People who think Ben is cool

Get blog updates by Email!

Followers from Facebook

Search This Blog

You're number:

free web page hit counter

Blog Design By:

Blog Design By:
Using the Digital Kit "Stella" by Michelle Underwood Designs

Order a Breathe Easy Mask here!

Get diapers sent to your home!

Get $10 off
your first order of diapers
use code MARG9177
$49 min. total order
buy diapers
shop diapers.comdiapers.com  baby store

Thursday, December 30, 2010

My first attempt

My first attempt at Photoshop…

New

The original…

034

I know it’s not much but I’m getting there. What do you think?

Wednesday, December 29, 2010

A good New Years.

I’m going to have a good New Years and it’s not even here yet. Why?

  • Ryan and I are going to a New Year’s Eve wedding and I have a brand-spankin’ new, sexy dress to wear. I will be surrounded by my friends as we ring in the new year.
  • I already have $400 raised towards my personal goal of $3,000 for Great Strides. It’s not even 2011. Thank you Kelly-Hughes family for your donations.
  • Ben’s culture came back CLEAR of any bacteria. Just normal  respiratory fluids. His cough and clear, runny nose are gone. I have worked my butt off the past couple months to keep him healthy and it’s nice to see it’s paying off. But, it’s not all me. I also have to thank our family and friends for respecting our boundaries when it comes to Ben. If we keep this up, we can make 2011 Ben’s healthiest year yet!
  • I’m figuring out my new photo editing software, Adobe Photoshop. This was Ben’s gift to me and I’m so excited to learn all the ropes. Better pictures coming your way in 2011!

Coming up, my New Years resolution. Not too sure what it’s going to be yet but I’m working on it.

Monday, December 27, 2010

A Christmas Post

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…

IMG_4852

Through those windows is the beach Smile

…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:

Every year, 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.

IMG_4805

IMG_4850

Everyone had a gift from Santa!

IMG_4834

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.

IMG_4778IMG_4763

IMG_4775

I hope everyone else had a fabulous Christmas!

Saturday, December 25, 2010

Merry Christmas!!

The Hughes Family wishes everyone a Merry Christmas 2010!!

IMG_4752

IMG_4790

IMG_4764

PS- I am now blogging from my NEW COMPUTER!! My husband totally surprised me with a much needed new HP Pavilion computer!! Thanks babe!

Wednesday, December 22, 2010

Semi-Wordless Wednesday


                                                                  I'm in trouble!!

* My NP called yesterday to inform me our new RT (who I wasn't thrilled with in the first place) didn't take Ben's throat culture to the lab- he forgot. So we needed to come in for a new one.
Grrrrrr...... Luckily, we were able to stop by on our way down to Monterey.
However, I am thankful because Ben has developed a cough and I wanted them to listen to his lungs (completely clear) and this next culture will reveal if anything is growing. I won't know the results until Monday or later because our NP will no longer give me preliminary results after everything we went through last time.

Monday, December 20, 2010

Dovewood Court

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.

Thanksgiving & Ben 21 092

Pretty cool isn’t it?

Thanksgiving & Ben 21 095One of my favorite pictures :)

Thanksgiving & Ben 21 099Of course, our little man sniffed out the train display and wouldn’t leave til he pointed out all the parts (engine, tender, caboose).  

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.

Thanksgiving & Ben 21 100 There was a Thomas/Mickey display that Ben couldn’t get enough of.

Friday, December 17, 2010

New clinic visit

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.

Thanksgiving & Ben 21 090

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!

Wednesday, December 15, 2010

Meeting Mr. C

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.

xmas 2010

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!

Monday, December 13, 2010

What a ham!

I just had to share this picture because it makes me laugh out loud!

Thanksgiving & Ben 21 087

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!

Sunday, December 12, 2010

Hyper Sal

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.

Thanksgiving & Ben 21 084

Friday, December 10, 2010

Vertex drugs

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!!

Wednesday, December 8, 2010

Wordless Wednesday

Thanksgiving & Ben 21 019

I don’t know how anybody could sleep through the noise of Ben’s treatments but my dad managed to!

Tuesday, December 7, 2010

Reason # 3,489

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.

Thanksgiving & Ben 21 076

(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.

Thanksgiving & Ben 21 075 Every woman deserves a husband like mine. Don’t mind the over grown plants. That’s his next project on the Honey-do list :)

Monday, December 6, 2010

MBA

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.

Thanksgiving & Ben 21 016

Little Man loved hanging on to the railing, pointing out everything.

Thanksgiving & Ben 21 011Thanksgiving & Ben 21 013I 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.

Thanksgiving & Ben 21 017The only picture I was able to take inside. Both have untamable amounts of energy!  

Sunday, December 5, 2010

CF video

I know most people have seen this but I wanted to pass it on. It’s an adorable video about CF that can be easily explained to kids. I plan on saving it for Ben’s friends!

Friday, December 3, 2010

Hooray!!

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!!

Rewind…….

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.

Thanksgiving & Ben 21 005

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…

Thanksgiving & Ben 21 002 Pretty priceless picture, isn’t it?

He switches the crayon from left to right but seems to favor his right. Looks like he could end up being righty.

Thanksgiving & Ben 21 008  Some stickers end up on the paper, some end up on the face.

Thanksgiving & Ben 21 007

Aaaahhhhh, it feels good to be back. Could blogging be classified as an addiction?

Wednesday, December 1, 2010

You got it!

Okay, 99% of you agreed that yes, Ben does look like this little guy. Who is he? He would be my now 17-year-old brother, Weston. Personally I think they look a lot alike and it comes down to the eyes and hair. It's fun to hear people say, "wow, he looks like Weston". I never thought my own child would look like my brother, ha!
I was supposed to get my laptop back today but there was miscommunication between Ryan and I over it. I am getting my computer back but it won't be fixed. It costs more then it's worth to be fixed so I'm not sure what we are going to do. I'm going to try and get the last couple months worth of pictures off of it. Luckily, I backed up all of Ben's pictures from his birth except for the last month. Total bummer. I use the computer multiple times a day to pay bills, blog and stay sane as a SAHM. We'll have to figure out what the plan is...
Next week is Ben's 12-week clinic appointment. He'll be recultured and checked out. There is really nothing too new, I'm going to have them teach me to listen to Ben's lungs and will pray for a clear culture. I am taking Ben to the Pleasanton clinic for this appointment. This will be our first time seeing our whole team with an official appointment not just getting recultured. This clinic truly is closer and more convenient for us to go there however, we'll have to switch pulmonologists. We love our current one and am not sure if we are ready to switch. I always figured we'd switch at some point and this will be our trial run for me to make the decision. Lots to think about.
By the way, Happy December!! Am I the only one who is completely taken back that it's already December?!

Monday, November 29, 2010

Do you know who?

I should get my computer back Wednesday, wahooo!! I have SO many pictures to upload. We are back at home and are so glad to be back in our own space. We had a blast this last week and I came across a picture I just have to share. Many people say Ben looks like this guy...



Do you know who he is? Do you think he looks like Ben?

Saturday, November 27, 2010

Thanksgiving post

Phew!! We have been so busy but have been having so much fun down here in Carmel with family. Last night, Ryan and I went to our ten year high school reunion. It was so good to see old friends and to get dressed up for the night. We went downtown after to a bar and stayed out way past our bedtime! We realized we can't hang like we did in high school, ha!
We are so enjoying time with family and friends. I can't even begin to count the amount of people that have told us how cute Ben is and how they are praying for him. Thank you!! All prayers are much appreciated for our little man. It's amazing to see how such a little guy has touched so many people. It's also good to know that we are biased in thinking he's adorable and amazing! :)

Without further ado, my Thanksgiving top ten list of things I am thankful for:

10. The internet. May sound dumb but when you are a stay at home mom to a child with a chronic illness you can sometimes feel isolated. I am thankful for my contact with all my CF moms which would not be possible without technology.

9. My freedom. I am thankful I live in a country where I am free. I am also thankful to all who gave their life so I could be free. Thank you.

8. Our play group. It's been so wonderful to meet other moms in our area. They have been a great support system and have made it easy for me to feel comfortable bringing Ben around their kids. Ladies, thank you for all you have done. I love your kids like my own.

7. Homeownership. I am thankful to own my first home. In a time in which many people are losing theirs, I am thankful for mine.


6. Family. My parents are amazing. They do more for Ben then I can begin to list. I am also SO thankful for mine and Ryan's extended family. Aunts and Uncles who really make an effort to spend time with Ben and who love him like he's their own. Aunt Regina, you're at the top of the list.

5. Ryan's job. Ryan's job is steady yet flexible and I am thankful for all that it has provided us especially our new home. It allows Ryan to work from home and even attend some CF clinic appointments which is extremely helpful to me.

4. Great insurance. We are so blessed to have insurance that covers our whole family. CF is an expensive disease and we are lucky to pay the bare minimum.

3. Our CF team. Our team goes above and beyond for myself and Ben. They provide top care for him and are always willing to go the extra mile. They answer pages on weekends and always squeeze us in if needed. We are so thankful to have an amazing team that loves Ben and keeps him healthy.

2. Benjamin! My amazing, strong, handsome, studly son who amazes me every day. He has taught me to take nothing for granted and to be thankful for everyday. I love him more then I thought possible.

1. My husband. We've been through a lot the last 3 1/2 years and I love him more everyday. He works hard for his family and would give Ben and I the world if he could. Together we created an amazing son and I look forward to more.

Tuesday, November 23, 2010

Jill Carmel Photography

We have been having a blast down here in Carmel!! Last night I went to the 10pm showing of Harry Potter with my mom and brother. Way past my bed time but lucky my icee sugar buzz kept me going, ha! It was a treat to be able to go see a movie, something I don't get to do anymore. When Ryan and I get a night out we like to go to dinner where we can chat and catch up.
Tomorrow, we'll be hitting up the Monterey Bay Aquarium. We never get tried of that place and are so fortunate that my parents have membership passes. I just hope it won't be too crowded with holiday visitors.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Since I can't upload my photos, I thought I'd do a post on our recent photography session with Jill Carmel. Jill does a wonderful job of capturing who we are as a family. She has a great eye and we are always extremely happy with how our pictures turn out. What I like most about Jill is that she captures us in our own natural poses. I don't want stiff looking photos where we are sitting perfectly. That's not who we are! This last session I brought along a Thomas Train for Ben to play with. I hoped to get a picture of Ben playing with Thomas because that's who Ben is. When I look back at our pictures I want to see memories. Below is a sample picture of our session together.



Pretty awesome huh? If you'd like to find out more about Jill Carmel Photography, you can click HERE. She is based in Sacramento but will travel for a fee.

If I don't post before, I wish everyone a Happy Thanksgiving! Stay tuned for my Top Ten List of things I am thankful for!

Sunday, November 21, 2010

Randomness


Well, total bummer, my memory card doesn't fit into Ryan's laptop so no pictures til after Thanksgiving :( I did have one to post since I had already put it up on Facebook before my computer decided to go kaput. I also can't blog through Live Writer so my posts will be a bit different. I can't believe how much I lived on my laptop, ha!

The hat above was made by Sarah over at Virgina Blue. She specializes in hats and sells them on Etsy. You can find her site HERE. She makes beautiful, custom hats. Check her out! I had to give her a shout out because she makes such beautiful pieces and the income makes it possible for her to stay at home with Ginger who also has CF. There is nothing most CF moms wouldn't do for the health of their kids!

We are having a relaxing, fun weekend. We are getting ready for Thanksgiving by packing and doing laundry. Ben attended his first official "kid" birthday party yesterday. He had a blast! It was a Mickey Mouse theme so he went running all over the house excited pointing out all the Mickeys! He even managed to swing the bat at the Mickey pinata. Ryan and I thought he was going to hug it instead of swing at it, ha! He did end up dropping the bat and clapping when everyone cheered for him , it was too cute.

We put up our fake Christmas tree today. I know it's a bit early but I'm just so excited to celebrate Ben's second Christmas. He is going to have so much fun this year opening his presents.

I'll keep everyone updated as much as possible but posts will be few. Once I get my laptop back, I'll put up plenty of pictures.

Friday, November 19, 2010

Still here!

We are still here! My laptop is in the shop until December 1st (pure torture) so I'm back to Ryan's five-year-old desk top til then. I can't even use my memory card on it. I do have some fun pictures to upload so when Ryan gets home I'll use his. Hang tight!

Monday, November 15, 2010

Are you?

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.

Saturday, November 13, 2010

A boy in a box

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!

Ben 20 months 008 Ben 20 months 002Ben 20 months 003

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!! 

Friday, November 12, 2010

Treatment time

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.

Ben 20 months 018

Thursday, November 11, 2010

Mann Park for Manny

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!

Ben 20 months 011 Ben and Avery walking up the stairs, holding hands. Makes me melt.

Even though our little Prince doesn’t like to get dirty, he seemed to tolerate the sand around him.

Ben 20 months 009This is the face he makes when sand gets on his hands. I blame Ryan for these traits, ha!

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!!

Wednesday, November 10, 2010

Wordless Wednesday

 

Ben 19 months 233

Monday, November 8, 2010

Is bigger better?

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.

Ben 19 months 237 I’m never going to be able to get him to swallow those! They’re like a horse pill. I don't think I could even swallow them. So, I’m asking myself the age old question, “Is bigger really better?”

Sunday, November 7, 2010

A huge sigh of relief

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.

Ben 19 months 215

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!

Friday, November 5, 2010

Fabulous News!!

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 19 months 198

Wednesday, November 3, 2010

Pseudo update

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.

Tuesday, November 2, 2010

The good and the bad.

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!

Ben 19 months 214I’m enjoying our driveway because my husband can now wash our cars- something we really missed while living in an apartment. Ben was so excited to get out and help Ryan.

Ben 19 months 192He’s going to make such a great husband one day :)

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.

Ben 19 months 203   Some how water just tastes better when it comes from the hose versus his sippy cup :)

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.

Sunday, October 31, 2010

Happy Halloween!

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…

Ben 19 months 183

Our little conductor :) He even blew his whistle.

Ben 19 months 177

Related Posts with Thumbnails