Maria Rose

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!

Today we went to the hospital for three procedures: a one-bang brain MRI, botox injections in Maria’s legs, and a EGD (upper GI scoping) with biopsies and to implant a probe that takes reflux measurements for 48 hrs. The MRI looked normal, botox went well, EGD looked good with only one area of potential inflammation. She was also supposed to have blood tests, but the doc I asked to write the prescription wasn’t able to talk to the doc who requested it, so he wasn’t sure exactly what was wanted, and now he’s on vacation for 2 weeks. Irritates the crap out of me because the last time we had to get blood, it took 5 trips–I shit you not–to 4 different locations with a LOT of poking because she’s so hard to draw blood from. During this trip, even though Maria was asleep, they had so much trouble placing an IV, they had to go for her foot. It would have been so much less trauma for Maria if they could have gotten blood today while she was asleep, but Nooooooo. So now, I’m going to have to make lots of calls to lots of doctors to see if I can get someone else to get me the proper script, and then we’re going to have to go through the bs to find someone who can draw her blood.

The anesthesiologist was awesome, he sang to her while gassing her to sleep–never seen that before. As usual, Maria was out for extra long afterward, but when she finally woke up, she was wide awake, not groggy. I’ve never seen anything like it! She seemed good after we got home also, ate well, was moving a lot, smiley. They want lots of documentation to track everything they want with the reflux probe, but hopefully we’ll get some good answers on what’s causing her discomfort.

The MRI and blood test were to help diagnose the cause of further optic nerve damage that was discovered early last week. Quite troublesome, esp since we can’t get the blood test immediately.

We ate in the new cafeteria, which just opened today. It’s super nice! Huge and lots of good food choices. Much of the hospital isn’t moving to the new section for several more months, so it’s a bit of a hike to get to it when your child is in the “old” section of the hospital, but it’s worth it! As usual, everyone was super nice, so that makes a traumatic day a little bit easier.

Oh yea, and my mystery disease is back. Yea, the one I had surgery for last August. Just freakin awesome.

Cathy was having trouble posting pictures on the Christmas 2010 entry. I fixed it but you’ll have to go that that entry to see them.

I think I was 16 or 17 when I got my first car–which I had to pay for, of course. $1000 for a ‘69 Pontiac Lemans. My dad let me buy it so I wouldn’t hitchhike between school and work anymore.

Maria is 6 years old and got her first car–which her parents are paying for. It’s a brand new (almost–a year old–it’s practically new) van that barely fits into the garage. It’s roomy enough for her wheelchair AND her bike AND 2 people, plus Maria, of course. 4 people can ride in the van (w/o the bike), but Maria has to sit farther back. Or we could fit 2 wheelchairs and 2 other people. It feels huge, especially when parking, but we’ll get used to it.

Car payments for the next 10 years. Better than back surgery from putting Maria in and out of the RAV as she gets bigger and heavier! Now our family has 3 people and 3 cars. wow.

We FINALLY got Maria’s new wheelchair today. The frame is a deep purplish blue and the cushions are electric pink. It’s quite lovely (for a stinkin’ wheelchair). It’s wider, taller, and longer than her Swifty stroller. It does fold down, so it fit in my car, but it’s not an easy 1-person thing. Do-able, but not easy. It took them 2 hours to put it together and adjust it, and when we got home, I realized the adjustable arm rests still aren’t right. Arg! Plus, they sent ginormous ankle straps instead of the butterfly vest/chest strap that we ordered. They gave us a temporary chest strap so she can use the new chair on the bus now, rather than waiting even longer for the butterfly vest. The people who orderred it and put it together/adjusted it are very nice, but I’m so not impressed with their customer service. They weren’t at all communicative during the ordering, shipping process; and today, I kept asking what’s this for, what’s that for, does it do this, how do you do that. At least we have it now. She should have it for several years, because there’s lots of room for growth in it and she’s at the bottom of the size range for it. I’d post a picture, but I need to download them off my camera still. soon….

She looks real good in the chair, seems to like it. Wish I could be at school with her tomorrow to see how the kids like it!

Manoli’s having a bit of a hard time with it (sucks to have to get a wheelchair for your precious 6-year old girl). Me too, but I’m trying to focus on the pretty colors. It’s as wide as her bike, so the bike should fit in the van when we get it. That’s really going to suck when we have to start paying car payments. But I’ve promised myself to quit complaining about having to get (pay for) a wheelchair van after we bring one home. I don’t want Maria to think I’m blaming her. I’ve had a year or so to think about it and complain about it, so in the next couple weeks it’ll be time to shut up, accept it, and move on.

Speaking of bikes — Maria got invited to a BMX birthday party! I’m going to take her and her bike and hope there’s a place she can ride w/o getting run over by the wild ones. I think she’ll really enjoy it, and I’m sure the kids will be excited that she can bike with them!

We had a nice, quiet Christmas. It seemed like Maria knew it was Christmas — she didn’t sleep well the night before and she was wild on Christmas day! Just goofy and active and in a good mood. She only opened a few of her presents, then a few more the day after, and she even has 2 more that she hasn’t opened yet. She wasn’t quite as into opening the presents this year as she was for her birthday; maybe because most of them were wrapped, rather than in gift bags. She prefers gift bags.

She went for a bike ride with Uncle Andy just before sunset and saw lots of her friends and schoolmates on the way, which is awesome! The AZ Cardinals played an exciting game Christmas evening, lots of phone calls with friends and family, so all-in-all Christmas was good.

Over the weekend, we took Maria for a little hike. Manolis held her arms around his neck, like she was riding piggy back (except of course, her legs were dangling free). It didn’t look too comfortable, but she seemed to like it! We also found out that Maria likes coffee, coke (she drank about half a can of unthickened Coke at 7pm one night — courtesy of her daddy, duh), and candy canes.

Yesterday was a big day–Maria’s daddy had eye surgery (the whites of one eye was growing into the iris, don’t remember what it’s called) and Maria was P.E. student of the day!!! I don’t know what that means, but it’s very exciting!

Manolis is doing well. His doc said he looked good at his follow-up appt today. He has to take it easy for a week or so, we can’t travel for 2 wks, and I think he looks like he’s in pain or discomfort (tho’ he won’t admit it); but in the scheme of things, he’s doing great and all is well.

Although things have been not super great with Maria (not sleeping well, sticking her fingers down her throat, not eating so great, more tired than usual), she still seems to be doing great in school and they seem to love her and take good care of her. For example, a recent email from her general ed teacher said “P.S. Maria couldn’t be more loved in this room. The kids look forward to her being in here and are bummed when she is not! When she had that rash and they couldn’t touch her, they were going through withdrawal!” She’s in a 1st/2nd grade classroom and the kids line up to read to her. Her teacher even got special permission from the school principal to have 2 extra recesses per week in the afternoons just so the kids could play/interact with Maria with structured games. I think that is such a thoughtful and wonderful thing of her teacher to do. This year is similar to her 2 years in preschool as far as integration and acceptance from the other kids. Kindergarten was ok, but not nearly so welcoming.

This weekend we’re going to the Shriner’s Christmas Party. I hope to get a picture of Maria with Santa. I’m a little apprehensive about going, but feel it’s important, because of Santa and seeing other kids who are similar to Maria, and because I think I’m going to ask them to help us pay for the wheelchair van…..so it’ll be good to remind them who Maria is and how cute she is!

Still no wheelchair. It’s been more than 6 months since our first visit to be fitted for the new chair. It was back-ordered until Nov 24, but when I called this week, they hadn’t gotten it yet. They were supposed to return my call with an update, but it’s been 2-3 days, and I haven’t heard back from them. They were nice people, but very unhelpful. Never any updates, unless asked to by the liaison working with us from Accordant Healthcare (part of Blue Cross). The liaison is a nurse and is AWESOME! She calls me frequently and calls the medical equipment company often to ask them what’s the hold-up. Oh well, I guess it’s just prolonging our van purchase (which is a good thing!)

We went to the Faerie Festival in Estrella Park in Goodyear. The weather wasn’t so great and the festival certainly could have been better, but the face painting was fantastic!

Maria lost her first tooth the week before Thanksgiving; of course it was the first of 3 nights I was away, so I missed it. I keep meaning to put it under her pillow for the tooth fairy, but I think she’s on vacation, so I’ll wait a bit.

Manolis, Maria, and I went to NM for Thanksgiving. Andy stayed home to work (and take care of the kitties). We had a nice time, as usual. Maria really enjoys hanging out with her Grandpa and he with her, although he probably would never admit it. It was good to see Aunt Louise and the cousins; and of course, good food as usual. She tried to stick her fingers down her throat and vomit about 50 times on the way home.

Maria had an appt with the gastroenterologist this week. He’s going to scope her to see if her vomiting, not sleeping, nose rubbing, not eating, etc is from reflux or Sandifer’s Syndrome or food allergies or something with the white hairs in the intestines or a virus. He’s also going to put some capsule down her throat that will register the level of acid going up and down for two days. He thinks it will be before Christmas. I like the doc (much better than her first one…). She lost 2 1/2 pounds since the last time she was weighed. Not so great, but not surprising since she hasn’t been eating or drinking well lately.

It’s been great having Manolis home. Maria’s happier. So are Manolis and I. I’m much more relaxed. We’re all very glad he’s retired now and can stay home to be a house husband.

Manolis got back from Greece a week ago. First time ever his plane wasn’t late!! Maria reached out for him while he was still walking toward us (awesome!), and then when he picked her up, she was doing her back-arching thing (not so awesome). She’s been in a much better mood since he’s been back, but I think she’s still a little mad at him because she turns her head (while smiling) when he comes up to kiss her. As the days have passed, at least she’s hugging him now. She’s gotten more affectionate in the past 5 months — she hugs more often and holds on tighter for longer, and she rubs (pets) our arms and backs more. Very sweet.

I took Manolis to the ear/nose/throat guy Monday. The cauterized his nose (again!) but he’s still having some trouble with it, so not sure what to do. They cleaned his ears and he’s less dizzy. Did a hearing test, but we had to leave before they gave us the results–we’d been there 90 minutes and I had to be at Maria’s school for her field trip. Tuesday I took him to the eye doc. He has to have surgery on his eye in December — the white part is growing into the iris (gross!). Doc says it’s no big deal (easy for him to say!), but he seems good, competent, not so arrogant as the nose doc.

Maria’s field trip Monday was fun! It was sponsored by the fire fighters, so they had their fire hoses out, they used the jaws of life to destroy a car, they took us on a ride in the fire engine (that was fun!!), but the time I saw Maria smile the most is when they were leading exercises. Elisa (her aide) took her out of her stroller and had her doing all the exercises with the other kids and Maria was grinning like a monkey! I didn’t get very good pictures, but it was wonderful! That’s why we like her so much!

And as for me, it’s amazing how much more relaxed I am now that Manolis is back. I’m able to concentrate more at work and get more done. Now we just have to wait the 3 months and see if he’s really going to start getting his retirement $$….