Sunday, February 22, 2009

Boo & the piano & corporate interface & other ensembles of steed life trivia

Boo & piano:
Lately Boo will be busy eating or looking at A or playing with his rattle but when I begin to play the piano he seems fascinated by it and stops everything he is doing and just stares. I have told A several times that I think this is because one doesn't generally see male pianists so when one does it is more of a novelty. A denies with all of her heart that this is true but I still assert that this is the case. Perhaps he will be interested in playing the piano.

Corporate America & Small Business interface:
The month that Boo was born May 2008, we payed our credit card payment 1 week late and we were assessed a $40 fee. I called american express and asked them to rescind but they wouldn't. Then A called and they immediately agreed to remove the charges. That was a big moment for me. It gave me all of the ammunition that I needed to defer all of the bill paying to A because she was better then me. She has appealed several insurance company decisions and won. She has appealed the county's assessment of our house. She goes straight to the top when needed. The tradeoff here is the excessive cell phone minutes from being on hold. She does a good job of sticking to her guns when dealing with retailers. She went to a department store for a return last month and after spending several minutes with the clerk and then the clerk's boss the proper return was settled on after both the clerk and the boss had come up with 5 different refund values ranging from $6 to $114. They really struggled with the math but A helped them through it. Story problems have always been the most difficult for math students.

I will also admit that I do feel like I have a role as the automobile repair interface since A can be misled easily. In fact, while she was at the tire store, she watched a television show on car repair and then she suggested to the repairman that we needed new shocks and he said that we didn't because of the number of miles. There are other examples that I won't go into but basically I feel comfortable as the best automobile repair interface.

Sunday, February 15, 2009

CHD (Congenital Heart Disease/Defect) Awareness

Speaking of heart health...

I must mention CHD awareness week! I suppose it is over now (ended on Valentine's Day), but I must recognize it nonetheless. As many of you know, Boo was born with a congenital heart defect (heart problem from the womb). There are many kinds of defects, some more serious than others. Some children live for a long time without even knowing they have a heart problem. Other children have heart problems so severe that they require surgery almost immediately after birth. Boo was pretty much one of these children. He had his first open heart surgery at 1.5 months and his second at 5 months old. Now his heart is "fully repaired," although he will likely need valve replacements in the future. We are blessed in that Boo's heart defect is reparable, and that it is one of the defects that has been studied and had surgical procedures developed for a long time. Children with other defects are often not so lucky.

Honestly, I do not know very much about the purpose of CHD week, but I have been thinking about it all week and what it means to me. Here are some of the reasons I think it is important to be aware of the occurence of CHD:

1. Kids with CHD can have a variety of special needs, one of which is donated blood. This is something that most of us can do, and it really does save lives. Boo has received about 10 blood transfusions in his life.

2. Also, while Boo's defect has been well researched, there are many others that have not, and there is always more research to be done. So far, there are no known causes or ways to prevent CHD from occuring. We can donate money to help fund such research and to develop new procedures. Websites to visit include: http://www.childrensheartfoundation.org and www.intermountainhealinghearts.org. Were Boo to need his valve replaced right now, he would have to have another open heart surgery and he would have to have it replaced every 5-10 years for the rest of his life. But with the research they are doing now, this procedure could be done in the cath lab (without opening his chest - lower risk), and they are also working on getting valves that last longer. This could make a HUGE difference in our lives! The more surgeries Boo (or any other person, for that matter) has to endure, the worse. The worse on his lungs especially. So this is very important.

3. Finally, one of the most important reasons for all of us to be aware of the occurence of CHD (1 out of 100 babies born has a CHD), is that these families need support. Certainly our family has been blessed with GREAT support from family, friends, and church members. We also joined a support group for families of CHD kids and adults with CHD. Even with this support, it is very difficult to be a "heart mom." There are so many emotions involved and so much to learn. And so much worry and anxiety! And so much joy in the little things, often things you would never notice with any other child. And so many blessings. But yes, it is hard, and you do cry, and you do wonder about the future, and you do hope that you are doing what is best for the child without really knowing what that is, and you do put your child's life in the hands of competent medical professional strangers on numerous occasions and put all your heart and soul into praying that Heavenly Father will somehow take care of your little one when it seems impossible, and you do sit in the surgery waiting room while your child's heart is literally stopped thinking that your own heart might just stop too from all the stress, and you do always have the background stress of making sure your child always stays healthy since the smallest little cold could mean life or death. These are things that "heart moms" go through all the time. And certainly it is not just "heart moms" that need support, it is the whole family.

P.S. I am not currently in desperate need of support or anything. We are doing well and we expect this trend to continue. :) I share this point only to help others understand the stresses that come to families dealing with CHD on occasion (sometimes long occasions, sometimes short). But like I said, right now we are doing fine. (Although that getting-sick-background-stress stuff is VERY true for me! Please kindly keep your distance if there is any chance you may be sick. :)

Ultimately, I would like to say that I am VERY happy to be Boo's Mommy! I love him so much. I wish he did not have to go through so much pain, and I wish that I could experience it for him. I am glad, not that he has been so sick in his life, but that we could experience the great joy that comes as great difficulty and sadness and stress is overcome by miracle after miracle. Boo brings a joy to my life that I do not believe I would know otherwise. CHD is bitter, but life with Boo is so sweet.

So, Happy Valentine's Day and CHD Awareness Week everyone!!!! (Sorry this post is extraordinarly long and personal...)

Saturday, February 14, 2009

Experiments

For lack of anything better to say (besides everything on Boo's blog), I am writing about my latest time-consuming activity (I wouldn't call it a talent yet...) - cooking! I believe I have 5 cookbooks total, and I have been cooking a new recipe from one of them almost everyday for the past month! We have been enjoying a family dinner almost everyday (something I have not experienced since high school)! This is a real accomplishment, as I have never been proficient in the kitchen, nor do I have a history of enjoying any kitchen-related activities except licking batter/dough off bowls and spoons. :)

We have found some new family favorite meals, as well as some complete flops. Some of our favorite meals include:
Chicken Cashew Casserole
Zuppa Toscana (from Olive Garden)
Banana Coconut Muffins (I liked these, S did not)
Blond Chili
Meat Loaf with Barbecue Sauce

Some of the flops (most of which came from my American Heart Association cookbook) include:
Greek Lemon and Egg Soup (I couldn't even drink it!)
Artichoke - Tomato Pizza (We REALLY did not like the artichokes!)
Corn Casserole (after buying so much low-sodium stuff, this was a very unwelcome and unhealthy dose of salty yucks. I believe that children would enjoy this meal, however, as it is reminiscent of macaroni and cheese with hamburger helper. Unfortunately, I do not believe my children will ever enjoy it.)
Pepper Steak (I married a man, just like me, who does not prefer peppers)
Blackberry Muffins (They were supposed to be blueberry, but the cans in the store looked the same...this one tasted like medicine)
Caesar Brussel Sprouts (S gagged down a few bites. I liked it at first, but as left overs I gagged too!)
Hot Bacon Cheese Dip (tasted pasty and yucky all around. I can't really describe it, but it was not good and it will never find its way into my slow cooker again!)

I would be happy to share any of these recipes if anyone is interested. As for the American Heart Association cookbook...save your money. Spend it on anything else. Anything. For those like me who are seeking a more heart-healthy diet, buy stuff that is low sodium and low in saturated and trans fat, and just eat what you like. The recipes in the book are GROSS!!! We have yet to try anything from it that we like. They are either flavorless or have really yucky flavor. And they usually require random ingredients that we would never buy. Why do we keep trying it's recipes then? Because I have a system and I just like to follow my system. :) I must have some miniscule glimmer of hope that someday something good may come out of that cookbook. Luckily, many good and great things have come out of the others!