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...)

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!

New Piano...um...USED Piano :)

I guess the title says it all - we got a new-for-us piano a couple weeks ago. It is a 10-year-old Clavinova. I LOVE messing around with digital pianos. This one does not have a full keyboard (it only has 76 keys), but I love playing it and seeing what kinds of fun tones I can play my favorite songs with. I suppose these are the marks of a truly mediocre pianist. Oh well, I don't care. I love the thing. I am happy that we splurged pre-tax refund. :)

S also loves the piano. I had forgottten what it is like to live with him and a piano in the same house. (We used to have a piano in the house we were renting right after we got married). S's piano playing style reminds me of a cross between radio station remixes and CD collection infomercials.

As a kid, I used to love CD collection infomercials. I would hear one snipet of a song I liked and then I would leave the tv on that channel to see if there were more songs I liked, which there usually were. I never bought any music of course, but for some reason I was happy to be entertained by these infomercials. Well, now I have my own infomercial living in my home. S has between 4 and 6 songs that he has memorized over the years. Every now and again he will pull out a new one that I haven't heard, but for the most part they are all very familiar to me by now. They include: Canon in D, Sonata Pathetique, Jurassic Park, the song that is playing when they say "One Grecian Urn" in some movie, and perhaps one more. S will sit down at the piano and do something like this: He will start with Sonata Pathetique (which I LOVE), and right when I remember how much I love it, it will all of a sudden be Canon in D! And that will suddenly morph into Jurassic Park! He never plays more than 5-10 seconds of any one song without changing to the next. Fortunately, the songs repeat themselves without neglecting any one song or adding any other songs to the list. So I get used to it, right? :)

Also, S rarely plays any song at the composer's tempo - they go much faster. Canon in D is even jazzed up a bit with different rhythms and ornamentation. It is just like when radio stations try to play little bits and pieces of some popular songs all in the same tempo, even when the songs are not meant to be at that tempo, or when they make a hip-hop version of a country song. Really, his style just cracks me up. I am glad that he enjoys playing the piano. And I am glad that he wanted to get this piano for our family as much as I did. If only we could get Boo to take an interest... (he isn't even yet interested in his baby piano). :)

New Water Heater and other issues of relatively new homeowners

We just purchased a new water heater!!! Actually, we are hoping that our home warranty company just purchased a new water heater for us, but either way, we have a new water heater and it is wonderful! We have put up with unreasonably quick showers for some time now, and I personally am glad to be able to take long hot luxurious baths. :) Strangely enough, that is not the only thing that has changed around here...

When we first moved in last February, the woman who lived here before did not have time to clean, so we were left with the grime. I noticed that both bathtubs were soiled with some kind of brown thick layer of something that was stuck to the sides and bottom. That sounds grosser than it was. So it was basically just some kind of scum layer that looked nasty. Anyway, I was thrilled to discover that it all came off with Magic Eraser! I figured that she just didn't clean very much and since I cleaned it it would be gone forever.

Not so. In less than a few weeks, the yellowish-brown grime was back. I got in the habit of cleaning it out every now and again, but it was definitely an annoyance. Then we began to notice that our bathwater and drinking water was discolored. Makes sense. So we determined that the city water supply must be a yucky color. (This sort of color came out of the faucets in Iowa sometimes when they cleaned out the fire hydrants and such). No big deal, right? We decided to ask one of our neighbors sometime if this was true for them as well. And being the go-getters that we are sometimes, we never asked anyone.

So last week, I had a plumber come out finally, since I cannot STAND to take 2 minute showers and I cannot stand even more to be cold. He came in and basically decided right away that our water heater was not even worth looking at (being 15 years old - water heaters are supposed to have a life of 10-12 years tops). We would need a new one. Hoping that the home warranty plan was not some sort of fraud, I agreed to buy a new one and have him install it right then and there. Don't get me wrong, I didn't do this blindly. He went through and showed me all of the clear problems with our water heater and how a water heater is supposed to work. It was all very informative.

A few days later, I went to make some hot cocoa for myself (something I do relatively often). I put a bunch of water in our hot cocoa maker and turned it on. After awhile, I noticed something different...the water was clear! Every other time I had made hot cocoa, the water looked like some kind of weak tea. Then later I took a bath...CLEAR water! Only then did I remember that the plumber had showed me how rusted out our water heater was, and the fact that we could see a bunch of rust from the outside meant that it was COMPLETELY rusted out on the inside! It is embarassing to report that...we had been drinking RUST!!!!!! I am just glad that Boo doesn't drink water and that I only drink Kroger bottled water (except with my hot cocoa...let's not even go there!).

Take home message: Don't EVER put up with unexplained discolored water, check your water heater for a lack of rust, and if the explanation for your discolored water IS rust, replace it IMMEDIATELY, WITHOUT QUESTION, NO MATTER THE COST!!!!!!!

As for the other household appliances, we have had some other very easy fixes that have improved our lives significantly. For example, after getting to the point of having to dry our clothes 3 times before they were dry, I finally called up Sears for some service. We had a warranty with the washer and dryer, so I figured we would just have someone come out and fix it. I rehearsed all our dryer troubles and asked for advice. He told me to go home and check the vents. Upon doing that, Samuel discovered that our dryer vent to the outside was COMPLETELY clogged! We are lucky there was no damage to the dryer or anything else for that matter. Also, our lint screen was full (which, incidentally, is my favorite part of doing laundry) due to its being in an obscure place. Problem...SOLVED! (Without spending a dime, might I add.)

The dishwasher has also gone berserk on us. It looks like such a fine appliance, but we got to the point a couple months ago of giving up and going back to handwashing, even after using a rinse aid consistently. It was at that point I decided to finally call Maytag. I told the man how disappointed I was in our once-clear-now-frosted glassware, the fact that things simply did not get clean, and in fact that things came out DIRTIER than going in, requiring handwashing eventually anyway! He told me to try washing the glass with white vinegar and seeing if all the frost came off. It did, so he recommended that I use dishwasher magic once or twice and that would probably clear out the buildup of phosphates due to our hard water. Problem...SOLVED! (Again, without spending a dime!...well, ok, maybe a dime or seven dollars...).

We are finally starting to realize that there are some very simple things we can fix in our lives that will make things SO MUCH BETTER for us! (This is true spiritually as well, of course). Even these two small and one big changes in our appliances have made our lives considerably easier and less stressful. Hard to believe that such a small effort could yield such great dividends. So in a broad way, that is my goal this year...to look for the small things I can do that will make a big difference and DO them!

Helmet Woes

Here are the thoughts I have been having in my head lately, almost non-stop:

"I can't let my son grow up with a misshapen head his whole life when I am able to do something about it!"
"But I don't want to make him have one more piece of medical equipment to bug him."
"Maybe it's not that bad, maybe we can fix it ourselves."
"Even if I always lay him on his side, he will roll on his back and the pressure will never be put on the areas that need it."
"How will he feel when he looks at his baby pictures and sees a helmet?"
"How will he feel when he looks at his baby pictures and sees a head that needs a helmet?
"So-and-so thinks it's a good idea."
"So-and-so thinks it's a bad idea."
"So-and-so says helmets always work."
"So-and-so says helmets often do not work."
"So-and-so's baby got a helmet and they are SO glad they got it!"
"So-and-so's baby was recommended to get a helmet, but they chose not to and they are SO glad!"
"Kids grow out of flat heads. Flat heads are very common now, since babies are supposed to sleep on their backs, but you never see adults walking around with flat heads (never mind that when we adults were babies, our parents put us to sleep on our tummies!)"
"There is only a small window of time, age 7-8 months, when a helmet can be effective, because that is when babies have their head growth spurt." (I would love it if someone could PLEASE tell me how old Boo is...8 months technically, 6 months gestationally, and 5 months developmentally...). If a baby needs his head fixed after that time, the skull bones must be broken through a series of four laser surgeries and the helmet process is much more drawn out and significant."
"If insurance pays for it, it will come out of our medical equipment funds, which we will max out very quickly with all the medical equipment we have and we will end up having to pay a TON."
"If insurance does not pay for it, we have to pay $1800, $900 on the first appointment."
"If we wait another few weeks, we can see if we can make any progress on our own, without a helmet. Then we will be better informed as to whether we need it."
"If we wait another few weeks, he may already be hitting his head growth spurt."
"If we get a helmet, a lot of stress will be relieved in that we won't have to constantly be moving him to be on his side...he could sleep on his back again and spend however much time in his bouncy seat. The helmet would fix all of our problems."
"A helmet is the easy way out for those who are unwilling to be diligent and patient and long-suffering, and have all other attributes needed to be a good parent."
"Now is a great time for a helmet...it is winter and he has to stay in anyway!"
"Who wants to have a helmet?"

OK, so what did I choose? I still didn't have my mind made up as I was driving to our appointment with the helmet people this morning, but by the time I got there, I gave the woman my card and paid the $900. It's over, and remarkably, my stress is considerably diminished concerning the matter. In ten business days, Boo will have a helmet, which he will likely wear for the next 2-3 months. No big deal. I am not sure if this is the "right" thing to do, or if there is even a "right" thing, but I definitely feel OK about it now, and any decision at this point is a step in the right direction. I hope all our decisions are not this difficult!

Top Ten Reasons Why I Love S

1. He is totally good and honest and easy to talk to and get along with.
2. He can successfully place an NG tube in Boo's nose, among the many other things that he has learned to do with Boo (things that lots of dads never even have to think about!)
3. He trusts in God and helps me to do the same. His faith is amazing and he always has been able to get me out of my doubts and fears.
4. He trusts me and encourages me to "follow my heart"
5. He knows what kinds of things I like and he makes the effort to give them to me (ie. a hot bath with a good book, time to go running after he gets home from work, Milky Ways, etc). Basically, he encourages me to take time for myself and do things that I like to do and he watches Boo while I do my thing!
6. He loves Boo and he gives him rides on his Boppy (which Boo LOVES)
7. He does 4am feedings and changes poopy diapers willingly, without any complaints ever!
8. In spite of the fact that I sometimes get after him about things, he NEVER gets after me about anything. And he takes all my issues in stride, never taking offence and always trying to make me feel good.
9. He likes my made-up songs and silliness, even in the middle of the night when I am totally ridiculous in my sleep!
10. Although he is definitely smarter than me in many ways, he takes time to explain things to me, talks to me about things that are sometimes over my head, and even listens to and values my thoughts and opinions!
11. He will drop anything to help me out when I need it (and I have needed it sometimes, LET me tell you!...) He would also drop anything to help anyone else in need...I have seen him do it time and again.
12. He leads with love in our home, NEVER with harshness.
13. He has incredible taste in movies and other forms of entertainment! (ie. "Happiest Millionaire", "Seven Brides for Seven Brothers," etc...never seen anything like this stuff!)

OK, that was 13...but that is not even all!! I can think of lots more reasons that I love my sweet husband, some of which I would not write on a public blog. Suffice it to say that I think I have one of the very most amazing men in the world as a spouse and I am SO glad that we got married, even after all we have been through in this short year-and-three-months...ESPECIALLY after all we have been through! I have the sweetest little son too, and I couldn't ask for anything more than the wonderful family that I have been blessed with.

All I Want For Christmas...