Archive for January, 2011

Big Day at PCH

Monday, January 31st, 2011

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.

Pictures below

Friday, January 14th, 2011

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.

Maria got a new car!

Friday, January 14th, 2011

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.

New Wheelchair!

Wednesday, January 5th, 2011

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!