Once again, it’s been awhile since I’ve updated. I’m kinda in a blogging funk right now. There’s lots going on, some good, some bad but most I’ve come to feel at peace about.
I’ve always heard horror stories from other CF parents about losing friends or family members after their child’s diagnosis. Some people are scared by all CF entails, don’t want to get emotionally attached or simply choose to not understand CF.
Up until recently, I’ve been proud to say that not only have we not lost one single friend or family member, but we’ve found that people have come out of the woodwork to embrace Ben and all that he is. But times are changing and that’s no longer a true statement. While it saddens me, I feel comfort in the fact that our CF team stands behind our decisions regarding Ben’s health 100% and in the end, that’s what matters. Like I said before, I have finally come to a place where I am at peace with the fact that I cannot control other peoples choices, heck I don’t even have to understand them. I can only hope and pray that minds are changed and bridges rebuilt.
Now on to the good stuff. Over the past week, Ben has started saying THREE new words!! Hot, bump and car are now apart of Ben’s vocabulary! Ryan and I are so excited about this and are delighted with his progress.
I set down his dinner plate in front of him a couple nights ago and he looked at his food and said, “hot”. Ryan and I were jumping up and down giving him high-fives!
Now that he knows the word car, he’s been hollering it out while we’re driving. Not only can he say the words, he’s using them in the right context.
I feel good about not pursuing speech therapy. As I thought, he only needed some more time to start speaking. I have heard from plenty of mom’s that their little boys didn’t start speaking until they were three and it really made me feel better. We’ll continue to encourage Ben to say new words, even when he shakes his head at us, ha!
I hope everyone had a good Memorial Day weekend. We so enjoyed having three days together and even got to go out to a BBQ without Ben yesterday. It was great to see friends and get some “adult talk” in!
Tuesday, May 31, 2011
Tuesday, May 24, 2011
We are done! And successful!
I don’t think we could have asked for a better day. I got out of bed easily (at 4:45) and my mom and I were on the road to the Capitol by 5 am. We went through set up and before I knew it, our team was there to walk.
I can’t say thank you enough, to all our walkers. I know some people traveled far to be with us and we appreciate all the effort. A huge thank you goes out to my mom and Ryan’s aunt and grandma who stayed after to help with the raffle.
The weather was gorgeous and everything went off without a hitch.
There was a wall of champions put up to show off all the CFer’s in our area.
It took all weekend for me to recover but I truly think it was our best year yet. Thank you again to all who came out to show support for our little man. We exceeded our Sacramento chapter goal of $150,000!
Thursday, May 19, 2011
On Tuesday we hit Disneyland in the morning and California Adventure in the afternoon. My mom took Ben back to the hotel room so Ryan and I could have an afternoon to do the “adult” rides. We took on Indiana Jones, Space Mountain, Tower of Terror and Soarin’ over California. Ryan and I had a blast just hanging out together, drinking beer, eating cotton candy (just me) and then getting stomachs from all our food and rides. California Adventure seriously has the best food!
Before all this though, we did our character breakfast. We were both a bit hesitant, not knowing how Ben would react to the characters. Last thing we wanted him to do was freak out in the restaurant. But sure enough, Ben loved seeing all them and even gave them hugs.
The carousel ride that he LOVED then threw a major tantrum when it was time to get off. We had to peel him off the horse, kicking and screaming.
The slide at CA we went down a gazillion times!
Isn’t that the most priceless smile?!
In two days is our walk and it’s not too late to join us! Click the upper icon that says, Ben’s Brigade to support an amazing little boy!
Wednesday, May 18, 2011
We’ll be meeting at the Capitol around 8:30am. My mom and I’ll have been there since 5:30 (eek!) so anytime you want to arrive before then is fine.
There will be coffee, muffins and fruit in the morning.
There are going to be TONS of activities for kids there. Fire engines, a clown, arts and crafts and a lot more. Come prepared to have some fun!
Lunch will be served after our walk.
We will take a team photo either after the walk or just before. Please don’t leave til then! I want to make sure we get everyone in it.
Bring some cash. There is a raffle with some REALLY, REALLY cool prizes that I helped put together. Trust me, you’ll want to participate.
There will also be Venders Village where various people will have tables set up, showcasing their different products (ie- Pampered Chef, Jewelry, Hair clips) so you can enjoy all they have to offer.
Any walkers who have collected money (that wasn’t donated online) will turn it into me or Ryan there. I’ll hand it off to the right people to be counted towards our team goal.
I will check in for our group. Just come find me and I’ll give you your t-shirt and food coupons.
This year we won’t be wearing anything specific. I’ll have our BB sign to designate our team and possibly balloons but nothing specific people need to wear. I just didn’t get my stuff together this year to make it happen.
You can park in the 10th and L parking garage for a flat $5 fee for the day.
GS is stroller and dog friendly so bring either.
Call me or Ryan anytime. We can’t wait to get out and raise awareness for our little stud!!
Monday, May 16, 2011
We’re back! Phew, it’s been awhile since I’ve been on here. I took a break from blogging and even answering my phone while on vacation and it felt WONDERFUL! But we’re back and have hit the ground running because GS is this weekend!
But first to our trip. We had a BLAST! It was fun, exciting, exhausting and all in between!
Saturday, we headed down to Santa Barbara where my grandma lives. Ben did awesome in the car for over 6 hours! It helped that I bought some new DVD’s for him to watch because I couldn’t sit through The Incredibles (his current favorite) for 6 hours.
We were in SB Saturday to Monday morning when we headed out for Anaheim.
We got to the Disneyland Hotel Monday afternoon and immediately hit the Magic Kingdom. I’m only going to post up a couple of photos because I currently have over 100 already on my computer. If you’re my friend on Facebook, you can see them all HERE.
This was only the first day! We managed to get a good nights sleep and hit Disneyland and California Adventures the next day.
I’ll post more tomorrow, I’m off to my last GS meeting before Saturday. If you’d like to donate or join us click HERE. Thank you!
Thursday, May 5, 2011
In 3 days, we head down to Southern California to start our vacation! I am so excited for this trip. Ryan and I can’t wait to take Ben to Disneyland for the first time. He’s going to FREAK. I’ve already set up a Mickey Mouse character brunch for Tuesday before we head to the Magic Kingdom.
Of course, these next two days are full of chores, and preparing to leave. Paying bills, doing laundry, cleaning house and packing. We are stopping our Cayston treatments for a week at the okay of our NP. We are completely okay with this and feel it’s what’s best. I’ll pack enough nebs to get us through two days at the hotel and then will boil them when I get to my aunt and uncles. After Disneyland, we’ll spend a few days with family down in Mission Viejo and we have a lot planned out but I’m not sure how much we’ll get to. Lego Land, LA Zoo, Griffith Park and swimming are on the list. I’m so excited to get down to the sun and surf.
I’ve been nose-deep in my new book that arrived via UPS on Tuesday. It’s the 11th installment in my Sookie Stackhouse series that I love so much. I devoured the book in one day and was eager to jump online to participate in the book forum that I’m apart of. My husband doesn’t understand my love affair for Sookie but he embraces it none-the-less. I used to read a lot in high school but didn’t as much in college due to all the reading of text books I was doing (ha!).
After Ben was born and we got into a routine, I was able to pick it back up again. Reading is an escape for me and is the one place in my life where CF doesn’t exist. I’m just another avid reader online and my fellow Sookie-lovers know me as no other and it’s nice to not have to talk about treatments, pills and other stuff. I am looking forward to rereading my new book and diving into another series I’m starting this next week.
Before I go, I have to leave this video of my mom’s testimony about Ben and his CF that played at her church last week. It’s a wonderful video that brought tears to my eyes. Her part is at the beginning, you don’t have to watch the whole thing. For some reason, I cannot upload the video but you can click on the link. Enjoy.