Maria Rose

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!

Oh, yeah. I guess we never posted the link to the followup article that appeared three days ago.

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.

I just uploaded a bunch of new pictures. So now I’m only two months behind on pictures and a year behind on videos.

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’s seizures are getting worse. She’s regularly having about a dozen a day and one was almost a minute, which is MUCH longer than they usually are. She’s been cranky and I’m pretty sure a lot of that is because of the seizure activity.

They weighed her at the doctors – and she’s still 30 pounds! I just don’t believe it. She is noticeably chunkier and the weight gain would explain the increase seizure activity, so we are baffled.

The are doing blood tests to check her drug levels before increasing her regular medication. In the meantime she’s getting her emergency Clonazepam about every other day. We (especially her daddy) just hate that stuff since it turns her into a zombie, but it definitely shuts the seizures down fast.

Unfortunately, the ONE person in the city who can draw blood from Maria has left her pediatrician’s office. Since most people just torture her for 5-10 minutes, digging around with the needle hoping to get lucky, and because blood draws are a big seizure trigger because of this, we were very unhappy. However the new guy took his time and got it the first time so maybe he’ll work out.

And because we don’t have enough problems, Maria got a bad bite from her kitty this week. We know how patient Kijana is with her so Maria must have been severely torturing her to have triggered that. As most of you know, Cathy and Manolis have an uneasy truce over the cat. He hates cats, convinced they are all vicious and disease ridden like the feral cats on Crete. He barely tolerates Kijana out of respect for Cathy. This has not helped the situation, especially since the bite is getting infected.

So as long as they were at the doctor, they got someone to look at the bite. They gave her a tetanus shot and antibiotics and it should be OK.

Good news though! Someone from Shriners called after reading the article and has offered to pay for the stander. Although we certainly feel the DDD should pay for it, I think we’ll take the bird in the hand rather than continue to fight.

There will be a follow up article on all of this. We’ve had lots of people offer to donate money for the stander, including one guy who offered to pay the first $1000! We are going to ask the columnist to mention that their money would be better off going to Shriners or some organization like that to help families more in need than we are.

Maria has been featured in another newspaper article, the second in her young life. This one is in the Arizona Republic.

I don’t plan to read the comments since the internet turns most people into idiots but I did read the first couple. It is amazing how Arizona residents can turn anything into a debate on illegal immigration.

UPDATE: The article is also posted here. It’s the same article but there are different comments (no immigration nutjobs yet).

By an amazing coincidence that I’m sure had nothing to with the article (yes that was sarcasm) DDD just called and said they have approved the walker. However they haven’t changed their mind on the stander, so we still have our hearing on Monday.

We are still on schedule for our court date July 28. We had hoped the DDD would cave but they are apparently going to go through with it. We got a letter from the Attorney General naming which of their lawyers is going to represent the DDD. We are going with self-representation. Cathy called a legal aid charity but they have far more requests than lawyers. We think it will be OK, but that’s what we thought about the original claim and the appeal!

We have enlisted the help of a local newspaper columnist. She usually writes about kids who have fallen through the cracks of Child Protection Services but she was appropriately outraged by Maria’s story. She is going to interview us on Monday. Our concern isn’t so much about Maria specifically. We wonder how many other people the DDD are screwing over who don’t know how to fight back.

Maria’s been having seizures lately, a couple a day pretty regularly. Then she had a bunch on Tuesday and ten today; both times she got a dose of Clonazepam (the emergency medicine). The PT suggested that since Maria is gaining weight (she’s up to 33.5 pounds by Cathy’s scale) that means her regular dose is too low. We realized this today (Friday) at 4:30 pm of course. Cathy’s going to try to get through before the weekend to see if he’ll up the dose over the phone but it may have to wait until Monday.

Maria continues to work hard toward walking. Today she took 57 steps in a row when working with the PT! She still needs support since she can’t manage to hold her own weight, but she initiates the steps. She gets bursts of 10-20 steps that are in a very regular tick-tock rhythm. Today was the first time I’d seen it and it’s really great! We figure she must have heard about the hearing and is hoping to walk for the judge.