I came across this video and just had to share.
We hope you can join us May 21st to walk for Anna, Ben and all the other CFer’s who fight against CF everyday!
Ben’s Cayston (inhaled antibiotic) arrived today, courtesy of the UPS man. As usual, there were mixed emotions. Wanting to hug the man then slug him just like with the arrivals of Tobramycin. Only this time, the medicine was in a HUGE box and I quickly came to learn that Cayston was a bit more complicated then Tobramycin.
It took over two weeks for us to finally get the prescription due to insurance. No insurance is going to approve a $5,000 medicine laying down and they needed prior authorization from Dr. N before they would approve it. Our NP was out of town last week so it took longer then expected but we welcomed a small break.
Cayston is a new inhaled antibiotic only an the market about a year. While this may lead some parents to hold off on it’s use in such young children, I am more worried about the pseudomonas sitting in his lungs. Since the drug is so new, I don’t have any experience with it and neither do most of my CF mom’s.
The bad part is that Cayston is administered three times a day. That’s one dose out of our usual routine of two so that will take getting used to. Luckily, it’s given through the Altera nebulizer which is super quick. Each dose is around 2 minutes long. Not too bad.
Cayston comes in a huge box that needs to be refrigerated so I had to make room on one of ourselves for it. Each dosage comes in two parts, an ample with sodium chloride and a vial with powered stuff at the bottom. I have to mix a vial and ample together then put in the nebulizer.
Luckily, the box is very organized so I can easily keep track of what does I have given.
I’m not sure what the over all “plan” is yet but am talking to our NP and Dr. N about it. I know they’ll take my opinion into consideration and I’m hoping to do two straight months of Cayston, then culture Ben and then start on/off months until we get three free cultures. There is no talk yet of IV’s again and am I okay with it. I have heard nothing but great things about Cayston and will continue to keep you updated as I know some CF moms are waiting to hear how we like it.
As usual, my little man is being a stud about starting a new medicine. I am so thankful for his amazing attitude, it makes life so much easier.
It still seems to be a roller coaster around here when it comes to sleeping. Ben has gotten better about going to sleep at night, the problem is keeping him asleep.
It looks like Ben inherited my night owl gene and I’m totally okay with that. I’d rather go to bed late and sleep late, like him.
So we’ve been keeping Ben up later at night and starting a new routine. Part of the problem of him going to bed at night was that he thought he was missing out on the fun. It was taking him over an hour to fall asleep just because he was still too amped up. Ryan and I decided it would be good to unwind with him by watching a movie or cartoon in our bed all together. This also lets Ben know that we go to bed after him, we’re not sneaking back downstairs to play with his trains or color in his coloring books. Like him, we go to bed too.
We also decided to cave and get him a big boy bed. We found the perfect one at Ikea and let him pick out his bedding. It should come as no surprise that he picked out the car/truck bedding.
We’ve also been leaving his door open. While it’s a pain because Ryan has to be super quiet in the morning, it seems to be currently working.
I’m tired of crossing my fingers so I’m just hoping a new bed and routine are the key.
Thought I’d add a picture of my little monkey playing with his new birthday toys.
Ryan is a type A personality. If you know him, this is no surprise. He likes things clean and organized. I, on the other hand, am not.
As you can imagine, compromise is something we have to work on and I think we’ve both gotten pretty good at it when it comes to keeping our home organized. We’ve tried to meet each other in the middle and have come a long way.
I always wondered how Ben would turn out, meaning which personality he would inherit. Last week, I caught a glimpse into this question.
My mom brought Ben some play doh for his birthday thinking he’d really like the manipulative play.
Not so much.
He poked at it for a few minutes then decided to put it all back in the containers
and line them up in a straight line with the label facing front. Guess I don’t have to wonder anymore.
Phew, I’m finally getting around to writing about B’s second Birthday. What a crazy, fun-filled weekend we had!
Friday started out by letting Ben eat what he wanted all day. What does a 2-year-old choose to eat on his day of birth?
Breakfast- fruit snacks and chocolate milk
Lunch- Jamba Juice
Snack- fruit snacks!
Dinner- more fruit snacks (seriously), milk, chips and a couple bits of quesadilla (I had to get something in him)
The rest of the day was spent running errands and getting things together. Our parents and Ben’s god mom arrived Friday night and the celebrating began.
Saturday was the big day and I woke up to clouds. The whole party was planned for outdoors and I did not have a back up plan. Luckily, they went away pretty early and we had gorgeous weather the rest of the day.
Everyone pitched in and started the food, set up tables and monitored the blowing up of the bounce house.
Ben had the bounce house to himself for twenty minutes and just bounced his little heart out. He was already exhausted by the time his friends got there!
The kids got to play in the bounce house, play structure and with all Ben’s outdoor toys we brought out.
My parents and in-laws managed the BBQ and brought out the most delicious Tri-tip sandwiches. Yum! That was followed up by cake and an appearance by our own personal Woody.
Woody was courtesy of Ben’s grandma. There’s nothing he wouldn’t do for his grandson!
I can honestly say, we couldn’t have asked for a better day. The weather was gorgeous, Ben didn’t get sick, no friends had to miss due to illness, the food was delish and people really pitched in to help. Like I said before, we view Ben’s birthday as a time to celebrate getting through another year and to thank every one for their support and loving our little man like we do. Thank you!
This was the only decent picture I could get of Ben. He refused to sit still or smile. He was just too excited!
In the middle of all the craziness, we were able to fit in a clinic visit (as if it’s an option).
However, we couldn’t have asked for a better day. Ben did great on the hour and a half ride down, pushed his cars around on the patient table, and waved good bye to everyone as we left.
He is a little over 33 lbs which keeps him above the 90th percentile and is half an inch below 3 feet which is just above the 80th percentile. Of course, with numbers like that I have no room to complain and I did a little happy dance on our way to the room. I can’t take all the credit though, Ben is a physical clone of his father at the same age.
Ben’s lungs sounded crystal clear and he was also able to demonstrate how he can cough on his own for our NP. He is such a stud.
We made a few changes to Ben’s regiment. We upped his enzymes from 3 Creon 12’s to 4 Creon 12’s and if you’re at all familiar with CF or you read this blog, you’ll know the reason why. I don’t need to go into gory details.
We were going to start our second month of Tobi for treatment of his pseudomonas but I decided to switch him to Cayston for the last month. Cayston is a fairly new inhaled med that also treats pseudomonas. If Ben had continued to culture pseudo after our IV treatment of it (August ‘10), he would have been started on Cayston.
I’ve done some research on it the last couple weeks and have heard nothing but positive things so Dr.N agreed that it was a good idea to start. We also did 6 months on/off of Tobi last year and never kicked pseudo so I think it’s time to make a change. We’ll have a couple days break before our new prescription arrives.
TOMORROW Ben turns two. Maybe he’ll start holding his own nebs now.
Well, my lack of posts should give away how busy we’ve been around here.
Ben’s sleep issues are 100% better. He was going through some major separation anxiety especially from Daddy. He was anxious as we were heading up the stairs for bed and couldn’t even concentrate through stories. After reassuring him several times how much we love him, how we are just outside and pointing out that the door will remain open so he can easy get to us, seems to have alleviated the problem. He’s less anxious around bedtime but is still overly attached to d-a-d-d-y which isn’t a bad thing. I don’t blame the kid, Ryan is pretty cool!
Our fundraising for the CF wine opener has been going well and I can’t thank people enough for all their contributions. We are still selling tickets and if you’d like to purchase them click HERE. Even if you can’t attend the event, you can still purchase tickets and help raise money for the CFF.
I have been ahead in my party planning and am almost ready to go. I purchased Ben’s Toy Story party supplies from Party City and was delighted to see that they are sponsoring the CFF this month and you make a donation that goes to directly toward research. If you’re in need of party supplies, head on over there to support all those living with CF.
Besides a Costco trip on Friday, we are pretty much set. The Toy Story bounce house and popcorn machine should arrive on time and I keep praying (everyday) that we have decent weather. Because we have no Plan B
Things are starting to look up around here!
Ryan and I knew we needed to change something with Ben to get him back to sleeping on his own. So, yesterday we went and picked out a sleeping bag to help get him excited about sleeping on his own.
He passed up the Toy Story sleeping bag for his beloved Lightning McQueen. Of course, Ryan and I played it up, getting super excited and babbling on about how cool he’s going to look in his new sleeping bag (the people at Toys’r’us must have thought we were nuts!).
We put him to bed a bit later then usual, partly due to the fact that he took an extra long nap, and partly due to the fact that we were anxious with how it would go.
Well, a Lightning McQueen sleeping bad didn’t work. So we changed it up again, and rearranged his room.
Do you see the feet? I was trying to get him to smile but he decided to play hide-n-seek instead
Looks like a new layout and keeping the door open have done the trick. For now. Fingers crossed.
There are still 7 days until Ben officially turns two, but the terrible two’s have been in full swing the last couple days.
Sound exhausting? It is! While I know it’s completely normal, he has run me ragged. Time outs have been bountiful.
Screams when I put him down for his nap or bedtime. I let him cry it out in his room for a minute only to walk in and find him sitting on top of his dresser/changing table. So, leaving him alone in his room is now dangerous.
After having to lay in bed with him for a half an hour last night, I found myself googling toddler sleep issues only to find it could be a ton of things. Mostly just a phase. So Ryan and I think he needs a change or distraction. We’re going to either buy him a toddler bed or a new stuffed animal to sleep with and hope that helps because I really miss my “hubby time” at night.
The moral of the story is don’t be alarmed if you see me with circles under my eyes or I bite your head off. It’s been stressful lately. But we are SO looking forward to Ben’s bday next weekend!
We have a new “game” in our house as of lately. Whenever I get out Ben’s vest to start treatments, I unhook it and try to put the jacket on before I hook the hoses. The last couple times Ben has thought this is hilarious and has started running from me. Typical 2-year-old boy huh? LOL.
So, I’ve decided to go with it. For 10 minutes he runs around the house avoiding “the jacket of torture” as I call it. Torture because it means he has to sit still for a half an hour. A hard task for this guy lately.
But I’ve found that chasing after him before hand is a good thing. He burns any last little bit (ha!) of energy before having to sit. It gets his lungs open and him breathing deep which is good way to start off treatments, letting the medicine get in deep. And, we try to put a positive spin on treatments. We’ll see how long we can keep this up.
~ Thank you to all who have volunteered services or goods to our wine auction. We were in need of more donations and people have really stepped up. Thank you! If you’d like to purchase tickets to the wine tasting/beer tasting/food eating/auction winning/helping Ben event, click HERE!
~ Ben’s birthday is in 10 days and his birthday party is in 11! Gulp.
~ We have our CF clinic appointment on the ninth. We won’t be reculturing Ben because we are still in our Tobi cycle and have doubt that things have changed. I’ll take him in mid-April to be recultured and to figure out the next steps.