The summer vacations are over and sadly - it's time to face reality once again. June was the "fun month" and July will be the "medical month." We wanted to give Brooke one month of nothing medical-related. A chance to have fun and just be a kid! She's had a blast so far!!! Mike and I just go back from our 4-day retreat and we had a good time. It's always nice to get away and spend time together. Brooke did well with the grandparents. She talked to me on the first day and then proceeded to pucker up and cry when I hung up. She didn't speak to me again until we were on our way home. She likes to "punish us" for leaving her. Ha. The dog (Brandi) did much better this time though...she got to stay home instead of being kenneled. No more doggie institutions for my baby!!
Three summer's ago we took a weekend trip to Bristol, TN to attend our first NASCAR race. My dad had been diagnosed with terminal cancer a couple of months prior. I can remember sitting on the plane and crying while looking out the window. I saw such peace and beauty in the clouds and I had never noticed that before. They seemed so serene and mystical and all I could think of was heaven and it's beauty. Now, every time I fly I feel so much closer to my dad. I know the beauty that I see doesn't even compare to what he must see every day. I told my mom on our flight to Orlando that "if it's this pretty from our view - think of how spectacular it must be for dad looking down?" What a comforting thought! How can anyone see God's beauty and not believe?
What a sad week. My heart goes out to Farrah Fawcett's family. Her dad lost his wife, then his daughter Linda to cancer and now his baby Farrah. And to Redmond...for the bad choices he's made and having to sit in a jail cell while mourning the loss of his mom. And to Ryan O'Neill...not sure what to say? And for Michael Jackson. I hope he has finally found whatever it was he was missing on this earth and is finally at peace. I pray for his children. That they don't become the vicitims of whatever possible fights that might arise. Money nor fame make people who they are...without God and a loving family nothing else matters. I wouldn't trade my life for anything. I am blessed.
Wednesday is the big day for us. Brooke see's the Immunologist at 9:00 for her yearly checkup and bloodwork. The PET scan and more blood work is scheduled for 11:00. Please pray that this test goes as planned. I know it will have to be adapated for Brooke and that is always challenging. There's no way she will drink the thick chaulkey stuff so I'm hoping they can thin it and run it through her veins while she's semi-sedated. Thursday we see Dr. Libby, the Hematologist. Hopefully, he will have the test results so we won't have to play the waiting game again. I don't want the PET scan to show anything...I want no red or blue to show up! NO SIGNS OF CANCER! I've been praying that the blood issue is gone. That all of the poisons from the past year are out of her system and that she is as good as new. And that the lymth node that was a little enlarged, is now small and out of sight!
Brooke continues to be happy and healthy. No sickness since January! In fact, we go see Dr. Luu tomorrow for two physicals and it's our first trip to see him in 2009! How is that possible for such a sick child? None of this makes any sense? Ask God to continue to bless Brooke with good health and laughter. Ask him to to continue to wrap his loving and protective arms around her now and for always. Pray that the upcoming dental surgery on July 15th goes as planned and that Brooke's recovery is infection-free and as painless as possible. Ask him to guide Mike and I as we continue to care for Brooke. And most especially...thank him for giving her to us. She is such a blessing in our lives.
Love you all. Please keep the prayers coming our way!
Sunday, June 28, 2009
Monday, June 22, 2009
Surgery is scheduled
Today was tough...I had to schedule Brooke's dental surgery. Ick. It's set up for Wednesday, July 15th at UNM. The good thing is that they will go in and do EVERYTHING...fix the teeth, clean the teeth and even pull the wisdom tooth. It's just scary to know that most of the bodies germs live in the mouth so this puts Brooke at a higher risk for infection.
We see the Immunologist on the 1st, do blood work there and then have the PET scan later that morning. We're back at UNM on the 2nd to see the Hematologist. I emailed him today to give him the surgery date and to ask if there is anything we need to be doing right now to get Brooke ready for the surgery. He told us a few months ago she would need GCSF shots to help boost her blood levels up. Mike and I are struggling with the fact that our child, who has been healthier than she ever has before and who is super happy these days, is sick. It just doesn't make sense. I just keep praying that when we do the repeat blood work on the 1st - it comes back normal.Dr. Libby told us that sometimes these things can go away as quickly and mysteriously as they came on. I pray that this is the explanation for Brooke!
Mike and I leave tomorrow for a few "mommy and daddy days" away. Brooke is going to Ma and PaPa's and is excited. I hope her excitement lasts so these 70 years olds aren't worn to a frazzle trying to find ways to preoccupy her. Ha.
I want to close with something I read in a book a while back: "YOUR DAY GOES THE WAY THE CORNERS OF YOUR MOUTH TURN. LIFE IS LIKE A MIRROR. IF WE FROWN AT IT, IT FROWNS BACK. IF WE SMILE, IT RETURNS THE GREETING. Make each day count and remember to thank God for all of life's blessings!!
We see the Immunologist on the 1st, do blood work there and then have the PET scan later that morning. We're back at UNM on the 2nd to see the Hematologist. I emailed him today to give him the surgery date and to ask if there is anything we need to be doing right now to get Brooke ready for the surgery. He told us a few months ago she would need GCSF shots to help boost her blood levels up. Mike and I are struggling with the fact that our child, who has been healthier than she ever has before and who is super happy these days, is sick. It just doesn't make sense. I just keep praying that when we do the repeat blood work on the 1st - it comes back normal.Dr. Libby told us that sometimes these things can go away as quickly and mysteriously as they came on. I pray that this is the explanation for Brooke!
Mike and I leave tomorrow for a few "mommy and daddy days" away. Brooke is going to Ma and PaPa's and is excited. I hope her excitement lasts so these 70 years olds aren't worn to a frazzle trying to find ways to preoccupy her. Ha.
I want to close with something I read in a book a while back: "YOUR DAY GOES THE WAY THE CORNERS OF YOUR MOUTH TURN. LIFE IS LIKE A MIRROR. IF WE FROWN AT IT, IT FROWNS BACK. IF WE SMILE, IT RETURNS THE GREETING. Make each day count and remember to thank God for all of life's blessings!!
Tuesday, June 16, 2009
A few pictures from the trip
I've finished uploading and organizing my 990 digital pictures from the trip. I also had 72 developed today off of disposable cameras I used when my battery died. The pictures taken of Mike and Jiminy Cricket are AWESOME! I'll try to get one scanned and posted soon. I believe 1,062 pictures currently is my record - ha. This number tops the pictures taken on our last trip to WDW and those from our cruise 5 years ago. WOW! I take a lot of pictures, I know, but it's one way that Brooke can communicate with us. I like to make her mini photo albums so she can tell us what she saw, what she liked, and what she wants to go back and do next trip. When a person can't talk...you have to find other means. Pictures do the job for Brooke. I am also creating a Disney scrapbook for her. I fully intended on doing it 3 years ago after our first trip there but failed to get it done. So I've been working on it off and on for the past 2 months getting pages pre-made so I can add the pictures. It's looking really cute! She loves it.
Enjoy!!
Enjoy!!
Sunday, June 14, 2009
Who's the leader of the club...
MICKEY MOUSE!
We're home after 8 magical days in the heat and extreme humidity of Florida. We had a blast and Brooke tolerated the week very well. She got tired and we had to keep an eye on her temperature, but overall she was an excellent traveler. Disney is such an incredible place! The cast members are so kind! I love how they tell you to "have a magical day" or "dream magical dreams." And most of them went out of their way to help with Brooke in any way possible. They called her "princess" all the time, which I loved. I got a Guest Assistance card when we got there that allowed us (most of the time) to get in the fast pass line instead of having to wait in the regular line. This was a God send. Without this, we wouldn't have been able to accomplish half of what we did. Thank you WDW for treating the disabled the way they deserve to be treated!
When we got there Saturday, mom, Brooke and I took the Mgical Disney Express bus from the airport to our resort. What fun! Mike drove the rental car. I have zero complaints about our resort. The POP CENTURY is great! Yes, the rooms are small, but we were rarely in them. The food court had good food, the store was great, and the mousekeepers were super efficient. They even left a couple of towel animals for us during our stay. And the icons there ---- so neat! I have so many good pictures. After we got settled in, we went to Downtown Disney so Brooke could spend $250 of her $300 spending money on toys. Ha. You can't imagine how much she loves the Mr. Potato head bar. We now have another potato head and two more boxes of Disney accessories. She looks forward to the toys each trip. (And yes, it was a challenge figuring out how to get everything back home. 4 people, 8 checked suitcases, and 4 carry ons. Mike was thrilled at the amount of our luggage - NOT.)
Sunday it was Magic Kingdom which is always fun. It was crowded but nothing too horrible. Remarkably we got a lot on our "to-do list" accomplished. We saw the shows, rode the rides and of course - had pictures taken with Mickey and Minnie. We figured out on this trip that while Brooke does like Goofy, Max and Donald...she is definitly a MICKEY MOUSE LOVER! Brooke loves MK! It rained for a bit but we just happened to be on the steam boat, so we had cover. That was a nice 20 minute ride.
Monday we were at Hollywood Studios where I finally got to ride the Rockin Roller Coaster. (I love Aerosmith!) Our friend Irshaun, who works for Disney met us there and talked Mike into riding the coaster with us. I never thought I'd get him on another one and I probably never will again. It was INTENSE! WOW! We loved the new Toy Story ride and we got to see Beauty and the Beast, which Brooke loved. We had lunch at the Sci-Fi Drive In again, which is totally neat! And then we hung around for Fantasmic, which was incredible. It was a little more violent than I'd like to see at Disney, but the special effects were mind-blowing. Very good.
Tuesday was our down day, which we needed. We slept in, I did laundry, and my mom and Brooke got an afternoon nap. Tuesday night we went to Ft. Wilderness and saw the Hoop Dee Doo Revue. What a great family show! I highly recommend trying to get tickets for this show if you ever head to WDW. (And you're lucky if you can get tickets! It's sold out 90 days in advance and is the longest running show there.) After the show we took a private carriage ride that took us around the campground...over 500 acres of wilderness. Gorgeous! We saw 4 deer and got ate up by some huge Floridian mosquitoes. This park is easily accessible by boat from MK, which was a nice ride in itself. If you're the outdoorsey type and like cabin-life or camping...this is your place!
Wednesday was EPCOT, which Mike and I did without mom since she got sick during the night. I hated that she didn't get to see this park because she was really looking forward to riding Test Track. We rode it twice...love it! We also rode Soarin (our first time) and loved it. What an incredible ride! We saw Turtle Talk with Crush again, which is a cute show, and rode the Nemo ride. It's really neat...they put their cartoon fish in the aquarium with the real fish...not sure how they did that but it was a stunning effect! We rode Living with the Land for the first time and got to see different methods of irrigation...no soil techniques, etc. All of the things they grow in the greenhouses at EPCOT are used in the restuarants in the park. It was interesting. Wednesday night the three of us went to BOMA at Animal Kingdom lodge for supper. It was an African buffet. Very unusual. The desserts were to die for! And we walked around the grounds afterwards and got some great pictures of some of the animals there. How neat would it be to stay at a place like that and be able to go out on your balcony and see wild animals? Our motel was animal-like at times due to the large volumes of people staying there. Ha.
Thursday we had a character breakfast at Animal Kingdom with Mickey, Minnie, Goofy and Donald Duck. What fun! Brooke loved this. They gave the kids musical instruments and they danced around the restuarant with the characters. I got lots of great pictures!!! Afterwards, we went on the safari where LOTS of animals were out. We didn't see half the number of animals when we rode it 3 years ago. We had giraffe's standing beside our vehicle. It was incredible! And then my camera battery died which made me really mad! I think we had outlet issues at the motel because this happened to our phones as well. We thought things were being charged when in fact - they weren't. So we rode the train to another section of AK where I spent $25 on two disposable cameras. Mike's favorite character, which is RARELY SPOTTED ANYWHERE just happened to be here. So with lots of luck, my pictures of Jiminy Cricket and Mike will turn out! Thursday night we took Brooke to Give Kids the World to visit. This is where we stayed 3 years ago on our Wish trip. It's an incredible place ran by over 3,000 volunteers. In fact, Mike spent 3 mornings volunteering while mom and I hit the parks in the morning with Brooke. We ate supper there and Brooke got to celebrate Christmas, which we missed out on last trip since we flew home on Thursday. She had pictures with Santa Claus, got another potato head as her Christmas gift of choice (we knew she'd pick it), she decorated a sugar cookie, rode the train, we had ice cream and we left. It was a fun time. Visit www.gktw.org and check this place out. It's a great place to volunteer, donate to, or visit if ever in Kissimmee. The story behind the man who started it is an interesting one and you can buy the book on their website.
Friday was awesome. We drove to Boggey Creek airboats (about 30 miles from WDW) and took an airboat tour. WOW! We saw 1 baby alligator and a bald eagle. Brooke loved the boat ride. She laughed the entire time, which scared me because I was afraid one of the HUGE dragon flys would fly right in! We held an alligator after the ride and bought the $20 picture. It's great. I'll get it scanned and post it. After the airboat ride we went to Sea World. What a beautiful park and a LOT bigger than the one in San Diego. Brooke had never been, but since it was day 7 of the vacation...her attention span was not what it needed to be. She didn't care much for Clyde and Seamore but LOVED Shamu. She's still doing the Shamu cheer today. It was cute. Lesson learned...do Sea World earlier in the week next trip. And...consider making it 10 days instead of 8. Two go days, one down day, etc.
The trip was so much fun and we're so blessed Brooke's health allowed her to enjoy it. I cleaned her hands so many times it wasn't funny, but she got so used to it that it bacame second nature. We scrubbed the seats of the plane, the motel, all the luggage, etc. It was a lot of work, but SO WORTH IT. Please, please, please...enjoy the small things in life. Life is short and it's up to us to make it sweet. Memories are something no one can ever take away. God bless you all...keep the prayers coming our way...and I'll blog again soon.
We're home after 8 magical days in the heat and extreme humidity of Florida. We had a blast and Brooke tolerated the week very well. She got tired and we had to keep an eye on her temperature, but overall she was an excellent traveler. Disney is such an incredible place! The cast members are so kind! I love how they tell you to "have a magical day" or "dream magical dreams." And most of them went out of their way to help with Brooke in any way possible. They called her "princess" all the time, which I loved. I got a Guest Assistance card when we got there that allowed us (most of the time) to get in the fast pass line instead of having to wait in the regular line. This was a God send. Without this, we wouldn't have been able to accomplish half of what we did. Thank you WDW for treating the disabled the way they deserve to be treated!
When we got there Saturday, mom, Brooke and I took the Mgical Disney Express bus from the airport to our resort. What fun! Mike drove the rental car. I have zero complaints about our resort. The POP CENTURY is great! Yes, the rooms are small, but we were rarely in them. The food court had good food, the store was great, and the mousekeepers were super efficient. They even left a couple of towel animals for us during our stay. And the icons there ---- so neat! I have so many good pictures. After we got settled in, we went to Downtown Disney so Brooke could spend $250 of her $300 spending money on toys. Ha. You can't imagine how much she loves the Mr. Potato head bar. We now have another potato head and two more boxes of Disney accessories. She looks forward to the toys each trip. (And yes, it was a challenge figuring out how to get everything back home. 4 people, 8 checked suitcases, and 4 carry ons. Mike was thrilled at the amount of our luggage - NOT.)
Sunday it was Magic Kingdom which is always fun. It was crowded but nothing too horrible. Remarkably we got a lot on our "to-do list" accomplished. We saw the shows, rode the rides and of course - had pictures taken with Mickey and Minnie. We figured out on this trip that while Brooke does like Goofy, Max and Donald...she is definitly a MICKEY MOUSE LOVER! Brooke loves MK! It rained for a bit but we just happened to be on the steam boat, so we had cover. That was a nice 20 minute ride.
Monday we were at Hollywood Studios where I finally got to ride the Rockin Roller Coaster. (I love Aerosmith!) Our friend Irshaun, who works for Disney met us there and talked Mike into riding the coaster with us. I never thought I'd get him on another one and I probably never will again. It was INTENSE! WOW! We loved the new Toy Story ride and we got to see Beauty and the Beast, which Brooke loved. We had lunch at the Sci-Fi Drive In again, which is totally neat! And then we hung around for Fantasmic, which was incredible. It was a little more violent than I'd like to see at Disney, but the special effects were mind-blowing. Very good.
Tuesday was our down day, which we needed. We slept in, I did laundry, and my mom and Brooke got an afternoon nap. Tuesday night we went to Ft. Wilderness and saw the Hoop Dee Doo Revue. What a great family show! I highly recommend trying to get tickets for this show if you ever head to WDW. (And you're lucky if you can get tickets! It's sold out 90 days in advance and is the longest running show there.) After the show we took a private carriage ride that took us around the campground...over 500 acres of wilderness. Gorgeous! We saw 4 deer and got ate up by some huge Floridian mosquitoes. This park is easily accessible by boat from MK, which was a nice ride in itself. If you're the outdoorsey type and like cabin-life or camping...this is your place!
Wednesday was EPCOT, which Mike and I did without mom since she got sick during the night. I hated that she didn't get to see this park because she was really looking forward to riding Test Track. We rode it twice...love it! We also rode Soarin (our first time) and loved it. What an incredible ride! We saw Turtle Talk with Crush again, which is a cute show, and rode the Nemo ride. It's really neat...they put their cartoon fish in the aquarium with the real fish...not sure how they did that but it was a stunning effect! We rode Living with the Land for the first time and got to see different methods of irrigation...no soil techniques, etc. All of the things they grow in the greenhouses at EPCOT are used in the restuarants in the park. It was interesting. Wednesday night the three of us went to BOMA at Animal Kingdom lodge for supper. It was an African buffet. Very unusual. The desserts were to die for! And we walked around the grounds afterwards and got some great pictures of some of the animals there. How neat would it be to stay at a place like that and be able to go out on your balcony and see wild animals? Our motel was animal-like at times due to the large volumes of people staying there. Ha.
Thursday we had a character breakfast at Animal Kingdom with Mickey, Minnie, Goofy and Donald Duck. What fun! Brooke loved this. They gave the kids musical instruments and they danced around the restuarant with the characters. I got lots of great pictures!!! Afterwards, we went on the safari where LOTS of animals were out. We didn't see half the number of animals when we rode it 3 years ago. We had giraffe's standing beside our vehicle. It was incredible! And then my camera battery died which made me really mad! I think we had outlet issues at the motel because this happened to our phones as well. We thought things were being charged when in fact - they weren't. So we rode the train to another section of AK where I spent $25 on two disposable cameras. Mike's favorite character, which is RARELY SPOTTED ANYWHERE just happened to be here. So with lots of luck, my pictures of Jiminy Cricket and Mike will turn out! Thursday night we took Brooke to Give Kids the World to visit. This is where we stayed 3 years ago on our Wish trip. It's an incredible place ran by over 3,000 volunteers. In fact, Mike spent 3 mornings volunteering while mom and I hit the parks in the morning with Brooke. We ate supper there and Brooke got to celebrate Christmas, which we missed out on last trip since we flew home on Thursday. She had pictures with Santa Claus, got another potato head as her Christmas gift of choice (we knew she'd pick it), she decorated a sugar cookie, rode the train, we had ice cream and we left. It was a fun time. Visit www.gktw.org and check this place out. It's a great place to volunteer, donate to, or visit if ever in Kissimmee. The story behind the man who started it is an interesting one and you can buy the book on their website.
Friday was awesome. We drove to Boggey Creek airboats (about 30 miles from WDW) and took an airboat tour. WOW! We saw 1 baby alligator and a bald eagle. Brooke loved the boat ride. She laughed the entire time, which scared me because I was afraid one of the HUGE dragon flys would fly right in! We held an alligator after the ride and bought the $20 picture. It's great. I'll get it scanned and post it. After the airboat ride we went to Sea World. What a beautiful park and a LOT bigger than the one in San Diego. Brooke had never been, but since it was day 7 of the vacation...her attention span was not what it needed to be. She didn't care much for Clyde and Seamore but LOVED Shamu. She's still doing the Shamu cheer today. It was cute. Lesson learned...do Sea World earlier in the week next trip. And...consider making it 10 days instead of 8. Two go days, one down day, etc.
The trip was so much fun and we're so blessed Brooke's health allowed her to enjoy it. I cleaned her hands so many times it wasn't funny, but she got so used to it that it bacame second nature. We scrubbed the seats of the plane, the motel, all the luggage, etc. It was a lot of work, but SO WORTH IT. Please, please, please...enjoy the small things in life. Life is short and it's up to us to make it sweet. Memories are something no one can ever take away. God bless you all...keep the prayers coming our way...and I'll blog again soon.
Tuesday, June 2, 2009
A gold and silver medal
Brooke did awesome this past weekend at the SONM state games in Albuquerque. She took the silver in her 25 meter walk (she almost stopped to waive to Ma and Papa but she figured out she could slow down to a negative 1 mph and still get the job done). Ha! She took gold in the tennis ball throw. We are so proud of our special athlete! We took things slow and made sure she rested more than usual and she did well. We just have to take things slower than usual from now on and keep cleaning her hands. I know she got tired of me doing that and she doesn't understand why I'm doing it, but it's a necessary evil none-the-less.
We're gearing up for our trip to WDW Saturday. We leave Friday when I get off work and will drive to Albuquerque. We fly out early Saturday morning. Please pray for our safety there and back and for Brooke's tolerance to everything. Germs, the heat, the waiting in line, etc. Continue to ask God to watch over her and to continue to protect her. Ask for help for me to remember to turn things over to him and stop trying to carry it. I forget this from time to time and the knot in my stomach is a reminder that I'm not doing what I need to be doing. It's so easy to get wrapped up in the worry and the uncertainties. I ask God to help me relax and enjoy this magical time with Mike, Brooke and my mom. We are blessed. Thank you Lord for everything you do for us and for all that we have. Please continue to guide us through our journeys.
Good news! I just learned today that I'm going to be a great-aunt again. YEA SARAH AND JASON!!! Is it wrong to pray for a girl? I'd be happy with another boy, but sure would like to see a great-niece!!!
Take care everyone and it may be after our trip before you hear from me again.
VIVA MICKEY MOUSE!!!!!!
We're gearing up for our trip to WDW Saturday. We leave Friday when I get off work and will drive to Albuquerque. We fly out early Saturday morning. Please pray for our safety there and back and for Brooke's tolerance to everything. Germs, the heat, the waiting in line, etc. Continue to ask God to watch over her and to continue to protect her. Ask for help for me to remember to turn things over to him and stop trying to carry it. I forget this from time to time and the knot in my stomach is a reminder that I'm not doing what I need to be doing. It's so easy to get wrapped up in the worry and the uncertainties. I ask God to help me relax and enjoy this magical time with Mike, Brooke and my mom. We are blessed. Thank you Lord for everything you do for us and for all that we have. Please continue to guide us through our journeys.
Good news! I just learned today that I'm going to be a great-aunt again. YEA SARAH AND JASON!!! Is it wrong to pray for a girl? I'd be happy with another boy, but sure would like to see a great-niece!!!
Take care everyone and it may be after our trip before you hear from me again.
VIVA MICKEY MOUSE!!!!!!
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