Where do I start?

WELL....let's see...as usual, it's been a while since I last blogged. I'm sure it's hard to imagine that I have a few other things to do during the day that keep me from writing.

There is a lot to update on, so I'll just start with one kid at a time and try to get it all in, or else I'll come back later and finish. Let's just see what happens!

We'll start with Taylor, since, well, it should be girls first, right? Also, because her news is what has put a spin on our lives lately! She had a runny nose for about a week and a half. It ran clear, so I wasn't alarmed. With CF, any cold can become a problem, but in our experience, usually a clear running cold (ok, snot), isn't a big deal. If it were to turn green, we'd go get an antibiotic. However, this runny nose led to a cough and it got progressively worse until it was just really bad last Wednesday (July 30). She was breathing fast and her cough sounded awful (that's the technical term!). I had been in Tampa that morning with Jackson for his MRI, which I'll comment on later, so when I got home, I decided that she needed to see the Dr.
Her pediatrician was not in that day, so we saw one of his partners. The nurse took her vitals and weight and I was concerned with two things. First, I noticed that she had only gained 5 oz. in the past 4 weeks. That's NOT good. She's very small for her age already. Then, we found out she had a 101.2 fever. She had felt warm to me, but she always does and every time I took her temp, it showed normal. I had not taken it that day, though. As the dr. looked her over and reviewed her symptoms, I mentioned that she also has CF (I never know what they pull from her chart before they walk in the door). Immediately a light went off in his head and he said, she needed to go to the hospital. Ashamedly, my first thought was, "No, I have a conference to go to this weekend." I know that it's not uncommon for a CF patient to be hospitalized for 2-3 weeks at a time.
So, I went home and grabbed a few of our things. Made arrangements for someone to fill in at church and took her to the pediatric floor. There, they did a chest x-ray, some blood work, a sputum culture and hooked her up to an IV and antibiotics. They continuously monitored her oxygen levels.
Despite all the poking and prodding and unfamiliar territory, Taylor was a trooper and so happy all the time. The nurses and other staff fell in love with her and we had many offers to take her home! I always figure they say that to everyone, but I even heard them talking outside our door, to each other, about how cute she was! She is.
To make a long story short, after many breathing treatments and frequent nasal suction, she seemed to be doing well. The dr. couldn't release us until they determined what had been growing in her sputum culture so they would know how to treat her. In the mean time, RSV was ruled out and they were talking possible pneumonia. I talked with the nurses and the dr.'s and determined that it would be okay for me to go ahead and leave for San Fransisco on Friday. If that trip were for ANY other reason, I would have cancelled, no questions, but, this was the big CF conference that I have been working towards for several months and many (many of you) donated money to make it possible. The friend from church that she was going to stay with that weekend (had she not been in the hosp.) offered to stay with her as long as she was in and then take her home if she was released. I knew she'd be in good hands and there wasn't much I could do for her, so I went. It was not easy leaving her there, but I knew it was going to be worth the trip.
She was finally released on Sunday afternoon. They determined that the bacteria in her culture wasn't serious and could be treated with antibiotics at home. Greg went up to the hospital to sign all the discharge papers and help get Lisa and Taylor to her car. I got home Monday evening. I looked through all her hosp. notes and discharge papers and they mentioned pneumonia, but no one had actually said that's what it was to Greg or Lisa when she was being discharged, so I was unclear as to whether that was her diagnosis or not.
Today, Wed., she had her CF clinic appt. (good timing!). They had been informed of the hospital stay and I believe were consulted while we were there, but I brought all of the medical records and x-ray (on CD) with me. Her dr. reviewed the x-ray and told me that she did indeed have pneumonia. SO....added to her 4x's a day breathing treatments, 2x's a day antibiotics and additional chest therapy are 3 more breathing treatments (two are an inhaler used with a holding chamber, one is with her nebulizer), and another BID (twice a day) medicine. This should be interesting!
On a positive note, (and taking into consideration the difference in scales), she put on a pound in one week! YEAH!!! So, maybe the illness was keeping her from eating all she would have otherwise and hopefully her weight gain will continue. My biggest fear, these days, is hearing "G-tube" enter into the plan, so as long as she can put on weight by herself, we're okay.

I guess that's as far as I'm going to get for now. I'll just quickly mention that the conference was great and I'm glad that I went. It was the right decision. Thanks to all who helped me get there. You should hear from me soon (I'll try!) with more details and a thank you note. But, please know that I'm very grateful!

Sick

Well, four of us are sick. Really sick. It's all a head cold, but with major nasal congestion. Lincoln started it last Sunday. Taylor woke up Monday with the sniffles and Wednesday, it was my turn. I thought Jackson and Carter were gonna make it through unscathed, but Jackson started showing symptoms Saturday night. So, Greg and Carter made it to church today. I will keep our nasty germs here and not share them with our church family. They tend to like us better with that arrangment! I wish everyone was that careful. Then maybe we wouldn't be sick! It's hard to say. You never know where you pick up these germs. Could be a grocery cart, a person, a dr.'s office...yes, ironic, I know. You can wipe everything with Clorox wipes, but then you're dealing with toxins that you and especially your kids really shouldn't be exposed to. So, what's one to do? This time, I did cave in and buy the wipes. I keep wiping down things like the phone, doorknobs, computer keyboard and mouse, light switches and anything else I can think of that might be contaminated.
Everyone has been giving me suggestions of what I need to take so that I can breathe (something I have come to enjoy and no longer take for granted). So far, nothing has been a "life saver", though I think some of it has helped a little.
On a positive note, I can't smell Lincoln's nasty diapers! Problem is, I don't always notice he needs changing right away. Oops! Forgive me, Lincoln.
Right now, I'm enjoying a bowl of Chicken Noodle Soup. I'm not sure if it actually helps or if it's just "the right thing to do" when you're sick. It's just comforting I guess. I'm also having some saltines crackers with it. Since my congestion is overriding my taste buds, the salt taste especially good to me. Helps me to know I'm not just chewing on cardboard. Or, at least unsalted cardboard.
Sorry...if my humor does not humor you...blame the illness!!!
By the way, tomorrow is our 7th wedding anniversary! Seven years, four kids, two dogs (only 1 left), and currently, little sweet ants. They are easy to get rid of, usually. Terro is amazing! If you ever have an ant problem and they are SWEET eating ants, look for Terro. Every year during the rain season, we see ants. Usually, it's the red, biting ones. I HATE those. They make me so mad. The black, sweet ants don't make me mad. They don't bite...and they're tiny. They are actually entertaining. Watching them travel to and from the poison, I mean, lovely gourmet meal I so lovingly put out for them, is fun. It's interesting watching them communicate with EVERY ant that comes in the opposite direction. It's truly like a divided highway, expect they have a front end collision with every ant...and yet no damage. Amazing.
Okay...I'm done...I guess. :)

Good Results

Taylor had her CF check up a few weeks ago and this time she did NOT culture any Psuedanomas! So, we don't have to put her on TOBI again, for now. It's not easy giving an infant a breathing treatment. It's not easy giving a toddler one either! lol
Lincoln had his CF check up yesterday and he's doing great! He weighs 28 lbs. and is 31 inches tall. He's at 78% on the weight for height growth chart, which for CF, is amazing! He's been on very few anti-biotics in his lifetime and his lung function is great! Thank you LORD!
Jackson and Taylor go next Wed. for their CF check-up.
Carter finally got his "kindergarten" shots and we are ready to get him signed up! He's so excited. I'm not as excited as he is...it just means he's growing up and I know it's going to go by so fast. But, it is fun watching him grow up. He's so funny. If you don't know him well, and you ever get the chance, just sit down with him and have a "normal" adult conversation. You'd be surprised at how "old" he sounds for only 5 years old. But, he likes being a kid...he does well with other kids too.
This week is VBS at our church and we are having a blast! This year is "Power Lab". Group Publishing does a fantastic job and putting a VBS together and making it easy for your helpers to do their job (like the snack coordinator, craft director, etc.). I'm the VBS Director and Greg oversees building the set and then he and I and this year another Pastor are the "upfront" people that can be goofy...well the guys are goofy, I'm the "straight man!" We have so much fun doing it, but I'm exhausted now! Three nights down...two to go. =)
Have a great day!