Culture Results

While we haven’t had so much as a cold this winter, we couldn’t avoid everything. Pseudomonas is back.

Too quiet

I took a peek into Ben’s room because it was too quiet. We all know that kind of quiet. The kind where you’re sure your child is doing something they shouldn’t. To my surprise, (and delight!) I found Ben reading.

(I’m ignoring the fact that my little Einstein has the book upside down)

I just love his little smile.

Culture update

Unfortunately, Ben’s culture was not ready as of yesterday. That means, I have to wait until Monday to see if there’s anything growing. We are no longer given preliminary results after our last “pseudo fake out”. While the wait through the weekend stinks, the fact that Ben’s cough continues to improve, keeps me going.

RespirTech was mortified and apologetic over the fact that the brand new vest they sent us had a hole. They have overnighted a new (black!) one to us and am asking that I put the old-new one in the box to return. They will take up the issue with their manufacturer. They seemed more upset about the hole then I was! At least they have wonderful customer care.

We were supposed to go out of town for to celebrate Ryan’s grandpas 94th (can you believe it?!) birthday but another family member became sick so we decide it was best for Manny and I to stay behind. Looks like we have a weekend full of movies and PJ’s. The weather is cold and dreary and I can’t think of a better way to spend it with my little man.

Because there haven’t been any new pics of Ben in awhile, I’ll leave you with one.

Sharing his snacks with his pillow pet and yes, we are still wearing our Christmas PJ’s!

A question…

Well, in good news, it looks like Little Man’s cough is starting to subside. This really makes me happy to see and hear. While I’m not convinced there’s nothing going on, it is good to see it going away. I’ll call in tomorrow to see if his culture results are in.

And now, I have a question for you. I ordered Ben the next vest size up. He now wears a RespirTech size 24. I decided to order him the new blue vest that I had been told about at CF Education night.. It came in a timely fashion however, I was disappointed to see it already had a hole in it. It split at the seams, not a good thing for a vest that fills with air. Ryan also seems to think the blue is too “girly”. So, I have to ask….

is it too girly? I may just ask them to send us the standard black. Maybe the hole was a blessing. A blessing that my son doesn’t have to feel “girly” while doing treatments.

Hello, again

Today, we said hello to our Pleasanton clinic. Friday night, Ben had a low grade fever. It went away by Saturday morning but was soon followed by a dry cough. Well, that cough has gotten worse as of yesterday so we headed on in today for a culture.

Our clinic does not just give out antibiotics. They want to see him, listen to his breathing and do a culture to find out if anything is growing in his little lungs. This is a GOOD thing. Too often I see CFer’s getting handed antibiotic after antibiotic without going into further detail or examination. This is not necessarily good for a couple reasons. One, different bacteria requires different antibiotics. If you don’t know what’s growing in our little CFer’s lungs, how can you properly treat it? Two, I don’t want Ben being filled with unnecessary antibiotics that aren’t treating the problem. Three, I don’t want Ben growing resistant to antibiotics. He’s going to be taking them throughout his life and the last thing we need is for him to build up a resistance to certain ones. Four, you don’t want antibiotics covering up a bigger problem that may be going on. They may treat the symptoms but not the overall problem.

I have a refill on Bactrim for emergency cases such as, we’re out of town or it’s a holiday weekend.Our clinic trusts me enough to know the signs of possibly needing it. However, we haven’t had to use it yet because I like to give Ben a couple days to get over the cough himself.

While being in the car for three hours and missing our Gymboree class is not fun, I am thankful our clinic handles Ben’s care this way. Once again, Ben receives the best care because I refuse to settle for anything less.

Now we just keep our fingers crossed for clean results or results that can be treated with oral antibiotics. I am not letting the dreaded p-word enter my vocabulary just yet.

Bloggy friend

I just wanted to ask you guys to pass on some blog love to my dear friend Cassie. I have known Cassie for many years as we grew up in the same town and our moms worked together. Months ago, Cassie’s daughter was prenatally diagnosed with Down Syndrome.

Having gone through my own prenatal diagnosis, I reached out to Cass to let her know I had some what of an idea where she was coming from. I encouraged her to start a blog because  I know it can be healing on so many levels. But most importantly, it let’s you know you’re not alone. I am SO thankful for all the CF mom’s I’ve met online and I hoped the same thing for Cassie.

Now that Audri is a few months old, she was able to get one up and going and I’d love for you to stop by and show her some love.

http://audribeth.blogspot.com/

Her story is incredible and Audriana is just the cutest little thing. Thanks readers!

TT {Part II}

I just wanted to thank a sweet anonymous reader for saying they were thankful for my blog. It so nice to hear this once in awhile and I’m glad to know people are actually reading this!

When I started this blog, I didn’t think too many people would read it. While I wanted to keep a handful of family members up-to-date on Ben’s CF, I started it mostly for the little man. Not only did I want to keep an online scrapbook, but I wanted Ben to know that I struggled with his diagnosis as he (probably) will in the future. I am human, I make mistakes but I did my best to love and raise him to be a productive member of society.

Life with a chronic illness is no picnic. In fact, it downright sucks. I’m not going to sit here and blow sunshine up your skirt. But I do believe if you stare at the negative too long, you lose sight of the positive. A week after we found out about Ben’s CF, my dad sent me this quote:

"When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us." -Helen Keller

Though I’ve struggled with Ben’s diagnosis, I have also come to appreciate life so much more. More then most people I’m sure.

As Ryan and I continue to think/discuss/pray about baby #2, I hope to be open and honest. This blog is my voice, where I make no excuses for who I am or what I write.

Thank you for following our journey.

Thankful Thursday

I decided to participate in Ronnie’s Thankful Thursday this week.

I am thankful my little man seems to be feeling better. We had about three weeks where he was just a little pistol, in pain from teething. All he wanted was his pacifier and lovies to snuggle with. I am thankful he has almost all of his teeth and is in better spirits.

I am also thankful his first dentist visit went well last week. The doctor confirmed he had multiple teeth coming in but everything looked great and right on track.

This was the only picture I got of Ben while there. I’d hope to get one of him in the dentist chair, looking like a big boy. However, I found myself in the dentist chair, holding him down while the dentist tried to look in his mouth without getting bit.

I am thankful we have started work on our backyard in preparation for the spring. This is the first time Ben has had a backyard and he deserves every square inch. Just another place for him to run and play.

What are you thankful for?

Snow Day

My post of our weekend is long overdue! In my defense, last night was date night so I was out enjoying my hubby!

This weekend, we went up to Soda Springs to my great aunt and uncles cabin. We had an absolute blast. Christmas 2009, Ben hated the snow. He sat down in it, whining and acting like a priss who didn’t want to get dirty. Well, this year, he couldn’t have had a better time!

By far, his favorite activity was throwing snow (throwing it at me was even more fun!).

He refused to wear his gloves but didn’t seem to be bothered by the cold. So I let him play until his fingers practically fell off

What else could complete this little guys trip? A model train of course!

Ben was in heaven. There was even a train whistle button, he pushed repeatedly. I have to say, it was a great weekend. Ben lungs did great, we always worry a bit, taking him up to such high altitude. But he was a champ, doing his treatments even when he wanted to be playing outside.

Hope everyone else had a good weekend. I can’t believe it’s already Wednesday!

The countdown to Ben’s 2nd birthday starts now!!

CF education night

Phew! I had a bit of a blogging break this weekend because we took Ben up to the snow. We had an absolute blast! Ryan got to snowboard, I got to read more Sookie books ( ) and Ben had a blast throwing snowballs. Pictures to come tomorrow.

First, I wanted to talk about the CF education night I went to on Thursday. It was put on by the Sutter Hospital CF clinic. This was the clinic we were originally assigned to but then ended up switching to UCSF when we moved to Santa Rosa. I have some experience with them because Ben was born in Sac and was hospitalized for 20 days due to MI. During this time, the Sutter team oversaw his care.

I have to say, I have heard great things about their NP. I have also heard not-so-good things about their Pulmonologist. This is why we have stuck with UCSF despite this clinic being only 25 minutes away.

However, they put on a great CF education night and it was so wonderful to meet some of the local CF mom’s I’ve come to know on Facebook. I also wanted to share some tips/info I learned while there. A genetic counselor, NP, Pulm doctor, and GI doc all spoke. Please keep in mind, this is the opinion of one CF accredited clinic so take it as you will. There is a lot of info so I’m not going to go into specifics because most CFers/CF caregivers know what I’m talking about. I apologize if it’s a bit random, there was a ton of info given out!

1. Hypertonic Saline. The doctors and nurses who spoke, couldn’t stress enough how important they thought HTS is. In their opinion, everyone should be on it. It hydrates the mucus and makes it easier for CFer’s to cough it up. Even if you or your child don’t sound mucus-y, once they start HTS, they will cough phlegm up. Highly recommend for EVEYBODY!

2. Vitamin D- During the winter months, when kids get less sun, they recommend 2,000 IU daily at the least.

3. Vertex drug trials. There have been “game changing” results in VX-770. This is the drug targeted at the G551D mutation. This drug has had extremely promising results and is the ONLY drug to actually reduce the amount of sweat chloride in CFer’s. Therefore, fixing the underline problem in CF. There have not been as promising results in the VX- 809 study. HOWEVER, it is only in Phase II and many people believe the right combo of the 809 drug and the 770 drug will show just as promising results. Extremely hard to hear but I’m glad to have an update.

4. PPI’s and C. diff/pneumonia. There are some studies that show a correlation between Proton Pump Inhibitor (Prevacid, Prilosec) use and C.diff and pneumonia. PPI’s may have a slight effect of increased community acquired pneumonia or clostridium difficle diarrhea. However, all the doctors agree that the benefits of PPI’s outweigh the risks.

5. RespirTech vest users: I spoke with the RespirTech rep and he was very impressed with the fact that Ben is at 100% pressure on his vest. He recommends that every child be at 100%. You can slowly work up to it or just jump up, depending on your child. He says 100% is absolute best for adults and kids. They also now offer vests in pink and blue, you just need to call and ask them to ship you one.

6. If your clinic doesn’t start testing for Cystic Fibrosis related diabetes by the age of 10, you should ask to start. It should be done annually.

7. Pseudomonas. The Pulmonology doctor recommends that even CFer’s with colonized pseudomonas be treated with an on/off cycle of TOBI for the rest of their lives. He also recommends a Cayston/TOBI/Cayston/TOBI…. sequence to see if it helps in clearing pseudo.

8. Azithromycin is recommended in kids 6 years and up to help with anti-inflammatory. It can also help increase lung function. Ibuprofen can also help however, the levels need to be monitored. You shouldn’t just start taking Ibuprofen everyday. Your clinic will help you figure out the right levels for each person.

As I said before, please talk to your clinic before you change your/your childs regime. Please feel free to email me if you have any questions.

Addictions

There are good and bad addictions going on in our house.

Besides my love affair for my Sookie Stackhouse books, I’ve taken up a new habit. One I haven’t been into before.

Soda. Ugh.

I have never been a soda drinker beyond a sprite here and there. But lately, I’ve found myself drinking them more and more to put some spring into my step. I don’t drink diet either because the artificial sugar gives me headaches. Nope, I’m fully addicted to the “fat coke.” I’m going to attempt to wean myself with some sweet tea from Trader Joes but I’m not sure how it’s going to work. I even find myself craving them. Ugh.

However, there are some good habits going on too! I’m proud to report, my little man is into a good habit. Two days ago, we visited a friend who introduced us to Ella’s Kitchen Organic squeezable food. Ben gobbled it up so I decided to head on over to Babies ‘r’ us to try some different flavors to see which ones he likes. I had hoped he would like the vegetable ones, especially the spinach, apples and rutabaga mix. I had hoped some veggies with his dinner would counteract the milkshake/fry combo we had for lunch.

Now, Ben doesn’t like veggies (besides peas and he only eats them for my mom) when they’re placed on his plate. Who really does? But this is a fun way he can get his veggies and even walk around doing it! Besides an initial puss-face (hadn’t tasted anything like that in awhile, ha!) he sucked the entire thing down. My next attempt is the sweet potatoes, pumpkin, apple, blueberry mix.

You can check out their many products HERE. I’m glad one of us has a good habit going on!

What’s that?

“What that?”, “What that?”, “What that?!”,

This is what I heard when I was putting away dishes in the kitchen. I came around to see what Ben was talking about. He pointed to something on his raceway.

I had to bend down to see what he was pointing to. I laughed out loud when I saw it- french fries on the pretend drive-through sign. Looks like it’s time to slow our roll on the McDonald’s french fries, even if they are good calories!

At least one

At least I’m keeping up with one of my New Years resolutions up-turning off the TV or less “screen time”.

I admit, I’m a die hard True Blood fan ( I know, I know, but it’s the ONLY vampire show I watch, I swear). I’m even classified as a “fangbanger” online. I wear that title proudly.

I have gotten into the Southern Vampire Mysteries, the Sookie Stackhouse books. I admit, I wish it was something more profound like, How to raise the next President, but after all the energy I expel with Ben all day, it’s a mindless read that I enjoy.

My husband is such a sweetheart that he went to REI and bought Ben and I gloves to wear during our walk. I guess I have NO excuse to not get out now. I think that’s a good thing

Why?

I thought my New Years resolution was a good one. I wanted to get out and exercise. To give Ben some fresh air, and new sights.

But why did I have to do it during the coldest month of the year? It has not been over 43 degrees here, even during the day (I know Jen, I’m a wimp).

Yoga pants? Check

Leggings under yoga pants? Check

Knee high socks over leggings? Check.

T-shirt, sweater, jacket, mittens, scarf? Check

Ben, barely able to move, let alone see (all the new sights remember?) out of the mass of layers I put on him? Check.

Still freezing? Check!

At least I got some “quiet” time to myself. Ben has been literally climbing up the walls lately and it felt good to zone out on my ipod.

Mother Nature, please show me some mercy. I’m trying.

A solution

A solution to my own question. Well, somewhat of a solution.

Over a year ago, Ben’s Papa & Nana (Ryan’s parents) gave him a talking bear, My Pal Scout from Leapfrog. Ben loved it but has slowly lost interest in it over time. Every once in awhile he’d play with it but not like he used to.

Well, I was racking my brain this morning for ideas that will help him sleep in his own crib during naptime. That’s when I spotted Scout.

Scout was perfect! It gave Ben something to concentrate on while I slipped outside. I had to laugh though, while I listened to fake burps (teaching kids manners), lots of “I love you, Benjamin” and singing coming through the monitor. At least it gave me an afternoon hour of quiet time. I even managed to slip in his room and pull it out of his crib while he was sleeping. Don’t want him rolling over on Scout and setting him off. As you can tell, nap time is highly coveted around here but I think, only by me. Let’s just hope it continues!

Thank you Nana & Papa!

Where did my good sleeper go?

Ben has always been a great sleeper. While he’d prefer to spend his time playing with cars, he’s always been easy to put down, even as a baby. Since he was little, we’d put him in his crib, turn on music and say goodnight. Easy-peasy. Something I clearly took for granted.

Yesterday, he refused to nap. When I first told him it was time to nap, he had a melt down. Not like him. Yes, I have to tear him away from his toys but it usually means he gets to go upstairs, snuggle with “Bunns & Girafee” and his paci. So when I took him upstairs and put him in his crib he went into a fit and cried for 15 minutes.

After 15 minutes I could no longer leave him in there. It was breaking my heart to hear him cry especially since he hardly ever does. I took him into my room, snuggled up next to him and he was gone within 2 minutes. Of course, I was so comfy, I settled in for a nap too (I’m glad I don’t usually sleep with Ben, he’s a kicker!).

I figured it was a fluke or his teeth were hurting him. He’s in the middle of having 5 teeth come in. I can only imagine it’s painful even with all the remedies I’m giving him. Anyway, I thought it was a fluke. Until today. Same thing again. Meltdown. Cried for over thirty minutes this time. I was determined not to give in because I don’t want this to become routine. Ben’s nap time is my down town and I cherish it to say the least. However, I couldn’t let his cries go beyond a half an hour.

I know he’s tired because, once again, he fell asleep next to me within 2 minutes. Ugh. Do I have a permanent nap buddy? Of course, I feel asleep again! I was reading until I woke up when Ben did with my book smashed and drool coming out the side of my mouth.

Who wouldn’t want to snuggle with this cutie?! Any suggestions would be helpful!

An addition

I’m making an addition to my New Year’s Resolution. I need to get out and exercise more. While I don’t struggle with weight issues (please don’t hate me) I need to get out and get fresh air. Plus, I need to dust off my super-expensive-but-it’s-so-big-it-barely-fits-in-my-trunk-therefore-I-never-take-it-anywhere stroller.

Before I know it, it’s going to be summer and WAY too hot for me to be walking around. I know Ben would really enjoy a fresh air walk, I just have to get my butt up and moving. Easier said then done.

I’m also passing on a prayer request for my friends, the Olimb family. Like us, Rachel and Jeremy didn’t know they were carriers until their three-week-old son, Asher, was diagnosed with CF over three years ago. Rachel gave birth to the family’s second son, Paxon, Christmas morning. Unfortunately, Pax was born with CF and a deletion on chromosome 4. He fought hard for 11 days but was called home today. You can read more about their sweet family here:

http://www.asherolimb.com/blog/

Rewind!

The holidays blew by before I got to share Ryan’s special gift from Ben I decided to take Ben to Color Me Mine just after Thanksgiving. I was hoping he’d paint a piece of pottery for Ryan and my parents.

However, I wasn’t sure if Ben was at the appropriate age so I asked the women who worked there before we decided to attempt it.

We did attempt it and I’m pretty proud of how it came out. Ryan is the proud owner of his first “daddy mug” that Ben painted all by himself. I love giving gifts like these. Ones that have meaning to them. I know it’s a gift Ryan will cherish forever.

Day 2 of 2011

We had a fabulous New Years in the Hughes house! However, it didn’t take part in our home, it was actually at a wedding in downtown Sacramento.

Ryan and I were lucky to have my girlfriend come up and stay with Ben over night. This gave Ryan and I a much needed night out of fun!

As you can probably tell, we had a blast. It was so good to catch up with our college friends and celebrate two friends getting married. Saturday and Sunday were spent recuperating hanging low.

Ryan and I came up with New Years resolutions/goals for our marriage and for myself. My goals for this year are to turn off the TV more and enjoy uninterrupted time with Ben. I can’t believe he’ll turn 2 in 2 months and I don’t know where the time has gone. I don’t want to look back and regret not spending enough time with him. It’s so easy to get so caught up in TV/internet/cell phones and I am completely guilty of it. I need to unplug myself sometimes and just enjoy my son.

I hope everyone had a great New Years too!