Day +1353: Report from Opthamologist Appointment

Keri and I went to see Dr. Good, Mina's opthamologist, on Friday to discuss his recommendation for surgery to treat Mina's cataracts. It went well. There is always some possibility of complications from any surgical procedure, and he discussed some of them with us. The main potential problems are infection and retinal detachment. Infection is apparently more common in eye surgery than in other surgeries, and they will monitor her very carefully in the days immediately after the surgery to look for any signs of it. Each person's eye heals differently, and sometimes some inflammation occurs that can cause some side problems. There is also an increased risk of glaucoma in the long term, which combined with my family history is not a very happy development. They will do one eye at a time as a result of some of the complications, with 1-2 months in between the surgeries.

The surgeon will make an incision in the surface of Mina's eye, remove the lens, and sew it back up. The cataract is forming in the lens, which is the critical piece that refracts the light and focuses it on the retina. Focusing your eyes in part involves changing the shape of the lens to change the focal distance. After the surgery, Mina will no longer have this ability. Her vision will most likely be good for distance, but she will need very strong (+12) glasses or contact lenses for focusing up close. Most cataract surgeries end with the surgeon implanting a new lens, but this can lengthen the recovery time and increase the risk of complications. It can also be problematic for young kids, whose eyes are still growing. After discussing it thoroughly, the only apparent benefit of a lens implant is reduced dependency on glasses or contacts. Since Mina's vision should be correctable to normal withouth the implant, Keri and I both agreed that it didn't seem worth the potential complications. Her glasses will be thick, but she can start wearing contact lenses whenever she is ready to take care of them. So we are not going to have the lens implant, even though Dr. Good said he thought 70-80% of his colleagues would recommend it even for young kids.

Dr. Good said there is no real urgency in the timing. Keri had been worried that the three-month delay in scheduling an appointment might have had some effects, but Dr. Good assured us that was not the case. He says the big issue is that her cataracts are worsening and will eventually need to be repaired, and it is probably better to do it sooner than later due to the brain development issue. So we will probably try to schedule the first surgery for March after we get back from our trip to the Northwest. Dr. Good thinks Mina will probably see some immediate benefit from the surgery in terms of improved vision, even before going to get her glasses. It's tricky -- Keri and I have both had the sense that Mina doesn't see well, but it's hard to know how much this is affecting her because there are definitely things that she does see even at distance.

One other thing Dr. Good said is that cataracts are very common -- something like 70-80% -- among patients who have had radiation therapy. Apparently the radiation breaks down some of the tissue that protects the lens, so fluid and other foreign substances can penetrate and build up around the lens, causing opacity to occur. We did know that this was a possibility, so it doesn't really come as a surprise to us. And as long as Mina can avoid any of the complications, this shouldn't affect her quality of life too much, other than having to go to an opthamologist 2-3 times per year for the rest of her life. As we have said many times, if this is the worst thing she has to deal with we will all be very thankful.

We had a very nice weekend. Friday was our company holiday party, and we had a ridiculous meal at a fancy local restaurant. Saturday morning we dropped the kids off at their friend Calvin's house in their pajamas for a play date. Keri and I used the time to have brunch at a restaurant and do some shopping. Then today we enjoyed the sunshine and 65 degree weather while on a hike at Pt. Reyes. It's funny -- the kids were moaning and complaining for the whole two miles down to the beach about how it was too hot, too long, they were tired, why do we take them on such long hikes, etc. etc. etc. Then when we got to the beach they immediately stripped off their clothes and were sprinting around on the sand playing tag with the waves. The ocean was amazingly calm today, one of the few times I've seen the Pacific really live up to its name. After running, playing, digging, etc. for only about 45 minutes or so, we headed back up toward the car and the kids' attitudes had changed 180 degrees. Even though the way back was much steeper and harder, and the kids were supposedly more tired, they didn't complain a bit. Go figure.

Day +1347: Happy New Year!

Long time since the last update. Things have been busy, to say the least. My work has been nuts. I have a project that would normally have about a timeline of six months to a year that we are trying to cram into two months. I've been working nights and weekends for the last two months. It's all about trying to understand what it might take for California to get 33% of its electricity from renewable energy sources to inform the governor and Legislature. It's very interesting stuff, but it has just about consumed me. Keri pretty much took care of Christmas for us both this year.

But on to the important stuff. First, some sad news. We found out right before Christmas that Mina's cataracts are progressing, and she will need eye surgery in the very near future. We are scheduled to meet with the doctor on Friday morning to find out more. What little we know so far is that it's important to get this taken care of early, even though she seems to see just fine, because of brain development. The brain will start to develop differently if it doesn't have good information from the eyes to process, and we want to try to avoid that. It sounds like they are going to remove her corneas and lenses, though I don't know exactly what they are going to replace them with. She will need to wear either contacts or very think, coke-bottle glasses when the surgery is done. Eventually, when she stops growing, there may be a more permanent solution that doesn't require the glasses. I will post more about this over the weekend after our appointment. Cataracts are a not-uncommon side effect from the radiation and steriod therapy. So far they are the only major side effect Mina has suffered, and we will consider ourselves lucky if it stays that way. She is taking everything in stride for now. She understands that a "fog" is growing over her eyes that will eventually make her blind, so she needs to have surgery so that doesn't happen. She's a big girl and has always been very brave. It will be interesting to see how she reacts to such a big procedure now that she is so much older and aware.

We had a relatively quiet Christmas this year. We had been thinking of traveling to the Northwest, but are *so* glad we didn't given the weather up there. The kids went to Acrosports camp during the break and had a ball. We went to see the Velveteen Rabbit again and a San Francisco Youth Symphony holiday performance of Peter and the Wolf, narrated by Leonard Nimoy, along with some other holiday songs. The kids seem to enjoy it. I was a bit worried about Peter and the Wolf, because the SF Symphony website said it was appropriate for kids 12 and older. I brought along some books and drawing paper just in case Mina got bored, but she paid attention through the whole show and remarked when it was over "Gee Daddy, we didn't even need the books!" Isaac of course pays attention through the whole thing and is always sad when it's over. This year he said "Daddy, why is the Velveteen Rabbit so short?" even though it's over an hour and a half long including the intermission. But the performance we didn't get to see was the Nutcracker. Their school didn't go this year, and we just didn't get around to looking for tickets in time to get any of the reasonably priced ones. But the kids were very sad. Isaac was crying real tears because he really wanted to go, and asked several times during the following days why the performances were over and why we didn't get tickets.

We also went to the St. Mark's Lutheran Church Christmas pageant again, which the kids really enjoy. Mina is still enthralled with anything to do with Baby Jesus. Her favorite Christmas songs are Away in a Manger and Silent Night. Teacher Julie was telling Baby Jesus stories and signing Christmas songs this year in their school, all because of Mina and Isaac.

Mina's Christmas wish was, unsurprisingly, for a baby doll. She wanted the Waldorf kind of soft, stuffed doll. There was a doll like that at their old school which Mina had helped name Rosie, but she didn't survive the flood after the water main break. So Mina wanted a Rosie doll for home. She named her "Sarah". Isaac's fondest wish was for a set of walkie-talkies. The teachers have them at school and use them when they go on hikes to communicate between the "engine" and the "caboose". Isaac loves anything official like that (he's very excited that the school has a crossing guard stop sign and vest and was ecstatic when I was the working parent and it was my turn to be the crossing guard) so this was a natural. He also wanted a thing that would attach a harmonica to his guitar. Keri found one that goes around his neck, and it didn't take him long to figure out how to play both at the same time.

Our neighbors from across the street, Mr. and Mrs. Burton, asked us to come over on Christmas Day. They are in their 70s and have grandkids in the area. They are very interesting -- they are African-American and he was a sharecropper in Arkansas before he moved out here. I don't know what his profession was, but now he repairs shopping carts from grocery stores. He's always bringing home a half-dozen shopping carts in his white pickup and unloading them into his garage to fix them. Mrs. Burton worked at UCSF for 29 years and just recently retired. The kids always say hello to them and the Burtons really enjoy seeing them, so they wanted to invite us over on Christmas Day and introduce us to their grandchildren who are four and eight. They gave the kids two outfits each, including a princess dress for Mina and a little red sweater vest and tie for Isaac. Then we went next door to the Brandis' (Carol and Tom, our landlords). They always have a cocktail party on Christmas. They are also super nice, and it was interesting seeing the inside of their house and their back yard. Then we had several friends over at our house for a very nice, relaxed Christmas dinner. It was definitely fun to be in the neighborhood this Christmas!

Isaac's consolation prize for not getting to go to the Nutcracker was a music stand and music book. He all of a sudden decided he really wanted a music stand and a "note book", by which he meant a book of notes that he can read music from. We didn't see much reason to say no to that request, which was offered very sincerely and sweetly. So we went down to the music store and bought one, and when we got home I showed him how to set it up and set his book in place. Now he sets it up and sits in front of it and "reads" the notes and plays his guitar.

The family went down to the LA area over New Year's to visit Tutu and Richard (Keri's stepmother and her husband). I had to stay home and work unfortunately. The kids had lots of fun "swimming" in the hot tub (too cold to get in the real pool) and going to a children's museum. Tutu and Richard took them to Target and they each got to pick out a toy. Keri said they both thought about it very carefully. Mina selected a stuffed dog that came with a bag to carry it, a brush and food and water dishes. Combined with the dog she "rescued" from the school's Goodwill pile and the other stuffed dogs she has at home, Mina now has quite a pack. I think she may be trying to tell us something! Isaac ended up with a very life-like tow truck, a big one that can tow a bus. There was one of those on our street, towing away Placido's garbage truck which broke down in front of our house. Isaac would have been so excited, but unfortunately it happened while the kids were at camp. Keri did take some video, which we showed the kids.

Mina still loves to draw, and has been helping with our Christmas cards this year (um, many of which haven't gone out yet...). One time we were reading a Curious George book, and she took a close look at the drawings and asked if they were drawn with a pencil. I said yes, and she said "Wow, how did he do all those drawings?" I said it just takes practice, but she said "But how did he do so *many*?" I said it probably took him a long time, but that was his job to do that. She thought about that for a while and then she said, "Daddy, can I be an artist *and* a Momma?" I said of course she could.

She said a very sweet thing the other day. She was just talking generally about things, and she came out and said that she wants to marry a kind, loving man who really wants a daughter. "Probably someone like you, Daddy."

A couple more quick stories about Isaac, who I have to say is absolutely hilarious at this stage when he's not driving his mother batty with all of his extra energy.

Isaac has interesting theories about cosmology. Mina says that Jesus lives on land, and she's not real. Isaac says "Yeah, and sometimes he does shows!" Isaac says that Batman, Superman and Spiderman helped God kill all the dinosaurs so the people could live here.

He has a problem with pants that don't stay up, because he is as skinny as a rail but has very long legs. When we were at the symphony his pants kept falling down, and sometimes his underwear with them. He was very tired and a bit whiny when we got home, and when I asked him to put on his jammies, he whined "I need help getting my pants off!" I told him just to run up and down the hall a few times.

Isaac has gotten ino the phase where he enjoys being called by a different name. I first noticed it when he asked me to make him a sign that said "Not Isaac". He walked around with that sign all day, and then took it to bed with him at night. The next day he had me write on the other side "Julubaju -- that's Isaac's name." Another time he told me his new name was Henry Chua (Chua is the last name of one his school friend Ben, whose Dad Brian is one of the teachers), and his middle name was "Uncle Bill". "Henry Uncle Bill Chua".

He likes to play policeman these days, and one evening he was playing policeman as it was getting late. I still wanted him to bathe, so I told him policemen always take showers after their shift. Of course, he wanted to take a shower then, so I put him in the shower with his swim goggles and then he only wanted to take showers from them on. A few days later Laurel came to babysit and put both kids in the bathtub. About halfway through Isaac blurts out, unexpectedly "Oh no!" Laurel was surprised and concerned and asked him what the matter was, and Isaac said "I forgot I take showers now!"

For some reason Isaac likes to wear his clothes backwards. He wears his pants backwards, his shirts backwards, even his fleece jackets backward so the collar is in front. His funniest outfit that he is attached to is one we got from Keri's friends Suzanne and Jason. They are anthropologists and they lived a while in Ecuador last year with their son Jacob. They gave us Jacob's school outfit, which is a matching set of blue polyester track pants and top with "Escuala Simon Bolivar" written on the back in white block letters. Isaac of course likes to wear the top backwards with the collar and the writing in front. It looks hysterical, but he's so proud when he wears it.

Happy New Year everyone! I'll post again this weekend with details about the eye surgery.