Lions Camp 2015

January 8th, 2015

The registration is open for Camp Tatiyee, the Lions Camp that Maria went to a year and a half ago that we had mixed emotions about. We’ve been trying to decide if she should go back this summer or not. I was looking at their website out of curiosity and found something they added that caught my eye. It’s always said that the youngest camper is 7 years old, but now I noticed that they added age 3 as the youngest mental age. So that answers the question of whether Maria is going back to camp. Like ever. I’m not sure if I’m relieved or pissed.

And on another note, one of the organizations that Maria gets her therapy from sent out a Survey Monkey. Boy did I have a lot of pent-up pissed-off-ness to vent at them. I like the therapists, but they never return calls, they don’t have enough equipment, they don’t have enough therapists — I could go on and on. I even put my name and address, think they’ll contact me? They haven’t up to this point, why should they start now? (insert falling out of chair laughing emoji).

Christmas and New Year’s!

January 6th, 2015

Maria had 2 weeks off from school. We had plans to go up north to see the snow, but it didn’t snow; to go see the Butterfly Wonderland, but decided not to; to go to the zoo, but it was too cold. It was unseasonably cold here, so we just pretty much hung out at home and chilled. Maria slept a lot. I worked on and off. Manolis got a few days off in a row. As usual, Maria got lots of clothes and stuffed animals for Christmas. She’s been very healthy so far this year. I’m glad we didn’t try to go to NM, since they had to shut down I-40 in both directions one day because of the weather.

I did discover something rather disturbing–Maria has been sleeping on her tummy with her right hand in the left side of her mouth. I’ve been noticing for a while that her teeth are getting crooked, but just the other day, I noticed that the gums around one of her first molars on the top left is receeding so badly that you can almost see the root of the tooth. I think it’s from the pressure of her hand rather than from too hard of brushing. I noticed it because it was bleeding a lot when I brushed her teeth one day. We’re going to see the dentist soon to see what the what. And I put a brace on her arm to disuade her from putting it in her mouth, and only succeeded in her rubbing a large raw circle into her chin. Perfect! So I had to write one of my long descriptive emails to her teachers explaining the chin, the tooth, and the bite marks on her arm. Awesome!

Eye Doc Appt

December 25th, 2014

Monday we went to Maria’s eye doctor for a fairly depressing visit. The good news is the ERG was normal (or at least not changed from 2011), which means her optic nerve issue isn’t retina-related, which he says is good. She’s had several MRIs, so we know it’s not caused by a tumor. 3 years ago, they tapped her shunt to measure the pressure and it was fine, so the shunt is working and it doesn’t appear to be caused by increased pressure in the ventricles.

So what could be making her optic nerve get worse? He said it’s fairly unusual for it to get worse, and it’s fairly unusual for it to be worse on the outside (periphery?) of the nerve and less worse in the middle? When he described it, I pictured the left nerve is worse on the outside, by the ear, and better on the inside, toward the middle of the brain. Same with the right nerve. Not sure if I understand/remember it correctly. I asked him to write up what he told me and this is what he wrote:

“Relatively late juvenile onset of bilateral optic atrophy without retinal or known CNS cause. Please consider mitochondrial/genetic workup. Thanks.”

I made an appt with the geneticist, but we can’t get in for another month. So if she has some sort of mitochondrial disease (the doc says there are dozens of types), it’s possible that some medication could help. *big sigh* I read up on it a little bit and if you have a mitochondrial disease, it can prevent your body from processing certain nutrients resulting in damage of various organs and other body parts, like optic nerves. If this is the case, then why didn’t we go after it more aggressively 3 years ago? Is this my “fault” for not pushing the issue? Do the doctors have a responsibility to strongly encourage the parents to figure this crap out? We did do genetic testing back in 2011, but all I remember them saying is that everything is normal. What the hell does that mean? What did they test for? I know that they are making huge strides in genetic testing, so maybe we couldn’t have found anything back then anyway.

Maddening!

ERG #2

December 19th, 2014

Maria getting ERG test

ERG

Thursday after popping into my office Christmas party for a bit, and ending up with the best present there — a big, soft, stuffed moose that Maria LOVED! — we headed down to St Joe’s for Maria’s 2nd ERG (Electroretinogram, which is an eye test used to detect abnormal function of the retina [the light-detecting portion of the eye]). After waiting for more than 30 minutes to check in, we went right up for the test. We went into a darkish room, and the tech put an electrode on the top of Maria’s head, plus about 2-3 more on each side of her head, and one under each eye (quite uncomfortable for her). For a little while, she patched one eye, then the other. All the while, she had a bright strobe light in front of her. After doing that for a little while, she shut the door so it was completely dark, then turned on a red light. After 20 minutes, she did the strobe light again, blinking fast and slow. Fortunately, it didn’t trigger a seizure.

Maria did great! I could tell she was so sick of being in her wheelchair, but she behaved. She hadn’t had much to eat all day, nor to drink, but she was such a trooper! No complaining, not much fidgeting, no grabbing the wires.

Our appt with the prescribing eye doctor is Monday. I just hope they can get the results to him in time for him to go over them with us. The reason he requested the ERG is because at our last visit, he said Maria’s optic nerve seems to be getting worse again, like it was 3 years ago. We never figured out why it was getting worse 3 years ago, and I wonder if we’ll figure it out this time. All I know is it’s serious and I think if it keeps getting worse, she could become blind. (Of course, if it’s so damn serious, why does it take them 2-3 weeks to return a phone call and why did it take 4 months to schedule this test? Same thing happened last time. Annoying!!)

Maria has 2 weeks off now. We’re trying to decide whether to go somewhere during that time or just hang out here. We’ll probably just stay here.

Nutcracker!

December 19th, 2014

   Maria @ Symphony Hall

Maria @ Symphony Hall

Maria and I went to Nutcracker, performed by Ballet Arizona at Symphony Hall last Saturday. It was the first time I’d seen it live and it was amazing! Maria was very interested in it, was watching very intently for quite a while. The part I liked the best was the Waltzing Flowers (I think–white ballerinas dancing while snow was falling. So awesome!) I can’t believe we haven’t been to it before.

The show was very long and before it was over, Maria started making her poopy noise, so I took her to the bathroom, put her on the floor, saw that she wasn’t done, so I put her on the toilet until she was done, then I had to put her back on the floor to put on a new diaper, then picked her up and put her back in her wheelchair. She weighs about 70 pounds now. I do not understand why they don’t have a table in a handicap stall so people like me can change people like Maria w/o having to put them on the floor. It’s ridiculous–how do people do it when they can’t lift their person off the floor? We ended up leaving after all that because Maria was hungry, tired, and thirsty, I’d imagine….

The lobby was decorated so nice with many Christmas trees, opportunities to have your picture taken with ballerinas, nutcrackers and all sorts of other things to buy, and so many people!

Next year we might want to go see Swan Lake or something. This year we couldn’t see our friend, John, who plays bass in the Symphony. We usually say hi after the show, but he couldn’t stick around this time. Maria likes him. First time they met, she pulled him down to her.

Thanksgiving

November 30th, 2014

Maria had the week off for Thanksgiving. We didn’t do much, except for going to Walking With Dinosaurs, which was terrific. Other than that, Maria did a whole lot of sleeping and some eating with only a bit of choking. She had a slight fever here and there, but it didn’t ever turn into anything (probably because of the sleeping). We usually go to NM for Thanksgiving, but we were just there a month ago and I just don’t have the energy to pack up all our crap and go over there so soon. Manolis had to work on the holiday, so Maria slept and I chopped vegetables for cooking, eating, and smoothies (Nutribullet smoothies) to possibly counteract at least some of the sweets Manolis brings home.

Overachiever (and Other Updates)

October 31st, 2014

Maria decided to go crazy and lost 3 teeth in one week. Sue pulled out one, which was very loose. The dentist pulled out the one next to it (lower left). The third one, shockingly, I found on the carpet — I didn’t even know it was loose! That one was from the lower right. I hope this means her drooling will be slowing down a bit.

Maria also got on the honor roll again (all A’s and B’s). Unfortunately, I missed the ceremony this time, too much going on at work. We had our parent-teacher conference, which was pretty uneventful.

Unlike her annual IEP (individual education plan) meeting, which was mostly ok, but one individual was somewhat inappriate and nobody called her out on it — not the principal, not the alleged facilitator (who never says a word). One of our home therapists come to the meeting and said in her school if someone had acted like that, the principal would have taken her out in the hall and reprimanded her. Since this was the 2nd IEP meeting (or more) in which someone was not very respectful and nobody ever calls them on it, then I feel that is the culture, which isn’t acceptable to me, so I’m trying to work with them to be more open and less defensive, offensive, etc.

We finally went to Preferred Homecare to get “fitted” for a new wheelchair and a bigger stander. We met with a physical therapist, an ATP (assistive technology professional or seating specialist), and a equipment rep? I’m not actually sure what Chris is, but he sure knows his stuff! The stander fits a person up to 5’6″, so it should last her for several years (unlike the one she has now that’s only 2 years old and she’s already grown out of it). The wheelchair is going to have a purple frame and sparkly purple cushions, so it’s got to be good, right?

Tomorrow is Halloween. Maria is going to be Cleopatra. Manolis isn’t working, so hopefully he can come trick-or-treating with us. It seems to go better when he comes.

Modified Barium Swallow – Nailed it!

October 2nd, 2014

Ok, well that’s a bit of exaggeration, but Maria did her barium swallow test this week and didn’t aspirate on any thickness of liquid–even super thin (or whatever it’s called). I was shocked! There wasn’t any “penetration” either (penetration is sorta like the precursor to aspiration, the way I understand it). The liquid kinda hangs in her throat for a few seconds, which can be dangerous if she sucks in breath, then she can aspirate, but since they didn’t see any aspiration, they removed the “NPO” or nothing by mouth order that they had before. woohoo.

Since then, we’ve been feeding her fairly often, and she’s been doing great! Not much choking, good volume intake. Really, I couldn’t be happier! We’re not giving her milk as successfully. Since it’s been so long, I’ve said no more bottle, only sippy or straw cups. We’re experimenting with different thicknesses and cups and thickeners. We’re not letting school feed her yet (which I’m sure they are happy about), but I think she will do fine with it. Whenever I start sending food, I think I’ll just send applesauce at first, since she loves it so much.

So the sucky things this week are I had another migraine. It was pretty bad, lasted 2 days. And I went to an ortho doc because my right wrist has been hurting. I thought it was overuse from typing, texting, mousing, touch-screening, exacerbated by lifting (Maria). I thought the doc was going to pat me on the head and say, “there, there, little girl, just lay off a while and take some ibuprofen”, but noooooo. She said it’s De Quervein’s Tenosynovitis or De Quervein’s Syndrome. Mayo Clinic website says it’s “a painful condition affecting the tendons on the thumb side of your wrist. It will probably hurt every time you turn your wrist, grasp anything or make a fist.” She also said it’s caused by lifting Maria and the typing, etc probably barely affects it. She said I need to either stop lifting Maria, or use the part of my forearm nearer my elbow, further from my wrist, or hire someone to help lift her. What?! And she gave me a brace to wear for at least 2 weeks. And she shot it up with Cortisone, and holy crap did that hurt. But as she was giving me the shot, all I could think of is all the things Maria has been through, so suck it up, and that really helped! (but it still hurt like a mutha!) Oh yea, and if it doesn’t get better, there’s always surgery. Awesome.

Let’s Go Drive in a 500-Year Flood!

September 10th, 2014

Because our lives are not complex enough, Maria had a barium swallow scheduled for early the morning of the highest one day rainfall ever recorded in Phoenix history since they have been keeping records. One newscaster called it a 500-year flood, not sure if that’s true or not, but it sounds super dramatic!

I knew the 51 highway was closed, so we left early and went down 7th street. After driving for an hour (usually takes 30-40 minutes), and being about half way there, I made a couple phone calls and they said it would be better to reschedule. What she didn’t tell me is that most of their staff hadn’t shown up yet because of all the flooding and closed highways. So we turned on Northern, had to drive through one of those flooded areas, totally freaked me out, but many others were doing it and there was nowhere else to go, and 45 minutes later, we were home. I gave Maria milk via gtube, let her take a mini nap and took her to school.

Never a dull moment. And speaking of non-dull moments, Sunday, Manolis was pulling Maria toward him while she was on her tummy and I looked at her when he flipped her onto her back, and her gtube had popped out! OMG! So I ran and got a new one, gave it to him, he popped it in and we went about our business. I am so glad he was home for that! After last weekend or so when I was alone with her and her foot got caught in her wheelchair and I couldn’t recline it to release her foot for quite a while, I did not need any more drama!

And how was your day?

Stirring Up A Wheelchair ShitStorm

September 9th, 2014

Gotta keep the cursing headlines going, right? So after 9 months of wheelchair adjustments, replacements, additions, deletions, modifications, driving here, going there with Maria’s wheelchair, I finally hit my limit. Most people would have hit it months ago, but we all know I’m more stubborn than most!

Last weekend, I wrote a 3-page letter detailing from when Maria’s wheelchair was ordered, through all the nonsense, and finally to the recommendations we’ve recently gotten from a few neutral, but experienced, parties. I wrote it to the head of Symbius, who provided the chair; and to Dan, head of Touchstone, PT who spec’ed and ordered the chair; with a cc to our support coordinator with the state Division of Developmental Disabilities; and a cc to Blue Cross, our primary insurance company. I emailed it out late Sunday night, and early Monday morning got a call from Symbius and an email from Dan.

Symbius wants to do another (I think this would be the third?) wheelchair evaluation. They want a PT present. Neither of our PTs know enough about seating and components and brands, etc to feel comfortable in that role, so do we use the one from Touchstone, who apparently is a rep for the seating we got, which means he would surely recommend that system again? Should we go with the one we met and liked from Preferred Homecare? Should we go with one I heard of who works at one of the hospitals and is supposed to be real good at seating, but has never met Maria? I dunno. Symbius has called 3 times today trying to set something up.

So I called Blue Cross, trying to see what they think, if they have any recommendations about what to do, if they will pay for a new chair–that type of thing. I assumed my letter went into a black hole over there, but perhaps someone could give me some general advice. As I was explaining the situation, the guy said not only did he have my letter in his hand (mind you, this is about 36 hrs from when I sent it), but one of their customer care people had a bunch of notes about it and she had already called Symbius! I cannot tell you how impressed I was by that!

So then I talked with the woman who had our case file and it sounds like they are going to pay for a whole new chair for us. Of course by the time we go through all the crap to get one, Maria will probably have outgrown the one she has, but at least we have somewhat of a direction…

Thank God I can write and took good enough notes to piece together all the events of the past 9 months.