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?

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.

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.
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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!

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.

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!

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.

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!

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

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.

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 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.

This 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!!

Wordless Wednesday

 

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.

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?”

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.

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!

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!!!

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.

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!

I’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.

He’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.

   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.