Early Sunday morning Barbara's brother Tommy passed away. His bladder cancer had gone to the bones, and he needed constant pain medicine. He was at home when he died. Barbara is taking it hard. She and Tommy had a special fondness, and she misses him severely. With Barbara unable to travel, she will miss the funeral on Wednesday. It is especially hard on her with Jaedon around. He doesn't understand the concept of grief or dying, and he asks questions like, "Aren't you over his death yet?" It's not malicious - he is just so aggressively intelligent that he can't "leave well enough alone."
Monday, Barbara had her Groshong catheter removed. The procedure went well, and the whole catheter came out (the last one broke off during removal). In the middle of the procedure, I answered her cell phone. It was Jaedon's school reporting that he claims to be having difficulty breathing. He is having allergy problems, but the breathing difficulty is probably an exaggeration for attention. On the way home from the catheter removal we stopped by the school and talked with him. He seemed to be fine, and we sent him back to class.
Tuesday, Barbara took Jaedon to the pediatrician for a first visit. The doctor agreed that the cough and congestion was likely an allergy, intensified by the dry air these last two weeks. He approved out use of a humidifier in Jaedon's room at night, and suggested that we try Claritin children's allergy medicine.
Monday night, Sherri called and asked if one of us could follow her on Tuesday so that she could leave her car to get repaired. Barbara took her to the shop in the morning, and, unfortunately, had to wait for an extra hour. Since Barbara needed to take Jaedon to the doctor in the afternoon, she asked Sherri to inquire about a possible rental car to return herself to the repair garage in the afternoon. "YIKES," as Barbara says. At least Barbara got to have a brief chat with Sherri's cousin Brian (a wonderful man) at the dealership. Brian was very generous to Sherri regarding the needed repairs.
Wednesday, Barbara was hit with a bowel impaction. The pain medicines slow down the action of the intestines, and it reached a critical point. Barbara suffered for over five hours. I called Betty, our friend in the pharmacy at Norris, and she suggested an over-the-counter treatment, which finally worked. It was a horrible ordeal. In the middle of this, I got another call from Jaedon's school. This time it was a nosebleed, and he needed a shirt to replace the one covered with blood. I delivered the shirt and returned to help Barbara.
Today, I will be giving a talk to Jaedon's class on rainbows, spectra, and infrared. I have posters and handouts from our Spitzer Spacecraft, and I know that the kids will be entertained. I wish that I had a little more time to focus on the talk.
Tomorrow, I leave for Catalina to help with the 50-mile run. Barbara has decided to stay home, since it would be difficult to take Jaedon and to keep him under control in Avalon. I will be busy during the race, and would be unable to help. Hopefully, Barbara will be OK here at home.
From Barbara:
We still have not resolved the pain meds. I will have to do what I can on Friday to see if I can push Blue Cross to cover the meds. Also, I am supposed to take Jaedon to get a mitt and cleats before the baseball tryouts this Saturday. It's not looking promising...
Jaedon does not like doing homework and spends a lot of energy resisting getting the work done.
These past few weeks have been extremely difficult ... Tommy's death, my pain battles, endless hours required to parent Jaedon, many, many calls to the school, to Jason, our lawyer ... and we have yet to get any formal papers from his father and NO $$$ either. We are exhausted and I'm VERY, VERY unhappy...
My talk to Jaedon's second grade class went very well. The question and answer part was especially enjoyable. They were quite well informed - they knew the colors of the rainbow, including Indigo (they even corrected my misspelling of Indigo). They knew the name of our galaxy (Milky Way). Some good questions were:
Barbara was able to resolve the problem with obtaining the pain meds. It took an extra trip to the pharmacy near Norris.
I went to Catalina for the weekend and did my usual job compiling the race splits and finish times for the Avalon 50 Mile Benefit Run. Michelle and Brent, and our nephew Scott all did well. Michelle and Brent completed the race in 10:35, and Scott finished in 8:48.
Shortly after the race, Scott returned to the mainland to stay overnight with Barbara and Jaedon. They were joined by Sherri, who did her usual great job of feeding the family.
Monday was a holiday, and Jaedon spent some time with Kanan. Michelle took them to the park and Jaedon got filthy playing in the dirt and climbing trees (... and we wouldn't have it any other way!). Michelle reports that Jaedon is getting along much better with Kanan - it warms our hearts to see the improvement in his behavior. We still have a long way to go, but we clearly are making progress.
If you assumed that my silence is due to us being "in over our heads", you would be correct. Jaedon is proving to be a difficult challenge for us. Unless he is doing what he wants to do, he resorts to arguing, pleading, misbehaving, and generally making life difficult. He expects constant attention when he is at home. He has tons of toys, his own educational computer, books, and yard toys, but he wants to hang onto us for his continuous entertainment.
He had a substitute teacher at school one day, and she quickly sent him to the principal's office for misbehaving. We now realize how tolerant his regular teacher is. The principal put him on a contract in which his teacher rates his behavior during each of four periods during the day. These reports are sent home to us. Barbara and I wrote up a contract and all three of us signed it; if Jaedon brings home good behavior reports from school, and cooperates at home for two weeks, then we will take him to Lego Land. Unfortunately, his behavior started to deteriorate within a day.
He can be an angel, but Barbara pointed out that he is good only when he is getting his way. He and I have special time on weekend mornings when he joins me in bed and we share thoughts and talk about his special interests. The time is perfect, but as soon as we go downstairs, he starts demanding breakfast, insisting on using our computers (which we must monitor), and expecting us to play with him. We maintain hope that several months of tough love will produce tolerable behavior, but we could possibly fail at this. When we took over Jaedon's care, his father insisted that the arrangement be reevaluated at the end of the school year. By then, we should know if we can continue.
Last week Barbara noticed pain in her upper right arm, just like the pain from the blood clot that she had four years ago. Taline doubted that it was a blood clot, but grudgingly ordered an ultrasound examination. The ultrasound determined that she did indeed have a small blood clot. She is now taking daily injections of Lovenox to thin the blood. I give the injections, but one of my drugs makes my hands tremble and the jiggling can make it painful for Barbara. One evening, Michelle did the duty, but it still hurt. Thankfully, the clot appears to be shrinking and hurting less. The shots will continue for a month.
Barbara continues to have pain episodes every day. The Fentora takes almost an hour to ease the pain. Meanwhile, the pain spreads from the right side of her abdomen to her back, to her groin, and to the left side. The episodes happen most frequently after eating.
On Friday, we received a call from the principal of Jaedon's school. Jaedon had been exchanging lewd gestures with two classmates. He was being disrespectful of the principal, and she asked Barbara to take him home. When Barbara arrived, Jaedon was yelling at the principal, and screamed as Barbara took him down the hallway and out to the car. At home we had a long talk, and he spent the rest of the afternoon in his room. Nothing we do seems to have any effect: when his detention was over he asked if we would play with him, as if nothing had happened.
Barbara has been reading books on ADHD, and much of Jaedon's behavior matches the examples in the book, but we don't want to pin any label on him without a professional diagnosis. We are hesitant to embark on a long-term counseling regime, when we already doubt that we can continue with him after the end of the school year.
At other times, he is delightful. Today, I was with him in the back yard, and he discovered that he could climb one of our trees. He was ecstatic. As we went back into the house, he said, "Papa, I love our back yard. I love our home. And I love living here." I guess that psychologists would say that I am receiving intermittent reinforcement.
Little League baseball practices have begun. Jaedon is doing quite well, and he enjoys playing. He insisted on staying long after everyone else left, so that he and I could continue practicing catching fly balls. Still, I have to watch his behavior: he delays following instructions, and when his coach was helping him with his throwing form, he said, "I already know that!" My big goal is to get him to respect his coach and the other players. We will see.
Yesterday, Barbara discovered a hard lump in a vein in her neck. We are worried that as the Lovenox dissolves the clot in her arm, a piece of the clot might have broken loose and traveled to the neck. We hate to continue to raise alarms, but we have a hard time knowing what is serious and what can be ignored.
Meanwhile, Barbara continues to have pain attacks every day - sometimes two or three times a day. I keep urging her to see Dr. Selby, her surgeon. If the pain comes from adhesions from the surgery, he would be the best one to discuss diagnosis and possible treatment.
Tomorrow is a holiday, and we have Jaedon with us all day. It's turning into a long weekend, beginning mid-day Friday when he was sent home from school.
Life is not very pleasant, right now. If Jaedon were a normal, rambunctious child, and we were normal young adults, things would be difficult enough. But with Jaedon being one of the worst behaving kids in the school, earning repeated visits to the principal's office, and with Barbara fighting her disease and me just trying to hold things together without cracking up, things get very stressful. We dream of an escape in the motorhome. Curtis and Lena have graciously offered to take care of Jaedon and give us a short break. But when we try to plan something like that, his school schedule and his baseball schedules get in the way. Just sending him to play in the back yard is fraught with peril: he enlisted the aid of the neighbor boys to carry our firewood and pile it up on top of the shrubbery, destroying one of the nicest areas in the yard. He throws rocks in the swimming pool, tears the moss out of the fountain, and rips all the buds off of the plants. Each weekend we must watch him continuously, to keep him from destroying things.
We have a great bunch of neighbor kids, but he is offending them one by one. Last weekend, some kids down the street told him to go away because he was "too rude" to them.
I apologize for the depressing words. But I want to keep our friends up to date on the family circus. And explain my infrequent posts - I have my hands full.
Barbara finally called the office of Dr. Selby, one of her surgeons. They refused to make an appointment, saying that she needs to be referred by her primary care physician. She really doesn't have a regular doctor. Dr. Lenz referred her in the past, but that was for cancer surgery. Lenz is a cancer doctor, and since this pain doesn't appear to be from cancer, he isn't the one to deal with the problem. I wasn't looking for surgery, but I was hoping that Selby could tell us about post-surgical pain, including adhesions, and that perhaps he could order testing (like MRI or ultrasound) to determine the source of the pain.
On a positive note, Jaedon is doing well at baseball. His dad, Jason, sent a baseball mitt that Jason used as a kid. The mitt is big and flexible, and Jaedon is finding his catching much improved. It's fun to see the kids get excited - Jaedon was elated when he made two outs as first baseman.
Sandra is coming here from Arizona for the weekend. She hasn't seen her son since Christmas. She and Barbara will pick him up at school today and take him to his baseball practice. Tomorrow she plans to take him to the library to do some research for his report on electric eels. Jaedon is very excited about her visit.
Sandra stayed with us for the weekend. She enjoyed being with Jaedon at his baseball practice and his first game. They had lots of time together. It's clear that there is a strong bond between mother and son. It's hard to know what would be the best long-term solution. Sandra still has emotional issues, but Jaedon really needs his mom. There will be big decisions to be made in June.
Meanwhile, Barbara is making an appointment with a psychologist to get an evaluation.
I've put a bunch of photos of Jaedon here.
Jaedon made a video wiggling his tooth. It drives Sherri nuts, but I'll share it with everyone. Beware; it's a 20 MB download. Click here
Kanan ran his first triathlon last Saturday. I couldn't miss this important event, so Barbara took Jaedon to his baseball game. Kanan was great. He was so enthusiastic and so excited. I loved every minute of it. Here are some photos that I took of his accomplishment.
Barbara reports that Jaedon was on his usual bad behavior at his game. That attitude continues every day. Thursday, he received bad reports at school, at his after school program, and he was horrible at baseball practice. He yelled at the coach and at other players, constantly complaining. Today, before his baseball game, he started a kicking fight with one of his teammates. The coach had to separate them, and sent them to talk with the father and grandfather. After getting them calmed down, we brought them together to say, "I'm sorry," but Jaedon refused and said that he didn't want to play on the team if the other boy continued. Coach advised Jaedon that the other boy was ready to make up, and if Jaedon didn't want to cooperate, then he would have to leave the team. Now I realize why he failed at soccer and Tai Kwan Do in Colorado.
Barbara had an appointment with Pain Management yesterday (Friday). Dr. Nemat says, "You're problem right now is not the cancer. It's the grandson." He feels that the recent increase in pain episodes is due to the added stress. I agree. Barbara is near a breakdown. I try to relieve her by taking over: last Friday he had a half day of school, and I walked to his school so that we could walk home together. We went to the nearby park, and he played from noon until five pm and then we walked home. But that didn't help; he immediately wanted continuous attention when he got home.
Today, Barbara received a statement from Anthem Blue Cross retroactively denying payment for treatments in 2007 totaling $8000. While Barbara was researching her records to see what they are talking about, Jaedon went up and down our street and collected everyone's newspapers and put them in our back yard. It never ends.
We are accepting Lena and Curtis' offer to take Jaedon for two days. We plan to drop him off at their place in Escondido, and proceed to South Carlsbad State Beach in the motorhome for two blessed nights of peace. We are very appreciative of their generous offer.
Thanks to Lena and Curtis, we had a glorious weekend. They had offered to keep Jaedon for the weekend to give us a little relief, and we eagerly accepted. Jaedon got along with their son Antonio quite well. Curtis took them to the nearby San Diego Wild Animal Park, and took a few photos there:
Curtis also included some shots of himself at work:Meanwhile, Barbara and I took the motorhome to South Carlsbad State Beach, where we camped on the bluff looking down on the beach and the Pacific Ocean. We didn't really do anything but read, walk, watch TV, and eat Barbara's great food. We never left the campground. We finally got caught up on our sleep - we usually get up at 6:30 AM to prepare Jaedon for school. This was truly a wonderful weekend. We are so grateful to Lena and Curtis for this respite.
Barbara is having emotional issues over Jaedon. I am trying to relieve her a little: yesterday I took Jaedon to Travel Town (a collection of old railroad engines and rolling stock), and then to McDonalds where he played for two hours on their play structure. He is good at meeting new friends and playing with them, although they are usually younger and he can dominate them - no disputes since he is the "ruler".
Barbara is having more frequent pain attacks - two or three every day. We think that the turmoil and stress over Jaedon may be contributing. Today she called pain management for an early refill on the Fentora pain medicine. I will go pick it up tomorrow.
Jaedon is on his Spring break this week. Sandra arrived today to spend a few days. She and Jaedon have been playing badminton, and they are now playing medieval soldiers with his toys on the floor of his room. He is ecstatic to be with his mom. But he is showing her some of the bad behavior that has plagued us. She is pretty surprised, but she is handling it fairly well, so far. Let's see what the next days bring. At least she is giving us some relief by keeping him occupied; he usually nags us constantly to attend to him.
Last week Barbara took Jaedon for two visits to the psychiatrist. The doctor is narrowing his diagnosis, and he prescribed a medication to soften Jaedon's explosive behavior. To our surprise, we saw a dramatic improvement, with peaceful moments like this. He started the drug on Thursday, and by Saturday at his baseball game, he was well behaved. The improvement was noted by his coach, who awarded Jaedon the "game ball" for his performance. Jaedon was ecstatic. He couldn't wait to surprise me (I was off on a Glendale historic bike ride). I was duly impressed. Jaedon carried the ball everywhere for the entire weekend. Click here for photos from the game.
Jaedon's medicine started with a half dose, with an increase to the full dose today. We noticed some of the old behavior coming back during the week, and we suspect that he will need the full dose for continued good behavior. The only side effect that we noticed is that he is supercharged with energy. He can't sit still. The doctor had warned us that he might become hyper, or he might get depressed. The hyper activity can be treated with another drug, although we are not excited about him needing too many drugs.
Sandra was with us most of the week. Here she is with Jaedon, and here she is with Barbara. We spent some time at the Health and Fitness Expo, where Jaedon climbed the wall - he made it!
Sandra returned to Arizona on Sunday. Jaedon immediately missed her. He has taken to curling up in my lap and crying over his longing for her. It melts my heart, and I try to assure him that he will be phoning her often, and that we will schedule more visits. Indeed, she will be coming to us again on May 13. The visit has an extra purpose: when at Jaedon's appointment, Sandra liked the psychiatrist so well that she will be seeing him for herself. We have hopes that he can help her stabilize her life.
Barbara's condition continues as before. She has frequent pain attacks, often two or three each day. Her biggest problem right now is the stress and depression caused by the difficulties with Jaedon. I hope that with Jaedon on meds, things will get better for Barbara.
Quite a lot has happened in the last two weeks. The medication has stopped Jaedon's explosions. He is still difficult and has no respect for anyone, but he no longer has violent episodes. We had a meeting with his school principal, the school psychologist, and his teacher, and they all agreed that his behavior was considerably improved. They were laying plans for his transition into third grade. We are very impressed with the school's desire to work through his problems and keep him on track with the rest of the students. The principal also mentioned that there are great programs (free) available to parents of troubled children, but the parents must have clear legal authority to agree to such help. Long ago we gave up trying to get Jaedon's father to execute the proper legal agreements.
We saw Jaedon's psychiatrist, and he was very happy to hear the results of the medication. Given the behavior change, he was able to make a definite diagnosis of a specific mood disorder. It's a relief to know exactly what is wrong.
Jaedon's Little League team (the Angels) went to a real Angels baseball game. It's not clear that they saw much of the game. Much of their attention was devoted to food and clowning around, but everyone had a good time.
The family gathered for my birthday. Everyone was there except Sandra, and we will see her next week. We went swimming, and Michelle and Sherry cooked my favorite meal: chicken tostadas. Barbara made her special chocolate cheesecake - mmm!
Jaedon was honored by his classmates by being elected "Student of the Month." Supposedly, the criteria was "loyalty", which makes us suspicious of the process, but here he is being recognized. The same day was "Twin Day" and Jaedon selected Christian as his twin. They dressed up with similar clothes. Here is Mrs. Lohuaru, Jaedon's wonderful teacher.
Saturday, I took Jaedon on a geocache hike. People hide "caches": little waterproof containers filled with trinkets, and then publish their coordinates on a web site. Searchers (like us) use a GPS to get near the cache, and then root around through the bushes to find the cache. This was paradise for Jaedon - trinkets are a major part of his life. It was sheer joy to trade some of his old trinkets for some different ones from the caches.
Sunday, I took Jaedon to the JPL open house. Again, he was more interested in food, but I managed to shepherd him to some of the exhibits, including a clean room, and a kid's activity where a model of the Mars rover drove over Jaedon and the other kids (that's Jaedon in orange).
Barbara's condition is unchanged, with frequent pain attacks. We see Pain Management on Monday. I had a long talk with my internist, with whom I am very happy. He agreed to take Barbara as one of his patients, even though his practice is full. I think that Barbara needs someone looking after the "whole" person, rather than just the cancer and the pain issues. My big hope is that we might find the source of the pain, even if it is not treatable.
Curtis and Lena have agreed once again to take Jaedon for a weekend. We are sincerely grateful for the relief. We will hide out somewhere in the motorhome, and just vegetate for a couple of days. It will be great fun for Jaedon too, as he can play with their son Antonio.
Thank heavens for Curtis and Lena. They had Jaedon stay with them and Antonio for the weekend, while Barbara and I kicked back in a nearby RV park. Here is Barbara serving up a special salmon dish for our evening meal. The next morning we celebrated Mothers' Day at breakfast with wine, surrounded by flowers from Michelle and Brent, and cards from Jessie and Cherry Aguilar.
Meanwhile, Jaedon and Antonio were having a great time, riding the hippo, and clowning around at Wild Animal Park. On Sunday, they went to an outing in the park with some of Curtis and Lena's friends. It was warm, but they had a great time playing with patient grownups.
The two days were very stress relieving, and helped us to endure the following week, which was very busy. Monday, I had a doctor's appointment, and I went with Barbara to her Pain Management appointment in the afternoon. He made no changes to her pain medicine. I only wish that it was more effective in reducing her agonizing pain.
Monday afternoon, I took Jaedon to his baseball practice. As usual, he was difficult. He refused to throw the ball to first base, instead rolling the ball across the field. He refused to play second base, until another boy took over the position, at which time Jaedon argued that he should be allowed to play second base. He is continually testing the patience of all those around him.
Tuesday, I had two medical appointments - I will be having a minor surgery and another heart ablation in the coming weeks. On Wednesday, Sandra arrived. She is staying with us through Sunday. The main purpose of her visit is to attend Jaedon's sessions with his therapist and his psychiatrist, and have a session for herself with the psychiatrist.
We all shared Jessie's 15th birthday celebration at The Cheesecake Factory. It was fun - having most of the family together; only Sherri and Lexi were missing.
Today was Jaedon's baseball game. He behaved fairly well, except for one altercation: he raced another boy to retrieve the ball, and then, when the other boy got there first, Jaedon kicked his hand away from the ball, injuring the boy enough that he had to sit out the rest of the inning. What next?
Jaedon and I have some fun times. He started teasing me about my big belly, and he decided to invent a contraption to help me take my belly for a stroll. It's a one-wheeled stroller, secured to my shoulders. Here he is working hard on the design. Then he gets tickled with his joke. And here is the finished product, belly button and all.
We spent the holiday weekend at the Great Western Bicycle Rally in Paso Robles. Barbara and I have attended the rally for over 20 years, and in recent years we have shared the fun with our grandkids Kanan and Jessie. This year we were there with Jaedon, and it was, well, different. Jaedon is always a handful, and at the rally it was more so. Living on top of one another in the motorhome made things more intense. Barbara was reaching the end of her patience, and I tried to relieve her stress by taking Jaedon away for a while. Each day he and I would ride to McDonalds for breakfast and "alone time". One day I took him on a ride around the city. He's not very careful around cars, so it was a challenge to keep him safe, but he really enjoyed the ride.
On Sunday, we went to Star Farms. The owner invites the rally participants to spend the day at his private lake, complete with a sand beach, palm trees, kayaks, a dock with a log rolling challenge, and a trampoline. Jaedon amazed us by befriending the two most attractive teenage girls on the beach and taking them for a kayak ride. Next we saw them sunning together on a float in the lake. Give Jaedon a few years and he will really be a ladies' man.
With all of the stress, Barbara had many pain attacks. She and Jaedon drove up separately, since I wanted to claim our prized camping spot, and Jaedon wouldn't be out of school until Friday afternoon. The drive was difficult for her, with Jaedon pestering her the whole way - and the DVD player had a dead battery. Barbara did enjoy seeing some of our old friends: Cindi Steiger (a RAAM winner and fellow race official), Ralph and Laverne Boethling who ran the rally for thirty years, Sonia Smith, and others. Barbara's drive home was easier, since I took Jaedon with me in the motorhome - and I made sure that the DVD player was fully charged! We made a long stop half way home, and Barbara was able to relax in the motorhome.
Barbara's pain attacks are more frequent now, four or five attacks every day. It has us concerned. After Jaedon finishes school in three weeks, and we find out what determination the court makes as to his placement, we will turn our full attention to Barbara's issues. I want to have my doctor do a complete physical and order any tests that he thinks might reveal what is causing her pain.
In the meantime, it's business as usual. Today, I take Jaedon to baseball practice, and Saturday is his last game, followed by a team party in the park. Tomorrow, I have a minor surgery on a lipoma on my head. The major upcoming events are the custody trial on June 11, and Jaedon's last day of school on June 19. After that, we plan to go support Barbara's nephew Scott who will be running the Western States 100 Mile Endurance Run in northern California.
The minor surgery went well, but the bandage makes it look more like a lobotomy.
Saturday was a busy day. We took Jaedon for psychological testing, which should help determine if he has ADHD.
Later in the morning was Jaedon's last baseball game, followed by a party in the park. Here, Jaedon receives his trophy. The team gets together for a final photo, before the water fight started. Everyone gets wet. Coach James receives an attack, and everybody reloads.
Today Jaedon and I went on another geocache hike:
Jaedon has been a handful for the last two weeks. Barbara kept him busy one day with a construction project, the result of which was Jaedon, the pirate.
Yesterday, he refrained from waking me up before dawn, thank goodness. For once, he kept himself busy building a special flying contraption from Lego's. Here is the builder, and here is his creation and later, with embellishment.
Jaedon continues to have both good days and bad days. At his after school program, Barbara found him yelling at the teacher. The teacher explained that she tries to cut him some extra slack, given his difficult background, but sometimes he goes beyond her ability to control him.
It's not unusual for me to come home and find Barbara crying over the difficulties with Jaedon. This child is making her life very trying. I feel that many of her pain attacks are triggered by the stress over Jaedon.
This Friday is the last day of school, and our last day of taking care of him. Everything was set up for me to take him to Arizona to live with his mother Sandra. But, at the last minute, his father Jason is taking legal steps to be difficult. We can't understand his motive, since he has made it clear that he can't care for Jaedon. Perhaps, he is trying to make a case for less child support. It's pretty provoking. Since Sandra has no attorney, it's hard to stifle all of the legal garbage coming from Jason's attorney.
"Today is the first day of the rest of our lives." Sandra has departed with Jaedon for Arizona. After several skirmishes by Jason, the court has finally made the important decision: Jaedon is to reside with his mother. Jason had made submittals to the court looking like he opposed the custody, but the court finally recognized that his only issue was that he did not want to pay child support. The court ordered that the mediation report be approved (providing physical custody to the mother), and a hearing was scheduled for July 13 to determine child support, including child support that Sandra owes to Jason for the time when Jaedon lived there.
We have mixed feelings. We wanted to improve Jaedon's life, and we showered him with love and affection, and provided him with lots of fun activities. But his mental illness was unwavering. I think that one of our most important achievements was an accurate diagnosis by a highly regarded psychiatrist. We will help Sandra follow through with his therapy, even though it will require some traveling from Arizona, and some stiff medical bills (that are not covered by insurance). We hope for the best, but we have learned that successes may be limited.
Here are some photos of Jaedon's last day:
The past two weeks have been busy. For starters, we saw Dr Lenz on Monday. He reported that Barbara's cat scan was good. That's not exactly what Barbara interprets from the written report - there are several tumors that have grown, but they don't think that they are cancer. Her CA19-9 has gone up from 51 (in March) to 75, quite a jump. Lenz chooses not to comment on the CA19-9 unless it is going down. We're not trying to be pessimistic, just realistic. Barbara is in contact with several hundred cholangio patients on various internet meeting spots, and the only person who had lived longer since diagnosis has now died. This leaves Barbara as the longest living survivor.
Tuesday, I took Barbara to my retina specialist. Both my brother and I have had trouble with retina tears, so I am well acquainted with Dr. Sheffer, an excellent ophthalmologist. During the weekend Barbara noticed a big "floater" in her eye, and I rushed to get her an appointment. Dr. Sheffer found that she had only normal, age-related, retinal deterioration. She would just have to live with the "floater". He reassured us that it was wise to bring her in, and he wants to see her again in two months to make sure that the eye is stable.
Thursday, we drove to Squaw Valley, near Lake Tahoe, for the Western States 100 Mile Endurance Run. Barbara's nephew Scott ran the race. On Friday we parked the motorhome in the ski area parking lot, adjacent to the race start. That made it convenient to get up and watch the 5 am start. We met up with Barbara's brother Jim (Scott's uncle) and Michelle and Brent, who were all crewing for Scott. After seeing Scott depart in the morning, we drove across the Sierras to Foresthill, the race aid station at 62 miles. We listened on ham radio to the race reports to keep track of Scott, while Michelle, Brent, and Jim met him at various checkpoints. The trail into Duncan Canyon at mile 24 was in bad condition from a recent forest fire, and runners were falling frequently. Scott tripped and caught his fall, but tweaked his knee. The knee became painful, slowing his progress. We could see the pace dropping from the ham radio reports. Soon he found that he couldn't run downhill or uphill - only on the flats. He got worse, and started worrying about permanent damage, and also about being disabled just before his upcoming deployment to Iraq (he's a Major in the U.S. Army). So, at Michigan Hill, mile 56, he withdrew from the race. Michelle and Brent were there and drove him to meet us at Foresthill. We felt sad for him, but we were glad to have been a part of his effort. Click here for photos.
We arrived home to find that our three rat traps in the basement had been sprung, but the rats got away. I spent the next three days tending the traps and caught two disgusting rats. We found another rat had made a nest in our pool heater. It's a constant battle.
This Wednesday, I had cardiac ablation for the third time. Poor Barbara had a pain attack when she was trying to pick me up from the hospital. The guard had helped her into a waiting room and my nurse was wheeling me around trying to find her. When we hooked up, a "Mexican Standoff" developed: hospital rules say that I can't be taken to a car unless it's being driver by a capable adult. So they wouldn't take me to get the car and drive back to pick up Barbara. Barbara couldn't move and certainly couldn't drive. We asked to be left alone until her pain subsided, but that was not allowed - the nurse cannot leave me until I am placed into a car. Finally they relented and put Barbara into the wheelchair, and let me walk out the door, retrieve the car from the parking lot, and drive around to the discharge area to pick up Barbara. The nurse forgot to lock the wheels on the wheelchair, and it rolled into my car with a crash. "Never mind, I just want out of here." I drove around the corner and parked, while Barbara recovered and I "decompressed".
When we arrived home, we found that the gas service had been shut off. The Gas Co. is replacing lines on our street and we weren't home for them to relight our service. So we had to do without hot water for a day. Just another of life's perturbations.
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