Daniel's big gift

We decided back when we were in China that we didn't want Daniel taking over our main computer.  He had installed some of his own frequently-used programs (starting within about an hour of meeting us!) on our laptop, and Tim was nervous that he would alter it in some way that would make it less usable for the rest of us.  Plus the main computer is in the study, where the person who is using it can be out of sight of the rest of the household, and we wanted to keep tabs on what Daniel was looking at.  So when we first got home we let him use the laptop in the living room, but we felt kind of bad about that since the laptop (a netbook, really) has a very small screen while our main computer has a huge screen, and of course with Daniel's vision issues, a small screen makes it harder to use.  Then Tim gave Daniel an older computer that a colleague of his had salvaged and given to him.  That had a much larger monitor, but it is a little slow.  Worst of all [and I'm skipping over a good bit of narrative here], it did not have Windows, and Daniel was not able to properly use some of his favorite programs.  So, Daniel begged for Windows.

He had also, for months, been begging for a new bed.  The one in his room when he arrived is elevated, with a ladder going up to it and storage space underneath it, and he does not like sleeping high up.  Plus he wants a spring mattress rather than a latex mattress...and a full bed rather than a twin bed...and, well, you get the picture!  Ordinarily we would not buy a new bed for a child whose bed is already perfectly adequate, but we are going to need another bed soon anyway when Esther moves into a twin bed, so we had been going to get Daniel a bed for his big Christmas gift.  Then he shared with me that he wanted Windows even more than he wanted a bed.  So we decided to do Windows for Christmas and a bed for his birthday.

But then it seemed not very economical in the long run to spend $100 or more on software for a computer that we expect to be upgrading in the next couple of years.  And then Tim found a really good deal on a whole computer--with Windows already installed--and we decided to get that for Daniel for Christmas.  Only the deal that seemed too good to be true...apparently was just that.  Despite the website's promise that they only advertise goods they have in stock, and despite their cheery automatically-generated e-mail telling us to expect it the week before Christmas, it didn't come.  We waited a few days after Christmas, and it still didn't come.  Nor was there any evidence that it had ever been sent.  Nor was the company returning phone calls or e-mails.  So Tim went through our credit card company to dispute the purchase (being as we didn't want to pay for something we were beginning to think we would never get).  That generated a communication from the company that they were shipping our product...except that as the days went by and we kept checking the UPS site for progress, it became clear that the company had generated the shipping label but had not actually shipped anything.  Meanwhile the credit card had investigated our case and found no problems, so informed us that if we were responsible for the bill and they would report us to the credit reporting agencies if we did not pay on time.  More phone calls, both to the computer-selling company (which did not answer, of course) and to the credit card company.  Upon further contact from the credit card company, the computer company finally mailed the computer, only about four weeks late.

Meanwhile, we had not told Daniel about the computer.  At first we wanted it to be a big Christmas surprise, and then we didn't want it to be a bitter disappointment if we had to cancel the order and go back to just buying Windows.  We did have fun teasing him about his Windows.  Tim told him at one point, with a straight face, that we should go to Lowe's to look at windows since they sell very good ones there.  Daniel thought that was hilarious, and brought it up for days.  On Christmas we printed out a picture of a window and put it in an envelope to tell him that his Windows really was coming...we just didn't know when.  Then when we were finally expecting it to arrive, Tim teased him again by telling him he had better start taking his bedroom window out to get ready for installing the new one when it arrived.  Daniel was pretty sure Tim was not serious, but he did double-check it with me.  For my part, when the computer box arrived and Daniel noticed how big it was, I managed to keep a straight face while telling him that I hoped after all the problems this company had caused us, they hadn't sent us the wrong product in the end!  So Daniel had no idea what was going on, but he was one happy boy when he found out!

Meanwhile, just as Daniel was oohing and aahing over his computer, Esther came over and got all excited...about the packing peanuts!  I still have bad memories of trying to clean up statically-clinging packing peanuts after Esther dumped a box of them out in the kitchen one time, but I was in the middle of making dinner and I thought that since this was such a big occasion for Daniel, Esther ought to have something fun to do to.  So I let her get in the box.

At least the mess stayed somewhat contained, although I think Tim had to vacuum her off when he took her out.  If you have ever tried to clean up packing peanuts that are broken into the bits--they are the most effective demonstration of static electricity I have ever seen, and the more you try to brush them off the harder they stick.  But at least she had fun, Tim and Daniel got to set up the computer in peace, and I got dinner done.

And now Daniel has his own computer, in the living room, that he can install his own programs on and turn all the commands into Chinese so that he knows which buttons to push to do what he wants to do.  So he has been happily spending every afternoon setting it up just the way he wants it.  And hopefully, it will last us for a few years!

2nd post-op

We had Daniel's second post-op on Tuesday.  We only had to drive 45 minutes for this one, as Daniel's ophthalmologist is at a clinic in a city not too far from us on Tuesdays.  The doctor's assistant started Daniel out with an eye chart again...and lo and behold, he tested at 20/200 in his left eye!!  That's as good as his right, I think.  Not sure how that happened, but we'll take it!  I am excited now to see how much more his vision will improve once we get his astigmatism corrected!  The part of his low vision attributable to his albinism is, of course, not correctable, but any improvement we can get will help him move through life seeing more, with less eye strain and fewer adaptive devices to manage.  Daniel has been commenting that he can see much more clearly now than before (not surprising, since I think the cataract was obscuring most of his vision in his left eye).

The doctor was very please with how Daniel's eye is healing.  The new lens is still sitting snugly in place, and the tiny hole made during the operation has not opened up at all.  We need to continue being very careful through this weekend, and then we can relax the restrictions a little bit and just make sure that Daniel doesn't get hit in that eye.  We are down to eyedrops three times a day this week (Tuesday to Monday); then we will do two drops a day for the next week and one drop a day for the following week.  I will be very happy when the eyedrops are done.  My morning yesterday did not start out very well, eyedrop-wise.  I didn't want to wake up in the first place, but of course I did because I'm the mom and I have to.  Daniel didn't want to wake up either, and he is not the mom, so it was a pain to get him roused.  I decided to do eyedrops in bed to give him a few more minutes, but he kept trying to turn over and bury his face in his pillow.  Meanwhile Esther had woken up and sat crying in his doorway because I was doing something with him instead of with her.  She had no idea how much I would have rather been picking her "uppy" than wrestling three consecutive kinds of eyedrops into her cranky brother!  I am happy to report that the eyedrops since then have been less dramatic (unless you count him nearly missing the bus this morning because I was late putting them in), but still...that is a routine that I will be glad to leave behind us!

And, now that we are back home, I will post a picture from the big event.  I didn't take very many because...well, we had other things on our minds!  But I did (barely) remember to get a picture of Daniel with his patch before it was taken off at his post-op visit.

And here are a few from the science museum we visited the day after the surgery.  The first picture is Daniel posing next to an imprint of his face (no, he did not imprint the side he had just had operated on!).  You can see the "yes" written above the eye that had surgery--a safeguard, I assume, to make sure all the procedures were done on the correct side!  The second picture is him checking out a laser-string harp, and the third picture is working on a water engineering problem.

post-op

First off, thanks for all the comments!  I passed the good wishes on to Daniel, who just now wrote "theyuou" (his attempt at "thank you") but then deleted it.  (Now he has left the room for a while, which is just as well, since typing with a 14-year-old sitting on my legs is even harder than typing with a four-year-old.)

We had Daniel's first post-op appointment yesterday morning.  He had woken up pretty early and was driving me crazy saying he was going to pull his dressing off, so I was very happy to finally get to his actual appointment where the doctor's assistant could take it off officially.  At least his eye was the only thing that was irritating him.  He said that his arm felt fine and his eye didn't hurt, it just felt like it had something in it.  Our appointment started out with a bit of a scare, as the doctor's assistant asked Daniel to read an eye chart with his left eye.  First she wanted him to read the small line, which I don't think he could even do with his right eye.  Then she said she needed to make sure that he could at least read something, but he couldn't even read the biggest line.  At this point I was starting to get worried, wondering if something had gone wrong and if we would have to re-do the surgery!  To make a long story short, I think that she had him read (or try to read) the chart because it's standard for cataract patients, but she shouldn't have attempted that test on Daniel in the first place.  Not only is his natural distance vision about 20/250, but because his lens implant was designed to make him nearsighted rather than farsighed as is the norm, there was no reason to think he would be able to read a chart that tests distance vision.  So after that confusion was cleared up, the appointment went well.  Our ophthalmologist was very happy with the way the lens is sitting in Daniel's eye, and did not see any signs of infection or other undesirable consequences of surgery.  He did find that there were a couple of scratches on Daniel's eye, presumably due to him opening his eye inside the dressing the day before.  So in addition to Daniel's three kinds of medicinal eyedrops, the doctor gave us one kind of moisturizing drops to hopefully make his eyes more comfortable.

So, for the next two weeks (but especially the first week) Daniel has to be careful about doing anything that could increase the pressure inside his eye, including putting his head too far down in relation to the rest of his body, applying pressure to his eye (like by rubbing it) or by lifting anything that weighs more than ten pounds.  Daniel is milking this restriction for all it's worth.  So far today he has asked me to put on his socks for him, open his banana, and carry his bowl of noodles over to the microwave.  I'm not sure if he's just taking advantage of the doctor's orders, or if he's really worried about his eye--or more likely, some combination.  We have reminded him sharply of his restrictions on several occasions (like when he bent down to examine something...or rubbed his eye when he was tired...or started to pick up Esther...it's just so hard to remember not to do the things he normally does without thinking about them!) and I think he is a little worried that he will accidentally hurt himself.  Last night he wore the hard plastic shield that the doctor had given him to protect his eye while he is sleeping, and he slept ten and a half hours.  He said that he slept so well because of the shield, since he didn't have to remember not to lie on his left side.  He has worn it a good bit during the day as well.  It just makes him feel more secure, I think.  I am feeling better as time ticks by as well.  I think that once we get through the first week, the main danger is not from modest increases in internal eye pressure, but from accidentally getting hit in the eye (say, in gym class, which he will not be participating in for a couple of weeks).  We also have to give Daniel three kinds of eyedrops four times a day for I think a couple of weeks (one kind will gradually decrease in frequency, but we may be using them for a month).  At least the doctor has okayed us to do three times of drops between the end of the school day and bedtime, so I don't have to go to school to put in drops every day like I did the three days before the surgery.  We will see the ophthalmologist again on Tuesday to see how the eye is doing.

Meanwhile, yesterday afternoon we left the Ronald McDonald House that we were staying at, and made our way to Grandma's house.  Last night was the first night that any of us slept well since the night before the surgery.  It feels so good to be rested!

And, I have to brag on Esther a bit.  I forgot to pack nighttime diapers for her when we went to the Ronald McDonald house, so I decided to go ahead and let her see how she did without them.  (She has had the skills to be nighttime toilet trained for a few months, I think, but I was putting it off until warmer weather when she would be wearing pajamas that are easy to get on and off and there would be fewer layers of bedding to wash on nights she forgot to get up.)  So far she has made it through the night on two nights out of three!  And on one night she got herself up and took herself to the bathroom, and then got back into her bed and went back to sleep.  So I am very proud of her progress!

the cataract is gone!

Daniel was actually discharged before 11, but between trying to meet the needs of one overtired little girl and one post-surgery big boy, this is the first time I've gotten on the internet since this morning.  I'm happy to report that the surgery was a success.  The doctor had told us at our first consultation that the outer edges of Daniel's cataract were adhered to his eye capsule around the lens, and that there was a possibility the capsule would tear when the cataract came out, requiring some extra steps to complete the surgery neatly and requiring the new lens implant to be placed in front of the capsule rather than replacing the cataracted lens in its place inside the capsule.  There was a very tiny tear, but it did not become big enough to necessitate the extra surgical procedures, and the lens implant was able to be placed in its optimum position.  So the doctor was pleased with the outcome.  He said he had to leave just a little bit of the edges of the cataract where they were, but he can remove them non-invasively with a laser later on.  Daniel has gotten a chance to look through his "new" eye once already, when the doctor had to adjust the patch.  Although it was extremely dilated at the time, he noted that he can see better than before.  So, yay!!

I thought Daniel handled the surgery very well.  He didn't seem anxious or grumpy this morning, and took all of the preparations in stride.  His only difficult moment pre-surgery was when a nurse showed up with an IV.  I had told him earlier that I thought he would have one, but he was really hoping he would not have to.  So he looked pretty unhappy when it appeared, but he cooperated with the stick.  For some reason he bled quite a bit from that needle, making a little puddle on his arm and up into his IV tube.  I do fine with nosebleeds and scraped knees, but needles get me, and I started feeling nauseous and faint.  Meanwhile I'm trying to assimilate what one nurse is telling me about a form I have to sign, translate what another nurse wants to tell Daniel, and project an air of serene confidence.  Ha.  Oh, Daniel also had to endure a set of painful eyedrops during this prep time.  They put some medicine in his IV to make him relaxed, and he did get pretty groggy.  Then they wheeled him away.  He told me later that he remembers them putting the apparatus in his nose and mouth to administer general anesthesia.  It must have worked, because he doesn't remember anything else about the surgery.  Meanwhile, I sat in the second recovery room and read a book.  After less than an hour the doctor came and told me how the surgery had gone.  After another half an hour or so he came in and talked with me again a little bit.  He said he thought the nurses would call me to be with Daniel in the initial recovery room, but they didn't.  So after another while, Daniel was brought into the recovery room that I was in and asked to transfer to the bed there.  He was extremely groggy, and complaining greatly of the cold in the room (it was very cold!) and that his arm (the one with the IV) hurt.  It undoubtedly did not help that he kept curling up his hurt arm, with the needle still in it!  He also kept trying to curl up on his left side, burying his just-operated-on eye into the pillow.  He groaned and mumbled and kept shifting his position, but didn't seem to be able to get comfortable.  He was not thrilled about drinking the gatorade that they brought him, especially since it was ice-cold and he was already cold.  Two extra blankets, a jacket, and about twenty minutes later, Daniel had revived enough to stay on his right side and complain more verbally.  He drank some gatorade, asked some questions and was interested in my report of what the doctor had said.  I made a couple of calls on the cellphone (most especially to Tim) to report on the success of the operation.  Then Daniel called his foster mother in China to tell her about it (much more pleasant for both of us than another twenty minutes of him complaining!).  Daniel really, really, really wanted that IV out, but he was supposed to pee first (I guess to make sure that he didn't need any more of the liquid that he was getting via IV?) and despite now copious quantities of gatorade, he kept assuring me that he didn't need to go to the bathroom.  So we were in that recovery room for quite a long time.  Finally, when he was obviously wide awake and I reported to the nurse that his stomach and head felt fine, she took pity on him and went ahead and took the IV out.  Within a few minutes he was sitting up and asking about his shoes, and then went straight to the bathroom and relieved himself of the gatorade.  So they discharged us, we got another brief visit with the doctor, and then someone brought Daniel downstairs in a wheelchair (which he thought at first he was expected to push himself!) and Tim and Esther met us and brought us home.  Daniel continues to not feel nauseous or dizzy and to not have any pain in his eye, but he has been tired and not very hungry.  We see the doctor again tomorrow and 9:30, and if everything looks good then, we are free to go (with activity restrictions, of course) for another two weeks.  So we still have two weeks of eyedrops, but I am very happy that this part of Daniel's cataract sage is behind us!  And oh, how I hope we all sleep better tonight than last night!

surgery this morning

I was hoping to post last night, but by the time we had spent an hour in silence and darkness watching Esther not fall asleep...and then another half an hour getting everybody ready for bed, including running back out to the car for a sleeping bag for Daniel because he wasn't comfortable with just a blanket on top, while Esther continued to not fall asleep...it was too late to mess with getting the computer out.

So for anyone who happens to be awake in the wee hours of your morning to get this--Daniel's cataract surgery is this morning.  I'm not sure if getting here last night was a good idea or not.  We avoided an hour and a half drive on a wet and foggy highway in the dark, but thanks to Esther's difficulty sleeping in a strange place, we are all pretty tired this morning anyway.  Ugh.  But at least we are not stressed about whether or not we will arrive on time.  The surgery should go smoothly, and Daniel will likely be discharged around noon.  I will stay with him at the hospital while Tim entertains Esther.  All prayers are appreciated!

I think she's growing...

Esther has been sleeping nearly twelve hours a night recently, and her appetite is amazing.  Like today at lunch, when my 32-pound(?) munchkin personally consumed:

an entire can of sardines (3.75 ounces)
a piece of bread
a thick slice of Monterey Jack cheese
a morsel of turkey
several helpings of cranberry jello salad, and,
a cup of chocolate milk

And yes, she did have breakfast this morning.  And a snack.  And she will probably have another snack this afternoon, followed by a hearty dinner.  So she's got to be growing, the only question is whether she's growing up...or out!

First Communion

I suppose New Year's Day was a fitting time for Daniel to experience his first communion.  Our church has been in-between pastors most of the time since we came back from China, so today was the first time we have had communion in months.  This morning we explained to Daniel what communion meant, and had him watch the part of the Jesus film that includes the Last Supper.  I explained that communion is for people who believe in Jesus and who want to obey him.  Daniel said he wanted to take it.  I asked if he believes in Jesus, and that Jesus died to take away his sins.  He said that he does, and added that he believes Jesus, wants to worship Jesus, and wants to love Jesus.  So we agreed that it would be appropriate for him to take communion. 

Before we went to China, we had prayed that Daniel would have an open heart towards God.  When our friend explained the gospel to him in China, he clearly was open to it and wanted to receive it.  After we got home, though, it was clear from some of our conversations that his understanding was quite limited, and that, in particular, much of his concept of God borrowed from the Chinese concept of Fate.  I hadn't realized until this morning that I have heard many fewer of those types of comments recently.  Meanwhile Daniel prays when he is worried or confused or thankful, and tells me regularly that he feels that God is helping him to grow up into a better person.  So I think little by little his understanding of God and relationship with God are increasing.

I didn't get to share Daniel's first communion with him because I was in the nursery today.  :-(  But the couple whose baby I took care of told me that this was the first time they have gotten to take communion together since their wedding, and it obviously was significant to them to be able to do so.

The rest of our day was uneventful, and pleasant.  Daniel and Esther took down the Christmas tree in the morning.  We played some games in the afternoon, both the electronic and the old-fashioned variety, and then in the evening I gave Esther a bath while Daniel rearranged his room.  Now Daniel is making a phone call to China, Tim is reading a book, and I'm writing.  Lovely!

Tim told someone at church today that his wish for 2012 is that it be less eventful than 2011.  :-)  2011 was a good year with many blessings, but yes, after moving and Tim starting a new job in 2010, and then adding a teenager to our family in 2011, I could go for an uneventful year myself!  But whatever the next year holds, may your and our lives be filled with God's life.