Maria Rose

The big news is that Sue is back after being gone for six weeks taking care of her dying mother. She and Maria missed each other terribly and everyone is happy that she is back. She still has to have her surgery but first she’s going to take a couple of weeks to get used to being back and to get lots of Maria time.

The other big news is that I finally got around to posting all the videos we’ve been taking over the last year or so. Most of them are pretty old so show Maria at a lower level of ability than she is at now.

I had to be a little obscure about the “#2″ video because a more explicit name would attract, well, people looking for those kinds of videos. But now people who haven’t heard Maria’s unique little noise can do so.

Maria had a busy day today. She went to Shriners, to the gastroenterologist & nutritionist, and had her usual speech therapy.

At Shriners we finally met the guy who contacted Cathy about the stander after that article. He said he was “spittin’ mad” after reading about her and was glad he was able to help. He told everyone she was the girl from the newspaper.

The doctor said her hips looked better than they did in December. Her only slight concern was how tight Maria’s hip flexors are, which are the muscles that lift the leg. She gave us a simple stretching exercise to help with that. She of course also encouraged as much standing and walking as possible.

The GI and nutritionist didn’t have much to say. The neurodevelopmental specialist had suggested we go to the nutritionist to see if we needed to add anything to her diet. The nutritionist was kind of perplexed why we were there. Maria’s diet is so absurdly good that she couldn’t think of anything to tell us. It was a wasted visit, but we like those. Maria’s weight was over 33 pounds.

It wouldn’t be Maria if we didn’t get a new diagnosis to worry about. The Shriners doctor noted that her beautiful hair, bushy eyebrows, long eyelashes, small hands and feet are all symptomatic of a genetic condition called Cornelia de Lange Syndrome. She mentioned that we might want to get a genetic screening, then dismissed it as unimportant.

For laughs I looked it up, and it’s not really that unimportant. The symptoms fit Maria really well and the complications include heart and kidney problems.

It’s not something we are obsessing about but we’ll mention it the next time we see the pediatrician. A genetic screen wouldn’t hurt.

Maria had another of her respiratory episodes. She got all congested, her fever spiked to 104.7, and everyone got very worried. However the fever came back down quickly to the 101 range. She got sick Wednesday of last week, which was an off day for school, missed Thursday but then had the next 4 days off anyhow. Nice timing!

Even when she was sick, she was doing great in the walker. She doesn’t seem to love the stander as much, but she still does really well in the walker. Yesterday when I was with her she did 23 steps, then later another 23.

Someone asked what we mean by “steps”. A step means that she moves her feet on her own, left-right-left-right. She’s not holding her own weight or balance, but she is consciously moving her legs like walking. She’s figuring out that moving her legs makes her go forward.

When we were walking by holding her up by the arm pits, we’d have to prompt her for a time. The PT would have to walk with her back and forth in laps about 40′ long and on about lap 5-6 Maria would get it and start moving her legs. That’s when we got those 150+ steps in a row.

With the walker, she doesn’t need so much prompting. I find within about half a lap or less, she’s moving her legs. It’s also a lot easier on our aging backs.

One final thing. Now that I’ve seen the walker and the stander up close I just have to ask: How could those idiot medical directors at DDD and Care1st think that a stander and a walker are the same thing? Sorry to shout but GEEZ! Have they ever even seen a stander or a walker? They are nothing alike! It just goes to show that doctors are not qualified to make decisions about therapeutic equipment. They should have PTs making those decisions.

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!

Maria really loves the walker and so do the rest of us. Even Manolis has put her in it a couple of times and I don’t think he’s ever used any of her therapeutic equipment. She does a little better in it each time. I’m sure it’s not adjusted correctly but the PT comes today so she may be able to set it up better.

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.

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!