Archive for August, 2011

Maria shows off her new gams

Monday, August 29th, 2011

Maria got her casts off last week, but the ordeal isn’t over. She’s harder handle now than when she was in the casts. Almost any time we move her she winces or cries out. I think it’s often muscle spasms but sometimes it’s obviously pain. She’s getting lots of Tylenol and Valium but those aren’t helping much. I figured she’d be weak after getting the casts off, but I never expected her to be even more immobilized. Still, it should improve as she heals.

Unfortunately her physical therapist, the one who’s been with her since she was about two seconds old, gave Maria’s spot away in the schedule. Cathy told her not to come by during the surgery recovery since she couldn’t do much, but now she’s having trouble fitting Maria back in. But Maria really needs the PT sooner rather than later.

Maria’s new legs are…odd. Her thighs are really curved and she’s kind of bow-legged. She actually doesn’t fit in her old feeding chair anymore because she’s so wide across her thighs!

Maria also went to the dentist and the geneticist this week. The dentist says she’s getting a real vertical gap in her teeth from the thumb sucking. The dentist talked about putting in a retainer but is afraid Maria would just flick it out, which I’m sure she would. Thumb sucking and crooked teeth are pretty low on our priority list so it’s hard to get that worked up about it.

The genetics doctor said that testing has made enormous leaps even over the last five years, in a large part going back to the Human Genome Project. They can find so much more than they used to, and the science is advancing so fast that if Maria’s tests come back negative the doctor wants her tested again in two years because the tests available then will be much more precise.

Obviously Maria’s not likely to pass her genes onto another generation, but it would still be a good idea to have a complete medical picture. Some of these developmental problems have other implications like organ deterioration, and it would be better to know early.

Maria’s 1st week back in school

Saturday, August 20th, 2011

Maria did better than I expected at school this week. Of course, everyone was so happy to see her! She actually made it through an entire day on Wednesday. The other days she fell asleep in early afternoon. One or two days the nurse couldn’t even get her medicine down her, she was so OUT.

As far as eating and drinking — not much of an improvement. We’re still fighting it a lot. She’s not doing well at all with this. I’ve had to stick that damn tube in her nose many times this week, and I’ve been having a hard time with it more often than I like. I know it has to do with positioning, mostly, if she tilts her head back, it doesn’t go past the curve in the nasal cavity –TMI, I know!! I’m so proud of Manoli, though–yesterday morning I had to tube her before school and I told him he could go away, but he said he’d help. And I had the hardest damn time that time. I don’t know how many tries it took, and she was yelling! Oh my….it SUCKED! But, we got ‘er done, and she promptly fell asleep.

Of course, I pulled the tube out before school, then had to tube her again in the evening. Gave her 2 cans of Nutren (like Pediasure), then at 12:30 or 1am, I gave her another 2 cans. She was asleep when I started the drip, but I guess she can feel it and she woke up. I was laying in bed with her because I don’t trust her to keep the tube in while it’s dripping, and danged if she didn’t stay awake the entire 2 hrs it took (I dripped it slower than usual–1 can/hour). Since she was still awake, I let Manoli have the next shift, and he said she stayed awake for another couple hours or so.

He said she kept yelling, like maybe she was in pain. Shen sneezed the tube out at about 3am, and kept yelling, so it wasn’t the tube bothering her. She’s been yelling a lot in her sleep, like she’s having nightmares. Poor sweet thing!

Today, thank goodness, I asked Sue to come over for part of the day. She tried so hard for so long to get Maria to eat, then to drink, same with Andy last night, try again and again and nicely and patiently and nothing. Finally at about noon today Maria started drinking out of her bottle, not sure how much she got down. Wow. It’s amazing how much this type of stress takes out of you. I’ve found my multi-tasking capabilities are greatly compromised (partly from my pain medication, too, I’m pretty sure), and I’m even more forgetful than usual.

Tuesday it will have been 6 weeks, so we have an appt with the ortho surgeon. I do so hope she gets all the crap off and he doesn’t say–oh, let’s keep it on for another week or more.. Then Friday we’re going to see a geneticist. I’m very curious if Maria does have some sort of chromosomal abnormality. Might give us more info? or depress me more. we’ll see!

1st Day of 2nd Grade!

Monday, August 15th, 2011

Can you believe Maria’s in 2nd Grade?! Can you believe her mom scheduled an appt at the eye doc the morning of the 1st day of school before school? I thought it’d be a quick in-and-out, but although we were the 1st ones there at 7:45am, we still waited 45 minutes to be called back and 2 doses of dilating drops later…. it was 10am before Maria got to school. Annoying! Her optic nerve looks stable, not worse, good! Her astigmatism is worse, esp in her right eye, not related to the optic nerve. So she needs new glasses again…$200 cha-ching! Everyone was so happy to see her. The school wanted to meet with me last week, in fact I went in twice to make sure they knew everything about her casts, etc. So different than summer school! She made it to 12:30p when the nurse called and said she was so out of it, she couldn’t give her her medicine. Tomorrow’s another day!

Yesterday we went to soccer. She did ok for a while, then faded. But Jill couldn’t be swayed, she got everyone to play parachute and duck-duck-goose to try and make Maria smile. I think she felt kinda crappy all weekend, actually.

Monday eve and I stuck the tube in again. 8oz per day just isn’t enough liquid in AZ in August. I may try and slip in another can as long as I’m up… then I’ll try and get another couple cans in her in the morning, if she hasn’t pulled the tube out yet.

Tubes and shunts and casts, oh my

Friday, August 5th, 2011

We’ve all reluctantly come to the conclusion it may be time for the G-tube. Even Manolis agrees. Cathy called the gastroenterologist’s office about it and they said she has to meet with a nutritionist first, and that won’t be until mid-September. We are a little concerned because Maria needs better nutrition *now* while she’s recovering.

Maria started eating well early this week, though she was still drinking less than she should. She was even off the NG tube because she was getting enough orally. That lasted all of two days. Now she’s back to eating little and drinking little. Cathy’s going to put the tube back in tonight and see how much Nutren (basically heavily vitamin fortified milk) she can get down it before Maria pulls it out again. Maria’s also fighting her medicine a LOT.

Maria saw the orthopedic surgeon this week. He’s happy with how she’s healing. He agrees with the decision on the G-tube but is fine with waiting until September. He said they couldn’t do it now anyhow since Maria is already compromised from the hip surgery. Even though the G-tube is pretty minor surgery, it’s still inpatient and should be done when she’s stronger.

We got into see the neurosurgeon today. You know, the neurosurgeon we’ve been trying to get an answer from about Maria’s optic nerve atrophy for MONTHS. He said it’s definitely not from shunt pressure and explained why. I guess that’s why he hasn’t called – no news is good news. However that still doesn’t explain what’s happening. Just to be 100% sure everything’s fine he’s going to tap Maria’s shunt next week – stick a needle in and see if some fluid oozes out. It’s a quick procedure in his office.

The neurosurgeon was VERY concerned about Maria’s lack of eating and drinking. He pointed out that after surgery the body needs a lot more calories to recover. That’s kind of obvious in hindsight, and I’m surprised the orthopedist wasn’t more concerned. So we are going to push the NG tube more and it seems increasingly certain Maria’s going to get a tube in her belly.

We’ve heard lots of second hand stories about parents who went the G-tube route. Every story ends with the parents being really happy with it. It takes the stress out of eating, the kid gains more weight, is more healthy and energetic and so on. Still, it sucks to do it.

Maria isn’t scheduled to get her casts and bracing and so on off until just over a week past the beginning of school. We aren’t sure how that’s going to work. Since she can be transported only in the new, loaner wheelchair that means she can’t ride the bus–the loaner doesn’t have a rigid frame, isn’t crash tested and isn’t designed for transport. We also don’t know how well she’s going to manage in school, but we’ll figure that out then.

Her legs will of course be really weak after the casts come off so there will be a lot of work before she can get back to standing and walking. She’ll be much stronger in the long run, but there’s still a long road ahead of us.