My Little Blog

Sending my thoughts out into cyberspace to keep my sanity.

Tuesday, February 14, 2006

Happy Valentines Day

Happy Valentine's Day

Got a really cute picture of Weston taken with him all dressed up as a Cupid. I'm going to embarrass him with it when he is older and brings his girlfriends home :) If there are any relatives out there who haven't gotten a picture yet, it's in the mail. sorry.

Moms club had a party today. It was really cute. Hunter made a nice valentine for his Daddy and Grandparents. Weston just loved all the kids and was getting into everything. A little boy about one and a half pulled the fire alarm and we had to listen to the ear piercing screech for about 15 very long minutes before the volunteer firefighters came and turned it off. All the moms completely understood, but I bet they were all thinking the same thing I was "I'm glad that wasn't my kid" They get into enough mischief. I honestly feel better when I see other little troublemakers. Then you realize that your own kids are normal.

C and I didn't have much of a Valentine's day. Our water pump broke and had to be replaced. Luckily my very nice father-in-law and brother-in-law came to fix it for us today. I ended up making a decent meal and the two of us ate dinner at 9:30, but that's it. The night is still young. What am I doing on the computer????? .........................................

Baby bottle cheese sandwich blog

I found the term that describes my blog. It is called a "cheese sandwich blog." The term was coined from all the people writing blogs using them as daily journal that only described their little bubble of a world. "Today I ate a cheese sandwich" etc.. and not commenting on the outside world. Well I figure there are enough people putting in their two cents about the world so who would really care about my opinion anyway? This blog is a record of my family life. I am printing it out and someday will give it to the kids when they grow up. I might also look back on it someday to remember what it was really like when the kids were little. Those baby books are really cute, but they don't tell you much except for dates of "firsts". So my blog isn't really a cheese sandwich blog, it's a baby bottle blog.

Monday, February 06, 2006

Rock a bye baby

Weston is finally asleep. That child fights sleep all the time. I know I should just let him cry it out. C wants me to do that. I just can't stand it. My father told me he used to lie under my crib while I cried at night so I wouldn't see him, but he could make sure I was safe. My cousin said she waited outside the door and one of her kids cried so hard she threw up. I just can't do it. So C was supposed to put Weston to sleep when I was writing my last blog and then he came downstairs and said he couldn't get him to sleep and he was going to bed. I went upstairs and rocked Weston until ten. Hopefully he is down for the night. I get up between 5 - 10 times between the two of them. Hunter slept in our bed until he was 18 months old and finally got his own big boy bed. Then I slept with him in his big boy bed until he fell asleep.now he goes to bed on his own. I think that is pretty good, so I figure in another year I can probably sleep through the night most nights. Ugh.

Weekend news

C had Friday off so we decided to have a family day and went to the aquarium. Hunter liked the tidal pool where you could touch some of the creatures. He put his hands in the water and touched crabs, hermit crabs, a starfish, a sea urchin, and a clam. He also liked watching the trainers feed the Beluga Whales. He laughed every time the whales made this funny high pitched sound. Most of the time Hunter liked running around. It was really a lousy rainy day, but at least it was warm for this time of year. Some of the exibits were outside and we all got a little wet. Weston didn't seem to mind the rain and he liked looking at the fish.

On Saturday we went to C's parents' house so C could install thier new computer. The boys were good and played in thier little cardboard "house" again. They also added another "house" and I joked that next time we come they will have an entire shanty town set up.

And yesterday hooray I got to go out and finally get my hair cut (and shop). I was a little late coming home and I don't think C was too happy that this year during the superbowl he was stuck at home watching the kids by himself. I really wasn't that late so he did get to watch most all of it in peace:)

Thursday, February 02, 2006

Captopril

Captopril is a common medicine taken to reduce blood pressure.

We had Hunter's Captopril filled at a local pharmacy. Everything was fine la di da. Then all of a sudden the pharmacy switches hands and has a new name "Thatcher's", and new pharmacist.

I discover this when I go to pick up Hunter's captopril and it's not refridgerated. The pharmacist makes it over for me and says he didn't know it was supposed to be refridgerated. He left his notes in the bag and it says twice to refridgerate. Next month I call to have Hunter's captopril refilled and tell the lady answering the phone to remind him to refridgerate it. She says "I'm sure he knows that" with a high and mighty attitude. Next month C goes to pick up Hunter's captopril and it's not refrigerated, so they have to make it again. We are now thinking they screwed up twice, what if they really screw up on something serious? Also the price keeps changing. First it's ten dollars, then it's two , then it's eight. I questioned the pharmacist the first time and he said it's inexpensive to make. I just don't trust things when they keep changing.

The problem is the captopril Hunter takes is a compound. The pharmacist crushes up the correct number of adult pills and mixes it with distilled water. The big local pharmacies like CVS and Brooks don't do compounds. They aren't money makers and take too much time. So I had to call the cardiologist nurse to find a place that makes it and then call the insurance company to make sure the new pharmacy is a provider in network. Finally the new pharmacy is approved.

It is actually a place that specializes in compounds and they mix the powder directly and don't crush pills so his medicine is more accurate. A good advantage for Hunter is they can add any flavor you want. I requested grape and the first time Hunter tried his new medicine he said "umm juice". We are really happy with the new place except the price has more than doubled to 35 dollars. It doesn't sound like a lot, but it added up to over 250 dollars a year extra. I just don't understand why the same thing costs more. I'm not complaining though. We had to pay 100 dollars a month for his snyrgis. (RSV protection)I'm glad he's not taking that anymore.

Today's notes

Weston is clapping now and does it all the timen when he is happy. He is also really starting to cruise on the furniture. I think he will be walking by a year. Weston is going through a seperation anxiety phase and cries whenever I leave the room, or he is constantly hanging onto my leg. He follows Hunter too and gets into whatever Hunter is doing. Most of the time, they are so cute together. Today Hunter was "racing" across the kitchen and everytime he passed Weston, he would stop and give him a hug.

Hunter was crawling on the kitchen floor the other day and fell face first giving himself a bloody lip. The poor kid is all bruised up. He doesn't have any fat and bruises real easy. He fell in the parking lot on Monday and skinned his knee.

Today I brought them by myself to a kids museum. They both had a good time and were well behaved. Hunter loved the slide. Since it was a weekday not too many kids were there and Weston even got to crawl around a bit. They both went to be fairly early tonight. Weston was up to midnight the other night and they really haven't been sleeping well.

I'm so looking forward to warm weather.

HLHS ethics and Dr.Norwood

http://www.savinglittlehearts.com/news2.php

The above link is from a CHD support group called saving little hearts. I don't know much about the group yet, but the link above features a news story about Dr. Norwood. It is an interesting article, but very long if anyone wants to read it. If you are a parent with a HLHS child, I strongly reccomend that you do read it. I heard that Dr. Norwood was fired and there was some controversy over a new procedure, but I didn't have much information on it.

Anyway, the article is interesting. Here are some of my thoughts.

Question everything and make sure you understand what you are signing giving consent too, etc. I don't think I questioned Hunter's procedures enough. I was in shock still, even for the second operation. I remember that the doctors didn't even mention leaky tricuspid valve until we were checking out of the hospital after his first operation.

Would I allow an experimental procedure be done on my child? Of there was no choice of course, but what if it could have saved him from the third open heart operation he now faces. I hear some hospitals in Canada are performing new second surgeries that allow the third to be done by catherzation.

Did Dr. Norwood go too far "perfecting" his procedures? If he didn't work so hard in the 70's then Hunter wouldn't be alive today, but how much is good enough? No parent would want to risk thier child's life just to save future children. You just can't. So if it worked should he have left it alone? I think so ,and I think the parents of the children who died think so too.

Dr. Norwood definately has a God complex and went too far. However, look at all the lives he saved. It is sad that his brillance is being wasted.

Today's parents have a duty to research, research, reasearch, but I wish there was a list of questions to ask. Support groups do help.

There still isn't enough information on HLHS, even after 20 years. Doctors have still said we don't know. They don't know the long term effects and the link to many other complications.

Do I know where Dr. Norwood is now? No.

If anyone knows what happened after this article was written please tell me via my website.