or, if she were lucky, she would have just been kept hidden away in the basement where the neighbors wouldn’t have to see her. Since shunt surgeries are only 50 years old, she would probably have died very young anyhow.

OK, this post has taken a darker turn than I had intended. That’s the problem with stream-of-consciousness writing.

Anyhow, the parallels were interesting. The family wouldn’t discipline Helen because they didn’t know how. Punishment without a message is just cruelty. If the child can’t communicate, how do you get the message across? We often run into that with Maria. We want to teach her what is acceptable and what is not, but what kind of negative reinforcement do you use? For example, when she is in one of her hair-pulling moods, I put her down and walk away. I come back a few minutes later and she doesn’t pull my hair. Does that mean I’ve corrected her action, or is she just bored and has moved onto a new game?

The special tomato gets a “Special Tomato”

Friday, May 25th, 2007

Maria got measured for her new set of AFOs this week. These are the ones that will be two-piece so she can move her foot while in them. We hope she won’t be so squirmy in these and won’t make horrible marks on her feet. Those marks have faded to brown but haven’t gone away.

The PT loaned us a Special Tomato Jogger that another parent bought but didn’t like. It’s a very nice stroller and much higher quality that the typical one you’d find in Target or somesuch. It’s got a suspension system and air-filled tires so has an unbelievably smooth ride. It’s easy to guide with one hand and is very sturdy.

Overall, though, I was underwhelmed. It doesn’t provide the positioning support she needs. The cargo bag is small and inconvenient. Changing the recline angle involves messing with a strap and is a pain. The canopy doesn’t actually block the sun unless it’s coming from behind you. There is no compartment on the top for keys or a water bottle. It’s also freaking HUGE so wouldn’t be useful inside stores or restaurants.

Next week she has her MRI, EEG, and a followup with the neurosurgeon. She gets a bit of a therapy break Monday since it’s a holiday.

Her new glasses

Thursday, May 17th, 2007

Maria in her new glasses
As you can see, Maria just loves her new glasses.

They didn’t fit very well at first. The main optician was out and the assistant was kind of a moron. She was terribly inconvenienced that Maria wouldn’t sit up straight and the glasses ended up crooked, off center, and the side piece dug into her head. I took her by and got the real optician to fix them today and they fit much better, though they look a little off in the picture.

She really seems to like them. She looks around with this thoughtful expression. I think she doesn’t really realize they are there. From what I’ve seen, mostly she discovers them when sucking her thumb then starts pawing away to explore them. I’ve seen her deliberately take them off but each time she was very tired.

They darken in the sun, which is a relief. We can’t get her to wear sunglasses which is apparently common in kids with low vision. OK, it’s common in all kids, but especially kids with low vision. The sunglasses reduce their vision so they are resistant. We took a walk today and even when they got dark she didn’t try to take them off, probably because she had time to get used to them. Sunglasses are kind of important in Phoenix.

More school, more doctors

Tuesday, May 15th, 2007

Cathy and Maria visited a couple of preschool classes at the public school yesterday. In once class a couple of the kids were being a little rambunctious and Maria was obviously overwhelmed. She did her withdrawal thing where she sucks her thumb, hunches her shoulders, and shuts out the world. The other class was a little calmer and Maria was leaning forward trying to see everything. Cathy was concerned at how much further advanced the kids are, but they were all 1-2 years older than Maria so I’m sure she’ll do fine.

Cathy talked to the PT about Maria’s next round of medical equipment. In addition to the specialized stroller, she needs a bath chair, a walker, and possibly a small treadmill and another stander. The bath chair is because the nanny is diabetic and has had a couple of incidents of light-headedness, both when Maria was in the bath. That’s a bad time to faint.

The walker would be one that holds Maria in a suspended seat so she still has to exert trunk and head control. It fits over a small treadmill and the treadmill’s movement, as slow as 0.1 mph, helps stimulate the walking action. Apparently Sears used to have one a few years back that was perfect and only about $200. That’s been discontinued so now the only pediatric treadmills are available from medical supply places for about ten to twenty times the cost.

Then we took Maria to the pediatrician. The doctor wasn’t concerned about Maria’s weight since she has a history of erratic weight gain. She was a bit concerned about the gagging thing we’ve talked about. She thought it might be reflux, but the fact that Maria does it even when sitting up means that might not be it. Basically, she’s stumped just like everyone else.

Maria developed a scaly reddish-yellowish patch on her chin that the doctor thinks is impetigo – *sigh* another new word. It’s a fairly benign skin infection but the doctor neglected to mention that it’s apparently very contagious! Even touching her clothes where the sore touched can spread it. Lots of hand washing will be going on in the near future.

This morning she had her preschool evaluation. She qualifies for the program and all the therapies they offer, no big surprise. There is still the meeting for her IEP (Individualized Education Plan) and possibly other evaluations before then.

Today she gets her new glasses and has her first session with the temporary nanny. One of the school people knows her and said she was very good so that’s comforting.

Manolis got a job very quickly so he’s working now. Interestingly, his blood pressure is down! The fact that he went from an hour-long commute through heavy traffic to smell paint fumes all day, to a minute’s walk along the beach to board a ship and tour the Greek islands every day probably has something to do with it. However he’s pretty much miserable there and can’t wait to come back.

Evaluations, glasses, and medical tests

Sunday, May 13th, 2007

As you can see from Cathy’s last entry, last Thursday was a busy one: Maria’s annual neurosurgeon visit, her bi-weekly feeding therapy, meeting the temp nanny, plus her vision evaluation for school. Exhausting for all concerned.

The vision evaluation was interesting. The woman was able to pick on Maria’s subtle cues and seemed well versed in CVI. Her daughter is blind so she has first hand knowledge. She teaches at the Foundation for Blind Children and works with the school system so she may be around Maria regardless of where she ends up going to preschool. It’s almost certain she’ll go to public school since she’ll get more from being around a mix of kids than just vision impaired kids.

The temp nanny has a two-year-old granddaughter she takes care of a few days a week. She’s going to bring her by on one of the days each week she takes care of Maria. It will be good for Maria to be around another child more, but we are a little concerned. Maria is a handful and watching her PLUS another little girl would be tough. Plus the house isn’t particularly child-proofed since Maria isn’t mobile, so Cathy has a little work to do before that first day. Since she certainly doesn’t have enough to do.

Cathy ordered Maria’s first pair of glasses last Wednesday. They will be ready soon, maybe even tomorrow. I’m definitely curious how Maria will react to them. Her regular vision therapist says that kids that age love wearing glasses and we’re hoping Maria won’t fight them.

Her foot blotches are still present, although a lot better. She gets fitted for a new set of braces this week which will be two pieces rather than a rigid boot. This will allow her to move her ankle. The orthotist thinks that was the problem with these. Maria hates being still so would wriggle her foot around and that’s why she got those funky marks.

This is another busy week. She sees the pediatrician tomorrow because she’s losing weight again. She has her full school evaluation Tuesday. She’ll have that MRI and EEG this week. She gets her glasses. Something else is happening Wednesday but I can’t remember what it is. Phew. I get tired just writing about it.

Oregon Coast 2007

Thursday, May 10th, 2007

Maria and I left early last Thursday morning (1 1/2 days after Manolis went back to Greece) for the Oregon Coast. It’s our annual girls weekend (JCND, that’s Just Chicks, No … well, you get the picture). It’s our 10th anniversary (tho’ I missed a few in the middle), and Maria’s 4th one (she was in my belly for her 1st one). There were about 10 women and Maria this year. Mostly friends from Klamath Falls, or friends of friends. Maria really enjoyed the sand on the beach, loved being in the middle of things–although she did get a bit overwhelmed at times and took long naps each day to get away from all the chatter.

Poor little Maria got no new toys and no new clothes in Oregon (shocking, isn’t it??), but I did buy her a wonderful drum from Bolivia. They’re shipping it to us, didn’t want to deal with carrying it on the plane. Can’t wait to get it!!

Auntie Carolyn last saw Maria in November and was amazed at how much she likes to stand, how much better she’s sitting, her head and trunk control, many improvements. The other women seemed a bit scared of Maria last year, but almost all of them interacted with her this year. Someone told me that I seemed more relaxed with her this year, too, so that probably helped them not be afraid of her.

I was hoping our trip would cure her of her newest bad habit–she opens her mouth very wide and acts like she’s gagging or choking. I think she started it as an attention-getter, but often it gets out of control. She sometimes throws up when she’s doing it, but the worst is when she gasps for air, like she’s having an asthma attack, and her eyes roll up into her head, and she looks very distressed. It’s bad enough when she does it in private, but in front of others it’s really awful; they don’t know if she’s in trouble or being tortured or what. We asked the neurosurgeon and feeding therapist about it today. Feeding therapist is at a loss (like us); neurosurgeon wants to rule out seizures or shunt problems, so he ordered an EEG and a one-bang (quick) MRI. Yippee.

Uncle Andy came to get us at the airport when we got back from our trip. When we got to the house, he put her in her high chair, and she squinted her eyes and got a huge, sharp-toothed grin. It was SO cute!! I think she was just so happy to see him, she just had to grin! That night when I put her to bed, she just layed there for the longest time, quiet, with her eyes open, happy to be at home in her own bed.

We met a substitute nanny today (my co-worker’s wife), who’s been an aid for special needs kids at a nearby preschool, so she’s comfortable with Maria’s “issues”. Our regular nanny has to go to Hawaii for a few weeks to help her mom out. Bad timing (busy times the next few weeks), but when is a good time to have a sick mom?? Never.

It’s awfully quiet and lonely at home without Manolis. I think Maria really misses her daddy. We talk most days. I called him last night right when I put Maria to bed because she just seemed out of sorts; it did seem to help. When he’s on the phone, she tries to grab it and lick it–just like what she does to his face!!

Daddy’s on a Plane

Tuesday, May 1st, 2007

Well, the day has finally come. Manolis went back to Crete today until early October. We’re toying with the idea of going to visit in Sept or so, but I’m not sure we can afford it. We’re going to remodel the kitchen and of course that’s turning out to be more expensive than it started… Sure was tough leaving Manolis at the airport, for all of us. It even seems like Maria knows what’s up. She was very sweet and cuddly all day today, slept all afternoon, then seemed sad or angsty this evening as we went to the airport. She must know I’m typing about her, I just heard her yelling back in her bedroom. Hmmmm, maybe we might be sleeping together tonight afterall! Let’s just hope the next 5 months passes by with no great disasters. Manolis said maybe Maria will walk up to him at the airport when he returns; wouldn’t that just be something!

Tomorrow it’s back to work to monitor/evaluate a class, then EARLY Thursday morning, the princess and I are headed up to Oregon for some girl time. It will be our 10th JCND anniversary!! (just chicks no dicks) It will be Maria’s 4th (her first was when I was about 4 months pregnant with her). We still need to get her glasses, plus a functional vision assessment, plus visit 1 or 2 classrooms before May 15 when the occupational therapist, physical therapist, speech therapist, school psychologist, and head of preschool special ed will descend on our house and evaluate Maria. Gulp! We see all her progress and think she’s doing so great, but when she’s “judged” against her peers by people who don’t know her, well, let’s just say they tell me things that no mother should have to hear. Never a dull moment.