Disneyland was magical and fun! We chose to drive down late Friday night for two reasons: so that the girls could sleep while we drove and so that Brooke, who doesn't do so well in the car, wouldn't have too much of a fit and throw up in the car, which she usually does on car rides over 20 minutes. Driving until about 3:30AM and ending at a hotel over the grapevine, it was a success! Brooke actually did very well staying up until 11PM in the car watching Baby Einsteins.
The next morning we had time to waste before checking in to the timeshare, so we headed for Santa Monica Pier. It was enjoyable to people watch and have some lunch. We took a long stroll down the beachwalk and played some in the ocean, which was packed!
We met up with my mom and Ezra later on at the timeshare and waited for an extra great room...and it was! My good friend from Hygiene school met up with us at Cheesecake Factory for dinner, then we headed back to our mini porch to watch the firework show!
The next 4 days were spent at Disneyland and CA Adventure. My mom was able to meet up with a childhood friend as well, which we all enjoyed. Brooke wasn't so sure about most of the rides and seemed to anticipate the scary parts of each one. She did enjoy Small World (much to our dismay) and the Playhouse Disney show. Towards the last day they both warmed up more to the idea of taking pictures with the characters and Brooke always tried to hold their hand.
Faith was a complete joy most of the trip. The second night we watched the fireworks from Main St. in Disneyland and she was flabergasted. I was holding her for the first half and her face was lit up and soaking in the magic. She kept squeezing my neck tight and saying, "I love you, Mommy! Mommy, I love you!" I think that was her only way to release the joy inside b/c it was bursting out of her! When Tinkerbell came out flying around the castle it was over, icing on the cake! Grammy was holding her by now and Faith grabbed her by the face and from 2 inches away was squealing, "Grammy, it's Tinkerbell! It's the REAL Tinkerbell!"
I skipped ahead of myself because our last ride that first night was Soarin' over California. We'd told Faith a little about what the ride was like as we were waiting. As the ride lifted us up high we were in the dark, so the first 'scened' it opened to when we started 'flying' was like we were in the clouds. Her face lit up with the biggest smile and bright blue eyes, she opened her arms and outstretched her fingers wide as if she were feeling the clouds....she was in awe. It was priceless.
She also loved the Matterhorn, always shouting "Woohoo!" and Space Mountain she kept saying she really liked and went on three times, but her face didn't always look so excited. We also did the "Build-a-Bear" workshop and Faith picked out a pink monkey, gave it mouse ears and a Tinkerbell shirt and named it Tinkerbell as well. She sleeps with it as I write. Oh, the other ride she loved was Peter Pan (my favorite).
The single perk we've found to having CF is that we can get a special pass which allowed our group to go into the fast pass lane or straight up through the exit on most rides. The reasoning is so that she's not stuck in line next to all kinds of people with who knows what bugs all day long, as well as the heat exposure in the weather became more limited. "Regular" people aren't always excited nor understanding of why we get to pass them up, but Disneyland is the place where we get to play that CF card and by golly, we will!
The ride home went MUCH better than expected considering it was a mid-day drive...and Brooke only vomitted once :) Weren't you wondering?
~Stephanie
Disneyland 2009
April 2009
Yet again, the past few months have flown by! Last September we'd found out that Faith cultured Pseudomonas in her lungs for the second time, so every other month has been spent with an hour of additional daily breathing treatments....this will go on until there is a better medication to take it's place. We've learned to plan the year in advance around these months. Thankfully, that 'TOBI' month just ended and it sure makes us appreciate that extra time, having only one breathing treament to do daily!
Morgan has been working out of town quite a bit, usually once a week and Stephanie has been picking up extra work, now officially working Mondays and Wednesdays. We're grateful for the work, but it has thrown a slight curve into our routine. The nights Morgan is away we call 'girl nights' and Faith usually ends up in bed with mommy, eating popcorn or cookies. Last week she said, "Mommy, since daddy's not here will you do TWO big X's?" That's a part of our goodnight routine, Morgan says his little skit while tickling her back and I do mine...that night I had to fill in ;)
In February, Faith had her checkup with the pulmonologist and was amazing. She sat like a big girl and opened her mouth for her throat culture. She's really coping well with her medications, treatments and Dr. visits so long as we prep her for what to expect. A week prior to her 4th birthday, she was due for annual blood labs. That was not her favorite and yes, of course she cried, but it wasn't a screaming, frantic cry...it was a sad, 'I shouldn't have to do this, but I know I have to kind' of cry. She didn't want to hold her arm out, but was sitting in my lap so I opened her arm and the 2 techs and I were all softly talking to her while Brooke stood and watched. Just before or after the needle went into her arm, she completely stopped any of her strength against it and let it all happen. She did wonderful and by the 5th vial, which had a purple top, the one she'd wanted to have, she actually had a smile....through the tears. Best of all, her labs came back perfect! We had to redo the urine lab, but the second time was fine. At her CF Team appointment in March, we quietly celebrated Faith's 4th birthday by bringing in cookies for the staff....they've helped us to get through her 4th birthday with no IV's and no hospital stays!
Faith has been saying some interesting things lately. She tells us, "I love you 60 lbs," that number varies up to a million! Ahhh, to be loved a million pounds by your precious 4 year old is savory ;) On the way to that CF team appointment in Sacramento, she said, "I'm gonna be a mommy someday!" We followed with, "Yes, of course you are!" After a few more exchanges, she decided that she wanted to live with us forever and then said, "No....(about having her own baby) I won't know what to do!" It was SO cute, haha! She's alos been talking lately about how long we'll all live and how "our family will live forever, right?" She seems so young to be concerned about it, but she does have a few relatives who've passed and knows that if you squish a bug it won't come back...
Speaking of bugs, she's way in to looking for worms under rocks for some reason....gross. Faith's really enjoying her once a week at preschool and will start dance class back up again next week. Brooke has gone to school with her a handful of times now and LOVES it. We'll be going to a big Easter party/egg hunt there this weekend.
Brooke has been saying small sentences more often and tries to help by giving Faith her pills. Sometimes she attempts to sneak Faith's Prevacid or vitamin pill b/c they look and probably taste like candy.
Faith had a Tinkerbell birthday party in March for her #4....it was wonderful, so many friends came and no one didn't show due to illness! All the girls had a great time playing games, doing crafts and earning parts of their fairy outfits...especially the wings.
More news...we got a PUPPY! She's an American Mastiff I've been on the wait list for over a year to get, but have wanted since we lived in Pasadena 6 years ago! We named her Falon, she's adorable, super sweet and will be a wonderful friend for the girls to grow up with!
We are looking forward to going to Disneyland this month and camping this summer at Sly Park and Yosemite...in between those lengthy treatments of course.
This year, I've decided officially not to do "Speeding for a Cure" at the Roseville Speedway in September. It was a sad, tough decision and though we did make close to $7,000 last year and $4,000 the year prior...it's just too much for me to do almost alone this year with the changes in the CF Office, working and living life. Sooooo, that means that the GreatStrides Walk on the West Steps of the CA State Capital is IT! PLEASE, come join us. Sign up at www.TeamFaithFULL.com, consider making a donation whether you can come or not and help spread the word...we need a cure and I'm guessing this year is going to be a tough one to make advances in research based on the economy. If you are not in the Sacramento area, there is surely a walk site near you that needs volunteers and walk teams! www.CFF.org
Don't forget to watch the NEW 2009 video of Faith!
www.TeamFaithFULL.com 2009
