My first attempt at Photoshop…
I know it’s not much but I’m getting there. What do you think?
I’m going to have a good New Years and it’s not even here yet. Why?
Coming up, my New Years resolution. Not too sure what it’s going to be yet but I’m working on it.
Phew! It’s been a whirlwind around here. Let me start off by saying we had a blast with my family over Christmas. Everyone was great with Ben, sanitizing their hands before playing with him, staying out of his face, and playing on the beach with him. However, it was a LOT of people to have in a house and Ryan and I realized that next year we’ll be ready to spend Christmas in our own home.
Just to give you and idea of what a Christmas tree looks like with presents for 35 surrounding it…
Through those windows is the beach
…mind you, the pile was 2 1/2 feet deep.
Ben loved everything he received this year. We didn’t go too overboard with him because, quite frankly, we spoil him all year. He gets toys after clinic visits, when he’s sick or when I feel guilty so we tried to keep it low this year.
We are now back in Carmel enjoying some down time. Ryan worked his tail off all month long so he’s now able to spend some quality time with us. Of course, we hit up the Aquarium this morning but it was uber crowded especially with people who had a cough. I just can’t understand for the life of me, why people go out sick! It’s my biggest pet peeve. So, we decided to ditch the Aquarium and enjoy a stroll around the wharf.
Here are some fun Christmas pics for you:
a neighbor Santa comes to the house and hands out gifts to the kids. Ben was not too keen on him. Here he is, sizing Mr. C up. It didn’t go too well.
Everyone had a gift from Santa!
Ben enjoyed the beach so much. I thought he was going to hate the sand like he did in Hawaii, but nope. He threw rocks into the ocean for over 2 hours. My younger cousins were so helpful with Ben. It just warmed my heart to see them all playing together.
I hope everyone else had a fabulous Christmas!
To say that Ben likes Christmas lights would be untrue. To say Ben loves Christmas lights would still be untrue. To say he’s utterly obsessed would be more like it. He even gets excited when he see’s lights that aren’t on!
In Orangevale, there’s a neighborhood that does extreme Christmas lights every year. The ladies from my playgroup let me in on this little secret a couple weeks ago, and last week Ryan and I decided to take Ben.
It’s been cold especially at night so we bundled up and walked around.
Pretty cool isn’t it?
We had a blast just walking around hanging out with our little man. I think we may try to squeeze in one last trip before Christmas.
Yesterday, we headed down to Pleasanton for our first, official 12-week CF appointment. We are trying this clinic out for the first time and will be meeting our new RT and seeing Dr. L again. We have dealt with Dr. L before and know she is wonderful, she’s just not our beloved Dr. N.
Turns out, she only popped her head in to say hi because I had little to no questions, Ben’s height and weight were so good, and his lungs were clear! At nearly 32 lbs, Ben is still well in the 90th percentile for weight. We can thank Ryan’s gene’s because Ben is a physical clone of his father as a child! As neither of us are tall, I never expected Ben to be either but he’s still rockin’ the charts at 88 centimeters, well into the 75th percentile. We are so thankful for how Ben is doing, this doesn’t go unnoticed by us!
We met our new RT and this is one of the negative sides of the new clinic. He has a lot of book training but no real personal experience (he told me this) but seemed eager to help us out, keep track of when we should be changing our nebs (every 6 months) and brought in a handful of free nebulizers and bubbles masks. We are lucky that we’ve never had to pay for nebulizers or masks because our clinic is so well stocked.
Our NP came in and was so excited to see Ben. Since Ben has been doing so well lately, I haven’t talked to her in awhile! We presented her with our Thank-you-for-a-healthy-2010! basket, filled with See’s candies that she promised to take to UCSF the next day.
We SO appreciate all our clinic does for us and we want to keep them fat and happy so when that magic pill comes out, we’ll be the first in line :) While some people may not count a 5-month battle with Pseudomonas and a 2-week hospital stay as “healthy”, after losing Conner and seeing the decline of Skye, I do.
Our NP listened to Ben’s lungs and said they sounded “crystal clear”, hallelujah!! She thought it was a great idea, us adding HTS back into his treatments as night in an attempt to keep Ben healthy this winter. Ben showed her how he can now cough on his own (it’s more like a huff) but she was impressed none the less, and was on her way, basket in hand.
We saw our nutritionist next and that was pretty easy too. Since Ben is doing so well all around, she said to keep doing what we are doing. She also said it was okay to add in Gummy Bear Vitamin C and D into Ben’s diet during the winter. I purchased some from GNC and am glad that Ben will be able to use them. I also read on Cystic Life about Coconut Water and the benefits it has. It’s something I’ll be adding into Ben’s diet during the summer to help keep him hydrated in place of Gatorade which has double the sugar. However, that’s a ways away and will be talking about it more in the upcoming months.
Even better is that Dr. N visits the Pleasanton clinic once a month and we will be able to see him then for our annual visits. We will see Dr. L for any illness related visits and I am totally happy with that. The new clinic shaves over an hour of drive time off, we don’t pay for the Bay Bridge ($4) nor for parking (usually $12), don’t have to deal with city traffic (can be AWFUL!), and don’t have to deal with a huge waiting room of sick kids. I’ll take it!
They took a culture at the end, before we left. This, I am a bit nervous about. In the last week Ben has developed a dry cough which could be caused by a number of things. The change in weather, starting HTS again, becoming sick or growing something in his lungs. I feel at peace though, I’ve done all I can to keep him healthy, short of putting him in a bubble. The results will be in next week.
Thank you to everyone who has kept Ben in their prayers. Please keep it up!
We took Ben to meet Santa yesterday at our local mall. He did well with the Easter Bunny this year, waving at him and jumping in line, so I kind of expected the same thing.
However, our little man turned shy. He run up to him then away! We got him to sit on Santa’s lap but he wasn’t very comfortable.
Can you see him grabbing his shirt? He was so nervous, ha!
Tomorrow we head to Pleasanton for our clinic visit. This will be our first full visit at the new clinic so I have a TON of questions for our new Pulm. Keep Ben in your prayers for a clear culture!
I just had to share this picture because it makes me laugh out loud!
He was running around the house and jumping on the couch while making this face. Pretty funny! Do you love his turtle neck onesie? I thought it was a bit dorky but it looks just adorable on him and will go perfectly with his Christmas outfit. Thanks mom!
My little rockstar also loves to turn the light switches he can reach, on and off. I spent half of my shower this morning, in darkness. Gotta love toddlers!
Ben was put on Hypertonic Saline (HTS) early this year until we were admitted to the hospital in early August. Hyper Sal is similar to inhaling salt water and it can be hard on some people. When we were in the hospital, I saw how well Ben did taking the Pulmozyme versus the Hyper Sal so I asked to be switched.
Pulmozyme has been going pretty well. Of course, Manny has those days in which he fights his treatments but its significantly less then with the Hyper Sal. I had refilled his prescription of Hyper Sal before we were admitted so I’ve had a months worth of it sitting on our shelf. HTS has a long shelf life so I wasn’t too worried about it going bad.
Recently I have decided to add it back in at night in an effort to keep as healthy as can be during the winter/flu season. There are a lot of CFer’s not doing so well this time of year and I am VERY thankful that we haven’t been hit too hard *knock on wood*. I have been more careful about bringing Ben around large groups and have been even more diligent with hand washing and disinfecting.
The first night we started back with the HTS Ben coughed a lot. Coughing is a good thing. Coughing means mucus and other respiratory gunk is being moved up and out. But as the days have gone on, he coughs less and less and I hope to make it through the winter with little to no illnesses.
You’ve heard me talk about the Vertex drugs (VX-770, VX-809) and how these drugs would
help change Ben’s life. They would allow him to lead a more “normal” life. I came across a video that really describes the basic defect of CF (something I still don’t fully understand) and how the Vertex drugs will work.
It’s a great video to help you understand better what we’re fighting for. The Vertex drugs are just some of the drugs in the CFF’s drug development pipeline that will hopefully be available to CFer’s in the future. By walking and donating in Great Strides 2011, YOU contribute to these new drugs.
It may be a bit early but please mark your calender for GS 2011 ~ Ben’s Brigade, May 21, 2011. Do not wait for a personal invite for us, join now! You can sign up by clicking the widget on the top left hand corner of my blog. Thank you!!
Reason # 3,489 why my husband is amazing. No, this isn’t going to be a sappy love post, I just have to give him some props. By no means do we have the perfect marriage or life but we always strive to put each other first in our marriage. Even if it means doing things we may not want to do.
My husband does things for me all the time. The latest? Christmas lights on our first home.
(do you notice my sidekick that insisted on being in the picture?)
Don’t they look awesome?! Ryan knows how excited I was to get them up so he tackled the project last weekend. He spent 4 hours in the cold and on the roof, putting them up because he knew I’d love them. And I do. He even put them around our front door.
When we were in Carmel for Thanksgiving, Ben and I decided to hit up the Monterey Bay Aquarium. We are so lucky to have such an amazing place close by and even luckier that my parents have a membership.
We were meeting an old high school friend of mine and her daughter for a day filled with fish. The weather was gorgeous in Monterey. Clear with a crisp breeze.
Little Man loved hanging on to the railing, pointing out everything.
I wasn’t able to get many pictures once we got inside, the kids kept Lindsay and I on our toes!! They had a blast in the kids area, going up and down the slide, splashing in water, running in the tunnel and coloring.
I have my computer back!! While it’s not fixed, I’m just thankful it’s working. We are going to hold out for a bit in getting me a new one, our house purchase pretty much drained our savings so I have to be patient. Anyway, I can finally post some of my photos!!
When we were in the hospital, people were very generous with gifts. We received a lot of art supplies including multiple amounts of stickers. While in the hospital Ben wasn’t too interested but has really taken an interest in them lately.
He asks to color daily.
I’ve had to remind him, “only on the paper” a couple times.
As you can tell, he is also loving the stickers. He brings them to me and points to the ones he wants. His favorite are the stickers of animals. The first time, he held one up and tired to snuggle with it!! That’s when he first discovered that stickers can also stick to his face…
He switches the crayon from left to right but seems to favor his right. Looks like he could end up being righty.
Aaaahhhhh, it feels good to be back. Could blogging be classified as an addiction?
I remember my Obstetrician asking me if I wanted to be tested to see if I was a carrier of Cystic Fibrosis at our first OB appointment. It was an overwhelming appointment. We had our first ultrasound, seen our little bean, been given tons of paperwork and info on pregnancy and birth. She was checking off boxes for my blood work papers that I was to take down to the lab. I was Caucasian so I fit into the category as a possible carrier.
“Sure, why not? Nobody in my family has it so I know I’m not.” I barely knew what CF was. I only remember Frankie from, The Real World: San Diego having it. Surely, I couldn’t be a carrier. Famous last words.
2 weeks later I was in the parking lot of the mall heading in to do some shopping when my phone rang. It was the nurse practitioner at my OB’s office letting me know that my blood work came back and indeed I was a carrier for CF. I had the most common mutation, DeltaF508. I asked her what this meant and she told me we needed to have Ryan tested to make sure he wasn’t a carrier. I asked her what would happen if he was and she said, “don’t worry. In my six years of doing this, I’ve only had one other couple come up as both being carriers.” Her famous last words.
They quickly wrote up some paper work for Ryan to be tested and he was sent to the lab for his blood draw. A couple days later, I was working when my phone rang. I could see it was my OB but I couldn’t answer. Ten minutes later Ryan was calling me. I couldn’t answer. He called again five minutes later. At this point I figured I needed to answer. So I did and Ryan informed me that our NP had called to talk to him, telling him he was also a carrier. This was on a Friday and they had already set up an appointment for us to be seen by a genetic counselor on Monday. I couldn’t get Monday off in time so we had to reschedule to Tuesday. We were told to stay off the internet and to be positive.
Tuesday came quickly and Ryan and I met with our genetic counselor. She was fabulous. She was compassionate towards our situation but laid out the facts. My mom was also with us to ask questions that we couldn’t think of and to be a support. Since Ryan and I are both carriers we had a 25% chance of our baby having CF. She told us all about CF and then told us our options. In our hearts we knew we could never have an abortion and quickly asked her to not bring it up again. This was our baby and we were going to keep it no matter what.
We did want to do prenatal testing (and will with future pregnancies) so three weeks later we returned for my amniocentesis. A week and a half later we got the phone call that change our lives.
What is the point of this post? Ryan and I didn’t know we were carriers. Are you?
You can now order testing that comes right to your door. Ambry Genetics has a home kit which you can order here.
If you’re having trouble ordering from the website, figure out which test you want and then call them. If you are a family member you’ll want the 508 First because Ryan and I are both carriers of the DeltaF508 mutation.
I just had to share these photos because Ben just looks adorable in them. He had more fun in this box then with some of his toys, ha!
I’d like to send out a HUGE thank you to my mom’s side of the family. We are going to spend Christmas in Santa Barbara with them this year and we were a bit nervous having Ben around so many people. So I emailed/called everyone and my grandma, seven aunts and uncles and 20+ cousins were more then happy to get the flu and Tdap (whooping cough) vaccine in time for Christmas! Words cannot express how much Ryan and I appreciate everyone doing this because we know it takes time and effort. There is no better way to support our family and Ben, thank you Donlons!!
Treatment time has become routine around here. I wouldn’t go as far to say we love it but it has become easier. I remember other CF moms telling me how everything would start to feel “normal” after awhile. I’ve been feeling that way about treatments.
I don’t dread them like I use to. They seem to fit easier into our schedule. I think it’s because my mind is now programmed to figure them in every morning and night, “If we go out to dinner, should we do treatments before or after? Will Ben be too tired after?”, “We need to be out of the house by ten which means I need to start Ben’s treatments at nine-thirty which means he needs to eat by eight-thirty which means I need to get up now!”
Jamie, did a really great post on the plus side of treatments. It was really great to hear her perspective on things. However, I don’t think I’m there yet. Treatments can be a big pain especially when we’re not at home. They are a pain to pack and travel with. Sometimes we have to cut fun activities short to get them done.
But, lately I’ve been realizing I’m very thankful for them. While I don’t have to love them, I am so thankful their are medicines to help keep Ben healthy as can be. Not too long ago, children with CF weren’t expected to live past the age of 5. Parents were told to take their children home and love them for as long as they had them. Luckily, we aren’t there anymore. Makes me realize how lucky we are for Ben’s CF to have been caught early and for all the drugs available to keep him healthy. Thinking about it, I realize I’ve always been thankful for them, it just to took me awhile to realize it.
Today, Ben and I hosted playgroup at “our” park. I say our park because the park is directly behind our house.
Seriously. We walk three houses down then through a coded gate into the park. Pure heaven for a mom of a toddler.
Plus, we don’t have neighbors looking into our home!
Even though our little Prince doesn’t like to get dirty, he seemed to tolerate the sand around him.
Ben’s rug finally arrived so I’ll put up some pictures of his room soon.
Also, I’ve reregistered Ben’s Brigade for Great Strides 2011. Be prepared to join!!
Last week when I transferred Ben’s prescriptions to CVS, I asked our nurse to call in a new enzyme prescription. I wasn’t sure how long it’d take and I didn’t want to get low. Ever again.
While we were talking enzymes, I asked her when Ben could move up from Creon 6 to Creon 12. He’s already taking six enzymes with each meal and it’s beginning to not fit on a spoon of applesauce. She said no problem, Ben could move up to three Creon 12’s with his meal. Perfect! I figured it’d be easier to return to the task of Ben swallowing his enzymes whole with only three versus six.
However when we picked up our new order, I discovered that the strength didn’t change, only the capsule size.
That’s what Ryan and I took Friday night. We were elated with the news of no pseudomonas. Our Nurse Practitioner said she has never had this happen. To the labs credit, they continuously said that the pseudo results were preliminary. But who would have thought, they would change the result?
So, we have had a happy weekend. Ben’s god mom came to visit and decided Ben needed a new toy to go along with his new house. So Ben is the official owner of a Cozy Coupe.
Especially today, during the rain, he was having fun pushing it around. Thank you Auntie Megs!
Our order of Pulmozyme arrived late Wednesday evening from the CF pharmacy. I called them the next day and talked to the manager (the same one I had bitched out the day before) and thanked them for the prompt service. Even though it was their fault, I wanted to let them know I appreciated the quick fix. They also threw in some free nebs which is always a plus.
Even better news is, Ben is tolerating the Pulmozyme well. I think the Hypertonic Saline really did a number on his throat so it was always hard getting him to do it. We also only do Pulmozyme in the morning so he gets a neb break at night. He is also on oral antibiotics to get rid of the bacteria he cultured, however I don’t even know how to pronounce it let alone spell it! Our NP even had to sound it out.
I hope everyone else had a great weekend!
I had a really long post about possibly changing things up with Ben regarding this last culture result. However, before I could publish I got a call from UCSF saying the lab got Ben’s culture results wrong. Another bacteria, thought to be pseudo grew, NOT pseudomonas!!! Oral antibiotics should take care of the bacteria growing! We are so happy to hear this news, I can’t even explain how much. The Cayston order has been cancelled but we will continue with the Pulmozyme as a precaution.
I have more to update you on but I’m off to have some champagne. I’m so happy!!!
Ben is growing Pseudomonas again. We are starting a new inhaled antibiotic, Cayston on Friday. This will be done three times a day for two months. Our Pulmozyme order should arrive today. This will be done once in the morning forever. The doctors are hopeful that the Cayston will work. The pseudo isn’t mucoid or colonized which is good however, we are heartbroken.
Boy, we are sure enjoying our new home. This is something Ryan and I have talked and dreamed about for a long time. We are so excited to finally make it happen! Thank you to all who helped get us here, you know who you are!
Mr. B is loving his new home also. He has plenty of space to run around and he is loving our driveway. He drags out his tractor and flies down it! It’s only a matter of time before we have a complete wipeout!
It didn’t take too long for car washing to get boring and for Ben to decide he’d been over-worked thus needing a break.
Now on to the potential bad…. Ben’s preliminary culture results are growing a “gram negative rod” which could be a couple things. At the top of the list is the dreaded pseudomonas. The bacteria that we just spent over two weeks in the hospital fighting off. The bacteria that wasn’t supposed to be back for a long time. This was heartbreaking news for Ryan and I.
However, we aren’t giving up. The final results will be in tomorrow. It could also be the H-flu which Ben has grown before. This will be treated with antibiotics and should go away in time. Or it could be E. Coli which CFer’s can sometimes pick up. This will not be treated, just watched until it goes away on it’s own. Of course, we are hoping that it’s either E. Coli or H-flu because they are a lot easier to treat. We’ll know the results tomorrow. Please continue to keep Ben (and all other CFer’s) in your prayers.
I have also decided to leave the Cystic Fibrosis Pharmacy. I have not been happy with their services for awhile but have stuck with them because I know mistakes can happen. They are supported by the CF Foundation and put money towards research. Something I would like to support.
Well, we were still waiting on our Pulmozyme that was ordered two weeks ago for Ben. We had decided to go ahead and try Pulmozyme since he wasn’t tolerating the HTS so well. Anyways, after I got our culture news, I decided to follow up with them and figure out what was going on. Turns out they sent it to our old address in Santa Rosa over a week ago. An address that I have repeatedly asked them to delete because it continuous held up our prescriptions. Over and over I was told it was not going to be a problem. It was extremely frustrating to find out it was delivered to the wrong address. Thousands of dollars worth of medicine has now gone to waste. While they were extremely apologetic, I asked them to close my account because I couldn’t take the stress of ordering from them anymore.
I do not mean for this post to stop others from using the CF Pharmacy, it’s just something I needed to get off my chest. There. I feel better. Thanks for listening.