Rain, Rain, go away

With our heat wave over, a rainstorm has hit the Sacramento area. Ben has been doing well but seems to be getting restless being indoors so Ryan and I took him to the mall today. We picked out a birthday outfit (yeah!) and let him play in the kid area. Tomorrow we are heading up to Truckee to visit my parents who are skiing up at North star. I’m excited to put Ben in the snow again!

He is still coughing so UCSF is having us add Xopenex, a bronchodilator, into his TOBI meds. The Xopenex will help open his lungs, letting the TOBI get in deeper. Luckily, we had some Xopenex from when Ben was first born. He was put on it twice a day but later taken off.  Makes our treatment time longer but I hope it will help kill off the pseudomonas.

He has also been put on an extra dose of vitamin D. His levels came back a little low, normal range is from 30-100. Ben’s level was 27 so he now takes vitamins ADEK twice a day along with an extra dose of vitamin D.  I’m sure once summer comes he won’t need the extra dose. A week in Hawaii will give him plenty of sun!

From baby to boy

I get so many call and emails from family members saying how much they love seeing pictures of Ben. I mean, who can blame them? He is a little stud. So I had to put up some more for everyones enjoyment. It’s been so easy to take pictures of him, he has really taken off the last couple weeks. He has quickly turned into a little boy who is hard to keep up with!

He loves to help me vacuum. He has to be the only child not scared by it!

His new tunnel has provided hours of fun for both him and Sailor!

The newness of TOBI has worn off so we have to think of creative ways to get it done. Hense watching the Wiggles on Dad’s shoulders!

The remote is his new obsession. He actually pushes the buttons and looks at the TV to see if it’s turned on. Perhaps he watches too much? We try to not let him but between CPT and TOBI time, he does get his fill.

 

He even tried to change Sailor!

That’s our little man!

Wordless Wednesday

His Father is so proud!

Positive CF news

Today, there is positive news on the CF front. The FDA has approved the inhaled antibiotic drug, Cayston. This drug will help CF patients to fight of Pseudomonas, the bacteria Ben just cultured. Right now, TOBI, is the only inhaled drug to help fight this infection. If left untreated, pseudomonas can lead to lung infections. Lung infections are the leading cause of death in CFers so the more drugs available, the better. Many CFers develop a resistance to existing antibiotics so it is wonderful that there is now another drug to help them fight off pseudo. If you’d like to read more about Cayston, click HERE.

Cayston, is ONLY available because of the CF Foundation. They helped fund and advocate the development/approval of the drug. All the more reason for us to continue donating to the CFF. Every dollar counts! 90 cents of each dollar goes directly towards research for better drugs and a cure. Please, please, please continue to donate what you can. You can sign up to walk/donate/learn more by clicking my Great Strides widget on the upper left hand side.

Do it for this guy….

 

It is estimated that we lose someone to CF EVERYDAY.

I refuse for Ben to be one of them. We will fight tooth and nail, with everything we have until there is a cure or control for this disease. Please join us in our fight!

It was bound to happen

Our first shiner.

Poor Manny, he was reaching for a toy when he hit his face on the coffee table. We felt so bad for him, I’m sure it’ll turn into a black eye in the next few days.

Just when we thought it couldn’t get worse….

an hour and a half later, he slams his face into the wall.  He seriously left a dent in the wall :(

He seems to be not feeling well. He has been clingy and very sleepy. I really hope he’s not getting sick again. Keep him in your prayers.

However, most days we can’t seem to keep up with him! He is walking EVERYWHERE and putting EVERYTHING into his mouth!

We went to Ryan’s grandma’s house for dinner last night. While we were there we had to do his CPT, so we turned on Sprout and attempted our CPT. However, Ben had other plans. He loved that the TV was so low.

He kept on trying to touch Thomas. It was one of those times in which you know what he’s doing is not good for him but at the same time it was too adorable to stop.

On a positive note, we are half way through our TOBI treatments. Two weeks left and we will hopefully be done.

Adventures

I am continuing to try and get Ben out of the house. He has so much fun when we go out that I try to think of things to do. Luckily, Folsom has many activities to offer. I took him to the park with my good friend April and her daughter, Ella.

However, he discovered a woman in a wheelchair there that he could not leave alone. He kept walking up to her and trying to push her! I felt really bad but she was very gracious about my son trying to push her. Funny but slightly embarrassing!

Poor Ben, he did not have a good night last night. We took him over to dinner at our friends house. He feel asleep in his pack-n-play but when we went to put him in his car seat to go home, he screamed. And screamed. And screamed. I think all three of us were in tears by the time we got home. He was just having an off night, he continuously woke up crying.

So we decided to make it up to him and take him to Bounce Palace. I think he had fun….

  

In fact, I know we all did!

Somebody.....

…got a haircut!

Half of you voted (thanks for voting!) to have his hair grow out but I couldn’t let it get any shaggier. She did do a faux hawk style when she was done but I didn’t have her cut it this way.

I took him to a Jack and Jillybean’s children’s salon in Roseville. We both had a good time! He sat in a police car with Thomas the Train playing until the DVD wouldn’t play.So we moved to the fire engine to watch Baby Einstein.

 

I am very happy with the results. She did a great job and even after we washed the gel out, his hair looks good. It’ll be the perfect length by the time his birthday party comes around.

We had to show off his new, cool hair style so we decided to move on to the Roseville Galleria Mall. We window shopped and played in the children’s area.

  

Standing up from Margaux Hughes on Vimeo.

 

We are continuing to take advantage of our beautiful weather (70’s) by getting out. Ben stood and watched our gardener mow the lawns for twenty minutes. Pure fascination.

Wordless Wednesday

He’s going to be so mad one day but he had a diaper rash that needed to be aired out :)

Wacky Tacky

The weather here has been beautiful the last couple days (almost 60’s- Jen don’t be jealous!) . So, we are trying to get out and enjoy it. I have been getting Ben out of the house to exude some energy. Ever sense Ben started walking, our apartment has felt smaller.
Today, we went with my MOPS group to Wacky Tacky in Roseville. We had quite the day! Manny walked around everywhere!

I didn’t realize, however, that being a Monday on a three day weekend, would make this place crazy. There were ten-year-olds running around almost knocking down Ben.  At least Ben got some good energy out. He was asleep in his car seat before we left the parking lot.

And, because no blog posting would be complete without an almost-nuddy pic…….

He’s been kicking this ball around the last couple days. Ryan and I think he’s going to make an excellent soccer player  :)

HVD

Happy Valentines Day!!

Ben is continuing to do phenomenal during treatments. The TOBI takes about 20 minutes, the length of two wiggles episodes so it works out perfectly.

He is walking 85% of the time. He only crawls when he is going after our cat, Sailor. He has even learned to stand up on his own. It’s so cute, he puts his little butt in the air then slowly stands up. I’ll have to get a video of him doing it, it’s priceless!

His appetite seems to be coming back. It took a dive last weekend when the cough made it’s appearance. His favorite food is smoothies which I have been making him. He even knows how to use a straw. His enjoys walking around drinking his smoothie.

As you can see, he’s walking everywhere!

Continuing to give LOTS of kisses to everyone!

Confirmed

Our CF clinic called yesterday and confirmed that Ben has pseudomonas growing in his lungs. I had 5 minutes of, it’s all my fault, and then I realized that short of keeping him in a bubble, I couldn’t have prevented this.

His cough has improved vastly since starting TOBI. I’m glad we were able to start immediately and not wait for confirmation on his cultures. I am learning to enjoy and cherish these 28-days of TOBI. It’s a time of semi-calmness that I get to enjoy with my son. He snuggles up to me and we watch one of his shows together. I have realized that I never want to take anything for granted with him. I will cherish every moment, even if it’s doing treatments.

Today, we traveled down to Santa Rosa to visit Ryan’s amazing aunt and his grandpa who celebrated his 93rd birthday two weeks ago!

It was so good to be able to visit with him. Papa always enjoys a visit with his great-grandson!