Archive for January, 2006

Still sick

Tuesday, January 31st, 2006

Maria’s still fighting her whatever-it-is, though she seems to be on the mend. She obviously felt better on Saturday and was more cheerful than before. Yesterday she was eating and drinking better than she has been. I’m sure that’s because her Uncle Andy was there 🙂 OK, I suppose the antibiotics may have something to do with it, and they turn her poops the most interesting color!

It is interesting to notice that during this illness she has had a very noticeable decrease in vision. As she feels better, her vision is improving. My understanding is that is very common with cortical vision impairment. It just takes too much energy to process the visual signals so the body degrades vision so it can concentrate on healing.

Maria’s got a new stander (on loan) which looks to be this model. We haven’t used it yet since we want the physical therapist around the first time we strap her in. It looks sturdier and more stable than the other one, though it takes up a lot of space. I got her in the crawler yesterday for the first time in a long time and she was really doing well. She’d push off my hands with her feet, and even managed to move herself around some. She also pulled herself along on the ground during tummy time and continues to get up on hands and knees.

She has her BAER and MRI on Friday. We don’t expect any surprises there, though we are particularly curious about the BAER results.

Better and worse

Thursday, January 26th, 2006

Maria is both better and worse today. Her vomitting stopped but she’s continued to have an intermittent fever and developed a nasty cough. I noticed it was a little barky this morning and was wondering about croup. We took her to the pediatrician and he was leaning toward croup as well until he listened to her lungs. Croup occurs in the throat (in adults it manifests as laryngitis). He could hear “junkiness” in her lungs so decided it is more likely a minor case of pneumonia despite the slight barking sound. So she starts on a course of antibiotics and we hope she will be better soon.

One of the problems with how often she’s been sick, other than just the “being sick” part, is that all of her therapies come to a halt. Her therapy appointments get cancelled and, I don’t know about the nanny, but I don’t put her in the stander or the crawler or do a lot of the other things. An occasional break from that kind of thing is good (she made good progress after the break during her first cold in December), but she’s been missing so much lately. As far behind as she is in development (not that it matters, we love her anyhow, we’re not comparing her to other babies, blah blah blah), it’s frustrating for things to get delayed again.

In other news, Maria’s nanny just found out her husband has cancer, apparently quite severe. It’s too early to know how it’s going to go, but we’re hoping for the best. Now I know that this news is much worse for them than it is for us, but the selfish bastard side of me immediately wondered how the situation is going to affect Maria’s care. After all, the entire world revolves around Maria. She’s been so great (the nanny, that is, not Maria…um, not that Maria’s not great…oh, you know what I mean). Cathy was very lucky to have found her so we’re hoping things turn out well for everyone involved.

Sick again

Tuesday, January 24th, 2006

It looks like poor Miss Maria is sick again, this time with some kind of stomach flu. She’s become quite a little puke monster. Of course, someone has already suggested shunt failure. After all, every time some kid with hydrocephalus scratches her nose, it must be shunt failure. I know people mean well, but *sigh*. Anyhow, shunt failure gives Exorcist-style projectile vomiting not the regular stuff that Maria is doing so we know it’s not that.

Maria was actually less fussy yesterday even though she was sick and had gotten very little sleep. She would get cranky, throw up, then be happy for a while. She did really well with the physical therapist and continues to show signs of imminent crawling. The PT was playing with a little flashlight and Maria did something kind of interesting. Whenever the light was shown into her left eye, she would turn her head like she was trying to get her right eye in the light. She didn’t do the same thing when the light was shined into her right eye. It makes me wonder if her vision is much poorer in her left eye. We’ll have to mention that to the ophthalmologist on Thursday.

Speaking of eyes, I think we’ve mentioned before that her eyes seem out of alignment. Both the ophthalmologist and the vision therapist have checked and say they are fine. I finally realized why they look like that. The inside corner of her left eyelid is a little droopy just like her grandma’s were and it makes her left eye look off center. It’s not really noticeable unless you are obsessively looking for problems like we do 🙂

Little Miss Crankypants

Tuesday, January 17th, 2006

Maria has been really fussy for a few days. She’s uncomfortable and squirmy and every once in a while starts yelling for no real reason. She’s been constipated so she might just be crampy. She also may be doing some more teething.

Cathy saw her pull herself up onto her elbows and knees by herself and I’ve seen her try and pull herself along to get to a toy. Crawling may be coming up soon. We haven’t been having her sit up much because she gets fussier when she does.

Zoolights

Friday, January 13th, 2006

Cathy and I took Maria to Zoolights last week. Every holiday season the zoo puts up displays of lights shaped like animals. Maria seemed to enjoy it. She’d look at the lights and reach out toward them. On the way over I was playing with her in the car and she could see toys held up in front of her even though it was pretty dark. It’s still so hard to judge how good her vision is, but it’s nice to see her improving.

She has a busy month coming up. She sees her ophthalmologist, has another BAER (hearing) test and MRI, and sees a new neurologist. Her speech therapist is retiring at the end of February, which is a pity because she’s done so much good for Maria. Cathy’s found another one who seems like she might be good, though we’re not sure Maria can get in. She gives preference to cochlear implant kids, but she said she would try and squeeze Maria in.

Maria is completely recovered from her cold. She’s been eating and drinking like a maniac, probably making up for how poorly she ate when she was sick. She’s gotten so big that I finally had to turn the car seat around to face forward because she just doesn’t fit if it faces backward. We resisted doing that since her sitting up was so delayed, but she has more control now so did really well yesterday in her first ride. Cathy tried carrying her in a backpack that the PT brought over, and Maria was moving around and craning her neck to see things as they walked along.

Happy New Year

Tuesday, January 3rd, 2006

Happy new year everyone! As Andy said, it’s been a rough holiday season. Maria and I are doing much better, Manolis never got so much as a sniffle. He flushes his sinuses every day with salt water – gross but effective.

Maria’s been making so many improvements lately! I don’t know if it’s natural progression, or if the chiropractor who does his unusual Qigong techniques is helping. Her vision seems to be getting better, she’s been grabbing her toys more, using both hands more, holding her bottle with both hands, and she’s doing really well with sitting. She still leans very far forward, but can often sit by herself for a little while.

I keep going back and forth between being excited that she’s doing so well and freaking out that she’s not doing better faster. The freaking out part usually happens after I’ve been around another baby. I do like it when she spends time with her local “cousin”, a 11-month old boy. She’s finally becoming aware of his presence and reaches out for him a lot. They hold hands and she smiles when he touches her. It’s very sweet.

The other thing Maria’s been doing a lot is interacting with Kijana, our younger but bigger cat. Maria pets her then grabs a handful of fur and skin; fortunately Kijana is very mellow about it (but don’t worry we watch them very carefully). Kijana also likes to lick Maria’s hands and feet, which makes her smile (Maria, not Kijana). But my favorite part is when Kijana rubs her head and body on Maria’s head and body. I tried to get it on video, but Kijana heard the camera and came a runnin’. I’ll keep trying. It really is cute!