Maria Rose

Let me caveat this blog entry by saying I’m in a big funk because my pelvic pain issue has been raging the past few days and I’m frustrated about it….

As Andy mentioned, Maria started summer school this week. There was no orientation, no meet-the-teacher, no real info handed out besides school address, times, and bus pick-up times. Manolis and I went to the school Tuesday to meet the teacher and see the classroom. He’s nice enough, but not a good communicator. We met lots of people, but since they’re all new to me, I was having trouble placing them or remembering any names. I asked to see the classroom; there were about 4 women in there, nobody introduced themselves or told us what they did–so do they all work with Maria or do they concentrate on a couple kids? Who knows? There are no tables or chairs. I was trying to figure out what Maria does, where does she sit, etc. Had to play 20 questions to get anything. She has no walker or stander, but they did say the PT was bringing her walker over. I told them how important it is that she stands, walks, etc. to strengthen her legs in prep for surgery. She’s on the floor some and on bolsters some, but that’s not 3 hrs worth. Is she in her wheelchair? Who knows. Although she’s only in school 3 hrs/day x 4 days/week, plus about 90 min on the bus each day, she’s hardly eating or drinking anything. Why? Are they not trying hard enough? Are they being too tentative? Are they even trying at all? What the hell?! As you can tell, I’m getting pretty worked up about it, but it might be my crap flaring up, not about the school. Manolis thought it was ok, so I have to trust his judgement.

We did see Maria’s home OT who she had from 0-3 yrs old! Haven’t seen her in 4 yrs. I know this because I made her a photo book and still had it, so I sent it in for her. (she’s not with Maria, but she’s at the school). I met her vision teacher-who I really liked! Don’t recall her name. She’s sharp! I saw her hearing teacher, we like her. She does sign language for/with Maria and Maria really responds; so much so that her para (aide) who we love so much was going to take sign language in summer school, but she got called in to work at the last minute and had to miss the sign language class. Bummer! That was also a good thing, that we saw Elisa. Again, she’s not in Maria’s classroom, but she’s there and they know she knows Maria, so I told them to be sure to ask her anything if there’s questions. It’s been 3 days and I still feel traumatized–I need to know what to expect and they’re not giving it to me. I know all I need to do is ask. and ask. and call and ask. Add it to the list…

Appt with neurologist today at the CRS (Children’s Rehabilitative Service) clinic today. He said her electroretinogram and visual evoked response tests came out normal–which is pretty great considering Maria has cortical visual impairment, etc. All her tests have been “normal” (considering …), which is good, but we still don’t know what’s causing the further optic nerve atrophy. Still no callback from the neurosurgeon –it’s been a good 2 months now. We have an appt with him July 8. I don’t even know what to say to him if he can’t even bother to return my call regarding my daughter’s atrophying optic nerve. Really?! And I need to call her eye doc and see what his next move is.

We met with the neuro-developmental pediatrician last week. Hadn’t seen her in over a year. She said we should take the Amantadine for 4-6 weeks, then go off it for a week. It’s more effective that way. That’s the med that is supposed to improve hearing and cognition; the one that seemed to give her a boost of energy. She also said metabolic testing isn’t necessary for the optic nerve atrophy. Good to know. Couldn’t be of more help on that topic, besides giving me an article that was rather depressing, so I just barely skimmed it (talked about all the other issues kids with optic nerve atrophy often have, like brain damage, cognitive difficulties, etc etc) I dont’ really need to read that. The doc thinks we need to get Maria an adaptive potty seat. First I have to complete the appeal for the bath seat, which I haven’t had a chance to finish because I’ve had so much other crap to do and it’s due very soon. She also recommended a gadget that would hold Maria’s arm in position to help her eat. She said I should take Maria to my PT and see if he has good ideas on gadgets/equipment that she needs. I like seeing her to check out what some of the other docs are saying. I told her about our disappointing appt with the nutritionists, and she said she’d heard similar negative stories. They were mean, condescending, rude, etc.–even Manolis noticed!

Latest thing I heard is that the state, in all their wisdom, wants to cut the respite hours by 50%, so instead of 15 hrs/wk, it’d be 30 hrs/month. Respite is a lifeline to those single parents, and even 2-parent households. When Andy comes on Sundays during the schoolyear, it’s great because I know that Sunday is my day to do what I need for myself. So anyway, I’m going to the meeting on Maria’s birthday.

Tomorrow night we’re going to some 45-minute presentation on some new company that’s like Costco and in return, we get 2 free vouchers for a 7-day cruise on Carnival, leaving from any major port in the US. We’ve been wanting to take a Caribbean cruise, but haven’t been able to figure out how to afford it. This might be just the ticket!!

The rear tires on the van were bald–we’ve had the van for less than 3,000 miles. So the $500 for tires and $300 for alignment was taken care of by the van place (Ability Center) because the van is still under warranty. thank goodness!

We just got back from Maria’s first soccer game. She even scored two goals!

Cathy heard that the Arizona Sports Complex has indoor soccer games for special needs kids every Sunday. We were both a little skeptical – there’s disabled, and then there’s Maria. But it was a great experience!

It’s a typical Special Olympics type game where nobody keeps score and each kid participates as much as possible or desired. One kid shows up every week just to lay on the ground with his bare feet. Another kid wanders around with noise canceling headphones and is in his own world. Parents can participate or just sit back and take a break.

At first we took Maria off to the side and I stood her up so she could kick a ball. By coincidence they gave us this bright copper-colored ball which was great because Maria could see it. She was really good at kicking it! She’d kick it a couple of feet, then one of the other kids would kick it back. Later I held her up so she could walk to the ball, kick it, walk to it, kick it and so on.

The goalie let her score one goal but by this time I was tired so I let one of the staff take over. We put Maria in the wheelchair and the woman ran the wheelchair up and down the field with the crowd. They realized the ball fit under the wheelchair so she used that trick steal the ball and sneak in another goal.

They said some kids come in their walkers, so we might try that. They also said we could bring in Maria’s bike and let her ride around inside where it’s cool. Either way, she’s definitely going back.

Maria starts summer school tomorrow. We aren’t looking forward to it. Her normal school doesn’t have a summer program so she has to go to a different one, and they are pretty much the type of school parents of disabled kids complain about. Cathy has tried to educate them on Maria’s need, but they have been condescending, combative and rude. The woman she spoke with was defensive, saying they have experienced with special needs kids. Again there is disabled, and then there is Maria.

As an example, when Cathy said she was going to send in a snack and milk for Maria the woman she was speaking to said snottily that the school provided snacks and drinks for the kids. What kind of snacks? Popcorn or pretzels. OK, should we call 911 now or later? And to drink, she’d get unthickened water, another sure trip to the ER. So within two minutes they told Cathy two ways they were going to send Maria to the hospital. We are not confident.

The teacher agreed to meet with Cathy Tuesday after school, and we are hoping they don’t manage to kill Maria over the next two days.

So miuch going on, I don’t seem to update the blog as much. We got Maria’s Dynavox Maestro last week. It’s pretty cool. A little heavy, so we’re going to have to mount it. We ordered a mount, but I haven’t heard anything. I thought it would come before the device did. The device is a computer-like thing with a touch screen. We just have to learn how to program it. I need to call the company to schedule training and figure out how to train us and the home speech therapist and the school therapists and special ed teacher and her aids…..hmmmmm.

Maria’s done with 1st grade now! I went to her party for a few minutes on Thursday (I had a conference call I had to get to, which turned out to be a waste of time, dang it). The kids in her class were all signing each other’s shirts — it was so cute! They also did a Clap Out or Clap Off, where all the kids go out in the hall and clap and the 6th graders walk through the halls and high-five every one. It was so cute and sweet and sad. If I thought moving from preschool to elementary was hard…elementary to junior high will be traumatic!! (for me more than Maria!)

We missed Maria’s party in the Special Ed room because Maria was having more tests for her optic nerve. She had a Electroretinography (tests how the retina works with light) and a visual evoked response (aka visual evoked potential), which is like the BAER sedated hearing tests she used to get. Both record responses to stimuli from the central nervous system (e.g. brain stem, cerebral cortex), so it’s to see how what she sees is being transmitted (translated?) to the brain. That was Monday, haven’t heard the results yet.

Friday I made my weekly call to the neurosurgeon’s office. Last week I talked to his admin assistant who said she’d never gotten any messages about Maria, to which I said, “That’s not true! I’ve left you messages before.” I’ve talked to her, I talked to some other lady there, at least twice. This one tried to tell me I called the wrong number. Ha – then how was I talking to her?! It’s been about 4 or 5 months since this optic nerve issue began (the worsening of it), and I haven’t spoken to him once…I take that back, she got a 1-bang MRI way back then and he said it was fine.

Someone enrolled Maria in CRS (Children Rehabilitative Service), which is another insurance, I think. And we got a card with an appt with her neurosurgeon through that, sometime in June. I guess that’s what we’ll have to wait for, while her optic nerve gets paler and paler…

Anyway, I can’t believe Maria’s done with 1st grade. Her teacher was AWESOME! She’s going to be in there again because it’s a 1st/2nd classroom and the teacher has ordered tables because it will give Maria more room to maneuver and they can store some of her stuff–maybe her walker? in the classroom. The teacher has used desks for 20-some years and next year she’s getting tables. To help Maria. I know there will be benefits to the other kids too, but to do it initially for Maria just makes me want to cry or jump and shout–or maybe all 3?

2 weeks until summer school. Maria was accepted to Extended School Year. Gulp! Different school. Different teachers. Different aide. Starts earlier and is farther away. It’s 3 hrs/day M-Th for 4 wks. She’ll miss the last day or 2 because that’s when she’s having hip surgery. Big Gulp.

Maria’s sedated brain MRI was scheduled for June 6, but they had a cancellation this week so we took it. Fortunately, they called me one more time the evening before the procedure and mentioned which hospital it was scheduled in–which is a good thing, because we would have been at the other hospital at 7am!!

Neurologist called with the results. He said there were no unexpected patterns, signals, or findings. Maria has less white matter than others, but we knew that. The white matter present has no disease, irritation, or infection. That means she doesn’t have MS (whew! glad I didn’t know that was a possibility!) The ventricles look ok. I wrote down “with high pressure, you can see edema, but that’s the neurosurgeon’s area”. I don’t know if he saw edema or if he meant if there was high pressure in the brain (which is what would cause the optic atrophy getting worse), then there would be edema and there was no edema, so he thinks there’s no high pressure?? I’m not sure what he meant.

He did see some fluid in the left mastoid, which is near the sinus-like cavity below the left ear. It doesn’t mean it’s an active infection, but it doesn’t mean it’s not. He wants me to call Maria’s pediatrician. I told him Maria had a hearing test at the school several weeks ago and one of her ears showed high pressure, like infection, but I couldn’t remember which ear. When I went back to check her report, it was the left ear back then too…..that worries me a bit (esp since I’m leaving town soon). I’m going to try and get her in before I leave.

Neurologist said he’d email the neurosurgeon to tell him his findings and let him decide if it’s worth the risk to stick a needle in Maria’s head. I think he sees nothing to indicate high pressure in the brain. Then he called me back and asked if the eye doc had ever done a visual evoked response (VER) or an electroretinogram (ERG). I said I wasn’t sure. He said, you’d know it if he did, you have to stick electrodes on the head to do it. He said kids with CVI (cortical visual impairment) may or may not have the visual evoked response present, but the ERG should be there regardless of CVI. So that will give us 2 more pieces of info. Then it goes back to the eye doc’s court because it is an eye problem. Hmmmmm.

Even though I’ve called the neurosurgeon several times, I haven’t gotten a call-back. I’m hoping an email from the neurologist will get a rise out of him (of course I thought the “Maria’s shunt may need to be re-set since she had a sedated MRI” would get him, but that was Thursday and this is Sunday, so I guess not.)

On the bright side, Maria has been so smiley and sweet lately. She’s back to eating well almost every meal, and her drinking has improved, although not where I’d like it to be, but it’s better than it was!

The optic nerve issue is weighing heavy on my mind, but her neurologist called me today to discuss and he said he’d call the neurosurgeon. He agrees this isn’t something we can drag our heels with. To possibly complicate matters his office is joining with Phoenix Children’s Hospital on June 1st, plus the people at PCH in one building are moving to the new building during the same timeframe, so it’s perfect timing for things to slip through the cracks. He gave me some advice on how not to allow that to happen. He’ll order a full brain MRI with sedation, with and without contrast so we can see how her white matter is doing. We’ve known that she’s a little shy of white matter, so we’ll see how it looks now. Concurrently, the neurosurgeon is the one to order the shunt-tap overnight stay. Of course, I’m scheduled to go out of town next week and it’s a fairly important trip that I’d very much hate to cancel.

Ok, about Easter — on Saturday a church sponsored an Easter Egg hunt at Maria’s school, so we participated with the 4- to 6-year old age group. Maria’s first Easter Egg Hunt! All the kids started at one end of the grass. Fortunately, where we parked, we were at the tail end of the grass, so it wasn’t crazy, busy, chaotic. I got Maria out of her chair and stood her up in front of a bright pink egg. She immediately crouched down and grabbed the egg on her first try!! It was so awesome to see! (see, her vision seems fine….). A lady came up to me and said she saw I had a camera so if I wanted, she’d take our picture. She did. She asked if we had a bag, I said no, we just wanted the experience, we’re just going to grab a couple eggs. She said she happened to have a bag, so she gave it to us and I put the couple eggs in it. Then a little boy came up with a basket full of eggs (you could tell he really wanted to fill his basket); he looked at Maria, he looked at his basket, he hesitated for a minute and put some eggs from his basket into her bag. Then he went around and grabbed a couple more eggs off the ground and put them in her bag. Then he grabbed a couple more eggs from his basket and put them in her bag. It was the sweetest thing!!! His dad was nearby and I let him know how sweet his son was. It was so cute!!

Then we went to the table to turn in her eggs for candy. The lady gave Maria a bag of candy, then gave her another bag of candy for good measure. From there we saw the Easter Bunny and got a couple photos of him/her with Maria. It didn’t appear that s/he was comfortable with kiddos like Maria, but I got some cute pics anyway! (my camera broke, so I was using Manolis’, sure do miss my camera…but I’ve never really bonded with it, it’s a Canon S3IS or something like that, so I’m using this as an excuse to buy a Nikon with some of our tax refund, nice, huh?)

After the Easter Egg Hunt, we grabbed Maria’s daddy and went to see Rio (movie). It was cute, but I wish there’d been more of the flying, singing, colorful birds; and I really wish we’d gone to the 3D movie, rather than the 2D version. (I’m going to go to the 3D version, love those!). Maria was mildly entertained, but tired. Not as big of a hit as I thought.

Easter Day itself was low-key. Uncle Andy came over. We had lamb and potatoes and salad. Quiet, simple. I got some paperwork done, worked out. Maria did some walking, standing, the usual.

Maria’s eye pressure test turned out normal. That’s not really good news though. The next step is a shunt tap. She’ll be admitted to the hospital, they’ll stick a needle into her shunt, and monitor the pressure for 24 hours. Normally if her shunt wasn’t working right, the ventricles in her brain would swell, which would have been visible on the MRI. But there is something called “stiff ventricles” where the sides of the ventricles firm up, and don’t swell under the pressure, making pressure problems harder to diagnose.

If the pressure is high, I imagine that means she’ll get a new shunt. If it’s normal, I’m not sure what the next step is. I don’t think even the doctors know what the next step is. In any case, each day her optic nerves die a little more, so the clock is ticking.

To end on a little good news, Maria is doing really well in the walker. She moves fairly consistently and even seems to be getting the concept of direction. She seems to like the walker, reaching out for it as I put her in it. Her gait isn’t pretty, kind of an Igor-like foot drag, but just getting the concept of motion is a critical first step. It would help if we could get the silly thing adjusted right, but one of the settings won’t hold when we lock it down. It’s about time for a new walker and stander anyhow, so Cathy is going to get started on that long bureaucratic road soon.

I know I’m way behind on updating the blog. Seems like it’s usually after midnight by the time I have a moment to do this and then it’s too late. I don’t know if anyone out there reading this gets much out of it, but how it helps us is by being able to go back to these doc appts and re-reading what happened at them, since I can’t remember crap.

3 months ago we went to the eye doc for Maria’s routine 4-mo check-up. Background: She has cortical visual impairment, her eyes wander outward at times (I forget the name of that), she is near-sighted, and she has a pale (which means damaged) optic nerve–I think they may call it atrophy. They’ve always told me the optic nerve issue is something that won’t get better, but the CVI does, which seemed like a bigger deal; besides, I believe in miracles and I’ve always felt that some day they’ll tell us that her optic nerve has somehow “healed” itself, which is impossible, etc. So, 3 mos ago, we see the sweet eye doc who says her optic nerve is worse (more pale), and we should get an MRI to see if the pressure in her brain has increased and we should get a blood test to see the level of some enzyme or amino acid or something.

Got the (one-bang) MRI and it was fine. Tried to get the neurosurgeon to Rx the blood test but he said that was the neurologist’s gig. Neurologist didn’t know what to order, went on vacation, could never get a call back, couldn’t get the 2 docs to talk, had to wait for our scheduled appt with him and he said he didn’t know what the eye doc was looking for because it seemed like a long-shot, etc. He also said a one-bang MRI wouldn’t show what we needed to see, Maria needs a full-blown sedated MRI, which he said he’d order. Never heard another word.

Fast forward 3 months to today. Back to the eye doc. He said the optic nerve condition can be from 0 (best) to 4 (worst). Maria’s usually in the 1 range. 3 mos ago she was more like 2-3. Today when he looked, he said it was at 3+, so we need to figure out what’s causing this damage. I told him I wasn’t so happy because I feel like we’ve wasted 3 months doing nothing while more damage is occurring. He didn’t say much and what could he say, can’t get the time back, so now the plan is that he’s going to put her to sleep this Friday to check her eye pressure. It could be something like glaucoma and there’s medicine for that. If that’s good, then they stick a needle in her head (another day) for a while (I think someone said 24 hours-ish) and measure the pressure through time. This, of course, has to be done in the hospital. I don’t really know what was next because I was fixated on the image of sticking a needle in my sweet baby’s head.

I don’t know WTF he didn’t do this eye pressure test 3 months ago, but I need to let that go. Another thing it could be is her optic nerve isn’t getting the proper nutrition, but he asssured me it’s not about food, it’s about brain chemistry or something, I forget. I asked if this glaucoma thing is typical in a child like Maria and he said no.

I made an appt with a nutritionist for Maria today because she’s 35.1 lb and is almost 7. Feb 2010 she was 40 lb. I don’t know whether to freak out about that or not, as well as about her liquid intake, which for weeks has been averaging less than 20 oz/day. She’s eating well, but she’s losing a lot from not drinking that high-calorie Pediasure-whole organic milk mixture. I’m going to try and get her in to see the feeding therapist again; was going to call today, but forgot because this optic nerve thing kinda kicks my ass. And today’s only Monday!! (at least I still have visions of the Oregon coast clear in my mind; spent a long weekend there with my old gal pals.)

Maria had another augcom (augmentative communication device) evaluation Friday. This one went much better then the augcomm evalutation she had two years ago. This was a different organization and they actually *gasp* listened to what we had to say! Rather than trying to shove some bad device on us, they tried to figure out what would be best for Maria.

They agreed the Tech/Talk is a bad device, especially for someone like her. We ended up deciding on the Dynavox Maestro, a device similar to the one we think she should have gotten two years ago, but much smaller and lighter. Not only is it a communication device, but has a web browser so we can use it to read online books they assign her in school, and is a standalone Windows 7 computer which can run any touchscreen-capable software. We are much more excited about this than we ever were about the Tech/Talk.

In less happy news, Maria is in one of her not eating and drinking stages. Plus she resists taking her medicine most days. She’s been badly constipated for a couple of months now, and not drinking just makes that worse. Just this morning I tried water, two kinds of juice, and chocolate milk and after two hours of that she has taken about an ounce of fluid.

She and Cathy went to Special Day for Special Kids, which is put on every year by Raising Special Kids. Maria rode the train and the carousel and had a lot of fun. They couldn’t stay longer because Maria had two therapy appointments, but it’s good to get her out to do a few things.

It’s been a while since we’ve written an update…. Last week there were 2 days in a row that Maria walked in her Miniwalk walker across our yard and to the end of the neighbor’s yard (on the sidewalk)–which is super far compared to what she usually does. Nanny Sue was so excited that when she called me, she was hoarse from yelling so much. At school, Maria’s been in General Ed all morning, which allows her to be outside with her class more often. They’ve told me that since she’s been outside in her walker, she’s been doing a lot more walking.

She’s also been using her communication switches (like the Big Mac switch) appropriately a lot more often; for example, one day at lunch the aide was talking with the nurse and ignoring Maria, so Maria kept hitting the button that said “I want soup” because it was clam chowder with salmon — one of her favorites. She also hits the button a lot when she’s eating ice cream. It just seems that in the past couple of weeks, things have been coming together for her and she’s been more successful at more things.

We got our house modified (thanks to the State). They gave us a portable ramp, which we have in the garage, revised the threshold from the laundry room to the garage, widened Maria’s bedroom door, modified the hinge on the master bedroom door, and the big one–ripped out the tub/shower in the master bath and put in a roll-in shower. We’ve ordered a new shower chair on wheels, so we can put Maria onto it, then roll her into the shower. Between that and the new wheelchair van, we don’t have to lift Maria as much, which is better for our backs, but I think I’ve already hurt mine, since it appears I have a slipped disk….

We’re still trying to figure out why Maria’s optic nerve is sustaining more damage. Our last visit with the eye doc was a little discouraging. I’m having a bit of a communication issue with her docs trying to figure out what’s causing it. She got a one-bang MRI, and now I understand that should’ve been a full brain MRI to be able to get the info needed–so that’s several hundreds of $$ wasted because the type of MRI wasn’t specified….. Argh. Also, the eye doc is recommending a blood test to determine if there’s a metabolic disorder, but the neurologist (who’s supposed to order the test) said it’s probably not that blah blah blah, but I don’t know where that leaves us. I’m glad Maria’s been doing so well because it’d be darn difficult if she was going through medical crap while I am too.

Maria went to the dentist for her 6-mo check up and has no cavities again, which is great since they’d have to put her under general anesthesia in a hospital to fill it. If this happens, then they can also get x-rays, because there ain’t no way they could get them otherwise!

The Mama, on the other hand, went to the dentist last week, and they found a cracked molar. Not just one crack–2 vertical and 1 horizontal crack. So I have to get another crown, even though I’m not done paying for my previous ones yet. The dentist is very gentle and sweet, and I especially like that he will prescribe a valium-like drug to take before coming in–as long as you have a driver.

My week next week is like many in Maria’s past. Monday I see the nurse practitioner about the return of my mystery disease. Tuesday I see a new doc to get established (haven’t found a good primary care doc here yet). Wednesday it’s back to the dentist to start the crown. If it aint one of us, it’s the other.

It was very cold in the house this morning. Maria managed to not only get out of bed, but she got out of her pajama bottoms and her socks also. Manolis found her on the tile floor, half naked, at about 7am. Fortunately, I was sleeping with a heating pad, so he put her in bed with me and I put the heating pad on her ice cold legs. Poor sweet thing. I don’t know why she didn’t yell.

One way we’re using the Big Mac switch these days, in addition to saying “can I have a bite please”, we’ve recorded “Mama, would you come here please”, so when I’m in the kitchen or another part of the house, she can push the button and I come running. She pushed it 7 times when the speech therapist was here last week!