Low-key

Low-key is the theme of the day around here. The weather is nasty and cold. It’s the kind of day where I take a shower and get back into PJ’s. Little Man still hasn’t left his.

We are hanging out, playing with puzzles and watching movies.

Some people took the low-key theme seriously.

You can’t tell from the picture but Ben’s vest is on and loud. This is only the second time he’s fallen asleep while it’s been on. I didn’t have the heart to wake him or remove the jacket, so I unplugged the tubes and let him snooze.

I even joined him with a nap for myself. It’s hard not to enjoy days like this.

GS meeting

This year I’ve been asked to be on our Great Strides planning committee for the Sacramento chapter and I am so excited! I feel like I’m finally in a stable emotional place to participate. The first year, Ben was only two months old and we were fresh off a 3-week hospital stay. I was lucky my hair was brushed let alone able to make the walk. Last year, I knew what to expect and was more prepared. Well, this year is going to be the kick off year of many great walks to come!

I attended our first meeting last night and was excited to learn that I was the 7th top walker (out of roughly 800) earning almost $3,000 towards my personal goal. Even better, our team, Ben’s Brigade, came in 5th (out of 65) earning almost $6,000!!! Woohoo!! It’s all thanks to you and the power of networking! All walkers on BB donated and worked at getting other donations. We are in this years pamphlet and I couldn’t be more thrilled. I already have one saved to show Ben. I can’t wait til he’s older and I can show him how much people loved and supported him. Seeing those results are just what I needed to get me even more fired up for this year!

We talked about many things and I came to realize, A LOT goes into planning GS. We have a coordinator through the CFF and 4 other moms to help out. I got lots of great ideas on how to raise money for our team besides asking people to just donate. My goal is to always make the “Top 10 walkers/teams” every year from here on out. I have a couple tasks which include walking into Kohls department store, talking to the manager and asking them to have some employees donate their time and volunteer during the walk. Five years ago, I would have been mortified to do this but since I’m walking in and asking them to support Ben, I couldn’t be more confident.

This year, I’m going to be making a banner for our team that we can use every year. I’m also going to start getting donations for our raffle. If anybody in the Sacramento area (or anywhere!) has items or services to donate to the raffle, we’d appreciate it! Ryan is going to try and get some of his Dentists to donate whitening services, which would be huge.

As you can tell, I’m really excited about everything this year. It feels good to be behind the scenes more and get involved. I’m also working on recruiting people for their wine tasting event, Spring for a cure, that will  be held in Folsom in April. If you are interested in the event, click on the link to register.

Lots more details to come!!

Sicky

I can’t believe that February is almost over! Where did the time go? Before I know it, I’ll be in Minnesota throwing back a glass of champagne with Jen. I am so looking forward to meeting her and taking a mini-vacation with Ryan. I have a feeling her wedding will be here before we know it.

This weekend was low-key. Ben woke up Saturday with a fever, the highest he’s ever had (103). But it went down with Tylenol and Ibuprofen so I wasn’t too worried. He got to lounge around and eat popsicles all day so he was pretty content. I’m fairly certain we picked it up from one of our playgroup friends but after a day, he was fine. He hasn’t had a fever since Saturday so I’m happy to say, we’re outta the woods.

The only bummer was that we missed our first birthday party of the season due to his fever. His energy and appetite were fine, I just felt it was too soon to take him around other kids. Thankfully, we’ll be back to all our normal activities this week!

My activities this week include shopping for Ben’s Toy Story party. I don’t want to leave things til the last minute so I’m starting now.

Ben is continuing to handle his treatments like a stud. I am so thankful for his positive, easy going attitude. It looks like he may also need a haircut before his party too….

The many faces of misbehavior

This is what my sons face looks like when he's doing things he shouldn't. Things he knows he shouldn't be doing. Like splashing and throwing his cars around.

Instead of disciplining, I laughed and grabbed my camera. I'm sure I'll pay for it during tomorrows bath.

Slacker

I feel like I’ve been a slacker on posts this month. We’ve just been busy!

Ben’s Tobi treatments are going fabulous. It’s like he sensed my anxiety about them and is doing his best to cooperate. It’s been so easy, something I’m very thankful for!

We are gearing up for Ben’s second birthday (March 12th) and I am super excited for it. We will have a bounce house, popcorn machine, piñata and barbeque. Plus, multiple Toy Story themed events! I know some families do birthday parties every other year but I can see us going all out for Ben’s. It’s a time for us to celebrate Ben being healthy and taking CF by the horns. It’s a time to pat each other on the backs, knowing we made it through another year. In the 1950’s children with CF were lucky to live to see their fifth birthday. Every year is something to celebrate!

I’m sure there will be a bit of mixed emotions. My baby is growing up, something I am thankful for but sad to see. This weekend I realized he’s too tall for his pack n play so I ordered him a kid-sized blow up bed. No more cribs for this guy! My “little” Man is growing up!

Just what the doctor ordered.

A trip away was just what the doctor ordered. Ben’s cough has vastly improved, it’s almost gone. He’s been running around outside, chasing the dogs, playing with his Carmel toys and LOVING the Aquarium.

Usually he runs around pointing out different exhibits, but today, he actually stopped and stared at the tanks. Never mind the fact that it was the Finding Nemo tank (our current favorite movie), he actually took the time to look around, not just blowing past each tank.

We spent two hours at the Aquarium, enjoying all it has to offer.

He had to line up the giant blocks. Like he does with his cars, chairs, and pretty much, anything else he can get his hands on.

Ben was on his best behavior all morning. He even wore the apron that keeps his clothes dry.

We couldn’t have asked for better weather. Or a better day.

Some fresh air

Ryan left us this morning for a 4-day business trip. He usually doesn’t like me saying he’s going to be gone because it leaves Ben and I vulnerable (in the vicious suburb that is Folsom ) but since Ben and I are gettin’ outta dodge, I thought it’d be safe to tell you.

Manny and I are headed down to my parents for the weekend. I thought some fresh air and a change of pace would be good for both of us. While traveling with Ben isn’t light, I don’t want CF/medical equipment to stop us from doing activities. Of course, we’ll go to the Aquarium, the park, and visit friends/family. Perhaps some salty air will help clear out Ben’s lungs and nose.

He still has a wet cough and a crusty nose but they seem to be improving. I don’t expect his cough to go away for awhile, Tobi can often make a cough worse before it gets better. He’s been doing fabulous with  his Tobi treatments, something I am VERY thankful for. He is such a stud, who continues to amaze me with all he endures.

I’ll leave you with a picture that best describes his “helpfulness” lately.

Sunny

It’s sunny around here.

The weather has been beautiful (mid-70’s) and Ben has been a lot better.

Still a wet cough but we finally have our Tobi to start treatments. I teeter between being happy we have it and feeling sad. I’m thankful there are meds to treat the pseudo but am sad we are here. I wanted to hug the UPS man then flip him off. I’m sure my other CF moms know what I mean.

So, our Tobi is now nestled on our top refrigerator shelf, between Ben’s Pulmozyme and a six pack of Corona.

Blah

Ben’s cough has gotten worse today. It has slowly turned wet throughout the day.

We started Cipro yesterday but Ben HATES  it and I don’t blame him. It’s like watered down chalk, not a good texture. It took both Ryan and myself to get it in him this morning and a few seconds after, he threw up. So, we are stopping the Cipro and have started Bactrim.

Luckily, our NP gave me her cell number and I got in touch with her this afternoon. We’ll be seen Monday morning to make sure nothing worse is going on.

I just want to start Tobi and get the Little Man better.

So, blah is how I feel today. While I only got one decent dose of Cipro in Ben, it’s already done a number on his tummy so we’ve had to change at least 6 diapers already today.

The good news is that his energy and appetite are good so the smile on his face always brings a smile to mine.

The waiting game

I was expecting Ben’s Tobramycin prescription to arrive today but unfortunately, due to the massive storm in the Midwest, the pharmacy wasn’t able to get it out to us. We have to wait until next week to even start.

I’m super bummed because it just delays us starting our two month cycle. Ben’s cough is getting worse and he’s in a bit of a bad mood. I’m not sure if this is attributed to the pseudo or something else but I’m even more eager to start. I begged the pharmacist, asking her to send it earlier, but she said there’s no way and we can only get the medicine from a few select pharmacies, mostly located in the Midwest.

I even called our clinic hoping they’d have a sample for us to start with through the regular nebulizer, but nope. This means that we’ll start our new treatments the day before Ryan leaves for a business trip for 5 days. I will be doing them all by myself, added time included, for 5 days straight.

Our NP is talking to Dr. N about possibly starting him on Cipro just because I feel something needs to start. But then again, I don’t want him to take antibiotics if it’s really not going to help. The whole thing just makes me anxious.

Sigh. I’m trying my best to stay positive but I’m having a really, really, hard time.

The Plan

Wow, you guys are awesome. I have received so many comments of love and concern. I DO realize that culturing pseudomonas is minimal compared to some other CFer’s especially, Skye, Logan, who is being admitted tonight for his g-tube, and of course, Conner. But it was a hard day for me and I appreciate everyone joining me in the trenches.

I knew it was not going to be good news before our NP even called me. I had called her early yesterday morning, eager for the the results. When I hadn’t heard from her by noon, I knew what was coming. Our NP is awesome. She wouldn’t call me just to tell me the results. She wanted to have “the plan” figured out. Of course that meant she’d have to talk to Dr. N before she called to tell me.

That’s exactly what I got. She gave me a moment to sob into the phone before telling me that we were going to start a 2-month straight Tobi cycle through the eFlow nebulizer. This will help cut down Ben’s treatment time especially since he does Tobi after his vest. Dr. N believes Ben kicked pseudo the first time, he just unfortunately, picked it up again. Therefore, we are starting out on Tobi again.  I don’t know what the long term plan is (IVs, Cayston) and I’m not trying to figure it out now. We’ll just take it one day at a time. Ben will not start Cipro (an oral antibiotic), like some CFer’s who culture pseudo, because he says there’s no significant research to back up the fact that it helps. However, if he cultures it two months in a row, I’ll request we start it. Can’t hurt.

The pseudomonas growth in Ben’s culture is “minimal” compared to the “moderate” growth he had when we entered the hospital in Aug ‘09. There is a good chance he can kick it with Tobi since we caught it so early. I am so thankful I am in tune with Ben, and picked up on the signs.

I think the hardest thing for me, is that I finally felt like we were “ahead” of CF for the first time EVER. Ben has yet to have a cold this winter and I thought that we could make it through with little to no sicknesses. I have been extra vigilant with hand washing, treatments, not going around sickies, cutting down on time around other kids, even getting extra vitamins in. But clearly, I can not protect him from everything. The results were like a slap in the face, that I can not control everything and that CF has the upper hand. This too shall pass though, and in a few days I’ll be back to myself.

Like I said before, I can’t thank people enough for their encouragement. The CF community is there for us when I need them and that makes a world of difference. Of course, the smile on this little guys face, during his impromptu play date yesterday, keeps me going as well.

(please excuse, the mashed up animal cracker in his mouth )