Scott and Marcus website

Starting a new page!!!

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June 8, 2008 (T2 + 2 months, 8 days)

Sorry I have not updated - but we have been busy. End of year school activities, work, and maintenance.

First, as of tomorrow, Scott and I will be married 18 very good years. Despite all the bad times, I would marry him all over again. Unfortunately - we have been too busy to celebrate yet.

On Wednesday afternoon, a nasty thunderstorm came through - and we have been without telephone every since. Until this evening when Scott finally found and fixed the problem. Yeah! But when he was doing clean up for that - he found a big puddle under the air conditioning unit. Guess we have our work cut out for us tomorrow… so much for an anniversary.

My Mom came back from visiting my sister in Pittsburgh on Friday (her train was SIX HOURS LATE!) and brought my nephew with her. So I feel like we now have three kids (fortunately he sleeps over at my mom’s). So today we took him and the girls to our cabin for a couple of hours to swim.

I know you tuned in to hear about Scott. His liver seems ok according to his blood work. But he still had pain and is very anemic. We have some medicine on the way (Procrit) that is suppose to help. And his prograf levels are very low AGAIN. But since his kidneys are doing a little worse, they are hesitant to have him take more prograf. He just has so little energy, and the prograf is making his mind a bit confused too, so he is very discouraged. It helps when he can fix things like the phones successfully. And he is also really enjoying a new project he just started for work. He’s up to about six hours per day now, with the occasional eight hour day.

Last weekend, he finally bought the camera he has been saving up for and drooling over for more than a year! Now that it looks like he will have a future, he celebrated and got the camera. It is part birthday present (for his birthday, he got to go to Memphis and have surgery), part anniversary present. This is him at the cabin, desperate to find something to take a picture of - he is photographing bugs. The kids are swimming just on the other side of the dock in back ground.

Scott’s rebuttal:

I’d just like to point out two things: 1) the kids weren’t being interesting at the time, and the bugs were, and 2) they were really GOOD pictures of bugs. (you need to click on the picture to really see the details)

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June 12, 2008 (T2 + 2 months, 12 days)

Scott updating: I just looked at that date, and thought it can’t be right (but it is). Has it really been less than two and a half months since the transplant? Maybe I’m not doing so badly after all. So much has happened in that short time. Both of our daughters have had birthdays, and we celebrated our 18th anniversary. We returned home from Tennessee, and mostly back to work . Wow, maybe THAT’s why my head is still spinning most days.

Health-wise, my liver is still doing great, and my body is still trying to catch up. My energy level is still down, and I often take two hour naps in the afternoon. The Procrit prescription, that’s supposed to help with that, still hasn’t come yet. We need to mail order it to get the insurance to cover it, and that takes time to set it up. We anxiously check the mailbox each day, because we so very much want this to get better. I keep thinking that maybe some of the pain in my joints would go away and I could gain back some muscle, if only I had the energy to exercise a little.

Well, I was able to fix the phones and the air conditioner, just in time for the ice maker to break. Now the front door is sticking, too, because the threshold swelled after the girls scrubbed the front porch. It’s always something. When we moved in, I was looking forward to fixing little things from time to time. Now, I’m not so sure… Actually, when my body lets me do it, fixing things is the most relaxing thing there is for me. Especially when I can get two repairs out of 32 cents worth of parts.

Despite Martha’s predictions, we were able to celebrate our anniversary. Jody watched the kids, and we actually got to go out like grown-ups to The Cheesecake Factory. Of course, then we had to go shopping for birthday presents, and we came home exhausted, but at least we did get to go out together.

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Friday, June 20,

Martha here. I am taking the weekend and we are going to the beach!! Unfortunately, since Scott energy level is so low we have decided he should not go with us. We are actually going to a campground at Cape Henelopen near Lewes, Deleware and it is a long walk to the restroom - and just that would be too much for him. Let alone the walk to the actual beach to see the water (which he is not allowed to swim in.) He wanted to go to just take pictures - but even that would require too much walking. The saddest part - a few weeks ago he probably could have handled it - but he is much weaker now than he was then.

The good news, we finally got the procrit (he will take once weekly) and that is suppose to help with his anemia and hopefully improve his energy level. But we must be patient, (not my strong suit). He did not get this way overnight, and he will not be cured overnight. I am guessing it will be at least a few weeks to notice any results.

Scott is also experiencing a lot of pain in his abdomen. But mostly it is around his spleen - not his liver. He must actually cradle his side in order to cough, sneeze, or even yawn. But nothing is there on scans so the doctors don’t know what if anything is wrong. The pain is taking up a lot of his energy as well.

Scott’s liver numbers continue to look good. We are having problems getting copies of the blood test results (they stopped faxing them directly to us - we must wait for the the doctors to send us copies).

I am going to go so I can finish packing for the beach!! The girls and one nephew are going with me. We will be coming back on Monday (except Erin - she has to come back on Sunday so she can go to Girl Scout day camp week. ) The weather should be great (last time we went, it poured the entire weekend!). We are celebrating the start of summer and the end of school!!

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June 22, 2008 (T2 + 2 months, 22 days)

Scott updating: 260 That’s how many doses of medication I still need per week. Every Sunday evening I set up all of the meds for the week in their little compartments, so that I can keep things straight. And the total per day comes to 37 pills, and I have a single shot of Procrit once per week. That’s a big number. This is what 260 pills looks like (no, not in a big pile this time).

Something seems to be working right now, at least. I stayed home this weekend and absolutely rested for once, while Martha and the girls went to the beach. On Thursday I was really in a good deal of pain. Deep breathing of any sort caused stabbing pains through my left shoulder, spleen, and liver areas. A yawn was extremely unpleasant, and hiccups were the kind of torture that should be reserved for child-molesters. Then on Friday my neck started to hurt really badly, too. But after two days of being an absolute slug, I feel pretty good. Deep breaths don’t hurt at all, though the spleen is still a little tender if I poke it. So maybe the rest, or possibly the Procrit, but something is working.

It’s good that I didn’t go to the beach, but I did miss out of some excitement. Erin came back early, and the van she was riding in caught fire and burned almost completely. Bizarrely, Erin’s backpack (including her favorite bear Sunshine) was one of the very few things that didn’t get consumed. She did lose about half of her clothes, however, since they were melted to the backpack (it got that close); Sunshine is fine, but traumatized. I feel really badly for my friend Dave, since he had put a lot of time and effort into fixing that van up, and it was almost a member of the family. But in the end, it’s a thing, and people are much more valuable. Thankfully, everyone was alright.

Back to the real world on Monday.

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Sunday, June 29, 2008 afternooon. (T2+ almost 3 months)

The liver is still doing very well! Scott’s kidneys are still continuing to do poorly (NOT badly enough to require dialysis or even panic!!) and he must be careful about his medications and to drink as much water as possible. He anemia is slightly better (he is now on Procrit - that drug they advertise on TV for anemic cancer patients) and hopefully it will continue to improve. His white blood cell count is also low, so if he were to get sick, even just a cold virus, he would have a tough time getting better. But so far he has been very healthy and I am being overly paranoid.

The girls and I have been very busy. We got back and started to unpack from the beach, when a thunderstorm hit! Then picked up Erin from camp only to turn around and take her to a Girl Scout meeting! The next day Erin went to camp while Robert, Joey (who just arrived from Pittsburgh), and Shannon joined my cousin and her daughter, Aysha, at Six Flags. They had a great time, and they brought Aysha with them for the rest of the week. Robert returned to Pittsburgh but Joey stayed the rest of the week. Erin continued to do day camp while, Joey, Shannon and Aysha “hung out” here and at their Grandmothers house a mile from here. (except when Shannon was in swim team practice). On Saturday morning Shannon and Erin had a swim meet and then packed for ANOTHER trip. This time for an overnight Girl Scout camp. Aysha went home last night, Joey took the bus back to Pittsburgh this morning, and my girls left for camp early this afternoon. Now the house seems VERY quite. Scott and I are planning a nice quiet dinner of foods the kids hate (seafood) and watching what we want.

I wish I could say I had a lot of time this week with no kids to drive around, but I have something going on almost every day or evening! The girls are coming back on Thursday since Friday is Fourth of July.

Scott taking a nap with his “Boo-Boo Bear”.

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These are pictures of our trip to the beach.

One one on the left is Shannon’s Sand Frog.

The one on the right is Shannon buried in the sand.

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Tuesday, July 1 2008, evening - (T2+ 3 months! T1 + 1yr, 10 months. )

We went to the see the hepatologist, Dr Thuluvath late this afternoon. Scott’s liver continues to do good.

Sorry I am a pessimist, but there is bad news. Dr Thuluvath believes there is more than 50% chance that Scott will need a new kidney someday. Let us hope it does not come to that. The good news is they were able to take Scott off a lot of the medications so that might help with his kidneys.

The doctor also told us to look into the Choler Implant. He should not have the surgery for three months, but maybe we can start the process before then.

Dr Thuluvath also told us he is leaving Hopkins. He will have an office in Baltimore and be associated with Mercy Hospital. If I understood correctly, he will still be teaching at Hopkins. I am not surprised since Hopkins expects a lot of their employees. Extremely long hours and surprisingly little money. (Dr Thuluvath had over a thousand patients - and he had to double, even triple book, so he see patients like Scott more than once every six months). Hopkins expects them to work for the joy of being a Hopkins employee. We have decided to follow him to Mercy rather than stay with Hopkins doctors.

Otherwise, we had a good evening. The weather is wonderful. It was warm, but not humid. (I could really like summer if it was like this all the time.) We went out to eat and at outside. Inside the restaurant it was very cold from the air conditioning, but outside was very nice. Tonight - sleep with the windows open!!

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Saturday. July 12 2008. evening.

I am sitting at the swimming pool while I type this in. The girls are on swim team and tonight is their “swim fest”, where they rent the pool after it is closed. All night. All the kids are good swimmers so safety is not a big issue. They turn the lights on, in the pool which is fun because it is unusual. Most the kids know each other. Lots of games (example, a relay race where each team has a set of clothes that each swimmer must put on and swim in, then take off and hand to next swimmer.) Unfortunately, I am getting eaten alive by bugs. And I will need to volunteer for something soon. Many of the families (all kids must be accompanied by a parent), have set up tents and are spending the whole night. The girls and I are going home to our bug-reduced-zone house at some point. And a bed. Did I mention I am getting eaten alive? I have no Internet access so I am typing this into Word, in the dark, by the light of the half moon (and the screen), and going to put it on the web tomorrow.

The girls are doing great at swim team! They do not swim year round like many of the kids, so they are not going to come in first place. But I am proud of them anyway. Erin managed to swim the Butterfly stroke, for the first time without disqualifying. Shannon uses her long arms and legs to great advantage and is usually in the top three. If she would swim year round – she would kick butt!(Shannon steals control, and has written MONKEY and also CHICKENBUTT. Hahahahahahahahahahahahahahaha. Chickenbutt, again.)

Scott. His blood tests were interesting this week. I knew something was up when both Methodist Hospital and his Hopkins hepatologist called him this week – and we kept playing telephone tag for a while. (they got a kick out of me leaving a message of “Martha Hull – tag, you’re it”). But I was only home for an hour at a time before running off to my next scheduled event. Anyway, his creatinine (kidney number) is a little better, but his potassium is high. They want him to try to restrict foods with potassium. (just meat, dairy, vegetables, and fruit). Yeah, right. Also, more important his white blood cell count is dangerously low. He is not sick, but if he did get sick … They are going to do some tests to make sure he does not have a virus (probably testing for HIV) that is driving it down. In the meantime, we are all going to wash our hands a lot. Also, his bilirubin is up just a little bit. Not enough to raise red flags, but the doctors (and I) are keeping an eye on it.

Update on swim fest. They just threw a whole lot of coins into pool and the kids get to dive for them. Little kids in shallow end, big kids in diving well. Did I mention there is a moon bounce, and everyone was suppose to dress like Disney characters? Did I mention I am getting eaten alive?

Scott is going to Montreal next week! He is attending a conference for work. We are both a little nervous about logistics. Traveling without a hearing person to interpret, a lot of walking at the convention, between convention and hotel, to meals, etc. Plus, attending talks could be interesting since he can’t hear.

We are both convinced that fate will laugh at us, and something will go wrong. Example, his blood tests will come back even worse, the doctors will call and see you need to go for such-n-such test and I will say “Ah, he is kinda out of the country…”. Fortunately, the blood test results will not come back until AFTER he has left. I can’t imagine too much that can go wrong before he leaves (unless he runs a fever, that would be a BAD THING. But so far, no signs of any fevers, so I am not too worried).

Scott was watching some docu-medical-drama where they were worried because an infection did not respond to anything except the “godzillacillin” antibiotic Meropenum. Meropenum did not work on Scott last year….. Fortunately, Amikacin (which is even tougher) did, but with a cost. Amikacin is apparently very specilized, while Meropenum is more broad spectrum. For several months, he was treated with both. The Amikacin to kill the bacteria and the Meropenum to keep it from mutating into something that even Amikacin couldn’t kill.

Swim Fest update. Now they are going to play freeze tag with water guns… lots of squealing. I am getting a headache. I keep hearing fireworks from somewhere – and hope it is thunder. But the moon and stars just laugh at me. At least it is slightly cooler and the bugs have slowed down. Still looking forward to my bed.

Last update. Kids swam until midnight, then I brought the two prunes home.

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Thursday July 17, 2008. evening (T2 + 3months, 16 days)

Scott updating: Greetings from Montreal! Yes, you read that right. I’ve been in Montreal this week attending a conference for work. It’s been a week of firsts: first trip by myself since either surgery, first time in an airplane since either surgery, first time out of the country since the surgeries, first trip deaf, and first time in Montreal. The trip was worthwhile, but I’m glad it’s almost over. (battery’s running out, I’ll write more later).

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Saturday July 19, 2008 morning (T2 + 3months, 18 days)

Scott updating: OK, I made it home. I wish I could say as much for my suitcase, but hopefully that will find me soon. Fortunately, I kept all my medications with me. When you travel these days, you need to take all your original prescription bottles with you, so if you lose them, you lose everything - that would be bad. To answer Mary’s question, both batteries (mine and the computer’s) were wiped out. After a good night’s sleep, I feel a lot better.

This trip ended up involving a lot more walking than I imagined. On paper, it’s easy to get on the metro from the hotel, ride one stop, and get off at the convention center, or ride on to anywhere else for sightseeing. In reality, though, the metro station was pretty much under the hotel, but required that you walk around the block, across the street, down the escalator, then backtrack all the way back under the hotel every time, adding about 3 blocks to the walk. It might have been shorter to just walk to the convention center; I never tried it.

Dinner was another set of problems. I kept getting advice from people who didn’t understand that even two blocks was extremely painful, and near the end of my limits. I’d get halfway to where they suggested, and end up with McDonald’s, Subway, or Domino’s. Finally, I found out that Chinatown was less than two blocks from the convention center! I could have eaten there anytime, and gotten better food less painfully. Not only that, but there was a Holiday Inn right there in Chinatown. If only I had known, the trip would have been much easier and more enjoyable. Of course, a month ago when I made the plans, my knees and hips didn’t hurt this badly, either. They’ve gotten much worse lately, and I hate to think what the solution might be. We see the orthopedic doctor next week (final follow-up from AVN), and may start a whole new ball rolling.

I did my best to enjoy sightseeing on Wednesday, though. I took about 75 pictures (most of which were multiple shots, still learning the camera settings), and some of them were pretty good. I’ll try to download a few later. I’m still learning exactly how to use the old film camera lenses (manual focus, and manual exposure) with the new high-tech whiz-bang camera, but that’s part of the fun. I learned a lot by shooting low-light pictures in the Notre Dame Basilica (or “Basilique Notre-Dame de Montréal”, if you insist on froggie-talk) without flash. The pictures are a little noisy because of the high ASA setting, but the architecture was amazing - such attention to detail.

That’s about it for now. We have a lot of work to do getting the bedroom fixed up (finally), and preparing for Pennsic, and several doctors’ appointments, so I’d better get back to work. Keep smiling, and I’ll do the same.

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Tuesday, July 22 (T1 1 yr, 10 months) (T2+ 3 1/2 months, )

First, I want to mention the loss of Scott’s Uncle Jesse this morning. He was also known as “Chuck”, “CJ”, and Charles Jesse. He has been fighting brain cancer for about 9 months and last night he moved on from this world. He leaves behind a wonderful wife, and 5 great kids - one of which is Marcus who donated his liver to Scott just under two years ago. He also has been blessed with 6 grandkids so far. Jesse grew up on a farm with 3 older brothers (one of which is Scott’s dad, Steve) where he learned to work hard, and save what money you got, but also respect for family, friends, and the world. He served in the Marines and was stationed in Bolivia where he met his wife Teresa. He worked hard and put himself through college and became a successful financial adviser for Ferris, Baker, Watts. As I said he had 5 kids, 1 son, and four beautiful daughters. (The two youngest are twins, and were junior bridesmaids at my wedding.) Although he was quite successful in his business, he never forgot his hard working roots. He started his own branch were he could wear causal clothes to work instead of business suits - and since it was a profitable branch - none of his supervisors complained! He had a nice house in Montgomery County, near were we would occasionally go canoeing and camping with friends. He was more than happy to lend us a canoe so we would not have to transport one very far. One day when a friend was helping Scott return the canoe, she was impressed by his nice house and reasoned he was a good financial adviser if he was this successful with his money. As they talked, they passed the swimming pool, with someone cleaning it out in dirty, shabby clothes and they waved to him, said hi, and explained they were just returning the canoe. After a while she mentioned she wanted to meet Jesse, and which point Scott said - “you just did!”. And she said “You mean the grungy pool guy owns this place???” . When we told him this story years later he loved it and liked the title of “Grundy Pool Guy”, especially since he was proud of the fact that he did most of the landscaping and work himself. Safe journeys, Jesse. I know you are in a better place, but we will miss you.

As Scott said, we have chosen to finally redo our master bed room (it has needed doing since the day we moved in,) (There are other reasons too, but I won’t go into them). I am cleaning the room out and finally getting rid of stuff (I am an admitted pack rat). I think I have finally decided on a color (blue - as in close to blue jeans. My logic - almost everything goes with blue jeans). I think we may do an imitation slate tile in the closet, in front of the sinks (which is actually part of the bedroom - not in the restroom) and in the restroom. And carpet in the main part of the bedroom. But the biggest job still is getting everything cleaned out.

Oh yeah, I am suppose to update you on Scott and his condition!! I got a surprise call from his hepatologist last night. Apparently the cat scan they did two weeks ago showed a fluid collection in his liver. Fortunately, he has had no sign of a fever, so presumably it is not an infection. But the doctor wanted it re-scanned immediately to see if it had gotten worse, better, or stayed the same, which we had done early this morning. Have not heard the results. But there is a possibility that he may want to drain it. And that is not without some risk also.

He also went to go see the orthopedist for a follow up with his hips and the avascular necrosis. Since his hips and knees are hurting so much lately, Scott was very nervous that the necrosis might be back and he would need hip and/or knee replacement. But there is no evidence of further damage to his hips bones. Most of the pain comes from weak muscles (he has lost a lot of muscle mass) and the muscles being extremely tight. The orthopedist prescribed the one thing I had asked the liver doctors to prescribe - physically therapy. They think he should just walk more - but if it hurts to walk - you are not going to do it, nor is it helpful when he walks so stiffly. So hopefully he will get the exercise and stretching he needs - probably in a warm therapy pool.

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Friday August 1 (T1+ 1 yr, 10 months) (T2+ 4 months, )

Scott updating: A quick update while we’re packing for a short trip. Well, short for Martha and I, but long for the girls. As many of you know, we go to a big medieval re-creation event near Pittsburgh every year, and this year is no exception. Known as Pennsic, the event is based on a war between two huge groups of re-creation buffs (about 4000 on the field at once), but we go for the uniqueness of the “town” that gets created every year for two weeks, then disappears completely until the next year. There are many people that I only see there, and often have no idea of their name in ‘real’ life. Once again this year, Martha and I are limited to only four or five days, but the girls get to stay with the ‘adopted family’, then will stay with Martha’s sister Mary for an a-yet-undetermined length of time. Back just before school starts.

Medically, I continue to slightly confuse the doctors (nearly got my species identified, now). Last week the doctor called to say that they found some fluid in my right lung and liver (after looking in my left side and spleen), and he wanted to tap the liver fluid (I had ‘heard’ lung earlier). So that was scheduled for Tuesday, but I asked them to cancel it, based on previous damage that has been done when they poke me. They agreed for now, and we’ll see what it’s like in two weeks. Otherwise, there’s slow improvement in my blood test numbers, though the white cell count (especially the ‘first responders’) is very low. I’m trying to exercise when I can, but sometimes my body just won’t do much without a nap. I did make it for three laps around the pond at Jesse’s memorial service, though (~0.6 mile). We talk with the audiologist about a cochlear implant (again) next Thursday. No other appointments scheduled soon.

With the passing last Friday of Randy Pausch, there has been some renewed interest in his “Last Lecture”, and I now have a better idea of what that was about. I really like his messages a lot. I was able to download a captioned version of the lecture and watch it last night, and I could really relate to so much of what he said. He gave the lecture almost a year ago, when he knew for sure that the cancer would eventually kill him. Although my situation has never been so definite as his, I’ve driven through that neighborhood a few times, even if I didn’t live in the same house. We’ve had some of the same goals, similar experiences, and many of the same observations. I’d like to have time to write more here, and maybe I will later. One thing that really surprised me, though, was when (about 2/3 through the lecture) he put on his old high school letterman’s jacket. At first I saw that the initials were OM (same as Shannon’s school), then I noticed that the colors were orange and black (again, same). While I was contemplating the odds of two schools with the same color scheme and initials, he turned around and left no doubt that in fact he had attended the same high school that Martha graduated from four years later, and that Shannon attends now. I had no idea of that connection. Anyway, more later. We should get back Tuesday evening.

Keep smiling, and I’ll do the same.

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Thursday, August 7, 2008; T2+ 4 months, 6 days

Scott updating: Martha and I got back from Pennsic late Tuesday night, and went straight to sleep; it was a long day. The girls report that they are having fun, and were looking forward to last night’s “Midnight Madness” sales. Erin also announced that she has finally learned to swallow pills (using chocolate pumpkin seeds for practice), which can be very useful when she has a cold or fever. I would have liked to stay longer, but the uneven ground was really wrecking my hips, just like last year. I’m a little bummed that I missed yet another “Swill-off” this afternoon, but I did have a good reason.

This afternoon we went to talk with the surgeon who does cochlear implants, and got that ball rolling finally. If all else stays stable, we’re looking at surgery in October, possibly turning on the implant by Thanksgiving. The fine-tuning process takes a couple of months, but I should get back about 60% hearing in one ear. With any luck, the very loud tinnitus in my left ear will be reduced or eliminated by the implant. I’m looking forward to it nearly as much as Martha is. As I signed the consent forms, though, it did occur to me how often I have ended up with the ‘very uncommon’ complications that they discuss. Hopefully this won’t be one of those times. If something happens, we’ll deal with it, like we always do. Gotta try.

Keep smiling, and I’ll do the same.

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Friday, Aug 8, 2008 morning

What Scott failed to mention was I have had a nasty summer cold ever since we got back and I have not been able to go back to work (something about not contaminating the office.) Starting to feel a little better, but I think I am still contagious. My energy level is still very low so I have still not finished unpacking from Pennsic. However, the weather here is suppose to be gorgeous, highs in the mid-80’s with low humidity. Maybe opening the house up and getting fresh air will help my cold.

I am looking forward to Scott’s cochlear implant more than he is. After all - everyone understands him. I have to be very careful, when there are decisions we should both make together, sometimes I don’t consult him as I should, because of the communication issues. An implant will also make long drives better. Right now - we cannot talk in the car (whoever is driving must keep looking forward and so we can’t face each other and he can’t read my lips). He can do a monologue - and if it is daylight he can tell if I agree with something or not. But at night, he just has to ramble on in order to keep me awake. I usually drive because: 1 - I like to drive. 2 - he gets tired more easily. 3 - I can’t give him directions. 4 - he can read in the car and I can’t (I get car sick if I try).

He is getting the implant in his left ear, so that if he is driving - his “good” ear will be away from me and we may still have communication issues. So I will probably continue to drive, but at least we will be able to talk!

Pennsic was a lot of fun! As I told folks there - 6 months ago if you had asked me I would have said there was less than 5% chance we would make it at all. Because either for some reason he was still waiting for the transplant (as in, not gotten sick enough to get the transplant, but too sick to go), or he had gotten the transplant and they had put him on steroids and lowered his immune system too much (not to mention the steroids would have probably damaged his hips more). But no steroids and he is doing fairly well. The Memphis doctors even knew we were going “camping” (I don’t know if they realized we would be camping in tents, in close quarters, with port-o-johns.) and gave us their blessing. So I considered this year a complete “bonus!” even though we were only there 4 days. I tried very hard not to “fuss and worry” about everything.

I hope everyone who reads this is having a great summer!

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Sunday, Aug 17 2008, early morning.

Congratulations to Michael Phelps, Baltimore native who just earned his 8th gold medal this year! Yes, I have been watching the Olympics this week - especially the swimming. I am also impressed with Dana Torres who is 41 and still medaling at the Olympics.

Scott went to Houston this past week! He had to go to some meetings at Johnson Space Flight center. Unfortunately, the trip itself wore him out. Especially the trip back. Long walks through airports, long time sitting in a plane while it waited to get clearance to go to gate so no one was allowed to get up and stretch. He said as he slowly walked through the airport here in Baltimore, folks very rudely bustled around him and cut him off almost causing him to fall. (He did fall in Atlanta airport - he tripped over an empty wheelchair! Fortunately, the guy pushing offered to take him to his destination.) He also, learned the hard way that he needs to take his bed vibrating alarm clock with him - otherwise he has no way to wake up, and can sleep though meetings.

The girls are still in Pittsburgh area visiting their Aunt, Uncle, and 3 cousins. The cousins are raising many animals, including 2 horses, cats, guinea pigs, rabbits, ducks, and chickens! Everyone but my sister is heading east this afternoon to go to a cabin on the Susquahanna river to go tubing, swimming, etc. (My sister has to stay behind and take care of the animals - about 2 hours a day). Tomorrow evening we are going to go pick up the girls and bring them home. School starts in a week - and they need to have some time to get ready! Not to mention, I miss them and I want a little time with them before homework is an issue.

The Renaissance Festival starts next weekend. I think Shannon may be working there once a week - and rather than drive her back and forth every weekend, I am going to stay and work too! We shall see how that works out.

The next step in my bedroom re-decorations are about to start. I am having a friend come in and paint. (BTW- he is a good friend of mine, and recently became un-employed as a contractor due to a disagreement with his boss. He can paint, tile, build, etc. If anyone is interested in hiring him, contact me off-line and I will give you his name and number. ) After that is done, we will get all new flooring (carpet, hardwood, and tile). Then I get my bedroom back!!! Looking forward to having my own bed back.

We are still working on the Cochlear Implant for Scott. It has been very educational. One of our hurdles is to decide manufacturer. Because  the Cochlear Implants contain a magnet, MRI’s will be an issue. Right now we must decide on the least of several evils. I think the choices are: no implant, no MRI’s, very low resolution MRI’s (which are being phased out and are hard to find now - everyone else wants bigger and better), and having small surgery (with anesthesia ) to temporarily remove the magnet, have MRI, then another surgery to replace the magnet. The manufacturer are not much help since they do not want you to know the negatives about their product before you choose them.

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Monday,  September 8, 2008 (T1 + 2 years) (T2 + 5 months)

Unfortunately, Scott is back in the hospital this morning.  He woke up Sunday morning (yesterday) at 4am with fever and chills.  To make a long story short - we went to Hopkins ER, they have no idea why he is running a fever, but they decided to admit him to see if they can find out why.  We spent the next 9 hours watching movies in the ER waiting for them to find him a bed.  Then they started the fight over which department should take care of him.  Medical or transplant.  (why didn’t they have have this fight hours before?).  I felt like a ping pong ball.  But at least I felt ok and could watch the movies.  Scott felt bad (bad headache with fever) and there were no captions on the TV so he could not understand what was happening on the TV.  (Most of the time he slept anyway - with no pillow).

However, as of Saturday, Scott was doing great!  His blood work was still slowly improving, and his PT was helping by stretching stiff muscles so he could walk around more - which helped loosen and strengthen muscles even more.

My bedroom is closer to completion.  The room is painted and and has new floor.  We have moved most of the furniture back in, including the bed.   I will try to post pictures soon.  It is very “pink”.  The carpet is a medium blue (basically denim colored.  My theory - “everything goes with bluejeans”. )  I had the walls painted pink with white trim.  The other day I wore a pink shirt the same color as walls, blue jeans, and white sneakers - I matched my room!  Right now the pink is still overwhelming.  I need to put up curtains and pictures to break up the pink more - hopefully that will tone it down.  I was going to move even more stuff in yesterday - but I had to take someone to ER instead…

The girls and I are working once a week at the Maryland Renaissance Festival.  Originally it was going to be just Shannon helping a friend of ours sell pottery.  But I was dreading the drive back and forth drop off and pickup.  So I joked that I should get a job there just to afford the gas to a friend who sells stained glass - and she offered me a job!   When she said I could bring Erin (who would have been very disappointed if she had to stay home) I said yes.  We thought Erin would be sitting in the back reading - but she has made herself very useful also and is now considered a “booth monkey”.

The girls have started school (which is why we are only working once each weekend and not both days).  Shannon is taking a very heavy load.  Spanish, biology, pre-calculus, etc.  Erin has started middle school and is enjoying changing classes and having a locker.  She is playing trumpet in the band.  Homework has caused stress in the family already.  (I did not miss that over the summer!).

Gotta go get kids to school then on to hospital.  Will update later when we learn more.  Hopefully he will come home today.

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Monday,  September 8, 2008 (T1 + 2 years, 3 days) (T2 + 5 months, 7 days)

Scott updating:  When I look out the window I see a beautiful 120 year old dome, so I don’t think I’m in Columbia.  Add to that about a dozen different doctors, tests at 2:30 in the morning, and people waking you up to take your temperature, and I think I know where I am.  Yep, this is Johns Hopkins all right.  If I have to be here, I’m glad that I’m at least on the 7th floor transplant wing.  I still know about a third of the nurses here, and some of the doctors stop in just to say Hi.

Unfortunately, they still haven’t found any cause for the fever, and they love a puzzle almost as much as Martha does.  The liver docs won the tug-of-war for being in charge, and they want to ‘observe’ me through Wednesday.  This is starting to feel SO familiar.  The fever broke Sunday night, and my temp has been normal all day.  Yesterday was not a lot of fun, though.  After spending an eternity feverish in an uncomfortable bed in the ER, they did a spinal tap at 11:30 PM, followed by ultrasound at 2:30 AM ( I slept through it).  No tests today, besides blood draws.  I am still really sore from the spinal tap (they had to poke twice to get good fluid flow).  At least I’ve got my work laptop here, and I can connect to the internet, so I probably won’t even use any sick leave.

On Saturday I found that I had saved up enough allowance to get a new 70-300mm zoom lens for my camera.  Because of the size of the image sensor, that’s equivalent to a 600mm lens on a 35mm camera.  Just the thing to go bird hunting with my uncle this winter.  In December, perhaps as many as a hundred Bald Eagles congregate near the spillway of the Conowingo Dam for a couple month feast.  The pictures that folks have put up on the web each winter are spectacular, and it’s right there practically in our back yard (my Dad’s cabin is just ten miles north of the dam).  Hmmm, wonder if I could afford that 2X converter by then…..  Smile, pretty birdie!

That’s all for now.  Keep smiling, and I’ll do the same.

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Tuesday, Sept 08, 2008 evening

Scott is still incarcerated at Hopkins.  Essentially nothing happened.   We are waiting for results of blood cultures.  And we waited.  And we waited.  Tomorrow morning he has an appointment to find out more about Cochlear Implants anyway, which we are going to go to.  Hopefully he will be released on his own reconnaissance tomorrow afternoon.

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Wednesday, Sept 10 2008

Scott is home from hospital.  They never figured out what caused the fever.  It came on suddenly, lasted about 24 hours - then went away as mysteriously as it appeared.  All the tests came back negative.  So they let me go this afternoon.  Hopefully, we have seen the last of the fever.  Life goes on.

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September 23, 2008 (T1 + 2 years, 18 days) (T2 + 5 months, 22 days)

Scott updating: I’ve been home for two weeks, and have regained most of the ground that I lost physically during my mini-vacation in a hospital bed.  Even though I tried to get up and walk around as much as I could there, my muscles and joints all stiffened up while I was there.  The worst part is that I lost two weeks of the improvements I had been getting from physical therapy.

I do still feel like there’s something not completely right.  I spend a lot of time sleeping, but don’t seem to get much rest.  Part of that is from muscle pains in my hips, sides, and shoulders, and part is either a cold or this year’s record pollen counts catching up with me.  At least the fever never came back.

Well, the master bedroom part of our renovation is about finished, so we can start moving back into it.  I’ve been sleeping upstairs lately, but still have all my clothes downstairs until the last of the touch-ups are done.  I think next up is either the master bathroom floor or the front walkway step.  Martha has been designing what she wants for a built-in storage/ dressing area, which ought to be very useful as well.  Another advantage of the bedroom getting done is that I can start to move my work stuff back upstairs, freeing up the craft room for actual crafts (go figure).  I’ve monopolized it as my ‘nest’ for long enough.

As far as I know, we’re still on track for getting a cochlear implant in October.  The brand I have chosen is Advanced Bionics, since they seem to have the most advanced internal portion.  My thinking is that the externals are going to be upgraded from time to time with new software, microphones, and processing technology, but the internal part is (hopefully) going to be there for a very long time).  AB seems to be the most expandable for future technologies.  It comes with two processors, so I’m going to get one that fits over the ear, and one that goes into a pocket, hoping to get the advantages of both when I need them (most people apparently get two of the same).  If all goes well, then by Christmas or so I should have reasonably good ‘hearing’ in my left ear.

Very soon I’m going to start putting some photos up on the web (probably on Flickr), so I’ll post the address when I do.  Keep smiling, and I’ll do the same.

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Saturday, Sept 27  (T1 + 2 years) (T2 + almost 6 months)

Big news - hopefully good news!   The surgery for the Cochlear Implant has be scheduled!  Monday, October 13.  Normally this is an outpatient procedure - but since he is more fragile than most patients they may keep him overnight for observation.  (Graphic information to follow - skip if you are squeamish. )  In this part they will put into the internal part is put into the head and ear.  A small hole (Scott says: more like a cavern!) is drilled out of his skull and the casing that holds the magnet will be put just under the skin into the cavity.  Then a small wire leading from casing is threaded down into the ear and then into the cochlea (the inner part of the ear that looks like a spiral sea shell).  The cochlea normally contains the small hairs that translate the noise vibrations into electrical impulse that can be interpreted by the brain as various sounds, but all of Scot’s hair cells were killed off by the antibiotics (that saved his life).   The skin is then placed back over the skull and casing/magnet, and allowed to heal for about one month.

The next step (sometime mid-November) the external part called the processor can be placed behind the ear with a cable leading to the “headpiece” that is placed over the internal part and is held in place by the magnet.  The processor contains microphone, and a small computer that translates the sound into electrical impulses that it sends to the internal part.   The signals get sent through a transmitter (through his skin) to the implant.  The processor can be easily removed for sleeping, showers, swimming, things he does not want to hear such as kids fighting, etc.    It also contains a battery that must be recharged frequently.  (He will have more than one battery so one can be used while the other is charging.)

Unfortunately it does not work well from day one.  It must be tweaked and adjusted frequently for the first few months.  And his brain must re-learn to interpret the impulses it is receiving into recognizable sounds, because the electrical impulses are not the same as the ones sent to him by his ears, nor will they have as much variety as he was used to.  (ears are actually amazingly good at what they do!)  Fortunately, since he has been hearing most of his life, this process will not be as hard as it would be for someone who never did hear well.  Plus since he lip reads some, he can re-learn more quickly.  He will never hear all the subtle variation in music - but he will enjoy music he enjoyed before because his mind will fill in all the details his “ears” are missing!

The brand we are going with is called Advanced Bionics (made in America!) and if you want more details, you can go to their website learn how ears and cochlear implants work.

Anyway, the girls and I have been working at the Maryland Renaissance Festival every Saturday.  And having lots of fun.  Unfortunately our friends who are merchants are not selling as well they did in other years probably due to the poor economy.   And the weather has not been very nice, either.  It has rained a lot several of the weekends (fall is normally very nice in Maryland), which keeps patrons away.  Today a “nor’eastern” came through and dumped almost 2 inches of rain on us.  The festival was very muddy and wet.  Because we are not busy - I end up wondering around more - and buying stuff I normally don’t have time to look at.  Oops.  Today we got a really cool cloak for Erin - that she is hoping to wear to school.

I took these pictures so I can show off their outfits.  The good news is we have outfits for Halloween!

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Saturday, Oct 4, 2008  (T1 + 2 years) (T2 +  just over 6 months (Implant - 9 days)

Scott Updating:  The bad news: I haven’t felt much like working on the website lately, or much of anything else.  For some reason, I’ve been extremely tired, with headaches and lately nausea.  Either the problem or the resultant lack of ability to do practically anything has caused some of the worst depression I’ve ever experienced.

The good news:My regular blood test this week showed that both sodium and chlorine are low, and the doctors at Memphis have asked me to eat more salt.  In fact, my sodium level was described as “critical” in the results; as bad as I’ve been, I haven’t had many of my results labeled critical.  A deficiency of salt is called hyponatremia.  From a health-related website: “Symptoms of moderate hyponatremia include tiredness, disorientation, headache, muscle cramps, and nausea.”  Gee, sound familiar?  I was told by doctors earlier to limit my salt, in order to prevent the ascites buildup of fluid in my abdomen, but apparently that isn’t the case any more. So apparently I was doing too well at limiting my salt intake!  So, other than this week, when I’ll eat a little extra salt, it looks like I don’t need to be as strict about salt intake.  YEAH!!  I am so glad to have found a cause (and remedy for this).

Otherwise, not much has been happening.  As I said, I haven’t felt like doing anything, so I didn’t.  Martha and the girls will be working at the Renaissance Festival today plus two more weeks.  Hopefully I’ll feel well enough to join them for the last weekend, when my favorite band will be playing there.  Yeah, I know, the deaf guy is going to a concert?  Actually, it’s easier to take pictures when I don’t get distracted by the music.  That said, I’m looking forward to hearing them soon.  Pictures from last year are at:  http://www.flickr.com/photos/30683917@N07/sets/72157607540815531/

Plans for the cochlear implant are proceeding, and today I got an e-mail with the activation dates in it.  Everybody needs to realize that the activation process is kind of slow, so I won’t have reasonably good hearing until about the end of the year.  Be patient, though, since it does seem like things will eventually work out.  I’ll be ahead of the curve, since I’ve only been deaf for about 18 months, and still remember pretty well how to hear.  Still, the best most people get is 90% comprehension; I’m hoping for at least 70%.

And congratulations to Lucinda and Andy.  My cousin is getting married in Denver today.  That’s about it for now.  Keep smiling, and I’ll do the same.

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Saturday, Sept 27  (T1 + 2 years) (T2 + almost 6 months)

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