Friday, October 31, 2008

My Mood

This morning Danny and I woke up and felt like this....TIRED!! Having to get to Tyler's doctor appt felt like this.....
We met with the cardiologist and doctor this morning. Things are going well and we will do another lung scan in about 6 months to see if we will do another cath. I just might turn into this cat...

For all the people who emailed, sent cards, flowers and phoned who I haven't been able to call back, know that we appreciate and love you. I am not great or even good at being a quick replier or even writing cards. I am actually horrible at it. I am sure that people who get offended by that have found a friend elsewhere and those that are still with me just have come to find something else they like about me. Should I change? Probably. Am I going to? I should, but I just don't know if I will. At least I'm not in denial. Anyway, you often don't talk about the energy, both time and mental, that having a sick child sometimes takes. My Tuesdays, Wednesdays and Thursdays have activities for Scott and therapy for Tyler. I also work at night. The playgroups and co-op's have been GREAT for Scott. I wouldn't change it for the world. I didn't really want to go to bible study this week and asked Scott if he wanted to go to pre-school (that's what we call his little school there) and he said yes. Can you believe it? He doesn't complain as long as Tyler goes to his class down the hall. The teachers said that Scott had so much fun. He made a pumpkin and even talks about the kids in his class. This hasn't been an easy adjustment for him. It really helps when he knows Tyler is safe and not at the hospital or doctors. He needs to go wherever Tyler goes, including the doctor, to make sure Tyler is ok. I always plan on relaxing Monday and Friday, however, they have been filled with random doctor appts, assessments and tests. Before you feel bad for us, don't, because we do have it relatively easy. We have so many friends and family who support us, a child that is relatively healthy compared to many, and miniscual financial, familial and other stresses in our life. So part of being tired (a big part) is totally our fault. After the doctors appt, instead of getting babysitters, massages, pedicures and going to lunch, we decided to continue laying laminate flooring in our condo. What is wrong with us? Well, it looks great if that is any consolation. I guess we have some things to learn about relaxing. Until then, I will be learning how to do this....
Rest & Relaxation!!

Danny and I need a vacation. We should just take a couple of days off, hop on a plane and go to Mexico or Hawaii (I prefer Mexico). Now why is that so hard for us to do? I have no idea, but it is. I think one of my resolutions is to ensure that we get away more as a couple and family. We work hard and are able to get away, but just don't. I have a feeling this lesson is going to be a great one to learn. Some of our friends and all of our family are great at this, while some others are in our boat. It must be in my genes somewhere. I must locate those genes. Ok, time to go carve a pumpkin and go trick or treating and perhaps meet friends at trains in the park. Oh the irony of it all.

Thursday, October 30, 2008

Pics from the hospital

Sadly I don't have the most fascinating pictures to show of the actual cath. It just amazes me what they can do these days. I will see if our cardiologist can send them over so you can see or I will scan them. You can see the lungs fill with oxygen, heart pumping, balloon expand the artery which is just amazing to me what they can do.

This is Tyler's room. Danny took the afternoon off and came to hospital with Scott. Scott spent a lot of time in the playroom painting, playing with trucks and had a good time seeing Tyler.
Tyler still a little out of it from the sedation but enjoying his 2 lollipops Robin gave to him.
Scott wanting to give Tyler a kiss. He is so compassionate towards him (at least when he is sick)
This was there favorite thing to do. Look out the rooms window at the people and cars going by. It was very foggy in San Francisco.
Robins son is on a mission in Korea. The childrens hospital has artwork done by youth. This was titled "first birthday in korea"We are doing well. Tyler and I are recoving from about 2 hours of sleep in the hosptal. It was no fun but I can't complain. I wasn't the one who had the surgery. Tyler is a champ. He is doing great.

Tuesday, October 28, 2008

Surgery Update


Tyler is out of surgery and it went well. They only had to put one cath in through his neck. They opened up the PA with a balloon. The stenosis was a result of the conduit from his first surgery. When they took it out, it created a narrowing which is often common in babies with Norwoods. The surgeon is happy with the result. They opened up the stenosis by tearing the narrowing and it will repair itself with a larger pathway. They didn't have to place a stint which they are happy about since it is difficult to take down during the Fontan. They will do another lung scan in about 9 months and see if they need to repeat the procedure or wait until a cath is needed prior to the Fontan which is done around 2.5-4 years. During the Fontan the stenosis will be fixed by connecting the lower part of the heart to the area that is narrowed. There were no seen collaterals so no coils were needed and the aorta looked sufficient. The decrease in oxygen could be a result of more blood going to the brain or something that is common with single ventricle babies that has to do with the liver that I didn't understand but that fixes itself after blood flow is changed during the Fontan. So basically everything is a temporary fix until the Fontan, surgery went well and the surgeon is very pleased with how things went. The pressures improved which by quite a bit which was a good thing. They were not that bad to start off. Tyler is waking up and content in Robins arms. It is hard to come off the sedation. Danny and Scott are visiting tonight so we are excited to see them soon. All is well. Thanks for the prayers. We appreciate all the love and support, many people willing to do whatever to help with Scott and be there for us. We are so blessed to have such great friends and family.

Tylers Cath

Tyler went to the cath lab about 9:45 this morning and after about 40 minutes they finally had him enjoying life on the sweet drugs that he will hopefully only try out in the hospital. They are going to put a cath in through his neck since that is how to access his PA. They sliced it from his heart after his Glen and thus don't have access through the leg. They will try to balloon it open and if that fails will place a stint. Stints are good, however, don't grow with the little man and we are hoping that he grows so will have to go in to expand it in the future. They will possibly coil off callaterals that are bringing blue blood to areas that it shouldn't be going (basically any area other than the lungs). They will also examine his aorta to see if they need to balloon it or place a stint. Aorta stints are a little more difficult since growth is more of an issue. He is a champ. The hardest part so far has been placing the IV which went well. They gave him fluid right away so he wouldn't be dehydrated since he is NPO (can't have anything). It should be about a 6 hour procedure. Will keep you updated. Robin came with me which is nice and now we are off to join the drum circles in the golden gate park, see the de young exhibit and have some food. Thanks to Stacey for watching Scott. Scott loves being with his friend Charlie and playing with his bizzillion trains.

Thursday, October 23, 2008

Tyler Update

It has been a while since we have updated on our little man. He has been doing really well, is happy and a great little brother. He and Scott are starting to interact and play more and it is so fun to see his happy, sweet personality. He had a lung scan at UCSF about 2 weeks ago that showed a decrease in O2 on one side which could be a result of a couple of things. They have always been a little concerned about an aortic coarc as well as stenosis of his Pulmonary Artery due to surgery. His echo and EKG were pretty good last week, but the doctors were concerned about the lung scan result and oxygen sats that have been lower than normal. After his Glenn he was satting in the 90's and the past two months or so have been in the 80's. UCSF called today and we will be going in for a cardiac catheterization on Tuesday. The surgeon (well probably a fellow) will hopefully call tomorrow and go over the details. I think to an extent they go in and figure out what needs to be done. They are going to try to open up the PA stenosis and Coarctation with a balloon, as well as look for capillaries in the lungs to coil off so that his main arteries are receiving more blood and oxygen. We are hoping for an uneventful procedure, but you never know. There are things that could go wrong and we would appreciate all your thoughts and prayers for our little man.

Tuesday, October 21, 2008

Stand Fast Through The Storms in Life

I get to teach Relief Society once a month at church. I LOVE the third meeting because women get to talk, discuss, help and uplift each other. It is intimate and a time I am always uplifted. This week was about finding joy through tribulation. Life is hard at times. We have all faced health, financial, familial and other stresses that make the journey difficult. This lesson was a reminder to try to be positive, learn and grow from your trials, put your faith in the Lord, be thankful for what you do have and not what you don't. I talked about my only sister, Heather. She is a great example to me. As many of you know and some don't she has been trying to start a family for a while. She had two miscarriages and tried for months to get pregnant but it just wasn't happening. She wrote a wonderful entry in her blog that you should check out about her journey. www.maddoxlove.blogspot.com. She talks about that through her heartache she chose to put her trust in the Lord. They filed with an Ethiopian adoption process. A month after her paperwork was submitted, they got pregnant. Along the journey, she realized that not only do they want biological children but would love to adopt someday. She realized sometimes the 'why' is never answered. And most importantly she said during this difficult time she woke up each morning being grateful for her many blessings, instead of dwelling on what she didn't have, which I can truly testify of. She always reminded me how grateful she was for her family, her marriage, her happiness. During this time she was a great example of putting her trust in the Lord and having faith that he had a plan for her family. She was at peace that he would bring her a child either through adoption or biologically. President Monson in the recent Conference for our Church says, "Our realization of what is most important in life goes hand in hand with gratitude for our blessings. Said one well-known author: “Both abundance and lack [of abundance] exist simultaneously in our lives, as parallel realities. It is always our conscious choice which secret garden we will tend . . . when we choose not to focus on what is missing from our lives but are grateful for the abundance that’s present—love, health, family, friends, work, the joys of nature, and personal pursuits that bring us [happiness]—the wasteland of illusion falls away and we experience heaven on earth.”6In the Doctrine and Covenants, 88:33, we are told: “For what doth it profit a man if a gift is bestowed upon him, and he receive not the gift? Behold, he rejoices not in that which is given unto him, neither rejoices in him who is the giver of the gift.” The ancient Roman philosopher Horace admonished, “Whatever hour God has blessed you with, take it with grateful hand, nor postpone your joys from year to year, so that in whatever place you have been, you may say that you have lived happily.” I just want my sister to know how grateful I am for her example and her faith during this difficult time. She truly was able to rely on the Lord and find joy amidst hard times. She is having a BOY and I am so excited for Scott and Tyler to have a little cousin to play with and for the great example that Jason and Heather are and will be to us as parents.

Sunday, October 19, 2008

Pre-School Co-Op

It was my turn again to host co-op. We are staying at my parents for 3 weeks since they are in Turkey and they happened to be re-paving their court. It was perfect! We learned all about how, why and what they use to make a road. The kids were actually into the lesson and loved to watch the big trucks. They also loved to play and eat together. I am so happy we got this organized. It is great for the kids and moms. Scott is doing better with his separation anxiety (most of the time). He didn't have a problem at the nursery during bible study. Little by little. We are still working on it, but I am proud of the progress and learing a lot as a mom along the way.
Watching the trucks. Luke and Carter watching their trucks.
Scott taking Miss Ellie on a drive. He actually let others drive the truck too.
Snack time.
Carter and Scott showing off their climbing skills.

Proposition 8

As many of you know, Proposition 8 regarding traditional marriage is on the ballot again this year in California. Prop 8 will be an amendment to the state constitution that says, "only marriage between a man and a woman is valid or recognized in California." This is a complex issue, one to which I have given much thought and pondering. I have gay friends who I honor and admire although don't agree with their practices. I believe that their union is entitled to many of the same rights. In California they currently have all "rights, protections and benefits of matrimony." Prop 8 won't take any of those away, however, it will define that marriage is between one man and one woman. I believe that there has to be an ideal. I believe it is important and my responsibility is to teach my children to be tolerant and loving to all people, no matter their background, choices or lifestyle. This is an issue I wish to teach to my children how and when I want, without undermining my religious beliefs. Please look at the following link to show how Prop 8 could affect that choice and the rights and values our children will have to learn. I hope all you Californians will go out and VOTE YES on Prop 8. Register and vote. Get your absentee ballot and vote. Spread the word to other Californians to vote.




Please look at this blog to see how this decision is affecting other states. www.thoughtsonprop8.blogspot.com

Sunday, October 5, 2008

Conference Weekend

This weekend was our church's General Conference. People often ask what we believe. In a nut-shell, for anyone who is curious, we believe that after Christ and his apostles died, there was no living prophet with the priesthood or authority to direct Christ's church. The catholic church believes Peter passed on that priesthood. Protestant church's began when Martin Luther noticed that main doctrines were being lost during this time and wanted to reorganize the church. The Church of Jesus Christ believes that the priesthood was taken from the earth after Peter's death, and similar to the protestants, that things changed and were lost during this time. We believe Jesus Christ and God the Father appeared to Joseph Smith and called him as a prophet to restore the Lord's Church and priesthood to the earth. Since that time, we believe there has been a living prophet and 12 apostles on the earth to guide and direct us and the Lord's church. Conference is a time that you listen to the prophets and apostles council through worldwide broadcasts to churches and homes. They are messages of hope, peace and happiness.

This is our current prophet, Thomas S. Monson, with his counselor Dieter F. Uchtdorf

LDS Church President Thomas S. Monson asked members to demonstrate thankfulness.
"If ingratitude be numbered among the serious sins, then gratitude takes its place among the noblest of virtues," he said. "Our realization of what is most important in life goes hand in hand with gratitude for our blessings." He specifically named family as one of those "most important" things reminding us that children were to take precedence over "piles and piles" of laundry. He reminded us that all too soon the tiny finger prints that are found everywhere would soon be gone and be missed. "Sometimes we spend too much time worrying about the tiny details and not worrying about the important things," he said. He reminded us that focusing on tomorrow leaves too many empty yesterdays.

President Henry B. Eyring, first counselor in the First Presidency, said members of the church could accomplish any purpose of the Lord when fully united in righteousness. "We see increased conflict between peoples in the world around us," Eyring said. "That is why my message of hope today is that a great day of unity is coming." He said Jesus Christ would return to live with His people, finding them united and unified. The leaders encouraged us to simplify our lives, remember what is important as we face trials and challenges. Elder Hales encouraged members to face those critical of them and the church with courage, love and understanding. "Love our enemies and pray for those who speak against us." We were reminded that there are angels all about to help, lift and protect us. One of my favorite stories shared was a reminder to be like little children. Elder Corbridge shared of a 4 year old who had a serious hearing impairment. She needed numerous surgeries to gain slight hearning. Once when she was in the grocery store line, she saw a little boy sitting in a wheel chair. She noticed he had no legs. Although she learned to speak, she had trouble contoling the volume of her voice and asked her mother why the little eboy had no legs. The mother explained Heavely Father makes all his children different. She then turned to the little boy and said, "Did you know when Heavenly Fahter made me my ears didn’t work. That makes me special. He made you with no legs and that makes you special. When Jesus comes I will hear and you will get your legs. Jesus makes everything ok."

Monson ended conference with a challenge to members to deeply study the messages they had heard in the five sessions and to become better people

Friday, October 3, 2008

Thursday with Dad

Danny had the day off teaching due to school break. He never has a day off so we made sure to do some fun things as a family. We went to the train store. Danny went to the junkyard right up the road which he enjoys. He was looking for a power antenna for his Riv but unwilling to pay the price they asked. Lunch at Chipotles.
Danny met up with Dan-O, his best friend from high-school, who was in town for work. I had to work and missed out on dinner at Chevy's.
Dan-O.
Danny drove the Riv. A family friend gifted him a car about two years ago. The same Buick Riviera Danny drove in high school. Danny enjoys doing projects with the boys. His latest project was installing a stereo system which sounds really nice.

The car is actually really nice as well if you are into Rivieras. I am happy that Danny enjoys his hobbies. One thing I love about him as a dad is that he always includes his sons in his projects. I usually get home from work after him and he is often working on the car with the two kids. Scott loves to help with fixing things and Tyler loves playing with cars.