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.

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.

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.

I'm taking a stand. Join me?

I decided today that it's time for me to take a stand. I am not going to sit here, with my little man, and wait for this health-care reform to happen without putting up a fight.

While I collect my material and do a bit more research, please read this and think about how it will change the way you use the system you have today.

If you would like to share information with me, please feel free to leave a comment.

Thanks. There WILL be more on this...

The results are in

and, to quote my doctor, "There is no cancer here." I don't need to see him again and I don't need to do anything else that requires a smooshing-type action for another 10 years.

The best "get lost" I've ever heard.

Samuel is getting ready to grow. He has been eating a LOT, even breakfast which usually doesn't interest him. He slept for 13 hours last night - straight through. I better start shopping for some new clothes for his skinny little rumpus.

And! HUGE NEWS!!!

Samuel peed on the potty today! We haven't officially started potty-training but Miss A is helping him. I think I will spend most of the day Friday and Saturday training us to go every 30 minutes. Fun fun!

How the Kelleys are falling apart

It all started last Wednesday night.

Samuel's room was just painted a beautiful blue. I (his mommy) was rearranging the furniture. Since things were a little out of order (typical in our home), Samuel found a bar from his pack-n-play and was playing with it, putting it in his mouth (again, typical). It's about 18 inches long, or so. Unfortunately, Samuel got bumped and the bar got jammed in the roof of his mouth/back of the throat. He bled for a while, we prayed really hard for a little while, called 9-1-1. He had a big gash so we ended up taking the ambulance to Banner Pediatric ER. He didn't get stitches but they did tell me to keep it extra clean. And to do that, have him gargle with some water/hydrogen peroxide, but DON'T LET HIM SWALLOW IT. And how do they suggest I do that? "Just dab some of the mixture on there with a Q-Tip." Riiiiight. OK. I should have asked them to show me. That would have been funny. 

This is how it ended...finally: (just not quite so, uh, side-ways)

After a few days, his mouth has healed to almost as good as new. However, he since developed a cough, possibly unrelated to the gash, possibly because we didn't keep it clean enough. But that too, however, is just about gone. He's back to himself, as evidenced below: (sorry they are so dark)

Playing the pot:

Playing the pot Part 2:

Couch Diving:

Meanwhile, my procedures have gone off without incident. The needle biopsy revealed nothing we didn't know already: I have fatty tissue in my breast. It's a shocker, I know. To get to the bottom of it, we just decided to take the lump out, no matter what it was. That was done on Friday morning and now I get to wait yet another week for them to tell me something else. Friday was a nice day of rest with me sleeping off a demerol-induced haze. Demerol makes me not even know I have a breast, let alone that it was cut into earlier in the day. As the demerol wore off, I down-graded to Vicodin. I thought it was somewhat sad that Samuel and I were on Vicodin at just about the same time. He got some for his bar-in-the-mouth incident. Recovery has been pretty quick and seems to be going fairly well.

This is completely off the subject, but I was just thinking... I passed a place today that was called Valerie's Hair Creations. I wonder what Valerie creates out of hair? What kind of hair does she use? Sounds pretty gross.

A few weeks ago we had to have a plan B while Miss Amy was out of town. Our summer Plan B means Miss Amy's sister, Miss DJ, comes over. She frequently helps so is familiar with Samuel and his special needs. While at our house, she also took some amazing photos of Samuel. She is very talented!

Blowing on french fries with daddy:

Saying "cheese" with his first ice cream cone!

A long weekend

It's been a long weekend. Not just for the holiday, but other reasons too. 

Let me be honest and say, I wasn't going to talk about this, but there is probably someone else who is or will be doing this at some point in their lives. At any rate, here goes with the true confessions:

I'm 30. (Whew, that wasn't THAT bad!)

A few weeks ago, I found "a lump". The kind of lump women don't like to find. I didn't think it was really bad, but I just wanted to hear someone, who is closer to an expert than I, tell me it was nothing. So I scheduled a doctor's appointment.

I went in for some screening tests and mammogram. Let's just say, this isn't something I would enjoy doing regularly. Again, I'm just waiting for them to look at the results and say "this isn't anything you should worry about."

Instead I hear "This is abnormal and we highly recommend a biospy."

Me: not prepared.

So what made the weekend so long was having a biospy scheduled for Monday, yesterday. And let me just say one thing: 30 is too young for someone to have TWO mammograms within a month!

I'm still waiting for the latest expert in my life to tell me this isn't something to worry about. I'm just remembering, however, I know the Ultimate Expert and He has reminded me that "He was pierced for our transgressions, He was crushed for our iniquities; the punishment that brought us peace was upon Him, and by His wounds we are healed." It will all be OK.

Let's talk about Samuel.

He is doing great. I can't believe I let him play in McDonald's Playland (a.k.a. GermLand) yesterday for longer than 30 seconds. I CAN believe, however, than I pretty much hosed him down with hand sanitizer every time he came out and before we left. It was a friend's birthday, so this special occasion will probably be the ONLY time we will be in there. I was very impressed with his fearless ability to climb and stand up to the bigger kids there playing with him.

This is the ONLY hat he will wear for longer than 3 seconds. It's so cute!

A few weeks ago I had decided to give up trying to keep him from getting the pots and pans out every time we were in the kitchen. He gets them out, I put them away, it's this fun cycle we have going. I decided I don't care that I have to wash them when I want to use them. But Samuel surprised me. He took them all out play while I was working on other things. A few minutes later, I looked down to make sure not to step on a pan and, to my surprise, there weren't any in the floor. Figuring he had taken them all to the other room, I went around the corner to find his trying to close the cabinet door. He had put all of the pots and pans BACK in the cabinet where he found them, he just couldn't get the door completely closed because there were just a few handles sticking out, as you can see below. I'm so glad my requests to "put it back where you found it" haven't COMPLETELY fallen on deaf ears.
Speaking of the little munchkin, I better go take care of him. My evenings are getting shorter and shorter, it seems, since he's napping less and less at Miss Amy's.