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!

On Saturday we went to a meeting of the Phoenix chapter of the Hydrocephalus Association. In the past the local support group had been just for people who have normal pressure hydrocephalus, which affects people aged 50+ and is different than what Maria has. This is the first meeting where they added support for other forms of hydrocephalus. Cathy met another mom with a kid a little older than Maria.

Then on Sunday Shriners had their annual Cornfest. Cathy took Maria just so they could meet the beautiful girl they are helping. Maria goes in for her follow-up with Shriners a week from Friday (the 5th), the same day as her first visit with the new gastroenterologist we met a year ago.

When I picked her up from school yesterday she seemed the least stressed out she has so far. She does fine in class but is pretty overwhelmed by the end of the day and usually takes a long afternoon nap. Yesterday she was calm and didn’t sleep when we got home. We are hoping that means she’s getting used to school.

Her stander is supposed to arrive today so there’s another new toy to play with. Since she can both sit and stand in it, it might be useful as a feeding chair. She barely fits in her high chair and it’s falling to pieces anyhow.

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.

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…

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.

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!!

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!

I’ve added some links in the column to the right to other special needs blogs and equipment we like.

Maria’s still feeling poorly. The antibiotics have given her a yeast infection but since we know what one looks like now we are on top of it. She didn’t have any seizures when I was there yesterday, but then she slept most of the day.

The neurologist got her blood tests back. Her Depakane level is find but her Trileptal is a bit low so he nudged that up. We hope it helps soon since we are leaving town Friday!

He reminded us that this is not unusual. She is going to have stretches of no seizures, but they are going to pop up again periodically. When she’s tired or sick or stressed she’s likely to have problems. When things calm down she’ll do better.

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.