We had a wonderful Halloween this year. We went out to Rancho Murieta where Ryan’s aunt lives to Trick or Treat and do dinner.
As promised, here’s Manny in his costume…
Our little conductor :) He even blew his whistle.
Today, I drove Ben down to Pleasanton to be re-cultured. We are in our second month of three consecutive ones to be official declared “pseudomonas free”. We drove over two hours, each way, for a 5 minute procedure. That’s what you do when you love your CF team! While we were only there for a short time, I had them weigh Ben and listen to his lungs.
Our “little” guy now weighs 31 1/2 lbs, putting him in the 94th percentile!! Music to a CF momma’s ears! He’s also in the 92nd percentile for height! We are so blessed with how well Ben is doing in the height/weight department. That doesn’t go unnoticed by us!
I also had our NP listen to his lungs. He’s developed a slight, dry cough the last couple days. His lungs sound “crystal clear” so we are chalking it up to the change in weather and all the dust flying around as we are packing. Next month we’ll go in for our third culture but it will also be a full CF check-up at UCSF. I also talked to our Nurse Practitioner (NP) about showing me how and what to listen for in Ben’s lungs. Next month, I’ll bring my stethoscope
(the one Ben is wearing in his picture) and she’ll show me where on Ben’s lungs I need to listen and what they should sound like. I hope this will help us become more in tune with Ben’s body and be able to identify when something doesn’t sound right.
In time, I will teach Ben how to listen to his lungs, thus helping him to be proactive in his health. I truly believe that Ben will become more proactive in his health if I give him the tools versus me telling him to do treatments because he has to. In time, and when he has the maturity, I believe that Ben will do treatments because they make him feel better not because Mommy said so.
I also hounded her for any new info she got while at the CF conference in Baltimore last week. Parts of me hoped she’d say, “a cure is only a few years away” ( I can dream!) but our team tends to be cautiously optimistic. In the past there have been drugs in the CF drug pipeline that have fallen through and I think she wants to be cautious and not get my hopes up. However, she reassured me that there are multiple drugs in the works that should have amazing results. Only time will tell!
After we got back to Folsom, B and I jetted over to our new place to see the progress and to meet up with Ryan. I can’t believe how much work has been done and how great it looks! We are so pleased with how everything is turning out. Thursday is the official move in day and we can’t wait!!
It’s been busy around here. This weekend we managed to paint the entire house! Much appreciation goes out to my in-laws who came up for the day and painted their hearts out. We couldn’t have got it all done without you! Also thank you to my parents who watched Ben so I could paint and helped with painting on the second day. We couldn’t have done it without the four of you!
Our hardwood floors are going to go in today through Wednesday. Hopefully they’ll be done before then. We move Thursday and I am off to a wedding on Saturday. Phew! Makes me tired thinking of it all. I may have to squeeze in a culture run down to Pleasanton for Ben also, but I have faith we’ll get it all done.
Ben has also decided to start in on the Terrible Two’s early. Refusing to take enzymes, laughing when we discipline him, and generally thinking he’s in charge! Ha! Never a dull moment around here!
Also, I need your help. Pepsi is giving away lots of money each month to different organizations. The Cystic Fibrosis Foundation has been entered in the $250,000 give away for research on Hypertonic Saline (which B is on) in infants. This would benefit young children with CF greatly! All you have to do is vote daily. You can vote everyday until the 31st. You can log in through your Facebook or just sign up. You don’t get spam mail and it literally takes 2 minutes. Please sign up and vote. Vote everyday! You can go directly there by clicking the Pepsi link on my right hand bar. Thank you!! ----------------------------------------------------->>>>>>
It’s funny what you come across when packing. Old Halloween costumes, dress up items, and old holiday stuff. Well, we’ve come across some fun things today and I couldn’t help but share these photos since they’re hysterical!
Ben the nerd
Ben the bunny
Ben the train conductor
and lastly, Dr. Hughes
Finding a cure for CF?! We can only hope!
Things have been crazy around here! We are packing, finalizing our loan and should have our keys on Friday! Ryan and I are very excited to own our first home and even more excited to start this new chapter in our lives.
With all the craziness going on, we haven’t had time to do much Halloween stuff with Ben. I finally got his costume yesterday. I was surprised at how much of a selection there was left. I even got his costume on sale! I won’t reveal it now but I’m sure you can take a guess….. who is Ben’s favorite character??
Yesterday, we finally got to the pumpkin patch. We didn’t take any home because we will be moving the Friday before Halloween and it’s just one more thing to haul. However, we had fun running around with our playgroup, going through the hay maze, throwing dirt around, and pounding pumpkins!
He drove tractors
Watched tractors haul pumpkins (the coolest!)
Ran through the hay maze (by himself!)
Threw dirt and hay around
And of course, posed on pumpkins
The only decent playgroup photo I could get!
Today, Vertex Pharmaceuticals announced that they are starting the clinical trial in the combination of their two drugs, VX-809 and VX-770. These drugs are targeting the underlying cause of CF- defective or missing CFTR proteins.
VX-770 is targeted at the mutation G551D. Gavin has a copy of this mutation (along with DeltaF508, Ben’s two mutations) and should benefit greatly from these two drugs. From what I’ve heard, there is extremely promising results.
The VX-809 drug targets the DeltaF508 mutations which is the most common. Ryan and I are both carries of the DeltaF508 mutation which is why Ben is considered homozygous for DeltaF508 or a “double delta”.
The trial will evaluate the results of the VX-809 drug alone and in combination with the VX-770. The patients sweat chloride will be tested to see if there are any changes. VX-770 is currently in phase 3 and anticipates results in early 2011. Even though Ben doesn’t have the G551D mutation, it is thought that the VX-770 drug could help the VX-809 drug work better. He could end up taking both or just the VX-809. However, these drugs probably won’t be available to children under 5. I’m okay with that because that gives them another 3 1/2 years to get everything right, just in time for Ben.
There are no words to describe the emotions I get from reading news like this. Joy, promise, hope are just some of the emotions I feel. I would give anything and everything I have so Ben could live CF-free. Exciting news like this just gives me the hope I need.
If you’d like to read more, click HERE.
First, an update on Ben’s head. He took a major wipeout at the park on Monday. He was able to catch himself but not before the fall took a layer of skin off his forehead :(
The night of (with Neosporin on) & Tuesday afternoon
It seemed to be getting better but through his activeness he managed to split it open. So the last two nights he’s been wearing a bandage over it.
Yesterday, we got together with some of the ladies from our play group. One of the mom’s had set up pumpkin painting for the kids. It was a great idea however, it lasted mere minutes.
As I’ve said before, Ryan and I believe in positive reinforcement when it comes to Ben’s treatments. Now, that doesn’t mean he gets out of them if he doesn’t feel like doing it. It means that we try and find ways to make it fun so he’ll do them willingly. My hope is, he’ll learn in time how his treatments are good for him and make him feel better. I believe we can get here through positive reinforcement and giving the occasional break if absolutely needed.
The first thing I’ve learned is to not get frustrated or angry. Ben can sense this and feeds off it. I stay calm and work with him to get them done.
I also talk through the movie we are watching. Lately, he’s been all about the movie Cars. One of his favorite people, Auntie Megs, bought him the movie when we were at UCSF. We talk about fast Lightening McQueen (below) is going, their different emotions or colors. I basically talk through the whole movie! Some may find this annoying but not Ben :)
We also have the new PARI LC Sprint nebulizer. This has cut down on our nebulizer time. It’s easy to clean, bubbles the fish hooks up to it, and it’s just different from our old nebs. I highly recommend it!
I also have found that taking off bubbles the fish mask for awhile helps. I think the salt on the mask irritates his skin. He had some bumps on his nose because of it. May not be the best way but it works. I can see him inhaling the HTS and that’s all that matters.
Does anybody have any more tricks for us to try??
I have some random pictures of Ben that I thought I’d share. We had a great weekend, getting things together for our new house. We bought ceiling fans and are figuring out our moving schedule. By the end of the month, we’ll be in our new house!!
Yesterday evening, Ben decided to move his chair on top of the couch. He was watching Toy Story during his treatments and was so into it, that I let him finish.
This morning, Ben watched me feed his fish Carl. After I was done he wanted to get up on the counter. He proceeded to “feed” Carl in his own way.
He kept looking at himself in the mirror and making faces or sticking out his tongue. We have a little ham on our hands!!
We are trying to get out and enjoy our beautiful weather (mid 80’s) but have so much to get done around the house. I’m really trying to go through things and get organized before we are ready to pack. It’s time to start taking things off the wall!
There is really nothing significant about the date, I just didn’t have a blog title so I thought I’d use it :)
Yesterday, Ryan and I attempted church for the first time. Just the three of us. We’ve been wanting to go for awhile but I am NOT comfortable leaving Ben in the nursery. We decided that we need to start working towards going to church in the future so I stayed with Ben in the nursery while Ryan went to service.
The evening service works best for us because we move slow in the mornings. It made for a fun family night as we picked up pizza afterward. Ben loved running and playing around the nursery school room. However, when one of the little girls let out a gnarly wet cough, I realized I do need to stay with Ben at least through flu-season or until I feel comfortable. I may not make it into service but it’s a step in the right direction.
When we got home, Ryan put Ben into the bath. I asked him to trim Ben’s hair around his ears when he got a chance. Little did I know that my husband would just dive into the task when Ben was in the bath. One of his most active times. This is what you get.
Chunks missing from the side of my son’s hair.
I may have to take Ben into the barber today, ha!
At least it was a fun opportunity for a photo shoot. Ben was running around in just a diaper, hyped up after his bath.
Other CF mom’s said things (CF-wise) would get easier as Ben gets older and I can see that.
Ben can now take his vitamins (CF source) straight from the dropper versus me putting them in his milk. I no longer have to convince him to drink every last drop from his sippy cup to ensure he gets them all in.
He is starting to take his enzymes whole in a Starbucks straw. Starbucks straws are nice and big (McDonald’s is another great one!) and I can pop one it and he’ll suck it right up. However, it’s hard to get him to take 6 full strength sips of his drink. Yesterday he successfully took two enzymes at once but I am treading carefully. I don’t want to push him so we taking things slow.
He takes his Xopenex from his spacer like a pro. He hated it at first but now takes it easily. He takes a deep breathe when he senses the medicine. He even tries to push the inhaler down himself. However, he hasn’t quite mastered it!
We have never had a problem with Ben doing his vest. He even went up a vest size and received a brand spanking new jacket. Of course, we try to make it as fun as possible for him. We are always looking out for DVD’s or games we’d think he’d like. We want to make his treatment time as easy as possible. Sidenote: RespirTech now makes plugs to go into the tubes on the vest so it’s washable. If you have the RespirTech vest, call and request that they send you some!
The only thing he’s been having trouble with is his nebs. I’m not sure if it’s just doing a neb in general or inhaling the Hypertonic Saline. I’ve tried it myself and it makes your throat and nose itch. It tastes awful and I don’t blame him for hating it. Lately, I’ve had to sit next to him and hold the neb over his face. He often fights it with his whole body but we’ve tried to use positive reinforcement with him. I’ll sit with him and whisper in his ear how much I love him, how he’s my hero for all he goes through, how proud I am of him and how well he’s doing. Ryan and I make a huge deal when he’s done, giving him high fives and hugs. I’m going to try and give the HTS another couple weeks and if we’re still having problems, will talk to our clinic about the possibility of switching inhaled meds.
Before we know it, Ben will be putting his vest on by himself!
I have not started packing but am going through Ben’s clothes and toys, packing up his old clothes and putting away the baby toys. Ben is so lucky to be surrounded by so many people that love, adore and spoil him. The five, filled-to-the-brim, plastic storage bins prove it!
This has been one of the longest days ever! But the results were worth it.
Last night, we drove down to the Bay Area to stay with Ryan’s aunt and uncle. The drive to SF is long and I knew a sleep-deprived, food-deprived Ben would not be pleasant.
Amazingly enough, he wasn’t! We got up at 5 am and were in the car by 6. Ben was pretty easy in the car and we made it to UCSF with time to spare.
It was weird to be back to the hospital were we spent two weeks. The same hall. The same smell. The same cozy coupes for Ben to play with.
We waited patiently (and at times impatiently!) for the team to be ready. When they finally called us in, we were taken to a small room where Ben was weighed and the machine calibrated. We discussed all that was going to happen especially with Ben’s sedation.
He was first given some antihistamine to help make him sleepy, which he sucked down easily. Then came the dreaded chloral hydrate. I’ve heard that all other kids have hated it and it can be a messy fight to get down. NOT Ben!! He sucked down the entire dropper in 10 seconds. Dr. N said he had never seen a child take the CH so well. Way to go Ben!!
Then came the waiting…. It took about 20 mins for Ben to go fully under. Luckily, since he was fussy, hungry and wanted to get the heck out of there, they put Thomas on the computer. I could tell the medicine was working because he got heavier and heavier in my arms.
I then lifted him into the machine, making sure his neck was propped up to open his airways.
Silly putty type stuff (once again, technical term :) ) was put around his face to ensure an airtight fit on the mask.
A test run was performed and then we started. We started with closing the chamber to perform part of the test. This only took a few minutes.
(If you hadn’t noticed, Ben is almost too big for the chamber. Looks like we’ll have to wait til he’s 3 1/2 or 4, when he can do them unsedated, to do his PFT’s again. We don’t think he’ll be able to fit into the chamber next year. Once again, I’m really glad we finally got this scheduled.)
Air was forced into his lungs, seeing how much he could hold. The test was run a couple times to ensure accurate numbers. Then the jacket was put on him to force air out of his lungs.
Now time for the results.
Ben’s FEV 0.5 was 126% (forced expiratory volume)
FEV 1 111%
Total lung volume is 113%
All of these numbers are ABOVE AVERAGE!! That means our little CFer is doing great! We are so excited to have such great results. Our team was just as excited as we are. We’ll just continue to do treatments like we are and pray that Ben continues to do well.
I have a lot more to update on but I’m EXHAUSTED and I have a crazy “drunk like” little man on my hands.
Thank you to all who kept us in your prayers and thank you to my mom who tackled this adventure with me!