The much anticipated, Emme Jane has finally arrived! Our good friends, April and Troy, had their second daughter early Saturday morning. She was due to come any minute all week but of course, she waits until I leave for the weekend, to make her grand entrance. I couldn’t wait to get my hands on her.
In other news, the newest and coolest CF invention arrived at our house today. A woman on Etsy, sells these harnesses for CFer’s or any other kids that require nebulizer treatments.
Ryan and I had the best time this weekend. We traveled down to Carmel Valley to attend the wedding of two high school friends. We were really excited because we knew it meant that we’d be seeing a lot of old friends. It was a blast!!
The weather was perfect and even better was the ceremony and reception took place 3 miles from my parents home. It was nice to know that Ben was close by even though I never need to worry when he’s with my mom. I’m not sure if Ben and my mom had more fun together or me and Ryan!
The drive to and from was pretty crappy, we hit some major traffic. However, Ben found that an US weekly magazine passes the time well. Perhaps he’s a Jerseylicious fan?
Looks like it!
For the last week Ben has just been acting bad. Fussing for no reason, clingy, not listening and just all around different. Ryan and I weren’t sure if it was still due to the hospital stay or not. His BM’s were also off. He was having multiple a day which wasn’t like him. He’s usually pretty regular. Something wasn’t adding up.
I talked to the CF team and they said that his Creon dosage was correct for his weight and that they wanted us to wait it out and give him some more time before they added/changed his meds. My mom suggested that he may be teething so I looked in his mouth but saw nothing except the six he already had.
We couldn’t figure out what was going on with our little man. We had been tossing around ideas all day. We HATE having to be tough on him especially when it seemed like something was bothering him. Perhaps we were entering the terrible two’s early.
Tonight, I was sitting next to him on the floor when I noticed him chewing on his fingers. Something he normally does not do. So I cleaned my hands and stuck my finger in his mouth to give the teething theory another shot. And low and behold….
We have our first top molar!!
I am so excited for Ben to be getting more teeth. I feel like he’s kinda behind with only six seven but his regular pediatrician said to not worry. I am more thankful for an explanation to his fussiness. We can help him now by giving him some Motrin and knowing what’s going on with him.
He also went in for his fifth (who’s counting at this point?!) haircut yesterday. He screamed. the. entire. time. Ugh.
Our playgroup has been buys lately, and I’m loving it. I like to have something planned for Ben everyday even if it’s just going to the mall. With no backyard, I like to get him out of the house.
Sunday, Ryan and I took Mr. B to the park. We weren’t there too long before he got stung by the bee. However, in the short amount of 
On Monday, we went to the zoo. Big mistake. It was a free admission day, sponsored by Target and all of Sacramento seemed to be out. Since it was so busy, I had to keep a close eye on Ben so I didn’t get any pictures besides this one…
We are pushing through on treatments. They take a long time but we are hoping for a clear culture next clinic visit.
A video of Ben. Because it’s just been too long…
Ben splashing from Margaux Hughes on Vimeo.
Ben’s treatments have been going okay, he’s not liking the spacer (xopenex) on his face but we’re pushing through. I’m keeping my fingers crossed for good culture news.
We took B to the park today and he got stung by a bee on the palm of his hand. I freaked out for a moment because I know a lot of kids can be allergic to bees. Luckily, he had no allergic reaction and barely shed a tear. He is such a stud :)
Tomorrow we are hitting up the zoo with our playgroup. Pictures to come.
Summertime is still in full swing here in Folsom. After our dreary, cold stay in San Francisco, we were excited to be back to the heat. The weather, in my opinion, has been perfect- high 80’s/ low 90’s. However my girlfriend April, who is due to have her second daughter any minute, would have to argue. But wouldn’t you at nine months pregnant?!
I’ve been trying to keep Ben busy since we’ve been home. Today we went over to our friends house to enjoy their backyard and some water toys. Our Hawaiian tan has disappeared due to the florescent glow we endured for two weeks, so I thought it was time to get out and get some vitamin E.
I brought over some watermelon and B ate the whole thing!
I thought I’d update a bit more on our discharge. Ben’s PICC line was pulled pretty easily without tears. They just had to hold his arm still then gently pull the catheter out. Look like he’ll have a bit of a scar just like the spot on his ankle from his first line. He did have some skin irritation in the area where the tape was. He still does have some sensitivity to tape.
We are going home on Hyper Sal and TOBI. Our prescription hasn’t arrived so B’s had a few days off of HS and his cough seems to be subsiding. If his cough flares back up when we start HS we’ll talk about switching him to Pulmozyme. We will be doing 25 days of TOBI then culturing him on the 17th. Ben will need to have 3 pseudo free cultures before we are declared pseudomonas free. We will be doing on/off 28-day cycles of TOBI until then. Keep your fingers crossed for good news. If Ben can’t get rid of the pseudo we will be talking about starting a new antibiotic called Cayston. For some reason I can’t create a hyperlink to Caystons website, so you can read about it here: http://www.cayston.com/. This is a couple months away if at all so we aren’t putting too much thought into it.
Ben is having some trouble getting back into our routine. For two weeks, he got to eat what he wanted, got his paci 24/7, watched endless amounts of movies, had new toys given to him daily and didn’t hear the word “no”. So it’s been a bit of an adjustment, getting back to our normal routine. Our CF team warned us that it may be hard for him but just to give it time. I hate having to discipline him so much, he’s usually such a good boy. It’ll just take some time and patience on everyone’s part. When I took him to Gymboree yesterday, he ran all over the place. He wanted nothing to do with any organized activities (parachute, song time) but I figure it’s his time to do what he wants. I’m not going to force him to sing songs with me. Anyways, he has 2 weeks of pent up energy to get out. We’ll be keeping our fingers crossed that things get easier for him in the next couple days.
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