Wednesday, October 22, 2008

Kathryn or Katherine?

Well, Katie has been home with us for a little over 2 months, and for a little under 2 months, we've been dealing with her name. We chose the spelling Kathryn for Katie's name for 2 reasons: we prefer the way it looks, and we have ancestors on both sides with that same spelling. When we were in Moscow in May, Andrei and Sergei needed to draft some documents for the court hearing with her new name, so Andrei had us write that down. He was very insistent that we spell it correctly the way we want it to be spelled so that there are no mistakes. We got the message after the first time he told us, and we wrote down her new name for him.

Between our second and third trips Andrei obtained the court decree, birth certificate, adoption certificate, etc. and the translators translated them into English for us, for the Embassy, and for Immigration. When we returned for our third and final trip, Andrei had all these documents and he was pretty much guarding them with his life until we went through the Embassy at the end of the week. I don't think he trusted us very much. When we finally were able to see the documents, we saw that every single one had her name spelled Katherine. While that is a beautiful spelling, it is not the one that we chose for our daughter. The problem is that even though there are several ways to spell that name in English, there is only one way to spell it in Russian. Russian is a phonetic alphabet so there is only one way to write each sound in a word. Therefore, going from English to Russian was quite simple, but going from Russian to English means the translator needs to make sure he/she chooses the correct spelling. There is a standard handbook that translators use, and apparently it has the spelling of Katherine. This wouldn't have been a problem if the error had been caught and new translations were completed. However, this did not occur, and by the time we even saw the documents it was too late. Andrei had already sent all the translators on vacation because except for us, there wasn't going to be any more work for them for 2-3 more weeks. There was no one to correct all these documents, so we had to submit them as they were to the Embassy and Immigration.

After we returned home, we contacted Olga at our agency and explained the problem to her. She redid the translations for the birth certificate, adoption certificate, and adoption decree with the correct spelling. Meanwhile, the Certificate of Citizenship arrived with, of course, the wrong spelling. We have to use this certificate to get Katie's social security number, so we're stuck until that gets corrected. I contacted our local USCIS office and inquired about what I need to do. If Immigration made an error, then they will replace the certificate for free. If Immigration did not make an error, then there is a fee of $380 to replace the certificate. They requested copies of the original documents to see how her name was spelled to determine if they are at fault. Three weeks later, USCIS informed me that all the documents had her name as Kathryn except for one: the adoption decree. According to USCIS, they have to go by the name as it appears in the adoption decree. Therefore, the error was not due to Immigration but rather due to the incorrect translation done by the agency. Consequently, we need to go to the courthouse, have her name legally changed from Katherine to Kathryn, and mail that document along with form N-565, the original Certificate of Citizenship, and a check for $380 to get a new certificate. Since we didn't do anything wrong, we don't want to pay the fee. We explained all this to our agency and asked for them to reimburse us for the fee. After a week of them researching this matter, our agency declared that the name for the Certificate of Citizenship should not come from the adoption decree but from the Visa application, which is filled out by the parents (and has the correct spelling) pursuant to statute blah, blah, blah. So the agency's stance is that Immigration was at fault and needs to replace the certificate for free. Frankly, I don't really care who was at fault, but I have to put on my detective hat and go sleuthing through this mess to figure it all out. Katie needs to have her name spelled correctly everywhere, she needs a social security number, and I need to keep $380 in my bank account.

So today I called USCIS, and after I pushed all the necessary numbers on the phone to get to a live person (shockingly, none of the automated options quite suited my situation), I spoke with Andrea. She gave me the email address to the adoption officer at our local USCIS office and advised me to explain the situation along with my name, date of birth, country of birth, first pet's name, and my 6th grade locker combination. I should hear a response in 2-3 business days.

Meanwhile, we had Katie screened at our school district last Wednesday, and she qualified for the Early Childhood Center. Yea! She was average for motor skills, but her language and concepts were low enough for her to get in. Her language delay is for obvious reasons, and the concepts skills are language based. For example, to demonstrate that she understands the concept of "under," she was told to "put the block under the house." Well, she has to know what put, block, under, and house all mean in order to complete the task. I was actually impressed with all she could do after only being in our country for 2 months. As I was filling out all the enrollment information, I saw that her social security number was required. My heart sank, because at the rate the process is going it'll be spring before she gets it, and I really want her to start as soon as possible. She is so ready for school right now. I called the school and explained the situation, and they said that it wouldn't be a problem, they won't keep her out, and I can just give them that number once I know it. Once again, yea!

So the saga continues as I wait to hear from the adoption officer at the USCIS office.

I know I'm doing a terrible job with posting pictures, but that's because I'm doing a terrible job with taking the pictures. I promise that I will take some pictures soon and I'll post them. However, at the rate I'm going, they're just going to be their Halloween pictures. As a teaser, let me just tell you that they are Peter Pan, Tinkerbell, and Captain Hook, and you've never seen a cuter group from Neverland!

Friday, October 10, 2008

To See or Not To See?

Derek and I flew to Detroit, MI on Wednesday for a follow up appointment with his retinal specialist, Dr. Trese. We've been seeing him for almost 8 years, and he knows Derek's eyes better than anyone else in the world. Also, he is one of, if not the, best retinal specialist specializing in Retinopathy of Prematurity in the world. We have met people from Mexico, The Netherlands, and Italy who have flown to Detroit just to see him. The least I can do is fly from Kansas City. We use Angel Flight -- an organization where pilots donate their time, plane, and gas to fly people for medical appointments -- for these flights. The best part is that the pilot we always use is my dad. Everybody wins: Derek gets to his appointment, Derek gets to fly (which he LOVES), I don't have to pay for it, I get to catch up on my sleep on the plane (hee, hee), my dad can claim the gas expense as a deduction since it's a charitable contribution, and my dad has an excuse (as if he needed one) to be off in the wild blue yonder. Dad is also a certified flight instructor, and one of his students actually flew the plane this time with Dad in the right-hand seat.

We took off a little after 8:00 and landed at Detroit City Airport a little after 12:00. It was a 3-hour flight with a one-hour time change. The student made a great landing despite the heavy cloud coverage and rain in Detroit. We ate at the same Subway that we eat at every single time, and got to our 2:00 appointment with time to spare. Dr. Trese got a pretty good look at Derek's eyes, and everything seems to be unchanged. At this point, "no news is good news." We are just trying to keep Derek's eyes healthy and viable for future technologies. The worst thing that can happen now is for one or both of Derek's eyes to stop growing, shrink, and eventually die. If that happens, then there is no hope. As long as his eyes hang in there, there is hope. Right now, Derek's left eye (the good one) has a large area of attached retina, but it is very thin and avascular, and therefore doesn't work right. Derek's right eye is cloudy due to a swollen cornea that he's had for a few years. Therefore, Dr. Trese can't see all the way to the back of the eye to know if there is any attached retina. Often when the retina is detached, it will "float" up to the front of the eye. Dr. Trese can only see about the front 1/4 of Derek's right eye, but he doesn't see any retina in that part, so that's something. When we have done VEPs (Visually Evoked Potential) in the past, they show some brain activity in response to his right eye, so Dr. Trese believes that he at least has something attached back there. A VEP is where they attach electrodes to the back of Derek's head, right where his occipital lobe is. The occipital lobe is where vision is processed. Then they cover one eye, shine a strobe light, and record the brain activity for about 10 minutes. Then they repeat this with the other eye. Finally, they do this with both eyes open. This test cannot deliver a false positive or a false negative. If there is brain activity, then he saw something. The stronger the response, the greater the vision. We've done 3 of these in Derek's life, and each time Derek's eyes have seen something, with the left eye having a greater response. A corneal transplant would probably take care of the cloudiness, but since Derek is blind, he's not exactly a candidate. Per Dr. Trese, we're going to try some new drops for about a month, and if we see improvement, great. If not, we'll stop them.

Derek's next appointment will be in 6-8 months, and this one will be an exam under anesthesia (EUA). For this, we'll fly up on a Sunday, spend the night, and report to the hospital some time on Monday. While Derek is under anesthesia, they will get a really good look at his eyes and be able to check his pressures as well. Many kids with ROP develop glaucoma, so that's why it's so important to check his pressures periodically. So far, his pressures have always been perfect with the help of his current eye drops. The actual exam only takes about 15 minutes, but we're at the hospital for about 3-4 hours. Then we'll fly home that night. We fly commercial for Derek's EUAs, and since his insurance covers travel expenses it won't hurt our budget (yea!). For the last couple of years, Derek has had an EUA in October, and an office visit in April. Since Derek is getting older and more compliant in the office, we were able to do 2 office visits before doing another EUA. Small victory.

After our appointment was over, we drove back to the airport, and took off. We had a roller coaster moment as we were ascending, when the student pilot had to rely on his instruments rather than his vision (due to the clouds) to determine the plane's position in the air. After some time and instruction, the student leveled out the plane, and I was able to resume reading my book. Other than that, we had an uneventful flight home, and landed at about 8:00. It was a 12-hour day, but that's better than a 13-hour drive one way!

As for the future technologies, stem cells have been in the forefront of possibilities for Derek. Dr. Trese has one hand in the office and one hand in the research, so he knows exactly what's going on. Unfortunately, the stem cells are going to take some more research and won't be ready in the 2-5 years that Dr. Trese had thought. What's happening is that when the stem cells are injected in the retina, they are not integrating with the retinal cells to regenerate. Instead, the cells are dividing on top of themselves, creating a lump -- a benign tumor. They are experimenting with trying to "train" the cells (whatever that means), and that has shown better results, but still not what we want. Another possibility is the micro chip. This is implanted in the retina, and a processor is implanted in the brain. Between the two, they can send the visual message to the brain and the person can have some sight. The micro chip is only 60 pixels, but the image is not as grainy as you would think. Individuals are able to see contrasts, shadows, large objects, etc. If Derek is ever able to see enough to maneuver in his environment, we would be thrilled. Right now, the estimation for when the micro chip would be ready and on the market is 2 years. I won't hold my breath, but we'll see. Nonetheless, whenever the technology is there, Derek's left eye should be a candidate.

Please keep him in your prayers, and we'll see what the future holds for him.