It's official . . . tomorrow . . . Decmeber 30th . . . I will be 30 . . . in honor of the big day I thought I'd make a list of the 30 most incredible things I've done in my life so far . . .
1. Be born (is that how you say that?) . . . thanks mom for all the hard work . . .
2. Become a big sister . . . I love you little sis!!
3. Start kindergarten . . . I was one of those sick kids who loved school . . . kindergarten was the beginning of a beautiful thing.
4. Get a library card . . . again with the love of learning . . . I couldn't count the thousands of books I've read since that fateful day
5. Have Diane Lancaster knock on my parents door . . . she faithfully drove me to Sunday School for years and years and years . . . she taught me songs, felt stories about Jesus, and showed the true love of Christ to a little girl.
6. Survive Junior High . . . permed bangs . . . huge Sally Jessy Raphael glasses . . . bad jumpsuits . . . enough said.
7. Travel to China as a student delagate . . . the summer between seventh and eighth grade . . . some of the most amazing memories!
8. Travel with the high school orchestra . . . we went to Disneyland, Whistler, Oregon and much more . . . made so many friends . . . had so much fun . . . wore a rocking uniform . . . good times
9. Travel to Mexico on a mission trip with my incredibly favorite cousins (sensing a theme of travel?!)
10. Going on an action pack filled senior trip with an incredible group of six girls . . . the pixie stick sisters . . . from mini golf to horse back riding to tattoos on our ankles (they were stick ons mom - don't worry) . . . so much laughter and fun
11. Interning with an amazing youth ministry program in Snohomish while attending Community College . . . lots of phone calling. . . lots of crazy experiences . . . lots of kids . . . and lots of learning (thanks Brian for the opportunity)
12. Met my incredible husband . . . from the moment I met him, I knew there was something special about him . . . dating you was so fun!!
13. Getting engaged on a ferry at sunset . . . could anything be more romantic?
14. Getting married to the love of my life . . . a huge fancy church wedding in Bellingham then a gorgeous reception at the cruise terminal . . . all my dreams as a little girl came true!
15. Vacationing in Cabo San Lucas for a week long honeymoon . . . laying on the beach, swimming in the pools, hanging out with my new husband . . . tropical bliss
16. Working at Lynnwood High School . . . a place I never saw myself but never grew more . . . met some incredible people . . . and learned more from the students then I ever taught them
17. Chaperoning the CYSO tour throughout Europe.
18. Having my beautiful older daughter Hannah . . . a long pregnancy filled with bed rest and ultrasounds but worth all the work when I first laid eyes on that sweet girl . . .
19. Infant/Baby Co-op at Edmonds Community College . . . met my bestest mom friend in the world and learned so much about playing with my little baby . . .
20. Having my beautiful younger daughter Haley . . . a second little girl? Could we be any more blessed?
21. First getting introduced to MOPS . . . a truly life changing experience . . . hope and inspiration and laughter and acceptance as a mom . . .
22. Buying our first home . . . it was a lot of paper signing, phone conversations with loan officers and realtors . . . and it was fun and exciting from start to finish
23. Joining the MOPS leadership team . . . made the most incredible life-lasting friendship, grew as a woman and a mom . . . developed more leadership skills and was reminded that I am capable of doing something even as a mom
24. Sending my first baby to kindergarten . . . how did the time fly this fast?
25. Traveling to see Beth Moore . . . twice . . . once in Vancouver Canada and once in Spokane Washington . . . looking forward to seeing her this March at the Tacoma Dome . . . whose with me?!
26. Starting a blog . . . thanks Sarah for the inspiration and encouragement . . . it's been such a fun way to document our life, slow down long enough to reflect on our days and share the experience with family and friends.
27. Standing as a maid of honor in my baby sister's wedding . . . she couldn't have looked more beautiful, married a more wonderful man or had a more special day.
28. Battling asthma . . . sounds crazy but I have learned a lot . . . about my health, about myself, about my friends, about my family . . . and I'd never give those lessons back
29. Traveling to Denver . . . going through an intense round of tests and appointments at National Jewish Hospital and sharing it all with my mom (wow - it's gone full circle to number one hasn't it?!)
30. Turning 30 surrounded by the most incredible team of support . . . a husband that loves me to the end of the earth, two little girls who couldn't be sweeter or bring more joy to my life, a mom and dad who would and have done everything for me, in laws who love me like a daughter and show it all the time, a sister and new brother in law who bring laughter and love to our life, a brother and sister in law adding nephews and nieces to our family, a network of friends who love me no matter what . . . who have seen me at my worst and still love me . . . who make me laugh on an almost daily basis . . . who fill in like family . . . and who make my life better.
I can't imagine a person luckier than I am . . . I can't wait for all this year will bring . . . more dates with my husband, more visits with family, more dinners and adventures with friends, more shopping and dates with the girls, more stories and games and adventures with my daughters, more chapters in my book . . . and more incredible things done . . . happy birthday to me!
Wednesday, December 29, 2010
Tuesday, December 28, 2010
In My Stereo
This Christmas, in my stocking, was the new Taylor Swift CD. I have enjoyed quite a few Taylor Swift singles in the past (and the girls and I have danced around the living room on a regular basis) but never have I owned a full CD.
On our way up to the family gathering on Sunday, I popped it in my stereo and was amazed by what I heard. I love it!! There are thoughtful songs, funny songs, deep songs, slow songs, dancing songs and sweet songs. Although all the words aren't "kid appropriate" this time (not explicit or over the top by any means - just a little more adult in relationships and my older one memorizes lyrics way to fast - I have to be careful what goes into her head as it will come out of her mouth and I want to keep her little as long as possible!!), momma will have a good time listening to this CD on my way to appointments, in my ipod, and while kiddos are busy playing upstairs.
It's hard to pick a favorite song as there are so many good ones but go to itunes or you-tube and listen to "mean" and "never grow up" . . . mean will make you smile and maybe even laugh remembering the mean girls or guys of high school and realizing you've grown up but maybe they haven't . . . and I dare you not to shed a tear listening to the lullaby-like song about how times flies . . .
The kids are busy upstairs playing with their new toys now . . . gotta turn on my new tunes!!
On our way up to the family gathering on Sunday, I popped it in my stereo and was amazed by what I heard. I love it!! There are thoughtful songs, funny songs, deep songs, slow songs, dancing songs and sweet songs. Although all the words aren't "kid appropriate" this time (not explicit or over the top by any means - just a little more adult in relationships and my older one memorizes lyrics way to fast - I have to be careful what goes into her head as it will come out of her mouth and I want to keep her little as long as possible!!), momma will have a good time listening to this CD on my way to appointments, in my ipod, and while kiddos are busy playing upstairs.
It's hard to pick a favorite song as there are so many good ones but go to itunes or you-tube and listen to "mean" and "never grow up" . . . mean will make you smile and maybe even laugh remembering the mean girls or guys of high school and realizing you've grown up but maybe they haven't . . . and I dare you not to shed a tear listening to the lullaby-like song about how times flies . . .
The kids are busy upstairs playing with their new toys now . . . gotta turn on my new tunes!!
Saturday, December 25, 2010
A Time of Celebration
Over the past few weeks, the Marsh family has been busy celebrating the season in all kinds of ways . . . from a sweet choir concert at Hannah's school . . . to a fun dinner with some close family friends . . . to some grown up Christmas shopping (thank you grandma for the child care) . . . to a brunch at one of our oldest and dearest friends house (I swear I want that casserole recipe - you know who you are - don't try to hide behind the "secret Christmas tradition" bit again!!) . . . to some cookie making, eggnog drinking, home decorating, story reading, advent tree counting down, enjoying each other and the time of year . . . and the last couple of days have been especially precious. . .
On December 23rd, the Stoebe family gathered at our house for a great day full of gift giving, food eating (thanks papa!), game playing and story telling.
On December 24th, we attended Catholic mass at St. Marys in our area . . . it was filled with music and tradition and reverence and worship and prayers and overall beauty - what a special way to celebrate the birth of our Lord and Savior.
This morning, December 25th, the girls woke up with so much excitement they were jumping up and down. They were thrilled and surprised by gifts delivered by Santa then enjoyed cinnamon rolls and homemade apple sauce for breakfast (mom and dad worked our way through the pot of coffee - Christmas morning comes a little slower for grown ups doesn't it?!) We unwrapped gifts from each other and enjoyed playing with some of our new toys (in particular the nerf guns Travis got for he and the girls . . . they ran the house squealing for at least 20 minutes - couldn't get a good picture without jumping in the middle of the cross fire)
After enjoying our morning as a little foursome, we headed down to the Marsh family home to spend the rest of the day eating more delicious food, giving gifts and remembering stories from years ago. The girls ran around with their little cousin Moses and my soon-to-appear niece is only about 20 days away from her arrival!! (I spent some time feeling her kick around her momma . . . what an amazing thing!)
This evening, the girls are upstairs enjoying their new toys, daddy is asleep on the couch and I am cozy in my new bathrobe and slippers (thanks girls!) with a cup of tea reflecting on the last few weeks . . . it truly is my favorite time of year. Tomorrow we are driving north to have brunch with my cousins and aunts and uncles . . . although I wish we saw more of each other, I am so thankful we all pause in the middle of our lives and get together to laugh and reminisce . . . oh yeah . . . and play a crazy White Elephant gift exchange game - a timeless tradition.
I hope that you are knee deep in joy and warmth and family and food and fun and the smell of the tree and the smiles of the kiddos . . . Merry Christmas!!
On December 23rd, the Stoebe family gathered at our house for a great day full of gift giving, food eating (thanks papa!), game playing and story telling.
On December 24th, we attended Catholic mass at St. Marys in our area . . . it was filled with music and tradition and reverence and worship and prayers and overall beauty - what a special way to celebrate the birth of our Lord and Savior.
This morning, December 25th, the girls woke up with so much excitement they were jumping up and down. They were thrilled and surprised by gifts delivered by Santa then enjoyed cinnamon rolls and homemade apple sauce for breakfast (mom and dad worked our way through the pot of coffee - Christmas morning comes a little slower for grown ups doesn't it?!) We unwrapped gifts from each other and enjoyed playing with some of our new toys (in particular the nerf guns Travis got for he and the girls . . . they ran the house squealing for at least 20 minutes - couldn't get a good picture without jumping in the middle of the cross fire)
After enjoying our morning as a little foursome, we headed down to the Marsh family home to spend the rest of the day eating more delicious food, giving gifts and remembering stories from years ago. The girls ran around with their little cousin Moses and my soon-to-appear niece is only about 20 days away from her arrival!! (I spent some time feeling her kick around her momma . . . what an amazing thing!)
This evening, the girls are upstairs enjoying their new toys, daddy is asleep on the couch and I am cozy in my new bathrobe and slippers (thanks girls!) with a cup of tea reflecting on the last few weeks . . . it truly is my favorite time of year. Tomorrow we are driving north to have brunch with my cousins and aunts and uncles . . . although I wish we saw more of each other, I am so thankful we all pause in the middle of our lives and get together to laugh and reminisce . . . oh yeah . . . and play a crazy White Elephant gift exchange game - a timeless tradition.
I hope that you are knee deep in joy and warmth and family and food and fun and the smell of the tree and the smiles of the kiddos . . . Merry Christmas!!
Monday, December 13, 2010
A Little Girls Turns 5
Today was a special day in the Marsh house . . . our little Haley turned 5!! We celebrated in style with a Fancy Nancy themed party . . . Haley picked the menu (mac n cheese with hot dogs, salad with tomatoes and avocados, meatballs with spaghetti sauce, pigs in a blanket . . . random - yes, all Haley - yes) . . . lots of friends and family filled our little home with laughter and love . . . we all wore our PJ's (per Haley's request) and played some fun games (my sweet friend Mandi's mom drew and decorated the Fancy Nancy poster that the kids took turns pinning stars on her wand - thank you thank you thank you . . . I can't believe your talent and your generosity - you may have a new business on your hands!!) . . . we ended the night with cake and ice cream . . . Happy Birthday Little Girl . . . couldn't imagine us without you . . . you add so much laughter and joy to our little family . . . it's truly a blessing and a gift watching you grow . . .
You truly are a Fancy Nancy and we couldn't love you more!!
You truly are a Fancy Nancy and we couldn't love you more!!
Friday, December 10, 2010
Home Sweet Home
I made it . . . I'm home!! Blogging on my own couch with my own crazy children running circles and making tons of noise all around . . . nothing like home!!
The flight was great (although it couldn't go fast enough) and I was greeted with a homemade sign and lots of hugs . . .
I can't get enough of these guys . . . and we are back in the swing of it . . . my mom is headed north to take care of my grandma and I'm tracking these little ladies all over the house . . . where's Travis you might ask? Travis fell asleep the minute we got home . . . think it's been a long week for Daddy too . . .
The flight was great (although it couldn't go fast enough) and I was greeted with a homemade sign and lots of hugs . . .
I can't get enough of these guys . . . and we are back in the swing of it . . . my mom is headed north to take care of my grandma and I'm tracking these little ladies all over the house . . . where's Travis you might ask? Travis fell asleep the minute we got home . . . think it's been a long week for Daddy too . . .
Thursday, December 9, 2010
The Pit Stop
To complete the Amazing Race analogy, we have reached the pit stop for this leg of the race . . . and we weren't eliminated. I woke up this morning excited to be on this side of the trip . . . the finish line . . . instead of the beginning . . . it's been a long journey . . . and we made it!!
It was the final day of Hanukkah and the final day at National Jewish . . .
At 2pm I had a final spirometry test then met with Dr. Gogate for an hour. She shared all the results of the tests (there are still some that will take weeks to come in) and went through her assessment and plan for the future. I wish I had a big ta-da . . . my steering and life group ladies know I'm always searching for this . . . not yet ladies, not yet . . . but she did have lots of insight. Like we've been learning over the last few years, I have a very complex case . . . there is not one blaring cause that we can fix and cure my asthma . . . she was a bit frustrated herself that she couldn't offer a final solution but she did have a lot to offer as far as the direction I should go when I return home.
She tweaked some of my medications . . . subtracting some . . . adding others . . . and her biggest goal for me is to fully taper off prednisone . . . and stay off. She said it takes at least 6 months for your body to fully eliminate the steroids - and damage has already been done. She said I need to follow up with an endocrinologist asap when I return to check on my adrenal function as long term steroid use does bad things . . . it tells your body it can stop producing cortisol. I need to see if my body has entered this zone (and if it has, I may have to stay on a small dose of prednisone to maintain a healthy level). I also need to follow up with a cardiologist . . . there wasn't anything wrong with the heart itself - it's just important that I make sure I'm getting an accurate amount of oxygen to my heart . . . she recommended a stress test to check it's function. Also, she recommended a sleep study . . . both my sinus and chest CT's showed possible indicators for sleep apnea - some swelling of the pulmonary artery . . . and if it's not apnea, find out what that swelling means. The bone density test showed bone deterioration due to long term steroid use . . . I don't have osteoporosis yet but something called osteopenia - the step before . . . not easy news to take as a 30 year old . . . I need to add calcium supplements and work on building my muscles mass back up as much as possible to stop the deterioration. Both of the barium studies showed that the Nissen surgery I had in 2009 held but the PH probe study (that terrible thing in my nose/throat) showed that I'm still having reflux . . . acid and lungs . . .not a good mix. She hooked me up with a new device called a Piko that is basically a spirometry test I can do at home all through the day as I have symptoms, take medicines and track my illness . . . the information gained from this test over the span of weeks and months will be valuable for my doctors at home as to how my lungs are functioning and what we need to do next.
To put all that info together . . . my respitory disease is multi-faceted . . . part reflux, part allergy, part vocal cord disfunction, possible part sleep apena, possible part heart . . . steroids are doing and have done terrible things to my body - more side effects than we even knew existed . . . this journey is not even close to being over . . . and it's not going to be easy . . . but I can hit the ground running when I get home knowing which direction to head in and what to do next . . . and as I tell the girls when they get frustrated . . . "Marsh girls don't quit!!"
I can't begin to describe what I felt waiting for the last shuttle ride leaving the hospital today . . .I am tired . . . exhausted . . . I am thankful . . . I am overloaded with information . . . I am hopeful . . . I am not looking forward to more testing to come but happy to have a new direction to explore . . . I am giddy to get home . . and I will never ever forget this experience.
As far as follow-up goes and possible future return to National Jewish, Dr. Gogate said it's all up to us . . . she said if we go through these tests, try these new medications and still get no-where, maybe a trip back would be helpful. If on the other hand, the new ideas work and a new test or two shows another piece to the puzzle, my wonderful and capable team of doctors in Washington can continue my care . . . only time will tell . . . in the meantime, I can't wait to board the plane tomorrow . . . only 19 hours until I get to kiss my babies . . . but who's counting . . .
On our way home today, we caught a few pictures of Denver and the beautiful gold topped building is the capital . . .
I wish I could describe Denver is a few eloquent words but it's unlike any other place I've ever been - architecturally it's a mix of old and new. There are lots of brick buildings . . . some skyscrapers but not as tall as Seattle . . . some incredible old beautiful buildings especially churches that reminded me so much of Europe . . . some neat sidewalk bridges connecting buildings . . . lots of corporate . . . lots of hustle bustle . . . lots of friendly people . . . quite a few hospitals in a relatively small area . . . four different network news buildings . . . and the number one respiratory hospital in the country . . . thank you Denver for opening your arms to us . . . peace out . . .
It was the final day of Hanukkah and the final day at National Jewish . . .
At 2pm I had a final spirometry test then met with Dr. Gogate for an hour. She shared all the results of the tests (there are still some that will take weeks to come in) and went through her assessment and plan for the future. I wish I had a big ta-da . . . my steering and life group ladies know I'm always searching for this . . . not yet ladies, not yet . . . but she did have lots of insight. Like we've been learning over the last few years, I have a very complex case . . . there is not one blaring cause that we can fix and cure my asthma . . . she was a bit frustrated herself that she couldn't offer a final solution but she did have a lot to offer as far as the direction I should go when I return home.
She tweaked some of my medications . . . subtracting some . . . adding others . . . and her biggest goal for me is to fully taper off prednisone . . . and stay off. She said it takes at least 6 months for your body to fully eliminate the steroids - and damage has already been done. She said I need to follow up with an endocrinologist asap when I return to check on my adrenal function as long term steroid use does bad things . . . it tells your body it can stop producing cortisol. I need to see if my body has entered this zone (and if it has, I may have to stay on a small dose of prednisone to maintain a healthy level). I also need to follow up with a cardiologist . . . there wasn't anything wrong with the heart itself - it's just important that I make sure I'm getting an accurate amount of oxygen to my heart . . . she recommended a stress test to check it's function. Also, she recommended a sleep study . . . both my sinus and chest CT's showed possible indicators for sleep apnea - some swelling of the pulmonary artery . . . and if it's not apnea, find out what that swelling means. The bone density test showed bone deterioration due to long term steroid use . . . I don't have osteoporosis yet but something called osteopenia - the step before . . . not easy news to take as a 30 year old . . . I need to add calcium supplements and work on building my muscles mass back up as much as possible to stop the deterioration. Both of the barium studies showed that the Nissen surgery I had in 2009 held but the PH probe study (that terrible thing in my nose/throat) showed that I'm still having reflux . . . acid and lungs . . .not a good mix. She hooked me up with a new device called a Piko that is basically a spirometry test I can do at home all through the day as I have symptoms, take medicines and track my illness . . . the information gained from this test over the span of weeks and months will be valuable for my doctors at home as to how my lungs are functioning and what we need to do next.
To put all that info together . . . my respitory disease is multi-faceted . . . part reflux, part allergy, part vocal cord disfunction, possible part sleep apena, possible part heart . . . steroids are doing and have done terrible things to my body - more side effects than we even knew existed . . . this journey is not even close to being over . . . and it's not going to be easy . . . but I can hit the ground running when I get home knowing which direction to head in and what to do next . . . and as I tell the girls when they get frustrated . . . "Marsh girls don't quit!!"
I can't begin to describe what I felt waiting for the last shuttle ride leaving the hospital today . . .I am tired . . . exhausted . . . I am thankful . . . I am overloaded with information . . . I am hopeful . . . I am not looking forward to more testing to come but happy to have a new direction to explore . . . I am giddy to get home . . and I will never ever forget this experience.
As far as follow-up goes and possible future return to National Jewish, Dr. Gogate said it's all up to us . . . she said if we go through these tests, try these new medications and still get no-where, maybe a trip back would be helpful. If on the other hand, the new ideas work and a new test or two shows another piece to the puzzle, my wonderful and capable team of doctors in Washington can continue my care . . . only time will tell . . . in the meantime, I can't wait to board the plane tomorrow . . . only 19 hours until I get to kiss my babies . . . but who's counting . . .
On our way home today, we caught a few pictures of Denver and the beautiful gold topped building is the capital . . .
I wish I could describe Denver is a few eloquent words but it's unlike any other place I've ever been - architecturally it's a mix of old and new. There are lots of brick buildings . . . some skyscrapers but not as tall as Seattle . . . some incredible old beautiful buildings especially churches that reminded me so much of Europe . . . some neat sidewalk bridges connecting buildings . . . lots of corporate . . . lots of hustle bustle . . . lots of friendly people . . . quite a few hospitals in a relatively small area . . . four different network news buildings . . . and the number one respiratory hospital in the country . . . thank you Denver for opening your arms to us . . . peace out . . .
Wednesday, December 8, 2010
Final Day of Testing . . .
Another 6:15am wake up . . . another 7am shuttle . . . is this ground hog day?!
Today I participated in a pharmacokinetics study . . . a progressive blood draw over the span of 7 hours to see how my body absorbs and responds to steroids . . . a crucial piece to the puzzle for me.
At exactly 7:52am (yes - they look at the clock), they drew 7 huge vials of blood from my arm then administered a dose of prednisone. Now normally, I have no problem with blood draws and even used to give blood regularly . . . today, 7 huge vials almost took me out! I was dizzy and lightheaded and sat down to drink some juice.
Then, at exactly 9:52am (again - clock looking before drawing), they drew 1 vial . . . much better than 7 . . . and had more waiting time. It's taken us only 7 days at National Jewish to discover a huge room full of tables for eating, hanging out and waiting . . . duh! So, instead of waiting for hours in small cramped places and uncomfortable chairs, we waited in style. We played games, ate a packed lunch and waited.
Then, at exactly 1:52pm . . . you get the point . . . two more giant vials . . . went pale on the lady so I got a free cranberry juice! The perks get better everyday.
At 2pm I attended a "nutrition for people with lung disease" class . . . I learned not to worry to much about eating a crazy "anti-inflammatory diet" as there is no proof in any "special" foods that magically cure asthma . . (no Travis - we don't have to eat a diet consisting only of lima beans for the rest of our life) The importance (as is important for everyone) is eating a healthy balanced diet with lots of good healthy protein and fruits and veggies and lots of water . . . that I can do.
Headed back upstairs for a final sputum induction test . . . and finished all the tests!!!! In a span of 6 days at the hospital, I went through over 35 tests, consults and procedures . . . and I feel it today . . . my hiney is dragging . . .
We wore our matching Denver shirts for a final picture . . .
I don't know if you can see in the picture but my mom is practically holding me up on the wall . . . I'm about ready to fall over . . .
Tomorrow is a big day . . . we do a final spirometry test then meet with the team of doctors and nurses for an hour long appointment . . . they are going over all the tests (that have results back - some need 4-6 weeks to finalize and we'll get those results at home) . . . they are going to recommend a better management plan and hopefully send us home with some fresh ideas . . . I'm ready - I'm ready to hear the final assessment . . . and I'm ready to go home . . .
This has been an incredible experience . . . I am so thankful for this opportunity - it has been so much more than I ever imagined . . . in good and difficult ways . . . we have met incredible people, treated like family at our hotel, supported and cared about by the hospital staff, maxed out on tests, exhausted by appointments, worn down with constant motions . . . and yet, I will never look back and regret one second here . . . the time with my mom has been priceless . . . the number of people with the same illness as myself has been encouraging . . . and the cutting edge of respiratory medication has been fascinating and exciting . . . I think it's gonna take me weeks to even process all that's happened here . . . thanks for joining us in this journey . . . more to come tomorrow . . .
Today I participated in a pharmacokinetics study . . . a progressive blood draw over the span of 7 hours to see how my body absorbs and responds to steroids . . . a crucial piece to the puzzle for me.
At exactly 7:52am (yes - they look at the clock), they drew 7 huge vials of blood from my arm then administered a dose of prednisone. Now normally, I have no problem with blood draws and even used to give blood regularly . . . today, 7 huge vials almost took me out! I was dizzy and lightheaded and sat down to drink some juice.
Then, at exactly 9:52am (again - clock looking before drawing), they drew 1 vial . . . much better than 7 . . . and had more waiting time. It's taken us only 7 days at National Jewish to discover a huge room full of tables for eating, hanging out and waiting . . . duh! So, instead of waiting for hours in small cramped places and uncomfortable chairs, we waited in style. We played games, ate a packed lunch and waited.
Then, at exactly 1:52pm . . . you get the point . . . two more giant vials . . . went pale on the lady so I got a free cranberry juice! The perks get better everyday.
At 2pm I attended a "nutrition for people with lung disease" class . . . I learned not to worry to much about eating a crazy "anti-inflammatory diet" as there is no proof in any "special" foods that magically cure asthma . . (no Travis - we don't have to eat a diet consisting only of lima beans for the rest of our life) The importance (as is important for everyone) is eating a healthy balanced diet with lots of good healthy protein and fruits and veggies and lots of water . . . that I can do.
Headed back upstairs for a final sputum induction test . . . and finished all the tests!!!! In a span of 6 days at the hospital, I went through over 35 tests, consults and procedures . . . and I feel it today . . . my hiney is dragging . . .
We wore our matching Denver shirts for a final picture . . .
I don't know if you can see in the picture but my mom is practically holding me up on the wall . . . I'm about ready to fall over . . .
Tomorrow is a big day . . . we do a final spirometry test then meet with the team of doctors and nurses for an hour long appointment . . . they are going over all the tests (that have results back - some need 4-6 weeks to finalize and we'll get those results at home) . . . they are going to recommend a better management plan and hopefully send us home with some fresh ideas . . . I'm ready - I'm ready to hear the final assessment . . . and I'm ready to go home . . .
This has been an incredible experience . . . I am so thankful for this opportunity - it has been so much more than I ever imagined . . . in good and difficult ways . . . we have met incredible people, treated like family at our hotel, supported and cared about by the hospital staff, maxed out on tests, exhausted by appointments, worn down with constant motions . . . and yet, I will never look back and regret one second here . . . the time with my mom has been priceless . . . the number of people with the same illness as myself has been encouraging . . . and the cutting edge of respiratory medication has been fascinating and exciting . . . I think it's gonna take me weeks to even process all that's happened here . . . thanks for joining us in this journey . . . more to come tomorrow . . .
Tuesday, December 7, 2010
A Little Learning and a Little Shopping
Another 7:15am shuttle this morning . . . which means I got up at 6:15am . . . which means that in Washington time I got up in the 5's . . . I don't do the 5's . . . I digress . . .
I started today with a consultation with a speech specialist (I asked for bonus points for having a best friend in the business . . . sorry Melissa . . . no good) . . . We worked on some different breathing techniques that can help re-train my vocal cords. After such a long time of uncontrolled asthma, they begin to close . . . these exercises help them to open up again enabling the medication to get down better, my voice get stronger during flare-ups and overall, better breathing . . . kind of the point in this journey!
I then moved downstairs to the basement . . . didn't know they had a basement at the Alamo?! . . . I met with a nutritionist who reconfirmed the huge weight gain I've experienced over the last year has been thanks to steroids . . . wish it was from eating cheeseburgers everyday so I could stop the crazy gluttonous intake and lose all the weight . . . unfortunately, steroids don't work that way . . . even if and when I am able to get off the steroids, my body will take another 6 months to a year to regulate itself and return to some form of my normal weight . . . no bikinis in my near future . . . ok - never had a bikini in my future at all - two kids . . .you get the gist . . . just ready to fit in my old clothes again . . . this to shall pass . . .
Following the consult, I was scheduled for a relaxation and stress management class . . . stress? what stress? . . . the instructor walked through a guided imagery exercise about a beach . . . blah blah sand . . . blah blah water . . . I almost fell asleep . . .
I headed back upstairs to wait and wait and wait and do some more puzzles and wait for another sputum sample test . . . I love this place . . . the gifts keep on coming . . .
At 1:30, we caught the shuttle back home to drop off all our hospital stuff, call the airporter shuttle to line up our transportation to the airport on Friday, and prep for an outing. Our super kind hotel shuttle took us to the 16th Street Mall - literally at least 20 blocks of outside mall . . . with a free shuttle that picked you up at each block to transport you to the next block . . . my mom and I poked in a few shops, picked up a few things then headed to a yummy restaurant for dinner . . .
It was called Willie G's and we both had a delicious steak with potatoes and broccoli . . . I have a day full of progressive blood tests tomorrow to check for steroid absorption so we decided to eat a big iron laden meal to prep for the fun day . . . some photos of the downtown sights and the beautiful train station . . .
After finishing our delicious dinner, we caught a taxi like a local and headed back to our hotel for a night playing card games in our pjs . . . I'm tired . . . this is a lot . . . but I am so excited to be here and everyday learn something new . . . even the little ideas will help manage this crazy illness in a better way . . .
Being at a Jewish hospital, there are menorah's everywhere in honor of Hanukkah . . . each day, we notice another light bulb is lit . . . we realized today, there are only two more days of Hanukkah . . . and two more days at National Jewish hospital for me. . . ironic? I don't think so . . . good night from Denver . . . peace out . . . or shalom . . . or whatever floats your boat . . . (no disrespect to the wonderful Jewish people . . .)
I started today with a consultation with a speech specialist (I asked for bonus points for having a best friend in the business . . . sorry Melissa . . . no good) . . . We worked on some different breathing techniques that can help re-train my vocal cords. After such a long time of uncontrolled asthma, they begin to close . . . these exercises help them to open up again enabling the medication to get down better, my voice get stronger during flare-ups and overall, better breathing . . . kind of the point in this journey!
I then moved downstairs to the basement . . . didn't know they had a basement at the Alamo?! . . . I met with a nutritionist who reconfirmed the huge weight gain I've experienced over the last year has been thanks to steroids . . . wish it was from eating cheeseburgers everyday so I could stop the crazy gluttonous intake and lose all the weight . . . unfortunately, steroids don't work that way . . . even if and when I am able to get off the steroids, my body will take another 6 months to a year to regulate itself and return to some form of my normal weight . . . no bikinis in my near future . . . ok - never had a bikini in my future at all - two kids . . .you get the gist . . . just ready to fit in my old clothes again . . . this to shall pass . . .
Following the consult, I was scheduled for a relaxation and stress management class . . . stress? what stress? . . . the instructor walked through a guided imagery exercise about a beach . . . blah blah sand . . . blah blah water . . . I almost fell asleep . . .
I headed back upstairs to wait and wait and wait and do some more puzzles and wait for another sputum sample test . . . I love this place . . . the gifts keep on coming . . .
At 1:30, we caught the shuttle back home to drop off all our hospital stuff, call the airporter shuttle to line up our transportation to the airport on Friday, and prep for an outing. Our super kind hotel shuttle took us to the 16th Street Mall - literally at least 20 blocks of outside mall . . . with a free shuttle that picked you up at each block to transport you to the next block . . . my mom and I poked in a few shops, picked up a few things then headed to a yummy restaurant for dinner . . .
It was called Willie G's and we both had a delicious steak with potatoes and broccoli . . . I have a day full of progressive blood tests tomorrow to check for steroid absorption so we decided to eat a big iron laden meal to prep for the fun day . . . some photos of the downtown sights and the beautiful train station . . .
After finishing our delicious dinner, we caught a taxi like a local and headed back to our hotel for a night playing card games in our pjs . . . I'm tired . . . this is a lot . . . but I am so excited to be here and everyday learn something new . . . even the little ideas will help manage this crazy illness in a better way . . .
Being at a Jewish hospital, there are menorah's everywhere in honor of Hanukkah . . . each day, we notice another light bulb is lit . . . we realized today, there are only two more days of Hanukkah . . . and two more days at National Jewish hospital for me. . . ironic? I don't think so . . . good night from Denver . . . peace out . . . or shalom . . . or whatever floats your boat . . . (no disrespect to the wonderful Jewish people . . .)
Monday, December 6, 2010
So Many More Tests . . .
We hit the ground running this Monday morning on the 7am shuttle to National Jewish. The hotel manager, James, was our shuttle driver this morning.
The first shuttle was full so my mom took the second shuttle and met me at the hospital. I went up to the pulmonology department for a "respitory care sputum induction" . . . I'll leave the details to your imagination but there was a stuffed animal from the Mucinex brand holding a sign that said, "I Love Mucus!!" I guess it takes all kinds. I was just fine on my own - until I left my paperwork in the waiting room . . . dropped my coat in the hallway . . . and had to manage my purse in the appointment room - where's my mommy?!
For the second appointment of the day, we were sent on a goose chase to find an office in the pediatrics department of all places . . . wait - wasn't I just crying for my mommy?! . . . It was with a pharmacokinetics specialist. That is a huge word for someone who studies what medicine does to your body and how your system reacts to it. The doctor here has planned an all day study to test my body's absorption of prednisone and steroids in all it's forms. She read a list of side effects possible with long term steroid use and I had all of them . . . think it's a good idea we're having this test. The official day of drawing blood is on Wednesday - today was just the day to talk about the process and gather information about my history.
We then hit a roadblock . . . in the Amazing Race, this is a crazy task that only one person on the team can participate in . . . guess who got picked?! It was me!! Yipee!! The task was a esophogram barium swallow. I had to fast last night and this morning in preparation for this once-in-a-lifetime experience. Wearing one of the beautiful gowns they have to offer here, I went into a little room and stood on a tiny platform. Over the course of the next ten minutes, I was laid down, sat up, moved my arms up, then moved them down, and in between all of this shuffling and moving, I was instructed in drinking a variety of thicknesses of chalk . . . gulp it, chug it, swallow once, swallow three times in a row, hold it in your mouth, swallow it down, drink some more, lay down, drink lots, gulp more . . . you get the drill - it was horrible . . . glad it's over . . . at least for now.
At 10:30am I went to a mandatory psych consult appointment . . . I tried to send my mom - she's seeing Willy Wonka every where we go since our trip to the chocolate factory - I'm starting to get worried about her . . .
Back to the day . . . I was finally able to eat and I was starving! We checked our appointment schedule and realized we don't have anything else until 4pm . . . so we waited . . . and waited. . . and waited . . . and waited . . . we played some card games . . . and waited . . . did some puzzle books . . .
And waited . . . and waited . . . and waited . . . and waited . . . and finally, it was my turn . . .
And yes - it is another barium swallow test . . . I'm loving me some barium!! (on the board it's called a fluoroscopy . . . a fancy word for swallowing crummy chalk stuff) . . . and if anyone is keeping track at home, I've had four of the seven tests offered on the biomedical imaging menu . . .
This test was not as bad as the first one but still not super fun - the purpose of this one was to see how I swallow . . . something I'm sure you've always wondered about . . . an x-ray board was brought over to my face - I mean really close to my face . . . then I was instructed on swallowing a variety of thicknesses of barium . . . watery, thick, pudding consistency, then a cracker spread with barium . . . would you like some barium to go with your barium?
I finished the test and we caught the shuttle back to our cozy hotel . . . I'll leave you with some photos (as promised) of our beautiful hotel . . .
The first shuttle was full so my mom took the second shuttle and met me at the hospital. I went up to the pulmonology department for a "respitory care sputum induction" . . . I'll leave the details to your imagination but there was a stuffed animal from the Mucinex brand holding a sign that said, "I Love Mucus!!" I guess it takes all kinds. I was just fine on my own - until I left my paperwork in the waiting room . . . dropped my coat in the hallway . . . and had to manage my purse in the appointment room - where's my mommy?!
For the second appointment of the day, we were sent on a goose chase to find an office in the pediatrics department of all places . . . wait - wasn't I just crying for my mommy?! . . . It was with a pharmacokinetics specialist. That is a huge word for someone who studies what medicine does to your body and how your system reacts to it. The doctor here has planned an all day study to test my body's absorption of prednisone and steroids in all it's forms. She read a list of side effects possible with long term steroid use and I had all of them . . . think it's a good idea we're having this test. The official day of drawing blood is on Wednesday - today was just the day to talk about the process and gather information about my history.
We then hit a roadblock . . . in the Amazing Race, this is a crazy task that only one person on the team can participate in . . . guess who got picked?! It was me!! Yipee!! The task was a esophogram barium swallow. I had to fast last night and this morning in preparation for this once-in-a-lifetime experience. Wearing one of the beautiful gowns they have to offer here, I went into a little room and stood on a tiny platform. Over the course of the next ten minutes, I was laid down, sat up, moved my arms up, then moved them down, and in between all of this shuffling and moving, I was instructed in drinking a variety of thicknesses of chalk . . . gulp it, chug it, swallow once, swallow three times in a row, hold it in your mouth, swallow it down, drink some more, lay down, drink lots, gulp more . . . you get the drill - it was horrible . . . glad it's over . . . at least for now.
At 10:30am I went to a mandatory psych consult appointment . . . I tried to send my mom - she's seeing Willy Wonka every where we go since our trip to the chocolate factory - I'm starting to get worried about her . . .
Back to the day . . . I was finally able to eat and I was starving! We checked our appointment schedule and realized we don't have anything else until 4pm . . . so we waited . . . and waited. . . and waited . . . and waited . . . we played some card games . . . and waited . . . did some puzzle books . . .
And waited . . . and waited . . . and waited . . . and waited . . . and finally, it was my turn . . .
And yes - it is another barium swallow test . . . I'm loving me some barium!! (on the board it's called a fluoroscopy . . . a fancy word for swallowing crummy chalk stuff) . . . and if anyone is keeping track at home, I've had four of the seven tests offered on the biomedical imaging menu . . .
This test was not as bad as the first one but still not super fun - the purpose of this one was to see how I swallow . . . something I'm sure you've always wondered about . . . an x-ray board was brought over to my face - I mean really close to my face . . . then I was instructed on swallowing a variety of thicknesses of barium . . . watery, thick, pudding consistency, then a cracker spread with barium . . . would you like some barium to go with your barium?
I finished the test and we caught the shuttle back to our cozy hotel . . . I'll leave you with some photos (as promised) of our beautiful hotel . . .
Sunday, December 5, 2010
A Full Day of Rest
Today was a true day of rest . . . we had nothing on the agenda . . . no appointments . . . no tests . . .
I slept in . . . had some breakfast . . . took a looong nap . . . took a shower . . . just had some dinner . . . then am getting ready for bed.
I am thankful for a restful day . . . apparently I needed it . . .
I got to talk to the family tonight for a while on the phone. They are doing great (or so they say?!) . . . it was so fun to hear their sweet little voices talk about all their adventures. I am missing them but am feeling so busy with appointments and things to do here to fully take advantage of this experience, there are not a lot of hours in the day to miss home - a blessing in and of itself.
Tomorrow starts the week off with a bunch more tests . . . I'll let ya know . . . for now, I'm going back to sleep - Happy Sunday!!
I slept in . . . had some breakfast . . . took a looong nap . . . took a shower . . . just had some dinner . . . then am getting ready for bed.
I am thankful for a restful day . . . apparently I needed it . . .
I got to talk to the family tonight for a while on the phone. They are doing great (or so they say?!) . . . it was so fun to hear their sweet little voices talk about all their adventures. I am missing them but am feeling so busy with appointments and things to do here to fully take advantage of this experience, there are not a lot of hours in the day to miss home - a blessing in and of itself.
Tomorrow starts the week off with a bunch more tests . . . I'll let ya know . . . for now, I'm going back to sleep - Happy Sunday!!
Saturday, December 4, 2010
A Great Day Out . . . in so many ways . . .
Praise the Lord for today . . . at 11:45 I got to the hospital to remove the impedance tube from my nose!! HOORAY!!! It was not a fun night - again, I'll spare ya the details but it was terrible . . . and it is over!!!
We decided to take a much needed break from the hospital and hotel and headed to the local mall - Cherry Creek. Over the last few days, we've met a sweet woman who traveled to Denver alone. She was really interested in going to the mall as well so we adopted her for the day. We really enjoyed checking out the new stores (and yes - I'm in a wheel chair - it's a huge mall and after all the tests and lack of medicine this past week, I have the lung capacity of a flea)
We decided not to go into "BCBGMAXAZRIA" . . . Janice (our new friend) said, "If you can't pronounce it, you probably can't afford it!" What a hoot . . . and have you ever heard of a frozen yogurt bar? It looked like a lot of fun - a whole bunch of yogurt flavors then a bar full of toppings . . . sort of like a self serve Cold Stone. We were getting hungry so we headed over to Johnny Rockets for some yummy hamburgers, french fries and happy ketchup . . .
We finished walking (or riding) around the mall and then hit a road block . . . this is a choice between two tasks (back to Amazing Race analogies) . . . we heard about a light parade happening in down town Denver . . . we had to decide to navigate a bus system we had no idea what to catch or where OR flag a cab . . . we went with the cab . . . and it was not easy . . . and it was cold . . .
You can BARELY see my mom at the end of the light path in a stripped shirt - had to catch her in the act . . . and can't add sound but you'd hear Janice and I cracking up at the fact that not a single cab passed as soon as she decided to take her street side position BUT at last, we were able to find one, hopped in and rode downtown. We had to walk a few blocks but the show was amazing . . . as close to Macy's Day Parade I'll ever be . . . they need no more words . . . I'll let the pictures speak for themselves . . .
The parade ended with a visit from Santa (the most real looking Santa I'd ever seen . . . who knew the North Pole was in Denver?!) . . . we flagged a taxi (like experts this time), rode back to the hotel, wished our sweet Janice a good night and hunkered down for the evening.
I'd been texting Travis for reports of the Apple Cup and was thrilled to find it on TV here in Denver!! I caught the last few minutes and screamed a whoo hoo . . . GO HUSKIES!! Could this day have been any better?
We are really feeling all the prayer and support here . . . everything is going so well - friendly people, a comfortable hotel room, competent doctors and nurses, funny experiences, a nice time of bonding for my mom and I, happy reports from home . . . it's really going so well . . . thank you so much for your part in our journey!
We decided to take a much needed break from the hospital and hotel and headed to the local mall - Cherry Creek. Over the last few days, we've met a sweet woman who traveled to Denver alone. She was really interested in going to the mall as well so we adopted her for the day. We really enjoyed checking out the new stores (and yes - I'm in a wheel chair - it's a huge mall and after all the tests and lack of medicine this past week, I have the lung capacity of a flea)
We decided not to go into "BCBGMAXAZRIA" . . . Janice (our new friend) said, "If you can't pronounce it, you probably can't afford it!" What a hoot . . . and have you ever heard of a frozen yogurt bar? It looked like a lot of fun - a whole bunch of yogurt flavors then a bar full of toppings . . . sort of like a self serve Cold Stone. We were getting hungry so we headed over to Johnny Rockets for some yummy hamburgers, french fries and happy ketchup . . .
We finished walking (or riding) around the mall and then hit a road block . . . this is a choice between two tasks (back to Amazing Race analogies) . . . we heard about a light parade happening in down town Denver . . . we had to decide to navigate a bus system we had no idea what to catch or where OR flag a cab . . . we went with the cab . . . and it was not easy . . . and it was cold . . .
You can BARELY see my mom at the end of the light path in a stripped shirt - had to catch her in the act . . . and can't add sound but you'd hear Janice and I cracking up at the fact that not a single cab passed as soon as she decided to take her street side position BUT at last, we were able to find one, hopped in and rode downtown. We had to walk a few blocks but the show was amazing . . . as close to Macy's Day Parade I'll ever be . . . they need no more words . . . I'll let the pictures speak for themselves . . .
The parade ended with a visit from Santa (the most real looking Santa I'd ever seen . . . who knew the North Pole was in Denver?!) . . . we flagged a taxi (like experts this time), rode back to the hotel, wished our sweet Janice a good night and hunkered down for the evening.
I'd been texting Travis for reports of the Apple Cup and was thrilled to find it on TV here in Denver!! I caught the last few minutes and screamed a whoo hoo . . . GO HUSKIES!! Could this day have been any better?
We are really feeling all the prayer and support here . . . everything is going so well - friendly people, a comfortable hotel room, competent doctors and nurses, funny experiences, a nice time of bonding for my mom and I, happy reports from home . . . it's really going so well . . . thank you so much for your part in our journey!
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