Thursday, March 29, 2012

Big boy

Right now I'm sitting at my desk watching my big boy do his 30th TOBI nebulizer while he watching Sesame Street for the billionth time. He's been on TOBI for 2 weeks so far. We have 10 more weeks to go. It seems like a long time but we'll get through it. He has about 140 more TOBI treatments before we're finished in June. All I can say is my kid is fighter. He's strong willed which I think is a great trait to have when you are looking at a life where you're going to need to fight something as horrible as CF.

He's such a good little boy! For the most part he doesn't complain about the treatments. Every once and a while we'll find him running away from the couch, where we do treatments, but most of the time he willingly gets up on the couch for his treatments. I'm so proud of him.

We finished the oral antibiotic Cipro last night. We were happy because about halfway through he started having a horrible diaper rash. It was nothing Desitin couldn't cure :)

We are hanging in there as a family. It's been a struggle and I know it will continue to be a struggle but we've all come together. I hope that my friends and family are more aware of what Cystic Fibrosis is and how serious it can be. It's been scary, but we are optimistic and can't wait for the day that we know that we've kicked Pseudomonas to the curb!

On that day Ethan will get almost an hour and half of his day back. He'll have a little freedom from nebulizers and extra vest treatments. I can't wait! June here we come.

Thank you for your prayers and words of encouragement. They help more than you could know.

Wednesday, March 21, 2012


Life has been very overwhelming lately. I'm stuck in an endless cycle of vest treatments and nebulizer treatments. We spend a little over an hour in the morning, 20 minutes at lunch and another 45 minutes before dinner time doing treatments. For 2 1/2 hour a day we dedicate ourselves to machines hoping and praying that they will do the job.

That's just the machines. There's still the antibiotic 2x a day, enzymes (10 a day), vitamins (3 different kinds) and getting him to eat more than just a few bites of something. Top that off with the diaper rash from hell because of his antibiotic and you get one crazed mom.

Last night as I was trying to get to sleep for two hours (even after taking 2 Benadryl) my mind raced and I couldn't stop thinking about CF. There's a song we're using in our Great Strides video this year that kept playing over and over again in my head. I kept thinking about what's ahead for us. It scared me. I don't know what's ahead. Even when we do get rid of the pseudomonas, when will it come back and will we be as lucky as we were this time with finding it so early. I thought about how I would handle life if something was to happen to Ethan. I don't think I could.

When you're the mom of a child with a chronic illness you try to live in the moment and not think about the future too much. There are too many unknowns. We hope for the best and hope it all works out.

I think the pseudomonas is what has pushed me over the edge. This isn't a quick fix. It will takes months to get rid of it and even then it may still linger. We will always have to fight. It's unfair.

I feel like this is unfair to Ethan. He sits doing treatments for hours a day when he should be running and playing. It's unfair that when we go to the playground or the mall I even have to think about how many germs are on everything. It's unfair that this morning I had to cuddle him for 10 minutes longer because he feels horrible, before he would put his TOBI mask on to do his treatments. I want him to have a normal life and he won't. We can try but this is his reality until there's a cure for CF.

Sorry to be such a downer today but that's life for me right now. I'm sure in a few days I'll be more optimistic and upbeat, but for now life sucks. CF sucks!!!

Thursday, March 15, 2012


Ethan's culture from last week's clinic came in yesterday and it showed that he had grown a bacteria called Pseudomonas Aeruginosa. This is one of the bacterias that is especially harmful in Cystic Fibrosis patients lungs. We've been hoping and praying that he wouldn't get it for a long time. It's inevitable that he was going to get it eventually.

As soon as I saw the result on the Kaiser website I emailed Ethan's pulmonologist to ask her if it was the bad one then I called one of my friends who has a son with CF to ask her opinion. She couldn't remember which pseudomonas was the bad one either. Luckily after a call to the pediatric pulmonary nurse, Ken got her on the phone and just as she was talking to him our pulmonologist came down the hall to tell her to call us. We are lucky that our team is so aggressive in treatments. This is why we have cultures and appointments every 3 months so we can catch bacteria before it continues to grow.

Pseudomonas Aeruginosa is found all around us. It's in soil and even water. It's very hard to not come in contact with. In fact, everyone by the time they are an adult have pseudomonas in their bodies. It effects patients with CF more severely because of all the sticky mucus buildup in their lungs. It's hard to get rid of.

Ethan was started on a new nebulizer called TOBI for the next 90 days and an antibiotic called Cipro for the next 14 days. Unfortunately, the Cipro can only be found quickly in pill form so we have to crush it and mix it into his food. He's onto us. We've got to figure out a new way to get it in him or hope we can get our hands on some of the liquid soon.

This all is very stressful. We're worried about Ethan and how we're going to get rid of this bacteria. I hated putting him to bed last night knowing that the bacteria was just sitting in his lungs. In 6 weeks we'll go back for another culture and hopefully it will come back negative. If it's positive Ethan will have another round of antibiotics. Either way we'll be doing TOBI for 90 days to ensure that it's gone. After the 3 months are over, Ethan will go in for a brochoscope to check to see if the pseudomonas is completely gone in all of his lungs. If it's not he'll be hospitalized for IV antibiotics. The pulmonology team is very optimistic that they will eradicate it from his body. I just hope it's sooner than later.

Unfortunately, Ethan can get pseudomonas over and over again throughout his lifetime. It's when it makes its home in his lungs that he will have problems. We're hoping and praying that the next 3 months will go smoothly and that we will beat pseudomonas!!!

Thanks for all your prayers! We can feel them.

This is a photo of Ethan doing TOBI for the first time. It was also his first time using a mask. He fought us for 20 minutes kicking and screaming but in the end held his own nebulizer to finish the treatment. Today we had success with both of his morning nebulizers. He barely fought us. I think we're headed in the right direction.

Tuesday, March 13, 2012

Stay-at-home mom

I'm a stay-at-home-mom for now and it's taking some getting used to. I like that I don't have to follow anyone's rules and I can plan my days around what I want to do, well sort of. I have to plan around Ethan, but you get what I mean.

It's been a little over a month since I quit my job and I'm still looking for work. I'm enjoying my time at home but I'm also a little bored. It seems like all the things I want to do with my free time involve money, which we don't have. Even a simple trip to the zoo cost something and now that Ethan's 2 he is not free most places. So we fill our days with trips to the park, walking with neighbors, play dates, play group and the occasional trip to Target or the outlets to explore.

I'm not complaining. I'd much rather be at home with Ethan than at work. I just need to get into a groove. By groove I mean I probably need to work on cleaning my house a little more than I do. It's not filthy but I don't clean nearly as much as I should. Sure, the bathrooms aren't disgusting, but the dusting that should have been done a month or longer ago is driving me crazy. But do I do anything about it no. I just go take a nap. It'll eventually get done.

I like taking naps when Ethan takes naps and sleeping in until he wakes up in the morning. What can I say, I love to sleep. I always have. I just hope I'm not being a lazy stay-at-home mom. I watch other moms and think they are super woman. They cook dinner every night, keep their houses looking great, toys organized and sometimes they even put makeup on. Shocking, I know. The best ones even bake during the day. I just can't summon the drive to do all these things. Am I the only mother who's this way?

I guess I'm too hard on myself. After all my kid is clean, knows his ABC's, does puzzles, reads all day, and is happy for most of the day. Why am I so hard on myself? I'm raising a good boy and that takes time and energy everyday. I'm being productive by taking good care of him.

So if having a messy house is my reality so be it. I'm not super woman and probably behind it all none of the women I think are perfect are super woman either. You can't do it all. Sometimes the most important thing about being a mom is being present and not running around like a mad woman all day. We all have been there. I just need to keep reminding myself that Ethan will only be small for so long and I need to be present with him everyday so I don't miss this time. I have the rest of my life to keep my house clean.

I'm mostly thankful for a husband that doesn't make me feel like it's all on me. I don't get asked why the house isn't in order all the time or why meals haven't been planned for the week. We figure it out together. I guess I do need to step up my game now that I'm home everyday, but I'll get there eventually. I'm not going to stress about it though. I'm a good mom and a good wife even if I don't get it all done.

Saturday, March 3, 2012

What Ethan's saying these days

I've noticed over the last couple weeks since Ethan turned two he's been talking a lot more. I figured I need to blog about it so I can remember all the cute things he's been saying.

"Cotco" (Costco) He will point to Costco no matter what direction we are driving towards Costco. He knows where it is and all the roads that lead to Costco. Even when we're at Target or Safeway he will still talk about Costco.

"etza" (pizza) Today at Costco as soon as our pizza came to our table he was talking about pizza.

"cookie" He says this one mostly about the cookie monster on his diapers. One night before bed he pointed to the overnight diapers and said, "Pooh" and then to his daytime diapers and said, "Cookie".

"Bow Mommy" This is his way of saying "No Mommy". This is his response to most of my requests. It's the way he says it that makes it so cute. He's so sure of himself and certain that if it's my idea it must be a bad idea.

"bubbles" While having photos done yesterday at the park he played with bubbles and couldn't stop saying the word. He knows all about bubbles and loves them.

"Eo later" (See you later) He's now started using this one when he's supposed to without hearing someone else say it.

"Ere you go" (Here you go")

"Go Mommy" or "Go Daddy" He says this while we're driving and when we're not following him fast enough.

"bapple" (apple)

"Welwa" (Ella) He loves his cousin Ella who is almost exactly two years older than him.

"Melmo" (Elmo) His best friend is his Elmo that Ella gave him for Christmas from her own collection. He sleeps with it every night and plays with it during the day.

"cheese" He uses cheese for Mac 'n Cheese, sliced cheese and his fake cheese from his kitchen.

"TT" (for his auntie) Whether she's in her car or right in front of him he has to yell "TT" whenever he sees her.

"NanaPapa" It's usually one word because he's so excited about his Nana & Papa.

"sky" He says this as he points to the sky

He loves to sing songs like "Inkle, Inkle Little star" and "Baa, Baa Black Sheep have you any wool", "Row, Row, Row Your boat" and "ABC's".

I can't remember anymore words right now but I'll try to post more about what he's talking about as he continues to talk more. It's so fun to have him start copying us more and also makes us pay a little more attention to what we say.