Archive for April, 2011

Easter!

Monday, April 25th, 2011

The optic nerve issue is weighing heavy on my mind, but her neurologist called me today to discuss and he said he’d call the neurosurgeon. He agrees this isn’t something we can drag our heels with. To possibly complicate matters his office is joining with Phoenix Children’s Hospital on June 1st, plus the people at PCH in one building are moving to the new building during the same timeframe, so it’s perfect timing for things to slip through the cracks. He gave me some advice on how not to allow that to happen. He’ll order a full brain MRI with sedation, with and without contrast so we can see how her white matter is doing. We’ve known that she’s a little shy of white matter, so we’ll see how it looks now. Concurrently, the neurosurgeon is the one to order the shunt-tap overnight stay. Of course, I’m scheduled to go out of town next week and it’s a fairly important trip that I’d very much hate to cancel.

Ok, about Easter — on Saturday a church sponsored an Easter Egg hunt at Maria’s school, so we participated with the 4- to 6-year old age group. Maria’s first Easter Egg Hunt! All the kids started at one end of the grass. Fortunately, where we parked, we were at the tail end of the grass, so it wasn’t crazy, busy, chaotic. I got Maria out of her chair and stood her up in front of a bright pink egg. She immediately crouched down and grabbed the egg on her first try!! It was so awesome to see! (see, her vision seems fine….). A lady came up to me and said she saw I had a camera so if I wanted, she’d take our picture. She did. She asked if we had a bag, I said no, we just wanted the experience, we’re just going to grab a couple eggs. She said she happened to have a bag, so she gave it to us and I put the couple eggs in it. Then a little boy came up with a basket full of eggs (you could tell he really wanted to fill his basket); he looked at Maria, he looked at his basket, he hesitated for a minute and put some eggs from his basket into her bag. Then he went around and grabbed a couple more eggs off the ground and put them in her bag. Then he grabbed a couple more eggs from his basket and put them in her bag. It was the sweetest thing!!! His dad was nearby and I let him know how sweet his son was. It was so cute!!

Then we went to the table to turn in her eggs for candy. The lady gave Maria a bag of candy, then gave her another bag of candy for good measure. From there we saw the Easter Bunny and got a couple photos of him/her with Maria. It didn’t appear that s/he was comfortable with kiddos like Maria, but I got some cute pics anyway! (my camera broke, so I was using Manolis’, sure do miss my camera…but I’ve never really bonded with it, it’s a Canon S3IS or something like that, so I’m using this as an excuse to buy a Nikon with some of our tax refund, nice, huh?)

After the Easter Egg Hunt, we grabbed Maria’s daddy and went to see Rio (movie). It was cute, but I wish there’d been more of the flying, singing, colorful birds; and I really wish we’d gone to the 3D movie, rather than the 2D version. (I’m going to go to the 3D version, love those!). Maria was mildly entertained, but tired. Not as big of a hit as I thought.

Easter Day itself was low-key. Uncle Andy came over. We had lamb and potatoes and salad. Quiet, simple. I got some paperwork done, worked out. Maria did some walking, standing, the usual.

Test negative

Monday, April 25th, 2011

Maria’s eye pressure test turned out normal. That’s not really good news though. The next step is a shunt tap. She’ll be admitted to the hospital, they’ll stick a needle into her shunt, and monitor the pressure for 24 hours. Normally if her shunt wasn’t working right, the ventricles in her brain would swell, which would have been visible on the MRI. But there is something called “stiff ventricles” where the sides of the ventricles firm up, and don’t swell under the pressure, making pressure problems harder to diagnose.

If the pressure is high, I imagine that means she’ll get a new shunt. If it’s normal, I’m not sure what the next step is. I don’t think even the doctors know what the next step is. In any case, each day her optic nerves die a little more, so the clock is ticking.

To end on a little good news, Maria is doing really well in the walker. She moves fairly consistently and even seems to be getting the concept of direction. She seems to like the walker, reaching out for it as I put her in it. Her gait isn’t pretty, kind of an Igor-like foot drag, but just getting the concept of motion is a critical first step. It would help if we could get the silly thing adjusted right, but one of the settings won’t hold when we lock it down. It’s about time for a new walker and stander anyhow, so Cathy is going to get started on that long bureaucratic road soon.

Optic Nerve Issue

Tuesday, April 19th, 2011

I know I’m way behind on updating the blog. Seems like it’s usually after midnight by the time I have a moment to do this and then it’s too late. I don’t know if anyone out there reading this gets much out of it, but how it helps us is by being able to go back to these doc appts and re-reading what happened at them, since I can’t remember crap.

3 months ago we went to the eye doc for Maria’s routine 4-mo check-up. Background: She has cortical visual impairment, her eyes wander outward at times (I forget the name of that), she is near-sighted, and she has a pale (which means damaged) optic nerve–I think they may call it atrophy. They’ve always told me the optic nerve issue is something that won’t get better, but the CVI does, which seemed like a bigger deal; besides, I believe in miracles and I’ve always felt that some day they’ll tell us that her optic nerve has somehow “healed” itself, which is impossible, etc. So, 3 mos ago, we see the sweet eye doc who says her optic nerve is worse (more pale), and we should get an MRI to see if the pressure in her brain has increased and we should get a blood test to see the level of some enzyme or amino acid or something.

Got the (one-bang) MRI and it was fine. Tried to get the neurosurgeon to Rx the blood test but he said that was the neurologist’s gig. Neurologist didn’t know what to order, went on vacation, could never get a call back, couldn’t get the 2 docs to talk, had to wait for our scheduled appt with him and he said he didn’t know what the eye doc was looking for because it seemed like a long-shot, etc. He also said a one-bang MRI wouldn’t show what we needed to see, Maria needs a full-blown sedated MRI, which he said he’d order. Never heard another word.

Fast forward 3 months to today. Back to the eye doc. He said the optic nerve condition can be from 0 (best) to 4 (worst). Maria’s usually in the 1 range. 3 mos ago she was more like 2-3. Today when he looked, he said it was at 3+, so we need to figure out what’s causing this damage. I told him I wasn’t so happy because I feel like we’ve wasted 3 months doing nothing while more damage is occurring. He didn’t say much and what could he say, can’t get the time back, so now the plan is that he’s going to put her to sleep this Friday to check her eye pressure. It could be something like glaucoma and there’s medicine for that. If that’s good, then they stick a needle in her head (another day) for a while (I think someone said 24 hours-ish) and measure the pressure through time. This, of course, has to be done in the hospital. I don’t really know what was next because I was fixated on the image of sticking a needle in my sweet baby’s head.

I don’t know WTF he didn’t do this eye pressure test 3 months ago, but I need to let that go. Another thing it could be is her optic nerve isn’t getting the proper nutrition, but he asssured me it’s not about food, it’s about brain chemistry or something, I forget. I asked if this glaucoma thing is typical in a child like Maria and he said no.

I made an appt with a nutritionist for Maria today because she’s 35.1 lb and is almost 7. Feb 2010 she was 40 lb. I don’t know whether to freak out about that or not, as well as about her liquid intake, which for weeks has been averaging less than 20 oz/day. She’s eating well, but she’s losing a lot from not drinking that high-calorie Pediasure-whole organic milk mixture. I’m going to try and get her in to see the feeding therapist again; was going to call today, but forgot because this optic nerve thing kinda kicks my ass. And today’s only Monday!! (at least I still have visions of the Oregon coast clear in my mind; spent a long weekend there with my old gal pals.)