Thank you to my Visiting Teachers from church for bringing in dinners while Charlie was in the hospital.  You are such a wonderful help and support.

Charlie’s toenails started turning gray last week – a sign that his blood is not circulating well.  They turned up the defibrillator from 70 to 90 beats per minute.  We finally made the hardest decision any parent can make for their child.  We decided that we would take our chances with the heart that Charlie has.  He needs miracles either way.  We will enjoy the time that we have together, rather than spend it in separate states wondering if a heart will come, and if it does, how long it will last and if the heart that he has now would have given him more time instead.  We were running out of time and finally had to choose a path.

April 20 they will put in a new pacemaker.  The defibrillator he has now only has one lead to the left ventricle.  It only goes one speed, whatever they set it on.  They were afraid of putting in more leads and taking up the room in the vein in case we went for transplant.  Now that we have made our decision, they will put in leads to the left and right atria as well.  It will make his heart work more efficiently with his body and provide synchrony between the atria and ventricles.

Charlie is still doing well.  His heart function is still good.  He still feels pretty good and doesn’t show any real signs of slowing down.  He is still in school and happy to be with his friends and teachers every day.  He also has a bit of a crush on his school nurse.

I’m starting to write down his favorite things.  He loves zigzags, dinosaurs, firefighters, fire safety, safety signs, hotels, dancing to the YMCA song, his copy of a painting of my step-brother’s two dogs, and the scene from the Spongebob movie where an old lady offers Spongebob some ice cream and turns out to be the tongue of a monster fish that tries to eat them.  It makes him laugh hysterically every time.  He loves to share the  Chinese words that he’s learned from Ni Hao Kia-Lan.  And he loves a girl named Leah.

Charlie has funny little autistic rituals.  He plays with drinking straws, spinning them until they make a funny noise.  Every night, he puts them on the piano just right, along with his glasses.  He turns off the fish tank light, locks the front door, kisses Dad goodnight, walks to the hallway, and then tells me it’s time to go to bed.  He stands in front of his bed, makes sure his shoes are lined up, then picks up his Spongebob microbead pillow off the floor with his left hand, just right, or he has to do it again.  Then he climbs into bed and I tuck him in.  Then he asks, “What are the towels doing?”  (he has a zigzag towel and a polka dot towel that he also loves.)  We both say, “Sleeping.”   Then I turn out the light and he says, “I love you.”  And I say, “I love you.  Sweet dreams!” and close the door.  It’s the same every night.  When children are little, mothers often wish they would stay little forever.  In many ways, Charlie has done that for me.

Charlie can have plasmapheresis, (similar to dialysis) to try to reduce the number of antibodies in the blood, Rituximab, to clear out B cells, and IGIV.  This takes about a week in the hospital every month.  After a couple of months, they test the blood to see if the antibody count is reduced enough to be safe for transplant.  If it is, we would have to relocate somewhere near UCLA to be put on the transplant list and continue to do plasmapheresis to keep the count down.  Due to recent changes in organ allocation procedures, waiting times have increased.  Patients who used to wait a year are now waiting two.  If the antibody count can’t be reduced, then transplant is not an option.

They would have to be very careful about matching the donor heart, which also poses a problem.  There are fewer donor types that Charlie can be matched up with because of the antibodies.  If he is transplanted, there may still have to be a mis-match of some kind.  The antibodies could cause problems immediately after transplant, resulting in rejection and death, or he may possibly have to be treated with plasmapheresis every month for the rest of his life.  Or, he may do well at first, but each successive heart generally lasts a shorter amount of time and he may only have a few years.  The best, but rarest, possibility would be a good match.  He has AB- blood type, which makes him a universal recipient, but it is not as much of an advantage as it once was.  The antibodies are the main problem now.  Many transplant recipients have problems catching colds, getting infections, etc. because of their immunosuppression.  Charlie’s problem is that he has a very strong immune system.  He rarely gets sick, but has rejection issues instead.

Our other option is to see how well he does with the heart that he has now.  He may have more time left with this heart than if we take chances trying to get a new one.

We have some very difficult choices ahead of us, but feel positive that things will go well, and that the Lord loves him, has always helped him through everything and will continue to do so.  Charlie doesn’t understand what’s going on, Autism being a blessing in this case.  He’s not afraid.  He knows that he’s safe and we’ll do our best to take care of him.  We intend to fight for him and do all we can.

We appreciate all the prayers and good wishes in his behalf, the advice and suggestions.  We believe that the Lord expects us to learn all we can about his condition and what can be done to help him.  The main thing to understand is that we should stay away from anything that boosts the immunity.  A counter-intuitive idea to what you would normally do to stay healthy.

We did have a lot of fun on our trip as well.  Charlie loves hotels and had a great time at Tiverton House at UCLA and Comfort Inn in Manhattan Beach.  We went to a couple of different beaches and piers.  Santa Monica Pier is our favorite.  We saw a seal, seagulls, dolphins and surfers.  Charlie made a sand castle and found sea shells.  He squealed and ran away from the waves.  We went to see the dinosaurs in Cabazon.  Charlie got to climb up into the head of the big Tyrannosaurus Rex.  He loves dinosaurs and had a great time seeing all the different kinds.  We also took a tour of the new hospital at UCLA.  It was so nice, big and light.  The PICU is so much nicer than the old hospital.  It has private rooms where parents can sleep in with their children.  The kids seemed to be having a good time in the Child-Life department.  They even have a big patio area outside for them to play.

Despite the news from the doctors, we had a good trip and enjoyed spending it with Grandma Pat.  Jerry and Rosie are actors in the Mesa Temple Easter Pageant this year.  They stayed home for the final dress rehearsals.  It’s taken a lot of time and work, but has been worth it.  They’re having a wonderful time and sharing a very special message.

Friday, Jan 29, 2010, Charlie fainted at school.  We took him to Phoenix Children’s Hospital.  He was kept overnight, monitored and released the next day.  They really didn’t know what happened, but suspected something to do with his heart.  A day later, (Sunday) he was in the kitchen, fell, and hit his head on the floor.  We took him to the hospital the next day so they could run tests, heart monitor, heart cath, etc.  His heart cath. in November showed that one of the coronary arteries was beginning to narrow in one spot.  It was still pretty wide open and nothing to worry about, but the UCLA doctors were concerned that it could be humeral rejection.  We sent blood to UCLA for antibody testing, but had not gotten the results until our cardiologist asked them about it while Charlie was in the hospital.  It had showed some rejection.  The transplant doctors felt that there was enough concern about his heart causing the fainting/falling that they decided to put in a defibrillator.

Humeral rejection, or Antibody Mediated Rejection as it is also called, is different from the acute rejection that he had so often with his first heart.  They can’t bombard him with antirejection meds for a couple of weeks and send him home.  Humeral rejection is a vascular type of rejection that affects the arteries and blood vessels of the transplanted organ, building up a type of plaque similar to coronary artery disease.  Charlie probably had humeral rejection with his first heart as well, but they didn’t know enough about it at the time.  There is very little they can do to treat it, except plan for another transplant and hope that they can find an appropriate match.

It has been 3 weeks now since defibrillator surgery.  Charlie is doing great, back in school, but not allowed to play basketball or go to PE.

We have an appointment to go to UCLA for a consultation with the transplant doctors on March 22.  We’ll find out what the plan is, but it looks fairly certain that heart transplant number 3 is in the works.

The comfy chair in the living room is empty and we imagine you there so we can informally catch you up a little on our year.  We welcome post-holiday notes or e mails that let us know how YOU are doing, too.

We have had many more ups than downs this year, and we are all in good health and enjoying the Christmas season. The highlight of 2008 for us was the birth of our new grandson, Tyler Charles Crockett on May 18. 7 pounds even, 20 ½ inches. He is a happy, sweet baby and loves to chew on everything.

We are becoming a little more internet savvy, and we get a lot of help from Becky and Kenny. Linda has a website for her artwork, foxartonline.com. We have a site about Charlie’s transplant experience at charliesheart.org, and Jerry has a new website gospelverseaday.com It’s a free email service that provides a scripture verse every day as email, or just on the website. He spent a couple of years compiling a list of his 1600 favorite scriptures to share and is excited to finally have things up and running. Becky is still busy with her online design business at podcastdesigns.com and has a cute site for her family at kenandbecky.blogspot.com.

Jerry hasn’t taught college courses this calendar year. A couple of last year’s classes were for Spanish-speaking students that mysteriously disappeared when the state started requiring proof of citizenship. Now Jerry is working four ten-hour days per week and has used the extra time for promoting barbershop and vocal music education – and for lunches with Linda and/or the kids.

Jerry’s good friend, Jeff Matson, passed away in February from heart problems. Jerry went to Kansas City for the funeral and finally got a chance to meet Jeff’s wife and children and get to know them better. Jeff was one of his favorite missionary companions. They were in the Montana Billings Mission together around 1980.

Jerry combined a return trip to K. C. MO area in July to study at the Barbershop Harmony Society “Harmony University” (music theory, quartet coaching and composing) for a week and spending some time with Jeff’s family.   Jerry will be president of his local barbershop chorus next year. He’s been doing a lot of marketing for the chorus lately and hopes that being president will be less work.(?) He will also be assistant director. He was in a terrific quartet, Bright Side, but 80 mile commutes for practice and the marriage of the baritone made them give it up. Jerry found lots of opportunity to enjoy the Season with music this year with two Messiah performances and six holiday barbershop chorus shows and one big patriotic show in November.

We lost a few of our animals this year. A goat, a duck, three chickens and three chicks. The neighbors’ dogs are among the “natural causes.” Jerry says they went to that “great petting zoo in the sky.” We still have a duck, chicken, and a dog in the yard and black mollys in the fish tank.

We did fewer trips this year. Linda’s Grandma Clara visited for a few weeks, and then we drove her back to Ogden and had a fun time at the annual family reunion. We got a nice picture with Clara, Grandma Pat, Linda, Becky and her boys-5 generations!

Linda has been busy teaching art classes for the City of Chandler. She won a scholarship at Scottsdale Artist’s School to attend a week-long portrait workshop with David Kassan in March. Then she painted like crazy for a while, building up a body of work so she would have enough paintings to fill the entire gallery in Douglas, AZ for her first one-person show lasting all the month of December. It was a challenge getting all 45 pieces of the artwork down south. We spent Thanksgiving with Linda’s parents and then hung the show in the gallery the next day. They had a very nice opening reception and everyone was very impressed with Linda’s work. douglasartgallery.wordpress.com/

The gallery also had a craft show where Rosie sold some of the hats and scarves that she had knitted, and Grandpa Jim also got some orders to build frames after making some for Linda’s paintings.

Linda was awarded a grant from the state to help her attend the annual Portrait Society conference in Washington D.C. in April 2009. She will learn from some of the best portrait artists in the country.

Charlie (13) started junior high school this year and loves it! He is active in scouts and loves to play basketball with the boys.  He feeds the animals and still loves dinosaurs, safety signs and “zigzags.”  He likes to go swimming, and play basketball and racquetball at the gym with Jerry and Rosie. He had a great time at a couple of Diamondbacks baseball games with the family. NO illnesses or rejection to report.

Rosie will be turning 11 soon. She recently discovered the “Knifty Knitter” and has made dozens of hats and scarves. She made a set for all her present and former teachers – Kindergarten through 5^th grade – for Christmas. They loved them. She plays the flute in school band. She loves the Guardians of Ga’Hoole books about fictitious owls, with lots of owl facts. She still loves birds and wants to be an ornithologist/artist.

Bradley and PJ are still doing online college courses on the computer. They also do respite and habilitation for Charlie. Bradley is nearly finished with his computer certificate, while PJ is just getting started working toward being a programmer. PJ is proving to be an excellent babysitter for Becky.

Becky, Kenny, Sam and Tyler are all doing great. The boys are fun and challenging for them. They are in the same apartments but now downstairs. No more climbing stairs with babies, groceries, and toddlers. Kenny is “indispensible to his department,” and his CEO insists that GoDaddy is recession-proof. Sam is three now. He is SO cute and funny and is a great big brother to Tyler.

We have been doing some family history research during the year. Familysearch.com makes it so easy for us to organize information and link up with what information we can find online. We also received information from family members and others. We hope to continue to find new names and stories this year.

Well, God has been good to us again this year.  We are very blessed.  Hope all is well with you and yours!

Merry Christmas! Happy holidays! Happy 2009 to come!

Love, The Fox family- Jerry, Linda, Bradley, PJ, Charlie, and Rosie.

http://gospelverseaday.com…………………………………….. http://foxartonline.com