IEP Torture

We had reasons for homeschooling from the beginning, reasons that had nothing to do with disabilities, especially since we had no reason to expect any disabled children. (Remember how the doctors told us Brian’s blindness was not genetic?) We had reasons like my experience being the smart one, the geek, the outcast, the loner, the one who was picked on.  We had reasons like Brian’s experiences with exclusion and bullying and how he resolved them (with violence, not recommended).

What I hear from other parents of autistic and blind children and their dealings with the government school system just makes me more determined to keep my children home, no matter the cost.

I have had a touch of dealing with the government schools and the IEP process myself.  When we first started suspecting that Caitlin was on the spectrum, we approached the local school district for an evaluation, wondering if some kind of therapy would be beneficial to her and help her bridge that social-interaction gap.  We were told that she was on grade level for all her academic accomplishments, and therefore she didn’t, and never would, qualify for any services no matter what her disabilities were.  Later, when she was in third grade, we put the triplets and Liam into school for about six months to see if it made my life any easier.  At that point Caitlin had her official Asperger’s diagnosis, and again I approached the school requesting services to help her with her social and interpersonal skills, to help her integrate and belong.  I was told she didn’t need any help, but that they would keep an eye on her and let me know if she did.

As much as ten years later, I am still finding out from Caitlin about the things that happened to her that I was never told about, despite my explicit requests for an IEP and services.  The times she was actually pulled out by the special ed teacher along with the deaf and developmentally-delayed children.  The times she was excluded from recess, the bullying she put up with.  None of this was ever communicated to me by the school or her teachers, who apparently thought it was okay to change their stance and suddenly provide some kind of services without consulting me first.  I may never know what all happened to her, what all they did to or for her, because she really was unable to tell me about it at the time.

The next time I dealt with IEPs and government school services was when I found out I had blind children, especially with Kender.  I found out that all the teachers for the visually impaired (TVIs) and orientation and mobility (O&M) teachers had non-compete clauses in their contracts forbidding them to do private work.  Beyond that, they were so overloaded and overworked that most of them couldn’t have taken on private students even if they had wanted to, and the schools were laying off and buying out more teachers every year.  When we sat down to do IEPs for Jarod and Kender every six months, the process was excruciating, requiring all sorts of detailed evaluations. Kender had to be marked off on developmental skills checklists that were completely inappropriate for a blind child (recognizes faces? knows his colors? follows along with picture books?).  As Kender got older and it became obvious (should have been from the beginning) that we were going to insist on homeschooling him even though he was blind, the teachers stopped really trying to provide services and instead spent all their time trying to tell me all the reasons he should be in school.

I hear so many awful stories.  IEPs that are routinely broken by the schools. Teachers who belittle and abuse their students.  Children with autism and sensory processing disorders who are restrained with force. Visually impaired children who are denied access to Braille instruction because the TVI doesn’t even know it anymore. Visually impaired children who are denied access to O&M instruction and how to use a white cane because the school doesn’t want to deal with it. Autistic children who are passed from grade to grade with no real instruction, then given a “certificate of completion” instead of a high school diploma before being abandoned to spotty adult mental health services.

What makes me so sad and furious is all the parents who believe that their only option is to work within this system that seems so determined to thwart them and abandon their children.  Parents who have been convinced that only the government and its specially-trained certified instructors are capable of teaching their special-needs children, even though the evidence shows they are often neither fully trained nor willing.  So many parents believe that teaching their normal, healthy, on-target children is a job that can only be accomplished by professionals.  It’s even worse among special-needs parents.  So they believe they have no choice but to stick with this system that is broken, and because they are a captive audience, the system has no incentive to improve services.  It’s a vicious cycle, resulting in a downward spiral of worse services and worse education, turning out more and more children who are incapable of functioning as independent adults, and neither side is willing to break out.

My only thought when I hear parents telling these IEP horrors stories is Why? Why do you stay with this system? Why don’t you just pull out? Why would you sacrifice your children to this game the government schools want you to play?  I don’t understand staying in.  I’m out, and I will stay out.  I won’t play that game.

The Kender Report — Kender Does Zumba!

An amazing thing happened yesterday.  Kender participated in a class!

A friend of mine teaches lots of Zumba classes, and she offers several at the homeschool co-op in which we participate.  She encouraged me to sign Kender up for her youngest Zumba Kids class on co-op days, even if all he did was curl up and listen to the music like he’s done before.  Honestly, I am not going to spend $35 for Kender to listen to music.  I can provide that for free, and we do it a lot at home.  I said that we would try it out, though.

At first, it was exactly what I expected.  He didn’t want to go in the room. Then he didn’t want to leave my lap.  He wanted to be held, he wanted to curl up on the floor.  I kept encouraging him to get up and go out there.  I walked him over and tried to lead him through a limbo game, but that only got him shrieking.  I sat down and let him wander, assuming child’s pose in front of the speakers, checking out the tumbling pads in the corner, playing with the blinds.

Then the miracle happened.  Kender stood in the middle of the floor for a minute, and then slowly started imitating the teacher’s movements, stepping back and forth, spinning around, waving his arms a bit.  It only lasted for part of the song, but it had me and her both nearly in tears, it was so amazing to see.  Kender went back to curling up and listening for a while, but a couple songs later, after some other kids had come into the class, Kender opened back up and copied them for part of a song, crawling around on his hands and knees and spinning.

After the class, I continued to see more interaction and tolerance of others.  We went up to the community room, where the other kids had already gotten into the toy box we bring full of balls, puzzles, Perplexus, legos, and more.  He spent well over an hour hanging out at the toy box with the other kids, pretending some blocks were phones, singing songs, etc.  Normally he won’t spend more than a few minutes playing that close to the other kids, preferring to wander around the room and climb on the furniture, stealing food, playing with the window blinds and the doors.  Again, an amazing and really cool thing to see.

When we went to leave for the day, we had to walk past the room where the Zumba class had been.  I had my hands full with a box, Kender was right behind me, and the van was parked right outside the door, so I hurried out and tossed the box in the van, expecting Kender to keep mosying on down the hall.  Instead, in the 30 seconds or so I was gone, Kender found the Zumba classroom (which now had a non-homeschool dance class starting), gone inside, plopped himself down on a mat with the other little kids, and the teacher had called the office over the intercom to report the little blind child who had wandered in!  Yet another thing I would not have expected him to do, especially the part where he paid attention to the other kids and joined them on the mats.

The rest of the afternoon, we heard bits of Zumba songs in what Kender was singing.  Last night, when I asked Kender to go tell Daddy about his Zumba class, this is what happened:

Needless to say, I have no problem whatsoever spending the $35 to keep him in the class for the rest of this term.  I am excited to see what he does next!

Unexpected Lessons

We just returned home today after a weekend retreat with the folks at Michigan Parents of the Visually Impaired (MPVI).  Everybody in the family had a fantastic weekend, and we all came away with new friends along with new energy toward sharing knowledge and improving the world around us.

This is the first time since 1996 that Brian and I have done anything with the “blind community.”  Back then, Brian was still working at the IRS in a job that he got through a training program at Lion’s World Services for the Blind in Little Rock, AR. Understandably, there were a lot of other blind people working in that job with him, most coming from the same program, and they tended to hang out together.  We started bowling with the local blind bowling league and did that for several years, even heading to the national championship one year.

Since leaving the Washington, D.C., area, we had not gotten involved again in anything blind-oriented, other than staying in touch for a while with old friends Brian had from TSB and Criss Cole.  We never felt the need for support groups in Texas, even while Brian was using Commission services during his 2002 layoff.  Once we got to Michigan, we met one blind friend here very quickly (which is a pretty cool story of its own!), but again never felt the need for a support group.  Eventually we had blind children (unexpectedly!), but I let other people’s experience color my judgement and still didn’t reach out much.  My local friend told me stories of how little support she received during her time in the schools and how many blind people she knew who were not independent.  My mother-in-law’s experiences with “parents of the blind” support groups involved sheltered kids with smothering parents who treated their children like helpless china dolls.  Between the two, I didn’t feel any need to connect with others, feeling safer and more comfortable with Brian and my friend, and our online friends from the Blindhomeschooler list.

We were missing out.

All this weekend, we encountered parents who were encouraging their kids to do things for themselves, to walk independently, to give them canes at a young age, to let them climb rock walls and ride on zip lines. We met some of the young counselors the kids had at Lions Camp.  We met some absolutely awesome organizers who really do want the same things we want for our children: independence, self-confidence, competence as blind people and as people in the world. What they were lacking, perhaps, was exposure to more competent blind adults (like Brian and my friend) as role models, along with some different ways of doing things, but their hearts are taking them in the right directions.  Whenever we mentioned the different ways we do things, like buying our own canes, learning and teaching Braille ourselves, all the things we think of as just part of life and homeschooling, we found other parents eager to hear a different story.

Lesson learned: Don’t just go on other people’s judgements about people or groups.  Go find out for yourself.

One of the activities offered Saturday morning was “blindfolded cooking.”  The idea was to give sighted parents some idea of the obstacles that blind people face when doing everyday tasks.  It was a lot of fun.  I’ve always enjoyed practicing “being blind.”  I got to help some people out with suggestions and tips, and I got some help of my own from the older blind kids who participated with us parents.  I was a little disappointed that the set-up was not adapted in any way, so that it more mimicked being dropped into a sighted stranger’s kitchen rather than the way a blind person would manage their own kitchen, but it was fun nevertheless.

One thing bothered me the rest of the weekend, though.  The cooking activity spanned two different rooms, a large dining area and a big kitchen.  I was very careful in orienting myself once the blindfold was on, and had no trouble during the first hour or so, moving between tables and to my coffee that I had stashed in a windowsill.  Then it came time to head to the kitchen and use the stove.  I made my way to the hall door I had already found, found the entrance to the kitchen, and started trailing myself around it counterclockwise.  I wanted to orient myself to the entire kitchen, and I could hear that folks were congregating to my left as I entered.  I followed along the counter that was open to the dining room, the counter along the wall, the double oven at the end of the counter, the closet next to the oven where extra tables were stowed.  Then somebody came and led me to the stove so I could start my cooking (I was roasting pumpkin seeds in a cast-iron skillet, for a spiced nut mix).  After that, the kitchen cleared out a bit, but I got thoroughly confused and disoriented.  I felt like the stove was not where it should be, and I had trouble finding the door when it was time to leave the room.  After I finished in the kitchen, I went back into the dining room, where I was led to another table to work on a second baking project (smores cups, yum!).  Once again, I became disoriented, even though I had been navigating this room well previously and pretty much knew where I had to be in the room.  I floundered when I went for my coffee again, and floundered some more when it was time to put the cups in the oven.

All that floundering is what has puzzled me since.  I thought and thought and thought, and I think I figured out what the problem was.  I was being led.  First in the kitchen, interrupting my trailing, and then again when I left the kitchen.  When I was led across an open floor, I lost my bearings.  Some of this may be a matter of practice, I’m sure, but it reminds me of a principle that I follow and believe in for more general parenting and education: children and adults learn things better when they do it themselves, instead of having it done for them.  When I was doing all my navigating myself, I might have been slow, but I was getting there, and I was keeping my own mental map straight.  When somebody else did it for me, I didn’t learn anything from it.

I think it is important to remember this lesson when dealing with our children, especially our special needs children.  The impulse is so often to step in and do it for them, to help them.  We don’t want it done poorly or slowly, we don’t like to see them flounder and appear slow and helpless.  Every time we take over, though, we are depriving them of an opportunity to learn.  Even in something as seemingly simple and obvious as providing a sighted guide to lead a blind person across an open floor.

Regrets

“Regrets. I have a few.  But then again, too few to mention…” — Frank Sinatra

I’m going to mention some, though.

I regret not being more forceful in trying to figure out what was wrong with Caitlin’s and Jarod’s eyes before Kender was born.  Ever since Jarod was a baby, and his eyes seemed to be going down the same path as Caitlin’s, we knew there had to be something genetic going on.  Obviously Caitlin’s eyes weren’t just the result of ROP and cerebral palsy.  I remember in the two weeks before Kender was born, we had an appointment with our pediatric ophthalmologist.  I sent Brian, both because I was in pre-labor and not really up to the all-day trip required, and because I thought Brian, with his better communication and people skills, might finally be able to wring an answer to this question out of her.  Even Brian could only get, “I don’t know.”  I still don’t know how, after more than 2 years of looking into Jarod’s eyes every 4 months, she never once saw that he had a retinal fold blocking his bad eye.  There are so few pediatric ophthalmalogists around here, though, that we never sought a second opinion.

I regret trying to patch Jarod’s eyes.  Although we now know that he has stage IV FEVR in his bad eye, and that it would never be able to just magically get stronger, at the time our ophthalmologist said it was just lazy eye.  We tried patching, but he fought and screamed and hollered every time we put the patch on.  (Obviously…we were effectively blindfolding him!)  Since just patching didn’t seem like it was going to do any good with a child who was essentially throwing a hissy fit the whole time, we tried using atropine drops, which dilate and blur the vision in the good eye to force the child to use the bad eye.  Remember, that bad eye had Stage IV FEVR, with a retinal fold that covered more than half of his lens capsule.  That eye was blind. But we put drops in his good eye to force him to use the bad one.  I know that we were only operating on the knowledge we had at the time, but dear gods I regret that more than anything else I did to my children in the name of medicine.

I regret the two surgeries that Caitlin had before receiving her FEVR diagnosis.  They kept insisting that she just had some strabismus because of her cerebral palsy, and if they just went in and snipped a nerve or a tendon here and there, they could straighten out her eye.  Caitlin has Stage III FEVR in her bad eye, with a peripheral retinal fold and a dragged macula.  These days, she is still losing vision in that eye, with active disease along the fold that is worsening the dragging and decreasing her vision.  The first surgery she had didn’t do the trick, so they wanted to do a second one, and I went along.  Again, I was only operating (no pun intended) on the knowledge I had at the time.  But those unnecessary surgeries are probably near the top of my regret list.

I deeply, terribly, horribly regret that I waited so gods-damned long to force the issue of Kender’s eyes, and his autism.  With his eyes, in his bad eye he has had a vitrectomy, a retinal membrane peel to pull a fold off his lens capsule, and a lensectomy after a cataract developed in response to the first surgeries.  Then the disease in that eye continued to progress, and he blew the pupil out (uveal ectropion).  Then he developed a bleed, along with glaucoma.  The blown pupil removed his ability for his pupils to contract in response to light.  If you’ve ever had your eyes dilated for an exam, and then walked outside into the daylight, imagine that NEVER GOING AWAY.  That’s what he lived with for 2 years, from the time he was 18 months until he was nearly 4, before I started investigating pain as a contributor to his developmental delays.  We finally got him started on atropine drops a year ago.  Atropine is a dilating drop, which seems counterintuitive (after all, he’s permanently dilated).  However, the problem with his bad eye is that, even though the pupil is blown and can’t contract, the muscles are still there, and they still respond to the light stimulus.  Even though that eye is now effectively blocked by the remnants and scarring from the last bad bleed, it still responds to light, forcing the muscles of the pupil to try to contract.  But they can’t, and so they cramp.  He was in constant pain. The changes we saw in him once we started the atropine drops were nothing short of phenomenal.  It was like he’d been stuck as a baby, and suddenly he started to progress.  He went from constantly being in a little ball, not interacting with anything or anybody, to finally exploring the world.  Gods, do I regret those 2 years.  What did we cost him?  What pathways in his brain might have solidified in immaturity, or atrophied from disuse?

I regret that it took so long to get Kender’s autism diagnosis.  Part of that was the confounding factors of his blindness, and the delays caused by the chronic pain.  However, I suspecting the autism from the time he turned three, and I took him to the psychologist who originally diagnosed Caitlin with Asperger’s.  That…that man…had the gall to look me in the face and tell me that my child was just stubborn.  That it was impossible for an autistic child to show affection for his mother, or to play games, or to explore a room.  I wish I could face him now, although I don’t know what I would say.  We have the diagnosis now, which gives us new tools to work with in helping Kender.  But that man…I trusted him, because he first looked at Caitlin and said, “No way,” but then he tested her and admitted that she was absolutely on the spectrum as Asperger’s, that her condition was initially clouded by the fact that she was a triplet with NT triplet siblings.  I trusted him, and so even though I felt in my heart that he was wrong, I waited almost another year before seeking out another opinion.  A whole year wasted, waiting, when we could have had his dog already by now, we could have known.  Maybe not my biggest regret, but it still makes me mad.

Yeah.  I have a few regrets.  Maybe some of our doctors should have them, too, although they probably never give me and my children a second thought.  One day, I know, I’ll get over it.  The PTSD from the triplets’ birth has faded after 13 years, although it is not gone entirely.  This will pass, too.  Someday.

FEVR Conference

Better late than never. It’s always so crazy around here. Here’s my summary of the FEVR conference we had here in Michigan last month:

If you’ve been reading this blog regularly, you know that our ophthalmologist, Dr. Michael Trese, is the world’s leading pediatric retina specialist. People come from all over the world to see him and his colleagues, Drs. Capone and Drenser. Last month, their office, Associated Retinal Consultants, together with ROPARD, held a conference for families affected by Familial Exudative Vitreo-Retinopathy (FEVR), the disease causing the blindness in our family. It ended up being a two-day event, with social opportunities the night before and lectures given by the doctors on Saturday.

For many (most?) of us there, it was our first opportunity to actually meet other people and families with this disease. FEVR is so rare, most doctors will see at most one case of it in their entire careers. Our local low-vision specialist flat out told us that he didn’t even study this disease in school because he never expected to see it. Many of us have been through misdiagnoses and mistreatment from our local “specialists” who just didn’t realize what they were dealing with. The opportunity to share our stories was priceless.

Friday night, ROPARD helped organize a dinner at the hotel we were staying in. We all ate in one of the hotel’s conference rooms, and then there was time to hang out and chat. Paula from ROPARD brought some items to display, special toys and things. One blind gentleman she brought with her brought a Mountbatten brailler for us to check out, and I brought a box of Braille and tactile books. Thanks to how the child-care situation ended up not working out, there weren’t many children with us, but there were a few.

I was a little embarrassed, because people kept coming up to me and saying, “Oh, it’s so nice to finally meet you, you always seem to have so much information!” Of course I’ve met people online before, but usually just one or two at a time. This was a little weird!

One thing happened after dinner Friday evening that was just so amazing, I keep telling everybody I know about it. I’m always a big advocate for mobility in young children, and I kept telling everybody I spoke to that they needed to get canes into their children’s hands, no matter how young, no matter what the schools or anybody else said. While we were standing around chatting, a little boy came up to Brian. The boy looked to be about Kender’s age, with a little better vision than Kender. He grabbed Brian’s cane, curious, and I whispered to Brian to let the boy have it. This little boy, who had never held a cane before, took off with Brian’s cane around the room, using it in a completely appropriate manner, finding all sorts of obstacles with it. You couldn’t ask for a better demonstration of how natural cane use is for these children when they start young, and how easy it can be.

Later, a bunch of us parents got together in the hotel lounge and hung out until the bar closed down, chatting and sharing stories. Brian got to talk with some other fathers who also have FEVR, although none of them were blind and all found out about it as adults. There were other families there with 3 and 4 children with FEVR (although none with six childrens altogether!), and even a couple of families from Michigan! Max Bodnar and Brian really hit it off, and started making plans to set up another “conference” next year, mostly as a get-together for the parents and children this time.

Saturday was the official conference. The morning was taken up by presentations by Drs. Trese, Capone, and Drenser. There were two major revelations presented. The first is that they no longer believe they can identify FEVR patients with a routine dilated exam of the retina. Some Stage I patients have been slipping through this screening, only to show leakage or exudates when given flourescein angiogram. Because of this, they now are planning the fluorescein angiogram to be the standard diagnostic tool, and will be using this to screen family members once a patient has been diagnosed. This will be easier than it has been for older people (say, over 10 years old) because the doctors are acquiring a new machine that will make it easier for them to do these angiograms in the office and still get a good look at the periphery of the retina. For us, this news means that Brian’s parents need to get rechecked, especially in light of his dad’s newly-diagnosed macular degeneration and cataracts, which could be exacerbated by FEVR. The doctor down there in Texas does not do angiograms, so they will have to wait until they can come up to see Dr. Trese to get that done, but they will be able to get their blood drawn so they can be included in Dr. Drenser’s genetic study, and that should show if they are carrying the same FZLD-4 mutation Brian and the kids have. It’s important for us to find this out, because if either of his parents turn out to be carriers, Kevin’s family will need to be checked.

The second big news was that the doctors are having much better “success” rates over the last two years with preventing rapid deterioration in their FEVR patients. They have taken a very aggressive approach to laser cauterization of the retina, lasering areas with exudates, blood leakage, avascular retina, and capillary dropout. We’ve seen this in our own family, where it seems like somebody gets fresh laser every few months. This aggressive treatment has resulted in many fewer cases of what they called “surprise” leakage and exudates, where previously-quiet eyes suddenly showed massive changes on the next exam. This could be very good news for children like Tamara, Caitlin, and Jarod, who may now be at less risk than we previously thought of losing their remaining vision.

Finally, Dr. Drenser gave a very interesting and detailed description of the current understanding of the genetics and chemistry behind FEVR. There are several different known mutations that cause FEVR, as well as more that are unidentified. All the different mutations disrupt the same basic chemical process linked to the growth of new blood vessels in the retina. This process is very complex, with many known receptors at the beginning and end of the reaction chain and what Dr. Drenser called a “black box” of reactions in the middle that have not yet been fully identified. Messing up any link in the chain leads to the emergence of FEVR. Having so many different places where things can go wrong means that FEVR shows all of the known inheritance patterns (dominant, recessive, and sex-linked), and because the expression of these known genes can be up- or down-regulated by other unknown genes, the expression of the disease in two people (say, siblings) with the same mutation can be very different (like Tamara and Kender). It was really fascinating to see how much they know (and how much they don’t yet know) about how this disease works. We also got to get a sneak peek at the new genetics lab that the doctors have set up this year for further research into FEVR and other pediatric retinal diseases.

Saturday afternoon was given over to a presentation by Dr. Ference, a low-vision specialist who works out of the same building as Dr. Trese et al., and who is very highly recommended. She may be highly recommended, and I’m sure there are some advantages in her style, but Brian and I personally were very disappointed in her presentation. It came off as a 2-hour advertisement for herself, and several times she gave the impression that she could effectively “cure” somebody’s blindness through eye exercises! Many of the things she said nobody else does were things all of our ophthalmologists and low-vision specialists have done, and many of the “treatments” she prescribes are things that any child with an active parent and an engaging environment will do naturally. I’ve got notes from the presentation, and I’ll break down my criticisms in another post, but Brian and I (and really our TVI, who came along Saturday for the fun of the presentations and learning) came away very disappointed.

All in all, though, it was a wonderful 24 hours, and we can’t wait to do it again. We spoke with Dr. Trese, and we will be working with the surgery schedulers to set up a week or two next summer that can be set asides for the practice’s FEVR patients. We’ll get everybody out-of-town to schedule their annual/biannual/whatever checkups for that time, and over the closest weekend we’ll book a group of rooms at the hotel and plan some family events. We want it to be a kid-friendly get together this time, so all the kids can meet and talk and socialize. As parents, we got a lot out of just that aspect of it, and we think the kids will, too.

Eyeball Update

Things are going much better on the eyeball front. Caitlin had her office visit with Dr. Trese, and he said she looked better and could wait until that Friday for the exam under anesthesia (EUA).

Thursday afternoon they called to say we needed to be at the hospital at 6:30 a.m. This hospital is an hour and a half away, so we had to get up at 4 a.m. to get there on time. Ugh.

Kender was first. His pressure in his right eye was 17, so he will continue on all three eyedrops (Cosopt, Xalatan, and Alphagan). Everything else looked good, so he gets to wait until September before going back.

Tamara looked okay, but there were areas where Dr. Trese had previously lasered that he said didn’t take, so he did more laser in both eyes on her. Otherwise, she’s good, and can come back to the office in October.

Dr. Trese found the bleed in Caitlin’s left eye, and had to do quite a bit of lasering to cauterize it. He thinks he got it, though, and he didn’t see any sign of retinal issues, so she just stays on light activity for now and goes back in the office in a few weeks. She also says that she doesn’t see any difference in her vision now that the bleeding has cleared up, so that is great news!

More Eye Issues

It took longer than usual last night to get a call back, even considering it was after office hours, but Dr. Faya called us back and said to bring her in to the Royal Oak office in the morning, NPO in case anything needed to be done. (I am so thankful to be living so close to them that we really can bring the kids in at the drop of a hat!)

So we got up and left at the butt-crack of dawn to make sure and get to the office when they opened. Dr. Luo (? I think? haven’t seen/met him before) looked at her, and said yes, she has quite a bit of bleeding in the left eye, so he left to call Dr. Trese (who wasn’t actually in that office today) to see what to do. Dr. Trese said that he wouldn’t be able to do anything today as far as laser cauterization, because there is so much blood floating around in her eye now that they can’t get a clear shot of where it’s coming from. She’s not actually seeing curtains or blank spots, so they don’t think there’s any active detachment. They put a shield patch on the eye and ordered her to low activity and sleeping upright, in the hopes that the exudates will start to precipitate out and clear the vitreous. We go back to the office on Tuesday to follow up; if she is having no signs of detachment and the vitreous seems to be clearing, we will go ahead with her previously-scheduled EUA with fluoroscein angiogram next Friday the 22nd (along with Tamara and Kender), and just expect that she will, at a minimum, get fresh laser cauterization at that time. Of course, if she shows any signs of incipient detachment, we’ll go back immediately and I guess he’ll do a vitrectomy to clear things out so he can reattach the retina and cauterize the bleed.

Three trips in 8 days. I’m glad we live close, but in my 12-passenger van, crossing half the state still ain’t cheap! Not to mention we are NEVER going to catch up on our school work if this stuff keeps happening.

On the positive side: ATLAS SHRUGGED opens today! Happy Tax Day (or what should have been Tax Day) and TANSTAAFL everybody!