Tuesday, August 25, 2009

Vegetables? FINALLY!

It's finally happened. Samuel wanted to eat veggies! After months and months of putting the on his plate/tray and watching them end up in Lucy's mouth (Lucy is our dog), he was shoveling them in like it was going out of style. Of course, they were smothered in butter. How do you eat YOUR veggies?

Some other quick tricks I've learned recently: Grating carrots into mac N cheese is a good way to sneak in some veggies, which, apparently, I don't have to do anymore! We really like Easy Mac because it's a great portion size for Samuel. Husband and I don't need to be eating mac N cheese as much as Samuel does. The cool trick, though, is to add a little heavy cream to the cheese mix. It makes the cheese sauce creamy, obviously, but not watered down. It's a great way to add extra fat and calories. I'll share more tips as I come across them.

The past few days, Samuel has been learning something new. Seems like it's been faster the past few days. Friday, he came home saying "You're BAD!" and pointing his little finger. I'm pretty sure he's seen his father say that to Lucy a time or two because we DO NOT say that to him. Miss Amy does not say that to him. Her words for unacceptable behavior are "That's naughty" My choice: "That's not nice" or "We don't do that." It makes sense because he's mostly telling the DOGS they are bad.

By Sunday, "You're BAD!" turned into "You! You're BAD! Alright?" This of course, was met with, "No, that's not alright. I'm good!" But, like I've heard, you can't reason with a toddler. This is still true, in case you were wondering.

Did I mention Samuel received a gift this past week? He brought home a Mr. Potato Head and was delighted to play with it. I could hardly believe my eyes when he was still sitting in the floor playing after about 10 minutes. And it was at that moment Mr. Potato Head went flying across the room. It does sorta look like a football...

In my last post, I mentioned my guest blog and compared to time when I had to give a speech. Now, for those who have asked, it was NOT a coincidence that I did NOT mention the topic of my speech. Those who know me and my family may know it already. But those who don't, well, you've already got enough information about my perspectives. There's no need to discuss anything else controversial.

Friday, August 21, 2009

You are in the right place

Recently I was taking a critical look at the blog and it was starting to bother me that everything was so, how do I say it, so...Uhhggg. It was brown. Very brown. Not really the right color for the mood of this blog.

A few weeks ago I declared I was taking a stand. While it may appear I haven't been doing much by the looks of the blog, I assure you, things have been brewing.

I was asked to guest blog for my friend Ronnie at RunSickboyRun. He recently updated his format to include a Sound Off Saturday and is showcasing some different perspectives on the issue of health care reform. You should pop over and take a look. And leave a nice comment for me! :)

Honestly, this has been a HUGE step for me. I normally don't get involved in any issue that is a bit controversial because I hate confrontation. In fact, during my public speaking class in college, one assignment was to take one side of a contentious topic and explain why we held those opinions. I really didn't want to participate in this assignment. This wasn't debate class, for goodness sake! Of course, it was required so I did, but it required taking some risk which I wasn't comfortable with. I just like to keep my opinions to myself than have confrontation. BUT, in this case, Samuel can't speak for himself; he relies on me to speak up for him and keep his best interests in mind.

What else is happening? Oh yeah, I'm going to D.C. I feel like the real life version of Legally Blonde 2. Somehow or another, I managed to get invited to participate in a press conference on this very topic. I'll be sure to post more details as I get them. Details such as time and place.

If you are coming here to check on Samuel, well, this is a bit of an update. Wednesday I got the call that I have been able to avoid for the past 21 months. Samuel's last throat swab at clinic grew a scant amount of pseudomonas. Today (since it's 1:45 AM and I'm still up with Samuel) we start Cipro and TOBI and he will be on those for the next two and four weeks, respectively. We've been very spoiled by our MDI with spacer instead of neb treatments. The new drugs have me bummed, for sure, but strangely enough, I'm more concerned about the mask/neb treatments on Samuel's mental well-being.

Thanks for checking in. I know I don't have pictures but that is because I'm on a new computer and have NO pictures of Samuel here. Sorry. Maybe by my next post I'll have it together. Maybe.

Monday, August 17, 2009

When it really comes down to it

...we are so blessed. I've been thinking lately about what a miracle Samuel is. He is truly a gift from God. There is no other way around it, he's a miracle. It's just another benefit that he has CF.

A benefit? What, you say? Surely, Mrs. Samuel's Mommy, you can mean that. Well, I do. See, we have the opportunity to teach others about all kinds of things like, faith and trust, being obedient, and mostly, being thankful for what we have. On Samuel's last clinic visit, I was out of town. But every time we go, I'm reminded of how fortunate we are. We usually have to talk about poop and get new instructions on how to help Samuel get those cherished thigh rolls. We might get a new prescription for a new drug Samuel hasn't been on before or information about a hypertonic saline study. 

Whatever it is, it can sometimes be overwhelming. 

BUT, when we leave, I ALWAYS see another little boy or girl at Phoenix Children's Hospital who doesn't get to go home that day. Sometimes they have a feeding tube and are in a wheelchair. Sometimes they've endured chemo and have lost every strand of hair. It always touches my heart because on THAT day, I get to take my baby back home. We are only there for a visit that day. What a blessing.

Thank you, God, for trusting Kevin and me with this opportunity to be a light for others who don't know you. While admitting we are far from perfect, help us to be a good example. Thank you for this little boy you have given us because he truly is a miracle and a gift from you. Samuel is yours. And thanks for letting me hold him for just a little while.

Thursday, August 6, 2009

still working...

Just wanted to let you know, I'm working on this healthcare thing. I'm a bit busy right now but things are cooking.

I've been invited to participate in a press conference in DC next month on behalf of families just like mine. It's an honor to take a stand for what is good and right for my family and I'm not ashamed to be counted.

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