Two hospitals, 295 miles apart, in less than 4 hours. Beat that!

4 am. That's when my alarm went off this morning. 45 minutes later Danny and I were on the road to Bakersfield to see Dr. Tawansy, his retinal specialist. We don't go often (once or twice a year) to the high risk / ROP clinic Dr. Tawansy holds at Kern Medical Center. We don't really need to. But lately I've noticed that Danny's left eye seems to be shrinking back into his head. So, off we trudged to the valley.

It's weird to sit in a tiny room surrounded by non-English speaking mothers and their micro-preemies with my ginormous 3 year old who weighed in at a respectable 7lb 3oz when born 5 weeks early. I feel like a poser.

It was mostly good news today. They eye drops I stopped over a year ago without asking permission are no longer necessary. In fact, The good doctor said I probably did the right thing since he obviously doesn't need them. Ha! Take that Daddy-O!

The Incredible Shrinking Eye, however, is every bit the harbinger of possible bad things to come that it would seem to be. It seems his eyes aren't producing/generating - whatever eyes do - enough pressure to maintain proper eye size. This is fairly typical and to be expected. Unfortunately, if his eye shrinks below 50% of it's normal size it can start affecting the growth of his eye socket. Which would require the use of schleral shells to help act as a "place holder" for the eye socket. They are sort of half-prosthetic eyes that fit over the real eye. Sound really uncomfortable, doesn't it? Well, we'll follow up on that later.

But here is the shocking news. Danny has light perception.

Did you see how calmly I said that? Like it's no big deal? Yeah. No big deal. Except Danny can see something! Even if it is only light. It's more than we ever thought he could see. More than we thought he ever would see. Can you see my smile from there?

When Dr. Tawansy shined his light in Danny's eye, D squinched his eye shut, shied his head away and brought his hand up to block the source of the light. And the doctor had never touched him. But he did nonchalantly confirm the light perception when I mentioned it. Holy cow!

We got home at 1:30. Just in time for Ben to call from school crying because he'd fallen on his injured wrist again while playing soccer at school. sigh

I left Danny at the sitters, picked Ben up from school and headed to my second hospital in four hours. So much for working a few hours today.

Turns out Ben has a Buckle Fracture in his wrist. It's when the outside of the bone buckles but doesn't break. Like a green tree branch when you bend it.


They put a soft cast on it and we go to see an orthopedic doctor tomorrow or the next day for a cast. He may not be able to play soccer which starts this week (and which Daddy-O is coaching).


I finally got home for the day at 4 pm.

For anyone keeping track, that was 11 hours of driving/waiting room time, 295 miles, 2 hospitals, 1 splint and 1 medical breakthrough all in one day.

I'm pooped!

"A rose by any other name would smell as sweet."

It's been growing clearer lately that D is showing more and more signs of being autistic. He has Norrie's Disease. Autism is known to be fairly prevalent (roughly a third) in Norrie's boys. For the last 6 months or more I've gone back & forth every few weeks or so on his symptoms, first convinced he is clearly autistic then doubting the evidence before me. When we've approached his Vision Instructor about his behaviors and our concerns she always dismisses them by saying how similar blindisms and autisms are...

Well, about a month ago D obtained a new therapist of sorts. There is a graduate student getting her Masters in Behavioral Special Ed (?) who also aides at the county special ed preschool. D is in her Master's study. Through her observations at his mainstream preschool (i.e. he never interacts with his peers) we set some social goals at his first IEP and she did a video taped play date with my girlfriend (who is an OT) and her daughter to discuss with her professor.

I rarely see D with other kids his age. We just don't know any. But at that play date I saw behavior I have never seen before. There was hand flapping. A lot of hand flapping. And I heard a word used many times that I had also never heard before.

Perseverate.

That would be the mower / blower / vacuum / weed eater noises that he joyously makes for sometimes hours on end. Sometimes up to 9 hours. Sometimes so long that I want to put an ice pick in my ear. But it makes him so blasted happy to do it that we let him and we smile because he is adorable doing it too.

D turns 3 on Sunday. On Monday he falls under the School District's jurisdiction for therapy & special education. We will contact them to pursue an evaluation/diagnosis on the autism issue. Nothing like hitting the ground running. I think they are going to hate me. We are hoping to take him to the Autism Diagnostic Center in Fresno. Everyone agrees that he is "very high functioning" even if they won't actually say they think he is autistic. However, the Drs around here have been known to give an autism diagnosis because that is what you want. I would like something a bit more reliable and specific than that, thank you very much.

Our day to day world of laughter and frustration with the Light Of Our Lives won't change one way or another because of an "autistic" label. But an accurate diagnosis will give us access to a few more tools for his life-skills tool belt. Us too. And I'll take all the help I can get.

I do have a question or two for those of you who's kids are also autistic. Once their autism became obvious, was there degeneration or progression of skills and behaviors? Or is this as individual as the children themselves?

Socialization has long been D's weakest area but he seems to be making great strides there. On the other hand, he reverts to the mower/blower noises far more frequently and asks repetitive questions continually and becomes quite upset if he doesn't get the expected/desired answer. I can't help wondering if the pressure of socializing is causing the other "comfort" behaviors...

The Good, the bad & the awesome

There was a time in my life when being right was the only thing that mattered to me. Nowadays, I am afraid to be right more often than not. How ironic. Well, yesterday was no exception.

After a year. YES, a whole year, I managed to get D back to see his eye specialist in Bakersfield. We were supposed to go back last January but I had my DIEP flap surgery & then weekly trips to UCLA for post-op follow-ups. Then implant expansion visits - all of which had to take place on Thursdays. Thursdays are the only days that Dr. Tawansy (D's specialist) does clinics in Bakersfield). You can see why it just never worked out. Plus D's eyes seemed so quiet and weren't giving him any problems... that is, until a month or so ago.

About 6 weeks ago he began pressing his left eye quite a bit and pulling on his eye lashes. The eye pressing is pretty common for vision impaired kids. Press on your own eyes. Go ahead. Do it right now. See the spots and lights? Well blind kids can see them too. And that's the only thing they can see. So you can understand the attraction in eye pressing for them. It can become almost like a masturbation thing for them. (NOTE: this is my personal take on things not the official party line). So I wasn't so much worried about the eye poking / pressing but I had also noticed that his left eye had seemed to have shrunk a bit, quite a bit it by my estimation.

One of the major characteristics of Norrie's Disease is small eyes. But at times I think I can see beyond the corner of D's eyelid to behind his eye. I'm no expert here, but I don't really think you're supposed to be able to do that. Think of your eyes as place holders for your eye sockets. If your eyes are too small the eye sockets don't grow properly and thus your skull can grow improperly also. Eventually, your skull can become misshapen causing all sorts of other issues. One of the things they do to stop this is make schleral shells. So I made it a priority to take him in.

Well, thankfully, I was wrong. His eyes (both of them, though the left a bit more than the right) have shrunk all right. Not near as much as I feared. And they are still quiet. By "quiet" Dr. Tawansy means that the pressure in his eyes caused from scar tissue built up inside is not high. There is no inflamation or anything else wrong. He is not concerned with his sockets so there is no reason for us to consider shells, though the Dr did say they may keep his fingers out of his eyes. And he took D off his meds for glaucoma. Ha! All in all, a very, very good appointment. And best of all, Dr. Tawansy is very interested in going to the Norrie's conference in Boston in July 08. Yeah!

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In other not so good news, I found out last night that an acquaintance of mine has had a recurrence of her breast cancer. She is the first person I've personally known with breast cancer. I remember her losing her hair (she's a hairdresser - how tortuous for her), having 2 lumpectomies because they didn't get it all the first time and finally a mastectomy for the same reason. She had the TRAM Flap reconstruction surgery which went very badly for her and her entire abdomen herniated. But since then, maybe 3 years ago, she's been well.

In December she was complaining of needing glasses so she made an appointment with the eye doctor who found a tumor behind her eye. It was metastasized breast cancer. They did radiation and chemo and now the tumor is gone. But as we know... once cancer metastasizes it is incurable. I feel sick for her. She was like me. She was open about her cancer. She would talk freely about it. Now, she doesn't speak of it at all. She is trying to come to grips with the knowledge that she will die with this disease and from it. What savings she has will be spent on her treatment of it and her healthy days will be spent waiting for it's return. She has told her doctors that she does not want to know how much time they think she has. She only wants to know what treatments they think she needs and what the side effects will be. Then she will decide whether or not she will do it. That is very much what I would do, I think.

She is living my biggest fear. What do you say to people when you have metastatic disease and they ask how your treatment is going? Do you say something like, "fine... today." or "good. But I'll still die." No wonder she doesn't want to talk about it. What is there really to say? At that point isn't it best to just live your life for every moment you can suck out of it?

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Enough depression. Better news. Here's a focalin update on B. Today I took him to school. I was still talking to another mom outside when his class walked by in a line. He was so focused on what he was doing (paying attention to the teacher !!!) that he didn't even see me standing 2 feet from him. What a different child he is now. He is incredible!