Maria Rose

Maria’s breathing started getting noticeably better on Sunday the 25th. She hasn’t needed the extra medication (Albuterol) much this week. Cathy’s been letting Manolis give it to her mostly to give him a chance to practice with the inhaler on the medicine that’s not important rather than the daily stuff.

However Maria never lets us relax. Today she has had at least three short seizures and several more maybes. It’s been months since she last had one and even though we know they will come back now and then it’s frustrating to see them return. What’s really heartbreaking is that she gets so down when she has them. She obviously hates them as much as or more than we do.

I took her to hippotherapy and she was still pretty cranky and withdrawn. However the instant the helmet went on, she relaxed and got a big grin. She had fun on the horse although she was very stiff and uncooperative. After the ride she refused to walk for the PT. She just doesn’t want to walk or stand lately. At first it was being sick and now it may just be that she’s out of the habit. We still put her in the stander and she even seems to enjoy it but she just hangs in the walker and won’t do anything.

After hippotherapy she usually goes down for a nap but didn’t today, the day she had her augcom evaluation. Then as soon the augcom meeting started she started to fade. Within a half hour or less she was dead asleep. The augcom people talked to us about the different devices available, asked about Maria’s abilities and motivations, and tried to get a good picture of what devices to focus on. Her regular speech and occupational therapists were there plus me, Sue, Manolis and Cathy so they had plenty of information to work with. We were all pretty impressed by the Vmax and it has a tremendous number of features. It’s actually a computer running Windows rather than a canned device so that it is incredibly versatile. They also showed us the Tango! (the therapists all seem impressed by but I thought it was all wrong for her) and the Tech/Talk (much less expensive but much less functionality).

They are going to come back Monday to see if they can catch Maria in a better mood. Cathy is going to keep her home from school, let her sleep late, etc. so they can interact with her and see which devices she works with the best.

Cathy is slowly getting into a rhythm with all the new asthma stuff. Maria of course is not happy about the face mask or the nose spray and it’s sometimes a struggle to get her to take it. Cathy has had to wrap her in a blanket to get her to stop struggling sometimes. It’s a tough balancing act similar to what we faced with her seizure medicine. We want to give her some measure of control although obviously not to the extent she doesn’t take the medicine. Letting her make some decisions helps make the experience less miserable plus is part of that wacky “people with disabilities are human beings who have rights” idea. Using the ReliaDose to give her the seizure medicine means that she can stop sucking and take a break. She still has to get all the medicine but at least she has some control.

It’s a bit harder with the mask. We have to keep the mask tight against her face through the entire treatment which lasts six breaths. If she turns her head or pushes the mask away, the seal breaks and the medicine gets out. However the harder we force her the harder she fights. I think that once we all get used to it things will go more smoothly, just like the other meds, but it’s not fun in the short term.

However it’s not all bad news. The state has approved habilitation care and an augcom device for Maria. Habilitation means teaching someone a new life skill, not to be confused with rehabilitation which is the re-teaching of a lost life skill. We do habilitation with her all the time, teaching her something as simple as pulling her shirt over her head, and it wasn’t until a year or so ago we realized that that was a payable benefit. Sue has been trained as the habilitation person though they are still working out the bureaucratic nitpicks like setting goals.

The augcom (augmentative communication) device, as you may remember, is a device that helps Maria talk to us by pushing buttons. She will be evaluated next Friday at home to see which augcom device would suit her. They range from a single large button that can play a sound or activate a toy to dynamic computer touch screens that can have hundreds of commands. Obviously the latter would be too complicated for Maria but they will try to find a device that fits her needs, her abilities and her likes and dislikes. For example she loves music and responds to it so we want a device we can add short clips of music to so she’ll have the eat song, the bath song, the milk song and so on. I have no idea how we’ll choose the right music but will figure something out.

Finally, we had another one of those moments where we take pleasure in odd things about Maria. Today I was pleased to see Maria was scared of getting pinched by the buckle on the helmet strap at hippotherapy. Why? She has never been pinched by that buckle but she has occasionally been pinched by the one in the car seat if we aren’t careful, though not for several weeks. The fact she was scared of it means two important things. One, she is anticipating an event that happened weeks ago rather than forgetting it as soon as it has happened. More important, she is associating an event on the seat belt buckle to an event on the helmet strap buckle. The fact she can recognize that two completely separate objects have something like the risk of pinching in common is a HUGE cognitive development step. So although it sounds bizarre, we are very excited that Maria was afraid of getting hurt.

Last Thursday I took Maria to the pediatrician because her breathing just wasn’t sounding good. She said Maria sounded “tighter” than she’d ever heard her, gave her 5 days of steroids, and suggested we go to a pulmonologist. Amazingly, we got in to the pulmonologist today and she said Maria has asthma. A nurse came in with a book on asthma, several prescriptions, an inhaler, and instructions on her new medications. It’s so complicated that she had to go through it about 5 times for me.

We have to put a mask with a spacer (looks like a plastic bottle) tightly on her face, squirt the inhaler and wait until she takes in 6 good breaths. That’s twice a day. Then I’m supposed to clean out her nose and squirt some nose spray in each nostril. That’s just once a day. And if she’s doing worse than normal, then in addition to those (and her other medications and therapies, etc), we’re supposed to either do a 15-minute breathing treatment or use another type of inhaler medicine, mask tight on face, squirt, 6 breaths, wait 1 minute, then do it again 1-3 more times. That’s every 3-4 hours for 24 hours and if she’s still having trouble breathing we either call the hospital or take her to the emergency room, or I guess call 911 if it’s really bad. That was all so complicated that I forgot if I gave Maria her seizure medicine this evening. I know it’s going to be routine soon, but holy crap, will it ever end. When I told Manolis, he started splashing cold water on his face because he was having hot flashes.

Saturday I bought a set of tires because mine were about ready to completely wear out, to the tune of $550. Today Manolis had a flat and they couldn’t fix it and bottom line is he got a new set of tires too. $500. I’m still paying our car repair bills –for some reason my car, Manolis’ old car, and his new car all had large repair bills within a very short time of each other. (although to be fair, our angel, George, did pay for my car’s repairs). Happy New Year.

But, there was a miracle on the Hudson, the Arizona Cardinals are going to the Super Bowl, and Barack Obama will soon be our president, so there is still hope and miracles and wonderful things, it’s just hard to remember them sometimes.

We got some bad news last week. Maria’s music therapist is giving up her west side clients. She’s one of our favorite therapists and has brought out tremendous things in Maria, but it’s a 50 mile drive one way for her. Unfortunately, lack of west side services is an ongoing problem in Phoenix for everything from therapists to good restaurants. We don’t know of any available ones at this one but we know of two organizations that are looking. Hey therapists – there are tons of available clients on the west side of Phoenix so if you need a job, come out here!

Maria got back to hippotherapy after a 3-week holiday break and didn’t do well. She wouldn’t sit up and fought the PT every step of the way. Part of it was a game for her and part of it was that she was tired. However later in the day she did great for the speech therapist. The most exciting thing was that she was doing a very clear “more” sign. Until now we’ve been taking any random movement that brings her hands together as the sign for more, but this was a clear and deliberate back and forth motion. She did it over and over as the therapist would stop massaging her cheeks. Later in the day I was doing something with her, I can’t remember what, and she was doing it with me as well. It’s a signal that she might be figuring out this communication thing.

This illustrates how she’s lost interest in the PT side of things lately. She doesn’t want to walk anymore and isn’t as interested in standing, though she still does that some. We know that’s part of the process as she emphasizes different areas at different times but it’s frustrating.

Manolis is feeling better, although he got a spontaneous nose bleed as he was putting Maria in the car the other day. He got a couple drops on her and was upset about that. They called the doctor’s office and he never bothered calling them back. Very annoying. Other than that everything is going fine.

Ok, 3rd time’s the charm? This is the 3rd time I’m attempting to write this post. Each time it gets shorter. Each time it seems to disappear, even tho’ I saved it last time. Yea, I have time & patience for this….

In short – we (Andy, Maria, & I) went to Albuquerque to visit Grandpa for New Year’s weekend, since we didn’t make it for Thanksgiving. We wanted to check out the new place they’re living (a place that has independent living, assisted living, and nursing home all in one place). We stayed in one of the rooms they rent for $70/night. We were expecting a full kitchen, but the room we got only had a tiny fridge, so I had to haul Maria’s food back and forth between our rooms, but still better than staying in a hotel off the property.

I like the place and their apartment. Smaller than their house, but still not too bad. They’re mostly settled in, still adjusting to the space, what fits what doesn’t. Grandma Ida’s not too happy about not being able to drive–I don’t blame her. We ate in the dining hall for breakfast every day since it was included with the room. Good food, good stuff for Maria, but as is her usual for when we travel–she didn’t eat much. For lunch & dinner, we often fed her avocado (easy & good). Once (went to Santa Fe for dinner to see step-bro David and wife Karen) we tried to feed her a tiny bit of chile and she carried on like we tried to poison her. The chile wasn’t very hot this trip, so she must have gotten the one and only hot piece of chile in the state…. (before you think I’m torturing my poor baby, she has eaten spicy food before and really enjoys it).

Maria sure likes her Grandpa! When she was on his lap, she was putting her hand down his shirt and playing with the hair on his chest. He didn’t mind until she started pulling… She was also playing with her Auntie Barb (step-sis) and husband Dennis. She’s such a friendly girl! It’s cute until she pulls her shennanigans (hair pulling, biting, pinching, etc). Of course, I didn’t have my camera with me during the most cute interactions, but maybe next time.

We had a nice lunch with Aunt Louise & cousin Susan. Didn’t get to see the rest of the clan. I wish I could let Aunt Louise hold Maria more, but I’m just worried about her being too fast for Aunt Louise…

We ended up leaving a day early to miss the storm. I’m glad we did! They got quite a bit up in Flagstaff. Plus, Manolis missed us. He stayed home because his nose still isn’t quite healed.

Yesterday we had our quarterly ISP (Individual Service Plan) review with the state Division of Developmental Disabilities (DDD). I’ve already requested to have a different coordinator, but his boss wanted him to finish up this review before handing it off to someone else. He’s a nice enough guy but he and I don’t communicate in a similar way. I talk and he looks at me. I ask questions and he looks at me. Our annual ISP in Sept took 3 hours, and it took over 2 months to get a copy of it (and I only got it because I called to get a copy). We’re trying to get additional services (Habilitation, which is teaching Maria skills that will help her live independently, and Attendant Care, which is basically what Sue does daily–bathing, feeding, changing, etc). He kept telling me they keep turning it down. I asked why. He said because they’re asking what’s changed with the family. We gave him about 10 things he could write down. He just looked at me. I asked him what are you looking for, what answer do you want. He said what’s changed. At least once, I had to get up and leave the room because I wanted to throttle him. Sue was there trying to help; a woman from an agency training Sue to be the Habilitation and Attendant Care provider was there trying to help; the physical therapist came in trying to help. He ended up getting very upset and offended and left. I called his supervisor and told him what went down, mostly blaming it on him and I not communicating well. I kinda feel he thinks it’s more me than him, but said to call anytime I have questions or comments and he’d get me that new coordinator. As they say in the texting world….OMG!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!