Archive for November, 2006

It’s a pirate’s life for Maria

Thursday, November 30th, 2006

I know that today isn’t International Talk Like A Pirate Day, but in honor of today’s news we will run the entry through the English-to-Pirate Translator.

Arrr. T’ good new, maties, be that Maria doesn’t have t’ get glasses…yet. However t’ doctor be concerned that her eaye aren’t workin’ together like they should, so wants her t’ wear a patch over one eye an hour a day. It isn’t lazy eye, but I think she’s movin’ in that direction. He wants t’ stop it before it gets thar. We go aft in two t’ three months and she will probably get glasses then, ye scurvy dogs. Arrr.

Maria’s developmental leap

Wednesday, November 29th, 2006

One of Maria’s therapists was saying that this latest jump in development is normal. All kids make sudden progress around the age of 2 1/2. I was surprised that Maria would have the same jump considering how behind she is, but apparently this is more of an emotional leap. It’s similar to how Maria is going through the terrible twos right now – well, her sweet and calm version of the terrible twos anyhow. It’s an emotional stage rather than a cognitive one.

Maria has her first meeting with the new feeding therapist tomorrow, then her eye appointment where she will probably get a prescription for glasses. The vision therapist says that Maria will probably realize that the glasses are helping her so won’t pull them off so much. We will be able to attach her hearing aids to the glasses so we won’t have that string getting tangled everywhere.

Quick update

Wednesday, November 22nd, 2006

I’m not sure why it’s been nearly two weeks since the last update. Things have been kind of busy but I didn’t think it had been that long.

Maria’s visiting her grandpa for the holidays and will be seeing her cousins tomorrow. The trip has her a little out of sorts and she’s not eating or sleeping as much as she should.

She’s still in her “good progress” phase. The AFOs seem to have helped with her foot position and standing. She can even stand up from a sitting position if we support her for balance and she’s in the mood. She’s also really been into hugging lately. She had her first Cheetos and really seemed to like the crunch.

She has her first meeting with the new feeding therapist on the 30th. She also has her appointment to get glasses that day. Keeping the glasses on her will be a “fun” little challenge.

Making giant leaps

Friday, November 10th, 2006

Both the speech and music therapists commented that Maria is more interactive and aware than they’ve ever seen her. She’s in a really good place right now and seems to be making large advances. Music therapy went really well yesterday. From her belly she pushed herself up onto her elbows, she reacted to some very soft sounds she was making with the guitar and drum, and she grabbed my hand and pulled it over to the guitar like she was trying to get me to play. There have also been several incidents when she’s eating (she’s really been into self-feeding lately) where she seemed to be trying to put the spoon in my mouth.

In the “bad news” column, we are starting to wonder if one of her issues might be cerebral palsy. When we got Maria’s AFOs the orthotics specialist asked if she had ever been diagnosed with CP. That question caught both of us by surprise. Cathy asked the physical therapist about it and the PT hemmed and hawed and said, “Well, it doesn’t really matter since it wouldn’t change her treatment.” That pretty much says “yes” to me. Cathy got a book yesterday about teaching motor skills to kids with cerebral palsy and similar disorders. One chapter talked about the typical movements and reflexes in CP and many of them seemed to match Maria. The PT is right – it doesn’t really matter. Cerebral palsy refers to motor disorders due to brain damage and is more of a descriptive term than a precise diagnosis. Still, it’s a little disturbing.

Neurosurgeon Update

Wednesday, November 8th, 2006

Maria went to the neurosurgeon yesterday for a follow-up to the hospital visit. He said we don’t know what happened and probably never will. If she acts like that again, we will observe her again (in the hospital??), and if it happens repeatedly, then he’ll do surgery–exploration or revision or shunt replacement–none of which sound appealing.

I asked about her ventricles being slightly larger than before, but he wasn’t concerned about it. He said it was good that the EEG didn’t show any sign of seizure. And that was about it.

I told Uncle Andy that if the doc told us any bad news, it was his fault (Andy’s). Looks like he’s off the hook, this time. (There have been times in the past where Andy hasn’t come to an appointment and they say bad stuff, which naturally must be his fault for not being there.)

Maria had another bad night last night. She (and we) was up most of the night, flailing. We tried the usual things: diaper change, cereal, milk, Tylenol, holding her, leaving her alone; and unusual things: homeopathic calms for babies, homeopathic colic pills. She finally fell asleep at 4:30 or so. Now she’s sleeping soundly. She also vomited a bit. I’m sure it’s nothing, but before she went into the hospital, she had a couple nights that were very similar to this…

Pediatric Followup

Monday, November 6th, 2006

Maria had a followup with the pediatrician today. The big concern is that she is still at the same weight she was over a year ago. We need to start adding butter, cream cheese, etc. to things she eats and try to get her to eat more. She said “no more crackers” because they are not calorie-dense enough, which is a pity as they are great for Maria to practice picking up. Cathy goes back in a month and if Maria’s weight isn’t up the pediatrician is going to send them to a nutritionist.

She also said Cathy needs to check Maria’s heart rate when she is asleep to see if it is still fluctuating like it was in the hospital. If it is then she will order an EKG – because god knows we certainly need ANOTHER diagnosis, ANOTHER doctor, and ANOTHER test.


Friday, November 3rd, 2006

For Halloween I dressed Maria up as a princess (what else?). Doesn’t she look sweet? Not sure if she was into it all that much, but I sure enjoyed it.

I took her to the door just a couple times to hand out candy, but it was too much of a challenge to hold her, open the door, and hand out candy; plus none of the kids noticed her, so I figured it wasn’t worth the hassel. She was getting pretty sleepy by that point anyway since she hadn’t had a nap all day. I did notice Maria seeming to perk up a bit when kids were at the door. She seems to be noticing other little kids more, I think I first noticed it on the cruise. When she hears them talking or screeching, she does her cute little body wiggle excitement thing. I’ve got to get her around other toddlers more often.

I thought Susie (reporter) did a good job on the article (even though she called me a bureaucrat from a state agency). The part about Maria at the end made me cry. I love the picture they used. They were going to come to our house to take some photos for the article, but we were still in the hospital, so Andy sent them some to choose from. Now if only the state would take some of the article to heart and change what they’re planning for the early intervention program…

Maria is famous

Thursday, November 2nd, 2006

The article that features Maria came out today. It is called “Broken“. They talk about her towards the end of the article and use her picture.

EDIT: Fixed the link to Maria’s article