Maria Rose

Ok! We now have both the walker and the stander. The stander is an EasyStand that goes from sitting to standing. Jeff, the guy who delivered it, was still trying to get all the adjustments right when we put Maria in it in a sitting position and she kept trying to pull herself up to standing. She was so excited about it! There’s a clear tray on it that she kept looking through and hugging, while grinning like a monkey. It was just so cute! I’ve never seen her more excited about anything (just her family and friends, and we’re not things…).

She was in the stander for quite a while a couple times today. We fed her in it and the only trouble is the food gets in some of the cracks of upholstry that sits on the tray (stupid design), so we’ll have to do something about that because I want it to stay relatively clean if possible. She seems pretty secure in the standing position, but we’ll have to watch her in the sitting position–she might be able to wiggle out of it…

Jeff and Barb (physical therapist) adjusted her walker while they were here. Maria was doing really well in that also. I think Barb was impressed. I sure am! There’s a way to lock the wheels so they just go straight, which might be better starting off. That way, any movement she makes results in forward motion, rather than random forward, backward, side-to-side, not really getting anywhere.

Auntie Rose was here all weekend. Maria is fascinated by her. She (Maria) stares at her (Rosanne) all the time, like she’s trying to figure out why this person acts and sounds so much like her mom, but is so different. We had a great, action-packed weekend, which was too short.

They seemed to really enjoy meeting Maria at the El Zaribah Shrine Sunday. Glad we went. I’ll need to send them a picture of her in the stander so they can see what good they’re doing!

We finally got Maria’s Miniwalk walker delivered today. They just dropped it off, didn’t come in and set it up so I don’t think it’s properly adjusted, but at least it’s here! Maria fell asleep as it arrived so we haven’t had a chance to see how much fiddling it needs. Perhaps we’ll give it a try later this afternoon.

I heard that the stander is coming this or next Tuesday. We’ll see. Who ever would have predicted that I’d actually be excited about a stander and a walker for my daughter? You never know what life has in store for you…

Tomorrow is the Hydrocephalus Brunch and Support Group at St Joe’s. It’s the 1st support group meeting that I’ve heard of in Phoenix, so we’re going to go check it out.

Maria finished her 1st week of her 2nd year of school. Her class has 14 kids, 11 with IEPs (individual education plans for those kids who need extra help) already!! Last year they started with 8 kids and it grew from there (the kids in the area can attend the school if they qualify when they turn 3, they don’t have to wait until the start of the year).

She started off really well! Slept well Sunday night (which isn’t usual for her, especially these days); did well in school Monday; slept well Monday night, did well Tuesday. Slept a little less well Tues night, much worse Wed night; rubbed her eyes a lot Wed & Thurs in school; seemed overwhelmed. I don’t know if it’s just getting used to being back in school (if so, then why did Monday & Tuesday go so well?), or if she misses riding home with her Sue Sue (nanny), or what.

Her blepharitus is acting up. We’ve been putting Erythromycin in for more than a week, now we’re stepping it up to Tobradex (steriod, so not so good to use too much). According to Wikipedia, blepharitus is an occular disease characterized by inflammation of the eyelid margins. Nice huh? Her inner, lower lids get so deep red, it looks like blood. It’s apparently very uncomfortable and, of course, another chronic condition. Adding to that, her glasses have been bent so many times, I don’t think they fit well anymore and she’s not enjoying them as much as she has in the past. Fortunately, Uncle Andy is going to go way the heck down to the place where we got them so they can adjust them and see if they’re salvageable or if we need to get her a new pair.

On the bright side, the seizures seem to be under control since we increased one of her meds. School hasn’t affected that (and I don’t expect it to). Her itchy eyes have made it very difficult to do any walking. She’s been standing ok, and still likes to hold our hands to pull herself to standing, but I do feel we’ve lost some ground from her stellar performance last week.

Walker & stander updates: nothing to report. still. yet. Monday I’m going to call Preferred Homecare again and find out where the walker is.

Manoli’s friend Nikos came over a couple days ago and Maria was petting his face. I got a picture of it and I swear it looks like she’s looking into his soul to try and heal him (he’s in the beginnings of a separation or divorce). Very sweet picture…

On Wednesday, Barb the physical therapist called me and said Maria took about 155 steps by herself (while Barb was holding her, but she didn’t have to kick Maria’s feet), then took another 150+ steps, then took 40 or 50 steps. WOW! The most she’s ever taken in the past was in the 50s or 60s–and we thought that was amazing! Granted, she only took 15 independent steps yesterday, and today she didn’t do so well, but Wednesday she did great!!

Last night was Maria’s school orientation. Manolis & I went with her. Denise greeted us at the door and Maria gave her a big wiggle immediately–didn’t take her any time at all to process. She also recognized Karen. Funny thing is that I didn’t notice much of a reaction for Kelli, her teacher (Denise & Karen are the aides). Samantha finally got there and came over to say hi to Maria. She barely touched Maria’s hand and Maria gave such a big wiggle that it scared Samantha, she ran away and it took her quite some time before she came back around Maria. It was very cute!

Maria didn’t seem nervous at all being back in the classroom. She barely sucked her thumb (very unusual for school), and she wanted to stand almost the entire time. They were shocked at how big she’d gotten and impressed at how much standing she was doing. Apparently the class is near full at the beginning of school–last year they started with about 8 kids; so they’re going to have 3 aides.

Tomorrow we go see Debbie for some more Jin Shin Jyutsu, then Monday’s school. I hope Maria does even better this year. Seems like she’s excited about going back.

We just got back from 4 days in San Antonio, Texas–add TX to the other states that Maria’s visited in her short 4 years (plus AZ, NM, OR, CA, HI, UT, WA–I think that’s it). My step-sis, Ellen, hosted us. Maria finally met her step-aunts & uncles and cousins. We mostly just sat around and ate, which is what we do best! Uncle Andy, Maria, Rosanne, Paul, cousin Amelia, & I went to the river walk, which is beautiful and fun, but not very stroller friendly. The ramps weren’t well marked and 2 places we had to carry the girls & strollers over bridges with many stairs. We had a nice lunch (where Maria had a mini-melt-down and didn’t want to take her medicine or eat much) and a nice walk. As she gets older, it’s a little bit more stare-provoking when she is stiff & fussy. But I suppose that’s the way it goes. The other thing I’ve noticed is Maria’s getting too long for the fold-down changing tables, which can be ok, but when she’s squirmy it adds a little extra challenge…

Maria’s grandpa (my dad) is getting more comfortable with Maria. He seems to bond with her a little more with every visit. She’s clearly taken by him, as well. He held her quite a bit this visit. But the biggest surprise of all was her cousin Michael. He’s 23, very intelligent and not afraid to show it, a bit aloof, but from the moment he saw Maria, he seemed interested. Finally, I plopped her on his lap. Unfortunately she was tired and stiff and cranky, but it didn’t freak him out; didn’t even phase him. I’ve never seen such a thing–not even from people who are used to special kids. Yesterday he held her and gave her a bottle, she was petting his beard and face and head. We all were taking pictures because it was just the most amazing thing. Between him & my dad bonding with the baby, it made the trip worthwhile. (and I think Ida had a nice time, too, since it was her party). Ida’s cousin, Julian, and his wife, Carolyn, were there too. Very nice, interesting people.

Dad & Ida are finally in their new independent living place, so things should settle down for them a bit pretty soon. They couldn’t have done it w/o David & Barbara helping them! Moving is such a stressful thing, even for young people.

Sue (nanny)’s mom has a brain tumor, so Sue postponed her surgery and is going to Hawaii for a month; when she comes back she has to have her surgery. Needless to say, we’re a little short on caregivers for a while. Manolis isn’t working, so he’ll shoulder much of the responsibility; Andy will try to work a bit more; and I’ll have to work at home more. I’m going to try and maybe find someone to fill in also, but it’s not easy to find the right person.

Laurie (reporter) forwarded me 4 more emails from people commenting on the articles, offering this, that, or the other. I need to call the walker provider (Preferred Homecare) AGAIN to see what’s going on with the walker, since she didn’t bother to return my call from Friday. For such a sweet, young, tiny little thing, Maria’s cutting quite a swath!!

Maria had her 4-yr well check (a month late…). She “only” had to have 3 shots since she got her tetanus shot last week. The nurse felt bad to give our sweet Maria shots, but Maria is so good about them. Now she weighs about 31lb 11 oz. This nurse said the baby scale goes up to 40 lb (last week a nurse said the same scale only goes up to 30lb, so we weighed her on the big scale, which only showed 30lb). The doc said she’s gained 4 lb in a year(??!! really?) and that’s perfect. She said we could stop the antibiotic because her bite looks good. We showed her the ant bites (yes, she got many bites from ants that got in the house and crawled on the black blanket to bite her), and she said they looked fine. No clue why she’s not sleeping, try claritin or zyrtec or benedryl (tho’ that zonks her) each night (don’t think we’ll do that…too many drugs). We can use Mylanta or similar on her diarrhea-induced diaper rash–who knew?! Everything else looked good.

The pediatrician just got on the Make a Wish board; she’s getting trained next month, so she’ll know if we indeed qualify (they contacted us and said they’d like to grant Maria a wish). She also said she’d be able to suggest some ideas for a wish. She mentioned something musical, since Maria likes music so much (Wiggles, anyone?). I mentioned the articles and everything that came from them and she was thrilled.

I’ve called Preferred Homecare twice now. We faxed them the letter from DDD saying they approved the walker. I asked what’s happening with it. She said she has to request it from Blue Cross, who will turn it down, then she’ll request it from Care1st, and she has to put it in the computer, blah blah blah. I told her it has been 9 months since we first requested it, so surely she can understand my urgency to get something going, and what can I do to expedite things, and I will be calling you frequently to check the progress. She said it will take 15-20 days to get it, so don’t call before then. HA! We’ve heard that before, haven’t we? I’ll be calling again tomorrow.

The El Zaribah Shrine said they’d pay for the stander, so maybe her PT can measure her tomorrow when she’s here, so we can get that ordered and on the way. Even though we had a major victory last week, it is still a long, uphill march. Good thing I have stamina and a sense of humor…

It was so incredible the outpouring of support from those 2 articles. I responded to 15 emails that Laurie forwarded to me. I’m not used to so many kind, generous people that don’t even know Maria. When people meet her, they love her, but to not even know her or see how beautiful she is …

Maria is sleeping tonight. 1st time in a couple weeks? Many recent nights she just rubs her eyes for hours. Some think it’s allergies. I think it’s a headache. Whatever it is, she doesn’t seem comfortable. I wish I knew what it was so I could do something about it. I hope she sleeps all night. 5 hrs is my personal best this week, and even I’m wearing out a bit. We leave for San Antonio Friday. I hope she does well. Amelia (Maria’s cousin) will be there so maybe they’ll play together? Probably not, she’s very shy.

Maria has been so affectionate lately!!! She loves to hug (sometimes even w/o pulling our hair), and her hugs are LONG! Uncle Andy said she stood and hugged him for about 30 min one day. She’s been into her uncle and daddy this week more than usual, which is nice for them. Manoli had an appt with the doc today for his nose. While we were in there they sucked the wax from his ears with a tiny vacuum cleaner like thing. Maria was watching the doc, kept trying to reach out and “help” him. It really seemed like she was nervous for her daddy so was watching to make sure he was ok. She’s not used to someone else having procedures! When he was all done, she just hugged him and licked his face over and over. Very cute!

Wow! I’ve been talking with Laurie Roberts, the AZ Republic columnist who wrote the article on Maria; she said her voicemail box was full and the secretary’s box is full of people calling who want to help. Yesterday, the state decided to pay for the walker. Today the El Zaribah Shrine called and said they’d pay for the stander. So, thank goodness, we’re not going to have to go to court on Monday! (I’ve been envisioning being there while Maria’s having seizure after seizure…) Laurie seemed somewhat surprised (and I’m totally blown away) that there’s so much interest, so she’s going to do a follow-up story for Saturday’s paper and include a picture of Maria (she didn’t realize the photographer had come out earlier and taken pictures)!

The response is overwhelming; Laurie said there are some older people who’ve offered us their walkers (not understanding the difference in what they have and what Maria needs), and others who have offered to donate money. I’m speechless and humbled.

So hooray for the press this time! I hope the DDD has learned a little something (?); I know I sure have…

This is all especially appreciated now since Maria’s been having a rough week or two. Kijana (our cat) bit her Saturday night. Kijana is the sweetest, most mellow cat there is, so I think Maria must have bit her or something very severe for Kijana to bite Maria. Also, Maria’s been have lots of seizures again, so we’re having to dope her up pretty good. She got blood tests yesterday to test the drug level, and check for infection from the bite; plus she had her arm x-rayed to make sure there’s no infection in the bone… She’s not been sleeping for several nights, which means we’ve not been sleeping for several nights. As I said, it’s been rough, so thank goodness we’re finally winning the equipment battle…it’s been a long 9 months since we first requested them.

Maria is 4 years old now!! As you know, we were at the Hydrocephalus Conference all weekend, so her first birthday surprise was that Mommy’s home!! We went to the IMAX in Tempe and saw the 3D show on Whales & Dolphins. It was pretty cool. Maria was engrossed for about half of it. I tried to put the 3D glasses on her, but I think it was too overwhelming. It is pretty scary when a gray whale is coming out of the screen at you…but awesome at the same time. I was impressed at how interested she was.

She also seemed to like the mall. She was looking up at the tall ceilings, and down at the tile, and she even frequently sat up and forward, looking around–you know, like other kids–rather than her usual thumb-sucking fetal position.

We ate at the Rainforest Cafe. They had a couple “rainstorms”. The first one went by unnoticed, but she reacted to the 2nd one. They dim the lights, then you hear thunder and see flashes of lightning. She jumped when she heard the thunder. Pretty cool!!

We got home at 6 or so. She ate her chocolate cupcake before dinner (gasp!), so I could be sure to get some pictures. I think I took 50-60 photos, we’ll see if any of them turned out. She can be a challenge to get a good photo of at times. She really enjoyed her cupcake! First birthday where she ate it all by herself, I think (well, the floor did get its fare share..).

I enjoyed the Hydrocephalus Conference. Park City is a beautiful setting! The hotel was nice. I reconnected with a couple people from last time and met a few new ones. I was disappointed that they split the moms of 3-5 yr olds with hydrocephalus into 2 groups. Our group was fairly small and I don’t think a few more people would have been bad. Like last time, they gave me a few new things to worry about; but I was amazed and encouraged by the emerging research, increase in funding by National Institutes of Health, start of research database/network thing (HCRN, I think), etc. Next time should be even better! We’re really hoping to bring Maria to the next one. Boston or Cleveland are the locations I heard tossed around. In hindsight, the thing I wish I’d gotten out of it was tips, tools, and techniques for dealing with our challenges–like vision and hearing issues, walking, getting equipment from the state, swallowing and feeding, what type of shoes fit over the AFOs that look halfway decent. That type of thing. Maybe I’ll suggest it… It’s good to hear others’ stories, but I’d also like to walk away with some practical things to try.

4 years old! Can you believe it??

A vortex is a mass of concentrated energy that moves in a rotary or whirling motion. They originate from magnetic, spiritual, or sometimes unknown sources, and are considered by some to be gateways or portals to other realms, both spiritual and dimensional. Several vortexes exist in the world–Stonehenge and the Great Pyramid being two of them. Apparently there are 4 sites in and around Sedona. Some people think they have healing power. Since we live so close, we thought, “why not?”.

We visited the airport and Bell Rock vortexes. At the airport, there’s a short, but steep hike up a hill. Manolis had Maria in the backpack–in hindsight, I do believe it was quite dangerous (hindsight, hell, at the time it seemed very dangerous; in fact, once he slipped and Maria lost her glasses, which we didn’t notice for a few minutes…). The Bell Rock trail was much flatter, so we took Maria’s stroller, but it was bumpy for a stroller. It turned out to be 1.1 miles one way, which isn’t bad, but it was hotter than heck, we didn’t have much water, I didn’t reapply sunscreen to Maria, she didn’t seem to enjoy the bumps much, and finally, she pooped. Since I didn’t know how far it was, I didn’t bring diapers, so I sent Manolis back to the car, while we slowly kept walking. Finally, I said we had to stop. We were close, but I didn’t have a good feeling about being there. It was the strangest thing. We were standing in the shade of a tree trying to decide what to do, when a dust devil came up and whirled right by us and on down the road. Manolis said, is that the vortex (joking)? I said, yup I think so. Now we can go back.

It was beautiful up there, but it just didn’t seem smart to be taking Maria out in that heat and blaring sun for so long. Of course, I thought it was going to be a lot cooler than the 110 degrees in Phx, but I think it was at or near 100. I consider the trip to be recon; we can go check out the other 2 vortexes, see if I get a better feeling about them, then we can come back in the fall, when things are nicer (read: cooler) and we are more prepared.

All-in-all, I think Manolis had a pretty nice Father’s Day (except for his uptight wife, who only seemed to relax after a beer and fruit/veggie/cheese plate at a brewery…). Maria ended up faring pretty well. No seizures, no sunburn, slept good last night. I thought she’d be overtired, sunburned, and seizing. At least we tried it and we have a map for all the sights, for when we go back.

I decided to take Maria to a movie on Sunday–Horton Hears a Who. She was a little tired before we left. She was amused by the big dark room (movie theater) and the long, dark hallway we walked through that has lights on the ceiling (cheesy cheap theater decor). When the commercials and movie trailers began, she was mildly interested. By the time the movie finally started, she was bored; not sure she even looked at the screen more than a time or two.

We were sitting 10-15 rows from the front; she got very squirmy and loud at one point, so we moved to the back row where her stroller was. Fortunately, it fit next to the chair in the back row. (I asked the guy I bought the tickets from if they had accessible seating, he said yes. I guess he didn’t know what I meant because there were no places for a stroller/wheelchair.) Sitting in her stoller calmed her down (maybe moving back too?), then 10-15 minutes before the movie ended, she was asleep.

Manolis suggested we take her with us to see Indiana Jones. I don’t think that will be such a good idea… I think we need a movie with music. But who knows, she might light all the loud action and adventure.