Sunday, August 28, 2011
My other announcement is that we are moving! If you know us, you shouldn’t be surprised. This is our 6th move since we got married four years ago and my ELEVENTH move since I went away to college in 2000. Needless to say, I can pack boxes in my sleep.
Ryan has been promoted to management at his work so we are packing up and moving to Orange County, 8 hours from where we live now.
I have to be honest, I am having an extremely hard time with this move. I am leaving my friends, our playgroup, our clinic, and our home behind and I often find myself questioning our decision but I am trying to focus on the positive. I believe in my husband and support his dreams and his quest to make a better life for our family. I have no doubt the first couple months are going to be hard but I am hoping we all adjust quickly.
This bodes well for my readers because I’m going to have A LOT more free time and family won’t get to see Ben as much, so blog posts will be more frequent. Please be patient with me the next couple weeks and I swear, it’ll pay off in the end. Lots and lots of photos will be coming up soon <3
Thursday, August 18, 2011
There has been something positive out of the last couple crazy weeks.
Ben has officially declared PSEUDOMONAS FREE!! Yes, his culture did NOT grow pseudomonas only some funky bacteria I cannot pronounce. He does have a cough but we’re going to watch it and give him some time to get over it himself. In a week we’ll reevaluate if he needs oral antibiotics. Hooray!!
This is a HUGE weight off my shoulders and I am writing Cayston a thank you letter. I had high hopes for that drug and it did not disappoint. Thank you for everyone’s prayers, I am off to celebrate!
Friday, August 12, 2011
I had to start this post off with some pictures of my energetic boy!
This guy has been keeping us on our toes lately. He’s full of energy, attitude and a zest for life. I think Ryan said it best the other day- we can’t wait for him to get up in the morning and we can’t wait for him to go to bed at night. He’s such a joy but exhausting!
Our full 12-week clinic visit was yesterday, down in the Bay Area. It went pretty well, Ben’s lungs are clear but he has not gained any weight in over 2 months so that concerns his doctors. He did grow over 2 inches in height so I’m not as worried as they are, however, we have decided to switch his enzymes from Creon 12 to Zenpep 15. His diapers have been a bit loose lately so we’re hoping the enzyme switch will improve his stools and weight gain.
But I wouldn’t be surprised if this kid is burning off all the calories he intakes. He just loves to run and wrestle with his Dad. Our nutritionist talked about adding some more high-calorie foods into his diet and I cringed when the words “McDonalds” came up. She encouraged us to let Ben eat there more often but I have some issues with that. He gets Mickey D’s, as a treat, about once a week if not less and while I understand the need for high-calorie foods, I have an issue with feeding him junk food. In my opinion there is a difference between food that is high-calorie and junk food. I understand in extreme cases, CFer’s need to eat fast food a lot but we just aren’t there. Ben is still in the top 70th percentile (a big drop from his 90th status for over a year) and is in the top 90th percentile for height. I just can’t validate Ben eating fast food anymore then he does. He needs to develop healthy eating habits and those don’t include microwaveable meals or fast food. I just believe there are other “healthier” ways to add calories to his diet.
We will be adding Carnation Instant Breakfast into his milk, eating more peanut butter, and adding a bit more butter to his waffles in the morning. This, combined with his new enzymes, will hopefully help him put back on some weight. If anybody has anymore suggestions, I’d love to hear them.
They cultured Ben before we left and the results will be in next Tuesday to Wednesday. This is the big if culture for him. If the this culture comes back clear, we will officially be declared Pseudomonas free. Fingers, toes, and other appendages crossed, this happens. I’ll let everybody know when the results come in ASAP.
Wednesday, August 3, 2011
Haircut number 8 that is! Yes, Ben got his 8th haircut this last weekend! Ryan finally decided to attempt the haircut himself so we could save some moolah on haircuts. Ben did great and it only took 2 popsicles to get through it.
Now, I know some people will be disappointed but a buzz cut is so much easier in the summer. During Gymboree, Ben gets really sweaty and this will hopefully help keep him cool during out hot summer months.
We have lots of fun stuff coming up. Full clinic visit next week where we’ll see our whole team and Ben will get cultured again. Fingers crossed that he cultures no pseudomonas this time so we can officially say, we are pseudo free! The 9th is Ryan’s 30th birthday, the 11th is our 4 year wedding anniversary and the last weekend in August we are flying down to San Diego to celebrate both Ryan’s birthday and our anniversary. This summer sure has been busy for us!