California Dreamin' & Solo Sleepin'

Maria & I went to California for almost a week to visit Auntie Rose, Uncle Paul, and cousin Amelia. Amelia is a year younger than Maria and although she has played with other kids before, the other kids initiated the play. So along comes little Miss Maria who doesn't initiate and Amelia didn't know what to do except be shy and cry whenever we brought Maria near her. By about the 4th day, Amelia would look at Maria, but no interactions and huge jumps in development like I was hoping for. Oh well, maybe next time.

We had a pretty good time, considering. Maria was sick quite a bit of our vacation, she puked a lot, had a fever a couple of the days, and slept a lot, so we didn't get out and do as much as I wanted to. We 3 girls (Rosanne, Maria, and I) got somewhat caught up on our sleep. Maria slept really well at night, and consequently, so did I. Rosie's been overworked lately, so the extra sleep helped her, as well.

Flying is a bit of a challenge with Maria, but it gets easier each time. I get more experience holding her while folding up or down the wheels of the Sit 'n' Stroll (stroller/car seat combo), and more assertive asking the alleged flight attendants to help me because I can't carry Maria and the car seat down the aisle at the same time. It's amazing how snippy and unfriendly they can be--do they not realize they're supposed to attend to their paying customers??? It helps that Maria is a good traveler!

So now for the most exciting news!! Maria, at almost 2 yrs and 8 months, finally is sleeping in her own room!! While we were gone Manolis moved the crib into her room (and cleaned up the many puddles of cat puke that were hiding under the crib...). She's slept in her new digs only 2 nights so far, but she's done great--she's falling asleep faster and staying asleep longer than when she was in our room. Plus, now I can use the treadmill at 9pm and play on my laptop when I go to bed w/o bothering her. I just hope this blissful calm lasts.

Maria sucks! But in a good way.

Maria's off visiting her Aunt Rose right now and gets back tonight. She went through something yucky last weekend and they had to cancel the craniosacral appointment.

Last Thursday I took her on a walk down to Starbucks. I brought the straw sippy cup since she's been getting better at that. I filled it up and handed it to her. She grabbed it, shoved the straw in her mouth, and started gulping down. She got nine ounces from that cup while before she's never gotten more than two! It was very exciting. I honestly wonder if she might get completely off the bottle soon. The sippy cup is easier for her to handle and she seems to like it.

She's gotten better at back-and-forth babbling with me which is an important milestone. I think she MIGHT have made the milk sign the other day so maybe she's starting to get the hang of this communication thing. It's just so hard to tell sometimes.

The PT gave us some tips on getting her to sit that seem to be working. She sits better when she has something to lean on like a table. We have this little lap table that is the perfect height for her when she sits on the floor and she can sit at it for long periods when she wants to. We give her stuff to play with to keep her amused and she can manipulate things while keeping herself supported with her elbows.

We are concerned with some things that have been going on here in Arizona. We had been thinking about sending Maria to the Foundation for Blind Children for preschool this fall, which is a private charity. Well, there may not be a preschool program. The Arizona School for the Deaf and Blind, which is a state agency that gives money to FBC, recommended to the legislature that they cut off funcing for the FBC and the legislature agreed. I'm still baffled why a state school for the blind would be sabotaging a charity for the blind and there is apparently all kinds of internal politics at work here. The news stories have been a little confusing. The legislature has cut their funding and it's too late to get it back, but they are saying they can still get funding from the school system. However that would be on a per-child basis rather than a large sum for several children, which is likely to make it harder for them to plan their preschool program. It's all a mess.

Honestly, I feel sorrier for the employees than the kids. The kids can go into the public school system, but the FBC employees may be really screwed. Since they were being funded by the state they were getting state benefits, but not any more. People who've been working there twenty years just saw their state pensions go up on smoke a matter of months before retirement. Yikes!

Cathy had already been leaning toward putting Maria into public school rather than FBC anyhow, since her school district prefers getting the special needs kids early so they can better evaluate their needs by the time they hit kindergarten. So either way, this probably won't affect us much, but it's still a bummer for a lot of other people.

Maria can't sit still

Maria seems to have made a big jump in her vision. The way she responds to objects and people is different and I can't really explain why. I think that's a big part of why she's so motivated to move around.

Cathy and I were talking about Maria's sitting (or lack thereof) last night. We've come to the conclusion that Maria is actively fighting learning to sit. It's not that she can't; she won't. Sitting is passive and she wants to be active. Rolling, army crawl, and standing are much more interesting to her. We need to find the right motivation to show her sitting is good.

She had lost interest in standing for a while, but lately she's back to it. She also keeps trying to move her feet and walk, though that's quite a ways off. I was wondering this morning if, as her vision improves, she is more aware of people and the way we get around. Hydrocephalic kids often have trouble with gross motor skills and perform better if they have a younger sibling they can imitate (shh - don't tell Manolis since he still wants another baby). Maria may be observing us walking and is trying to imitate.

But, since every silver lining has a cloud, there is one problem with her standing. She is standing on her tiptoes rather than flat-footed, which is not good. At rest we've been noticing she is pointing her toes rather than keeping her ankle bent. We may need to start keeping the AFOs on her for periods during the day rather than just at night. But since they interfere with crawling and other activities, it's a tricky balancing act of too much vs. too little.

She's getting better at drinking through a straw. She seems to be a bit bored with the open cup and doesn't drink from it as well as she used to, and I suspect the lack of control is part of the problem. We have a sippy cup with a built-in straw that she is able to get a little fluid out of and it seems like the best drinking skill to be pushing since it combines independence with good oral-motor skills. She still gets all but a couple ounces a day from the bottle, and bottle feeding doesn't build up the mouth muscles in the right way.

We are concerned with her lack of communication skills, particularly the way she doesn't really seem to even hear voices. There are a couple of words she sort of might possibly kind of understand, but even those tend to be reinforced by actions so I'm not sure it's really the language. The music therapist says she has a couple of kids who can't use normal speech, but they can converse through singing. Music comes from a different part of the brain than normal speech and speech therapists have often been puzzled by the fact that severe stutterers can often sing just fine (anyone remember Mel Tillis?). We are glad she's getting music therapy since it really seems to help, and we like the new music therapist.

Maria sees the craniosacral practitioner Sunday and that will be interesting.

Making Faces

Ha! I can tell that Andy is working more because recently I've been keeping the blog up more than he has (for once). Plus there was that pesky computer mishap he had, but I won't dredge up ugly memories... Maria is doing something very cool lately. She's been smiling a lot more, especially when we stick our faces in her face. She sometimes grins at her dad when he's not even touching her! Sue (nanny) told me today that there's a face Maria only makes when I'm there--she (Maria, not Sue) opens her mouth with a big grin and squints her eyes and wrinkles her nose. The cool thing is that she appears to be mimicking me! That's one of those things that babies are supposed to do when they are very young, but she's never done it much and certainly not consistently. But she seems to do this over and over and over again. It's very cute!!!

The other thing she's been doing a lot more is moving. She's been rolling a lot and lately she'll be on her tummy and grab the edge of the rug or blanket or sheepskin to pull herself along; kind of like an army crawl, but more like an army pull. We're having to be much more vigilant now about not leaving things around that she can choke on.

The transition meeting with the school district is scheduled for early April. gulp! So many questions, so many insecurities, so little time.

One of the latest things I'm freaking about is Maria's lack of independent sitting ability, so we've been working on that a lot. Our other emphasis has been communication. That's why her making faces is so exciting. The therapists all have lots of ideas about what to do to enhance communication--use sandpaper as a tactile symbol for "all done"; put photos of her bottle, food dish, toys, diaper, bath stuff around and see if she notices them and points to the bottle when she wants milk; put the pictures in a book and show them to her, give her choices; put the actual objects in her little enclosure and respond if she grabs the dish or bottle; use a "Big Mac" switch that she can push and we program it to say something, like "I'm hungry" or "I'm wet"; take her canvas drawers and fill one with kitchen things, another with bath things, another with bedtime things, etc, and let her play with them. All of this sounds just fine and dandy, but which will and which won't work? Is it worth the effort? What's the point? ya know?

We're going to meet another energy healer this Sunday. She sounds great on the phone. She does craniosacral work, which I've been told might work on Maria, and Qi Gong like the chiropractor we've gone to who did magical things. So we'll see. I'm cautiously optomistic and moderately hopeful. What the heck?!