Interacting with the medical system

I returned from Australia, went to work for a week, then started dealing with Daniel's hip dislocation. He had long been scheduled for surgery on November 17th. That would not have been too bad, except that on November 16th, Paul suffered a detached retina! Here I am, trying to get organized to spend several days at Children's National Medical Center, and Paul adds his own crisis to the mix. We were lucky that my sister was available to take Paul to his surgical appointment, since I was sort of tied up.

Paul's story

His saga had started in September, when he was on a driving trip with Sarah to visit some archaeology sites along the Mississippi River, go to Mammoth Cave, visit some friends in Mississippi, and, finally, attend a Maya conference in Florida. Along the way, he had some bleeding in his eye, visited an opthamologist and a retinologist in Mississippi who said he should be OK, then had to cut his trip short when the bleeding recurred and it was not clear what the next step would be. It was very disappointing to both Paul and Sarah to have to leave the conference early.

When he got home, he found that nothing could be done until the blood cleared, but that was not happening, and he eventually had in-and-out surgery to get rid of the blood so the retinologist could see what was going on. That led to nothing, as the doctor said all looked OK. Then a couple of weeks later, the detachment.

Since then he has been recovering from the reattachment surgery--slowly. And faces more surgery in a couple of months to remove the oil that is holding the repaired retina in place. Many different kinds of drops, several times a day, an abraded cornea, lots of discomfort....

Daniel's story

Daniel's initial surgery seemed to go well. He spent three nights in the hospital, had some pain but not a tremendous amount, and was basically OK with it all.

He left the hospital with casts on both legs and a bar in between....his legs were so widely spaced that he could not easily get through doors in our house. He spent most of his time in bed, as it was very difficult to get him positioned in his wheelchair and move him around.

After two weeks, his incision started oozing blood. We visited the surgeon, who recommended going back to the hospital so he could take a look at the situation. We concurred, and that night, Daniel was readmitted to CNMC.

This time, the surgery was less extensive, but we were there five nights instead of three, even so. We had to wait for results of the tests for infection. After three days, unfortunately the results were not good. The infection was not one of the quick-growing bacteria, but one that only shows up after several days, and they did not think it was a contaminant in the sample. So Daniel was started on a different antibiotic and scheduled for a PICC line (peripherally inserted central catheter) so he could get IV antibiotics for several weeks at home.

We finally came home and have been administering his antibiotic three times a day (the plan is to go for six weeks, followed by oral antibiotics until his initial surgery is sufficiently healed that plate holding his bone together can be removed).

Daniel was seriously bored in the hospital, although I had taken most of his toys, videos, CDs, etc. He kept stating in no uncertain terms that he wanted to go home. I agreed with him, but we had no choice, unfortunately.

The only good thing is that CNMC is set up well for parents and kids. The rooms are all private, the food is not bad (they bring a cart to the floor, and you choose what your child wants), and the food in the cafeteria is pretty good (the apple dumplings were epic). I learned a few things on the first stay that really helped for the second, such as taking a sleeping bag, which solved the problem of sheets and blankets sliding off the very slippery sleeping couch.

Now we just have various doctor visits (both Daniel and Paul), and the followup surgeries to look forward to.

Halloween catching on in Australia

Earlier in our trip, folks told us that people in Australia don't really celebrate Halloween. However, today as we were returning from a trip to a nearby mountain, we saw some children dressed up. I thought they were going to a party or wedding, but then we realized they were in costume. Later, we went to a party and found many children out trick or treating in that community. The interesting twist is that this is all before 6:00 p.m. I don't know if this is occurring all over Australia, but this area near Hobart, Tasmania seems to have picked up on Halloween.

Australia--will we buy more t-shirts?

Unfortunately, the answer is "yes." Sarah's first act in Brisbane was to find a store with a good price on fairly nice t-shirts. We bought three (one for Daniel). I did reserve the right to wear them if desired, however.

We had to do some "driving on the wrong side of the road" to get going here. We landed in Brisbane after way too many hours on a plane and rented a car. Sarah kept telling me I was too far to the left in my lane. It is challenging to get used to the perspective and to remember where to look when making turns. We got to the hotel in one piece, though we did have to circle the area several times before we managed to get on the right street.

The main reason for going to Brisbane was for Sarah to visit a friend she knows from the Internet. We spent our time before going to her friend's home doing some shopping (a memory card for the camera, those t-shirts) and getting a haircut for Sarah...no time before leaving home (found a beauty school...nice price, good haircut). And Sarah had to work on a dragon she was making for her friend.

Going to Australia

Sarah and I are off to Australia. I still need to take half the items out of my suitcase (ha!). Biggest worry is the cabin baggage allowances, especially on domestic airlines. I got caught on one other trip there...had to check my carryon because it was too heavy!

We are going to visit Brisbane, where Sarah will get together with a friend, then Casterton and Hobart, with a brief visit to Melbourne (not sure we will ever be there long enough to leave our hotel), and some extra time on Tasmania. Most of this is part of our Friendship Force trip, so we will be staying with families.

Sarah and Paul on the road

Paul and Sarah are traveling through the mid-south on their way to the Maya on the Playa conference. If you followed America's Got Talent this year, you know that a singer from Kentucky named Kevin Skinner won. Can you believe they went by his home town and did not stop and take a photo by the town sign, or try to find his house?

They are having a little issue...Paul started having odd visual sensations and when he was able to get to an opthamologist, found that he has a small tear in his retina. There is a retina specialist in the same building, so he is going to have laser repair on the spot. Cool. Wonder how our health insurance will deal with this. I just hope it does not affect their trip! Fortunately, they are now going to be staying with friends for a few days, so perhaps a bit less stress than the driving they have been doing.

Micro-vacations

I have two micro-vacations going. It is a good thing, since my next vacation probably won't be until October! They are:

• My screened porch--having breakfast on the weekend, looking out over the back yard...seeing my roses and the maple trees in the yard. And any time, lounging on the porch, maybe reading the paper, drinking a cup of coffee. I am at peace and loving life.
  

• In the pool, looking up at the crystal blue sky behind the tall, dark green trees that surround the pool. The micro-climate is cool here, no matter how hot and humid the day. Some don't like the trees, and want more sun, but not me...the trees are what make this an idyllic spot.

What is your favorite micro-vacation?

Training (or is it a vacation?)

So when you go to a training course out of town, is it really a vacation? Sometimes, if you connect with interesting people and the training is not too demanding (i.e., no homework!), it can seem like it. I just spent a week in Davis, CA and although I had to make a presentation, there was plenty of time for shopping and making new friends.

One of the participants had a guitar, so we sat by the pool one night listening to his songs (some were his own compositions). We did kind of annoy the management, since we were there long after the pool was supposed to be closed (who knew??).

Two karaoke nights (I did not sing, but enjoyed the skills of my cohorts), an outstanding Jalapeno bacon cheeseburger (hold the chees), and a few beers later, I am on my way home....

Graduation and All Night Grad Party

Graduation
We made it....Sarah is now a high school grad. The ceremony was held at the George Mason University Patriot Center, so there was quite a crowd...no limit on number of invitees per grad. It was great to see Sarah marching in. I felt very proud....no tears. We had grandparents, aunt, and friends in attendance, including Marina, who was part of Sarah's life beginning when she was about three months old, and became like a second mother to both Sarah and Daniel. It was great to see her.

We had seats close to the stage, thanks to Daniel (wheelchair seating) plus seating reserved for "senior citizens and people with disabilities" where my parents sat, with everyone else just above them. Unfortunately due to incorrect information from an usher, the students came across the stage to receive their diplomas with their backs to us. Oh well. We had a great view of the graduates in their seats as well as the speakers on the stage.

Gerry Connolly was the featured speaker, along with two student speakers, the principal, and a few others. Most gave short, humorous talks, which helped make the time go by fairly pleasantly. Listening to all the names being read by three teachers was moving and interesting, to hear the diversity represented.

After the ceremony, we had to wait quite awhile until Sarah made it to the front of the arena. By the time she came out, it was raining, including thunder and lightning! We got out of the weather pretty quickly after hugs with all the friends in attendance, but I wonder about the common sense of the folks who stayed out in the open.

All Night Grad Party (ANGP)
Once we got out of the Patriot Center, the next order of business was to get to the ANGP. I had to go, too, since I helped organize one of the food stations (smoothies) and needed to be there to supervise. So we both changed at home (I was supposed to wear black pants and a white shirt; Sarah wore her signature cargo shorts and a t-shirt) and went over to the school. I dropped Sarah off, then found a place to park. It was not as bad as I thought it might be.

When I signed in and found the smoothie station, I learned that one volunteer had been there for a little while, but had left. Later, after no one else showed up, I checked with the folks signing in volunteers and found that one person was not able to come due to illness, and the other was working somewhere else. I spent the evening alternating between carrying trays of drinks around to the students and going to the parent lounge for coffee and snacks. There were lots of good snacks, and plenty of coffee, for all of us sleepy parents.

The kids had a great time, from what I could see; I enjoyed taking drinks to them--they were very grateful since many of the activities were quite strenuous. I got to see a lot of sweaty people! Sarah especially liked the "money machine," where a person stood in an air machine and play money and some real money was pushed up into the air. She could use the play money to buy raffle tickets, chips in the casino, etc.

The kids also were allowed to choose an item from the "store." Sarah picked a George Foreman grill, since we already have a blender, and she does not drink coffee. (We have tried it once, and it seems pretty good.) They also received a t-shirt and a Jefferson Cup, engraved with the school name and 2009 (pretty nice; no one associated with my high school gave me anything when I finished!).

The finale of the night was a magic show, followed by drawings for some items donated by the school (some external hard drives and similar tech items), and the raffle. The students had the choice of TVs, Redskins tickets, a Wii, and iPods. Sarah had put all her tickets in the Wii drawing, since she has been lobbying for one for ages. Her strategy worked; she won the third of the four Wiis being raffled. She RAN to the front to get her prize and hugged it until it was time to go home. Now she says we should spend the amount of money we would have spent on buying a Wii for accessories and games (we had said we would get one after graduation).

Finally, it was time to go home. Tired but happy, we headed home and fell into bed. I think I got up around 10:00, and Sarah, teenager that she is, slept until at least noon, or maybe it was 2:00....

Now, onto the rest of her life!

Speaking Spanish

Sarah and I got to practice our Spanish this past week. Our Friendship Force club hosted a group from Bogota, Colombia, and neither of the two women staying with us spoke much English (one spoke no English). I found that I remembered more words as the week went along, and I was able to converse fairly well. However, there were a few times when I ended up nodding and smiling because the pace was too fast or the vocab was beyond me.

Paul, who speaks essentially no Spanish, did a good job of taking care of our visitors on the days I was working. He even took them to Luray to go to the Caverns. He discovered that they have done away with the tours and now give headsets to visitors for a self-guided tour. They have the tours in various languages....what a concept!

We now have a standing invitation to visit Bogota, and one of them has a daughter who is in the minstry of culture and might be able to help with Paul and Sarah's quest to do archaeology next winter. Both of them are or have been involved with people with special needs. We did not know this before they came, so it was interesting to talk to them about their work.

Visitors from Colombia

We are preparing for a visit by members of the Bogota, Colombia Friendship Force club. Two members are staying with us, out of the group of 25 visiting our local club (Friendship Force of the National Capital Area).

We will get to practice our Spanish, since we understand that one of the women speaks "some" English, but the other speaks no English.

Today's plan is to finish cleaning up the house and getting some basic groceries in. (It is a good thing that we have these groups in once in awhile, to have that housecleaning incentive!)

Update on Daniel's hip issue

Daniel's orthopedist wants to do surgery to correct his hip dislocation. This will most likely occur late this summer. I hope the doctor's prediction is correct that Daniel won't need the full-body cast that many younger kids have. He expects to only need leg casting with a bar in between them to keep them in the correct position for healing...still not a picnic, but probably not as hard to deal with.

Hips--a new frontier

Daniel, who has cerebral palsy, now faces one of the most common problems that children with this condition encounter. One of his hips appears to be dislocating. Many children have surgery for this early in their lives. Daniel is 14 and only now has developed this problem. He has been growing fast and his leg muscles are fairly tight, which may have resulted in this hip dislocation. We see the orthopedic doctor on Wednesday and will presumably get some recommendations/options for how to deal with this. One good thing, it is only one hip. Often, children have problems with both hips.

School Days--Counting Down to Graduation

Eight weeks from today, Sarah will graduate from high school, and not a moment too soon. It has been a long trip through school, for her and for us. She has little patience for many of the assignments and no understanding of the need to just do what is asked and get it over with, so homework becomes very painful and time-consuming.

On the other hand, she can read and digest the weekly editions of Science News (a magazine that covers scientific topics in all fields at a rather technical level, but very well written so it is accessible to non-specialists in a field), and has been doing so since she was about 12. Her interests are wide, but not easily captured in the classroom in many cases. I don't think she will look back with much fondness on her high school days.

Sarah told us last night that someone from the yearbook visited her art class and wants to feature some work she is doing. This art form is called "spriting." I don't understand it very well, but it involves creating or modifying imaginary creatures, so far as I can tell. I will see if she can post one here.

Daniel is finishing middle school this year and will be starting high school next year. We don't know yet what school he will attend. We will be visiting possible schools soon so we can choose the appropriate placement.

What's Going on in 2009?

Paul has been volunteering with an organization that evaluates applications from students from the former Soviet republics who want to participate in a year-long cultural exchange program in the United States. He has reviewed about 70 applications so far and has found it to be quite interesting. I have, too, having heard about many of the students.

The volunteers have the opportunity to travel and escort the students either back to their home country at the end of their stay or as they are coming here to begin their program. He offered to go anywhere and received an assignment to accompany a group back to Tajikistan in June! Apparently, this is a route that they have not been sending volunteers on recently, so it is interesting that a rookie participant is getting to do it.