New speech therapist

No, there isn't yet another new speech therapist, but I did get a chance to meet the latest one today. I like him. He seems to know what he is doing and, as Cathy said, he's really keyed into Maria's subtle cues.

Maria's been making this lip-smacking sound, which I think started on his first session. She seems to be actually trying to communicate with it. I'm pretty sure it means "I want my bottle", "I want my pacifier", or possibly "Listen to this sound I can make". She also occasionally seems to do it after we do it, though not consistently enough for us to be sure whether or not it is coincedence.

Maria's been getting these red bumps on her arms and legs. She had a bunch of them on Thursday and has what seems to be a new crop of them today. My best guess is mosquito bites. I actually thought of chicken pox and so did the nanny, but she looked at them and they are not pox-like plus chicken pox starts on the trunk (she has none on her trunk).

She's gotten really good at supported standing. She still arches her body in strange ways; in particular, she still likes to crane her head back. But she holds her weight on her legs and just requires some input to correct her balance. She's much better at self-correcting her balance, especially while sitting. I keep having to force myself not to catch her too quickly so she'll have the chance to catch herself as she starts leaning over. She can sit unassisted on the floor for several seconds at a time, and does great in chairs. She used to flop out of her mini-papasan chair, but now she can stay sitting in it for a long time.

9th Nat'l Hydrocephalus Conference

I just got home from Baltimore, MD. My sis & I went to the Hydrocephalus Conference. My first time away from Maria for so long -- she looked older when I saw her today! The conference was good. Very intense and emotional, but good. Gave me several new things to worry about (how will Maria get insurance when she's over 21, will she need shunt revisions or eye surgeries like many of the other kids, transitioning to school, transitioning from child to adult medical care), but I also met some very nice people and learned some good things.

The first session I went to was mothers of kids w/hydrocephalus. I was in the group with kids under 5. Each person told the story of their child, many of us were on the verge of tears, then Rosanne said she'd tell the story of Maria because it was probably too hard for me to talk about it, and I started crying, which got most of the other women crying. From that session I learned that moms of kids under 3 were still very raw, whereas moms of kids age 4 or 5 or older were much more stable and positive. Many of the stories gave us hope. It was a good move to have that session be first, because we saw each other and talked more as the conference went on.

- We learned a lot about the anatomy of the brain and what happens when you have hydrocephalus. They had a model of a brain that you could shove a shunt into to see how it felt, but I skipped that experience.
- Learned how to lobby the Congress to fund more hydrocephalus research. Very good, interesting session; then the speaker (Congressional staffer)'s son, who's 10 and has hydrocephalus, got up and sang What a Wonderful World, and there wasn't a dry eye in the house...
- Got a summary of the National Institute of Health's 1st conference on hydrocephalus last Sept, where they brought together a bunch of doctors to discuss research that has been done and needs to be done -- interesting, aggravating, and hopeful. Apparently, hydrocephalus is called a rare disease because it's not cured by drugs so the pharmaceutical companies don't do research on it, and shunts are effective so doctors haven't done much additional research or improvements.
- There is a web-based personal medical records site called followme.com; they customized it for people with hydrocephalus. It's called myhin.org (hin = hydrocephalus information network). You can store all medical data, records, scans, etc so they're available to all medical professionals who have access to the internet. Pretty awesome.
- I walked out of the shunt infections and malfunctions session, very informative, but way too graphic for me (multiple surgeries and tests, sticking needles in the brain to drain fluid, ahhhhhh)
- They discussed how to effectively get a 2nd opinion.
- Listened to a panel who all have hydrocephalus (49-year old man who's had it since he was six, didn't have a shunt revision in 40 years, but has had 20 or 30 or more? in the last 3 years; 24-yr old woman who's had it since birth, lots of issues but she's very successful now; a 73-yr old who was in a wheel chair, incontinent, had to be fed, they discovered she had hydrocephalus and now she's walking, talking, dancing -she was hilarious, her goal is to get Oprah to be the spokesperson for hydrocephalus because "she can probably get the word out"; and a 19-yr old boy who's had it since birth, has had some troubles, but seems to be doing very well now). It was pretty uplifting, yet freaky at the same time hearing how many issues they've had.
- Heard from a lawyer about what we should do to take care of ourselves and our children, especially special needs children - very informative.
- We went to 2 social events - a welcome dessert and the dinner/dance. We got to know some of the mothers of young kids better at these events. They're from Minnesota, Maine, and Louisiana. That was one of the best parts- talking with people that have similar issues, not having to be defensive or cautious, able to talk openly about hopes and fears. Of course I was constantly on the verge of tears (being the emotional one...)

I suppose I'll have to go all the conferences (every 2 years) from now on. Maybe I'll bring Maria next time. The hotel was very nice, super comfortable beds, nice view of the harbor, close to great shopping and restaurants, lots of live entertainment at the harbor in the evenings, and plenty of good places to walk around the harbor.

So, overall it was a good weekend. I would not have wanted to go to it alone, I'm glad I had Rosie's support. Maria and her local grandparents had a good time. Manolis had some time off from the girls. Andy was with his buddy from NM. Now it's back to the ol' routine: work and therapies.

Speech at Home!

Today was Maria's first home-based speech therapy session. Home-based speech therapy is incredibly rare in Phoenix. I am so grateful that Maria charmed him into coming.... It went very well. The therapist is a big guy with a strong voice and Maria really takes to him. Only 23 months old and already she's boy-crazy (takes after her mom). He was making kiss sounds then gently squeezing her cheeks and it really seemed like she was trying to pucker and kiss back! He, like the new music therapist, seems to be in tune with her subtle cues, so he'd switch positions and activities as she got bored. I'm pretty excited about the new guy; he really seems to care and thinks he can make some progress with her. He looked at the list of goals I typed up from all the various sources, so he worked on some sitting and other aspects besides just speech.

Our homework this week (for speech) is to keep signing to her, keep trying to get her to imitate us, give her her chewy tube or nuk brush to chew on if she bites herself, and keep saying Maria's name to her.

My sis and I are off to Baltimore tomorrow to the Hydrocephalus Conference. It will be my first time away from Maria, (gulp) except that unfortunate 29-day hospital stay when she was born. She'll stay at her local grandparents' house. They have a pool, so she'll get lots of swimming in!

Time for botox injections?

Now that Maria is at the ancient age of nearly 23 months, the doctors think it's time to start botox injections. More on that further down.

We just got back from the visit to the neurologist and neurosurgeon. They were absolutely ecstatic over her latest brain MRI. The thing about hydrocephalus is that an MRI shows that much of the brain is "missing" and replaced by fluid-filled ventricles. In some cases, the brain tissue is there, just squished into a smaller area by the fluid pressure. In other cases, the brain tissue is NOT there and that's part of the reason there is so much fluid (there is a lot of space to fill). With Maria, they were never sure which was the case.

This last MRI confirms that her brain looks normal and healthy, so the tissue was there it just needed to "fluff up" to fill the gaps. To my untrained eye, the MRI looked about the same as the one from a year ago, but they were much more excited over this one so there clearly has been some development since then.

She has normal reflexes and full range of motion in her limbs, though she was resistant to a lot of motions. However, resisitance is fine. With some neurological conditions, the limbs simply CAN'T move in certain directions even if forced. Although her limbs are stiff, they are able to move where they need to.

That is what leads to the botox. Although botox can be used to give self-indulgent celebrities that "made of wax" face that passes for youthful appearance in Hollywood, it also has actually useful applications. An injection of botox into her muscles could loosen them up for 3-6 months. It is a procedure used in kids with certain types of limb stiffness similar to Maria's. The neurosurgeon wasn't necessarily recommending it, but was saying we might ask the physical therapist what she thinks. I figure if she thought Maria needed it, she would have suggested it already. But I'm curious what her take on it will be.

Both neuros agreed that there is no need for ankle braces. Yes, her foot position is not great, but that's because she isn't walking (and because we don't put her in the stander as often as we should). Braces might still be in her future, but not now.

The lumbar MRI was also OK, so no spina bifida or cord tethering.

They think her developmental delays simply come from the fact that her brain couldn't develop while under pressure from the fluid, but my understanding is that the fluid pressure has been down for a long time. They were, of course, pessimistic about her future development (well, the neurologist was anyhow), but doctors often are and we'll just have to see if Maria once again proves them wrong.

The subtle pain response they think is just a sign of her cognitive delay. She feels pain, since she reacts to it, but she doesn't really understand pain so doesn't get as upset as a child with normal cognition might. They said the same thing about the no-crying thing. I can see that for the pain, but I still don't completely buy that for the crying. Newborn babies cry. They don't have to think about it or decide to do it. It's reflexive. The whole thing probably as important as I make it, but it just seems so odd.

Her weight is 25 lb, 8 oz which is less than it was a couple months ago, but just fine on the development charts (40th percentile). Her length is 31" (10th percentile) and her head circumference is 45 cm (5th percentile). So her physical development is fine.

Her shunt is also running fine.

All in all, some good and some bad. No real surprises, though. We won't see them again for another year.

Hearing her name?

There is a new video on the Maria page that seems to show her responding to her name. At the beginning she seems oblivious to the music, but about a second after they sing her name she stops and gets a look of concentration. For the rest of the video, she seems to be listening to the music. Just one event like this I would put down to my personal bias, since her cues are so subtle. But we've seen at least a dozen events like this over the last month. Her name is the only word she seems to recognize, and seems to hear it best when it is sung.

Due to technical issues none of you care about, the video is vertically squished and is available only as a 3 MB WMV rather than a large MPEG and a small WMV.

Tomorrow is the neurologist and neurosurgeon. It is the first time we've seen them in nearly a year. Cathy and I were saying that it is probably time to start asking them things we may not want to hear the answers to. For example, Maria's delays are not typical of hydrocephalus (at least not this degree), so is something else going on? Plus her reaction to pain is awfully muted. And I keep going back to the whole doesn't cry/doesn't laugh thing. Are any of these significant? So tomorrow may be traumatic.

2nd Mother's Day

Today is my 2nd Mother's Day and it was better than the 1st one, except for the unfortunate clam chowder incident... My sweet little Maria kept me up much of last night so I could enjoy her company for almost the entire 24 hours of Mother's Day. Maria & I sat outside this morning and I saw a beautiful white cockatiel! Tried to get a picture, but my digital doesn't have a good enough zoom and the batteries are dead in my other camera. Then I saw what could have been either a female cardinal or perhaps an oriole. I was juggling the phone and binocs while feeding Maria, so I couldn't get a good enough look. Very exciting bird morning! Manolis gave me a beautiful pair of gold whale's tail earrings for Mother's Day (I think Maria picked them out). Very nice!

Then Maria and I took a bath together with a bubble bath bar called Ruby Slippers because of the red glitter and a bath ballistic (fizzy) that has rose petals in it. Manolis went to church, Maria took a looooong nap, and I cleaned both bathrooms. I finally woke the princess up after 3 hrs or so and we went to the nearby Pier 1, Cost Plus, Barnes & Noble, and my favorite, WalMart. (Last time we went to Barnes & Noble, Maria decided to cough up a big juicy one, sending the guy in the comfy chair next to us away. Kinda funny, kinda not...)

Came home and made some clam chowder with the fresh clams I got from the Chinese Cultural Center market yesterday, while Maria spent some time in her stander and crawler (first time in a long time...). Tried the clam chowder and boy was it nasty. Don't necessarily think the clams were bad, but they were chewy, chowder tasted like nothing. So we dumped the rest of it down the disposal and ate leftover lentil soup. 1st time I can remember throwing away something I've made. Very disappointing! (see, Manolis should have taken me out to dinner.)

Last year, Maria had her feeding tube, this year she's been w/o it for 10 months! She got her hearing aids a week after Mother's day last year, still has them. Her 4th tooth was about ready to erupt last year, now her last 4 molars are coming in. Last year she was yelling, keeping me up at night, now she's still keeping me up, tho' not yelling as much. Sue, the nanny, started a couple days after Mother's Day last year, we still have her and still love her. Maria's seeing and hearing better than she was last year. Smiles more. Interacts with her environment more. Holds her bottle. Has more contraptions (stander, crawler, variety of chairs, etc etc). Rolls a lot more. So, all in all, last Mother's Day was pretty good, but this one was even better!

Music therapy

Maria had her first music therapy last week. Her interest came and went during the session so it's hard to tell how much she got out of it, but I think it will be helpful in the long run.

She's been kind of introspective lately. She seems to be exploring movement more. I've seen her a few times lately with a look of concentration on her face as she slowly moves her arm or her head, as though she's really focussed on how it feels.

She continues to be SO CLOSE to sitting on her own. I find she does better with something in front of her like a table, and the vision therapist says that is common as it gives a visual point of reference to help her balance. The other day she was sitting and started to overbalance to one side, and she raised the opposite arm to as a counter-balance. I don't think I've ever seen her do something like that before.

This week is her postponed appointment with the neurologist and the neurosurgeon to talk about the MRIs she had before. Plus, of course, all her usual therapies.

Cuteness wins again

Maria had an evaluation with another speech therapist yesterday. He told Cathy he'd look at her but there's a waiting list a mile long. As he's holding her and playing with her, he says, "Well, sometimes we make exceptions to the waiting list". He plays with her some more then, "You know, I actually have an opening, but I'm not the one who makes the final decision." And finally, "Oh, heck, let's start next week." Bwahaha, none can resist her charms.

We can only hope that Maria will use her power for good rather than evil.

Greek festival

We went to a Greek festival this weekend. Food, music, folk dancing, the usual. Maria seemed to enjoy herself for the most part. Something very interesting happened when the band started playing a song with "Maria" in the chorus. She suddenly got really quiet and started listening. I have a video of her doing something similar to that personalized CD we got, but I foolishly filmed the video sideways and need to rotate it before I post it. I've seen her do that many times over the last week or two and I firmly believe she is deliberately responding to her name. I vaguely remember reading something a while back on auditory processing disorders that it is good to start sentences with her name as it will trigger her brain to pay attention. I guess it works that way on kids with normal hearing as well :)

Music hath charms

Maria seems to be responding even more to music lately, though maybe we are just playing more of it. We got her one of those personalized CDs where they use her name in the songs and, though the songs are just awful, she seems to enjoy them. Not only does she get quiet when the music is playing, but she moves her feet and arms like she's dancing.

She sees a music therapist for the first time next Thursday. There's a larger therapy place Cathy is trying to get her into so this person might just be temporary, but I'm curious how this will go. I'm glad it's one of my Maria days so I can see how this person works with her. The advantage of this therapist is that she comes to the house; the larger agency means we'll have to take her there.

Maria MIGHT be finally starting to respond to her name. We hate to get our hopes up, but I've certainly noticed several times that she will calm if I say "Hi Maria". Then again, sometimes she doesn't. Manolis say he has seen her turn toward him if he says her name, and I think others have started to notice things. Her signals are so subtle and intermittent that it's always hard to tell if something is real or just coincidence, but (for me at least) I've seen it enough times that I think she's starting to make the connection.

She continues to be very stuffy and we are pretty sure it's allergies rather than a cold. We think that when her sinuses drain into her throat she chokes and that's what makes her cough so much. I haven't found that Triaminic makes much of a difference, but we try different things. She has been keeping Cathy up pretty much every night with her coughing since they got back from Oregon.