Maria Rose

I took Christmas week off, and before we headed off to Oceanside to see Auntie Rose & family, we went to Tres Rios Wetland south of I-10, just east of 91st Ave. Doesn’t look like much from the road, the sign is tiny and hard to see. The area isn’t very developed (which is one thing I liked about it), but the birds! It was amazing. Right off the bat we saw a male Cardinal in all its glory! The snowy egrets, great egrets, great blue herons, and a cinnamon teal were my favorites (in addition to the cardinal, of course). Like a dingdong, I didn’t bring my binocs; probably good though since I was with Maria and Manolis–they’re not so into birds. Next time Auntie Rose comes, though, that’s where we’re going! There are 2-3 large ponds to walk around, a couple of boardwalks that take you in the middle of a wetland, and several benches to sit on to observe the birds. We had Maria in her stroller, of course, and there was no problem getting around; well, except for a small patch of loose gravel that was tough to push her through, but other than that, it was awesome!! Highly recommend this spot!

Wed we headed to CA, spent a couple days with Maria’s aunt and uncle and cousin Amelia. Amelia’s 4, and finally able to interact with Maria (although she was puzzled as to why Maria doesn’t talk, etc). They held hands a couple times and you could tell Maria liked having Amelia around. Rosanne and Paul did a bunch of work on their back yard. It looks great! Looks like a park or a resort or Mediterranean villa. They did a fantastic job!! (esp considering that a couple short months ago Paul was very, very ill with pneumonia from swine flu). It was a low-key trip–a little shopping, a little walk near the ocean, a lot of eating–the usual! Since we’re getting Maria her very expensive bike, she didn’t get much in the way of gifts to open, but fortunately she doesn’t sweat the small stuff! One of the things I got her was some cute brown cords with fancy designs on the pockets and a glittery belt. Trouble is, they’re low-rise pants, and when you’re still in diapers, it’s not a good look…

Today we had our quarterly review with the state. It was the shortest one ever. And the best news of all–we’re getting a new coordinator!! It’s pretty obvious the current one doesn’t care for me much (she kept asking nanny Sue what Maria is improving at, what she’s been doing, etc.). I just kept my mouth shut and tried not to cause any trouble. She was nice enough this time, and appeared to be trying, but I’m still pretty pissed off about our last visit, so I admit, I didn’t try very hard this time to be anything more than polite. Needless to say, I’m very happy that we’re getting someone new.

Maria’s been out of school for just over a week. 3 more days of freedom and laziness, then it’s back to her schedule. She’s still going to bed around the same time, but we’ve all been getting up kinda late. It’s been nice!

Because I’m totally shameless, I mentioned the bike thing to my clients. One of them wrote a very nice press release. Thank you, Christine!

I took Maria to see the Dave Matthews Band movie in 3D. I liked the 3D (hard to keep the glasses on Maria’s face, though), and I liked the parts where Dave Matthews was on, but at least the first 30 min was 2 other bands, who may have been fine some other day in some other venue, but I wanted to see DMB and could care less about the other 2 bands!!! By the time DMB came on, Maria was asleep. I think the other 2 bands tired her out because they were pretty loud and rowdy (esp the 1st one).

The other unfortunate thing was that I think we were the only ones in the theater. We were sitting up front in the accessible seating and the theater was dark the entire time (beginning and endiing also), so can’t be 100% sure, but when I looked back, I didn’t see anyone else. It’s no wonder because I didn’t see any advertisements, except for the email I got. NOTHING in the paper. Shame! And of course, we went to the 9:40am on a Sunday show–DMB fans are surely still in bed by then!

Maria basically slept all day. Concert really must have tired her out! Oh well, I guess Michael Jackson and the Wiggles still rule Maria’s music world!

Today, Saturday, was a busy day!! First we were with Alison, speech therapist in Peoria, then way down to Gilbert for a Jin Shin Jyutsu session with Debbie, and finally back to Peoria for occupational therapy with Chris. Debbie did her usual thing of treating Maria while Maria listens to Therapeutic Listening tapes, which are supposed to help her talk. Manolis and I always leave the room because the treatments go better when Debbie and Maria are alone.

In her OT session, Maria was sitting on Chris’s lap, looking at her. Chris would talk to Maria, then Maria would look right at Chris and move her mouth like she was talking (no sounds came out). Then Chris would talk, then Maria would move her mouth. This went on for more than 20 minutes!! Chris said Maria was breathing like she was talking (not sure if that makes sense, hard to explain in text). Back and forth, and back and forth, just like they were having a long, involved conversation!

It was the most amazing thing I’ve ever seen Maria do! I wish I’d had my camera to take a video! I almost cried. Sue would have cried if she’d been there. And for some reason 2 tears came out of Maria’s eye at the end of the session when she was laying down.

I have no idea what that was about, but it was absolutely amazing! It reminded me of the time when Helen Keller finally figured out that the W sign meant water and the whole language thing finally made sense.

Next week is another Jin Shin treatment, followed by OT, so we’ll see what else happens!

Apparently, Maria did “awesome” today in hippotherapy. She also did terrific 2 weeks ago. I wasn’t there either time. Hmmmmm. When I go, I’m quiet, so I don’t think I distract her. Perhaps it’s the constant snapping of pictures. Oh well, it’s probably better for me not to miss so much work anyway.

Maria loved the Michael Jackson movie, This is It. I just got an email announcing a 3D Dave Matthews Band movie that’s only going to be in theaters for 1 week. I’m going to take her to see it. Hope she likes DMB as much as MJ!

We’re 25% of the way to getting Maria her bike!! Thanks to everyone who’s donated so far!!!

If you want to see some current photos of Maria, I’ve posted a few on my Facebook page. Here’s a link, not sure it’ll work or not??? http://www.facebook.com/home.php#/cathy.humphrey.phoenix?v=photos&ref=profile . Since I’m kind of old, I’m still a bit baffled by FB–you know, what you can and can’t, should and shouldn’t do.

Maria’s doing great these days!! Breathing clear. Eating well. Standing and walking somewhat (with assistance). She got new glasses yesterday. Jury’s still out on them… She wakes up happy every day. We’re so lucky!

I forgot to write a post about Thanksgiving! Uncle Andy, Maria, and I went to Albuquerque to spend a few days with Maria’s grandparents and our cousins/aunt on my mom’s side. Manolis went to Vegas. As usual, he lost, which is good because he doesn’t play much $$ and it makes him not so excited about playing more.

The weather in NM was great for ABQ, but I was still cold. We spent time with Dad and Ida. Maria does love her grandpa! We went to my cousin’s for Thanksgiving, as usual (Mom’s sister’s kids). They’re Italian. My cousin DeeDee married a Greek, so you can imagine with Italians and Greeks how delicious and plentiful the food was! We always have a great time there. Unfortunately, Maria was overstimulated or something, Andy thought she possibly had a seizure, so we left abruptly after only a couple hours.

My aunt Louise and cousin Susan bought the house next door to DeeDee’s–isn’t that great?! Maria and I went back on Friday to see their house. It’s really nice! They found some old pictures of my mom–a wedding album she gave her mom, plus some other pictures of when she was pregnant with my older brother. What a wonderful surprise!!

We also saw an old high school friend of mine, who I haven’t seen in 20 years or so. She still looks the same. We went over to meet her therapy dog, who’s very sweet, but not in the mood to work. We did get a nice smile from Maria when she first met the dog. Andy went visiting an old friend of his too.

We left Saturday, just long enough not to get on anyone’s nerves, and we missed the storm!

I added the widget to the sidebar so we can easily track donations to Maria’s therapeutic tricycle – big thanks to those of you who’ve donated so far. In the process, I destroyed the sidebar. It was a combination of my stupid web host not telling me I was over quota, stupid WordPress destroying the file when it couldn’t be saved, and stupid me for not having a recent backup. I restored the most recent one I had but I had put a bunch of links there that I now can’t remember. Oh well.

We are raising money to buy Maria a therapeutic mobility device (we call it a special needs trike). She’s been on one 4 or 5 times at her occupational therapist’s office and loves it! We love it too because she’s well strapped in, she holds her head up in it pretty well, and best of all, her legs are moving all the time, building muscle. It has a handy steering device on the back, so we can push and steer, until she can do it on her own.

Riding the bike, in combination with her hippotherapy (physical therapy on a horse), her stander, and her walker, should improve her ability to walk–not to mention allow her to feel like the other kids who ride bikes. We’re also hoping the exercise will help her breathe more deeply (she gets upper respiratory infections every fall, in part from not breathing deep enough).

Unfortunately, like all things that are special needs, it’s quite expensive, so we’re hoping to get some small donations, to help defray some of the cost. Anyone who’s interested can donate by going to http://freedomconcepts.chipin.com/maria and donate via PayPal. There’s a short bio of Maria and some photos.

Thanks for your consideration!!! Hope everyone had a wonderful Thanksgiving!

Yesterday Uncle Andy was walking with Maria. He told me that he told her to shut the door and she reached out and did it! When it happens once, it could be a coincidence. But they were on their 2nd lap and I was standing there, so he said, “Maria, close the door.” and she reached right out and shut the door! It was immediate and deliberate! And she had that cute little grin on her face. If only we’d gotten it on video! Ah, life’s simple pleasures.

Poor missy Maria is sick again. She’s been on-and-off this week, but yesterday was bad. Her breathing was not good, she was very fussy–I would say inconsolable–and lots of kicking and moving, almost panicky. All bad signs. I called the doc at 11:30am, they could get us in at 2pm. Doesn’t sound like a long time, but it seemed like forever. We almost took her to the emergency room, but decided to wait for her appt. We couldn’t see her regular pediatrician, but did get to see the same guy who saw her a month ago. Her pulse ox (oxygen level in the blood) was 97, which is damn good for what we thought. It really puzzled the doc. He saw how concerned we were and how uncomfortable she looked and was confused. We got another chest xray, which showed something in her lower lungs. He said either it was fluid or that she wasn’t breathing to the bottom of her lungs. Since he heard something when listening to her chest, he decided to put her on antibiotics, even though she has no fever. Now she’s probably going to get another yeast infection. It’s a vicious cycle!! Maria single-handedly had her mom, dad, uncle, nanny, and aunt pretty freaked Friday (freaky friday).

Today, Saturday, she’s somewhat better. We kept the appt with the new speech therapist. It’s a clinic-based appt, so we go there at 11am for speech, then have to go back at 3pm for occupational therapy. It’s not too far away, but still kind of a pain. We’re going to work on either getting them back-to-back or something. As it is now, we can’t do the Jin Shin Jyutsu anymore.

The new speech therapist is experienced, knows a lot of people in Maria’s school district, is energetic, has lots of ideas, tried hard to get to know Maria, doesn’t listen very well to the mama, and has yet another idea for what to do with the Tech Talk. She wants it to be 2 pictures, each picture taking up half of the machine (which equals to 4 squares). She thought we could either put the same picture in all 4 squares of the left or right half, or 1 big picture in each half, which would be broken into fourths by the cover piece — don’t know if that makes sense. Big Sigh!!!!! I’m going to try and get the home speech, school speech, vision teacher, and possibly hearing teacher to all get together and decide once-and-for-all (again) what the hell we’re going to do with that damn device! She said the DDD (state agency) allows us to change devices after a while if we decide the one we got isn’t working. However, the state is in such dire straits financially, I have no doubt they will turn it down.

I ended up ordering a laminating machine and am now printing on my photo printer instead of the laser printer to cut down on the trips to Kinkos. But it seems that every time I make a new set of sheets for the device, we come up with another scheme and I have to do it again. Very aggravating (and expensive) for me and i’m sure confusing for Maria. I somewhat like what we came up with last time–pink background, 4 pictures with “I want”, “all done”, and 2 activities to choose from (e.g. bite and drink, or book and ball, etc). Oh my.

When we went back today for OT, Chris had Maria ride the bike again, and she did great! We’re supposed to get our quote on Monday for the Freedom Discovery bike we want, so we can get the website set up and start getting the bike paid for. Maria even pedaled the bike by herself a couple times. You can tell she loves it!!