|
|
The title of this page comes straight from Mickey. One day in the hospital
a few months after she was diagnosed, she overheard Jenny say something on the phone about self-defense. As she was laying in her bed, Mickey started doing karate punches and kicks like Bradley does in his self-defense class and said, "Mommy, I'm kickin' cancer's butt!" This has become our family motto now! Click here for a brief synopsis of the days just before and after diagnosis. Okay, the spammers won. We are taking down the guestbook. Please feel free to e-mail us as Mickey enjoys hearing the good messages left in her guestbook. mickey@deputyfamily.net
Presenting Jenny's interview for the Riley Radiothon:
Click either the picture or the text above
Thursday, November 30, 2007 Welcome to the cold and sinus yuckiness season. Both kids stayed home today with sore throats, coughs and yucky noses. Mickey sounded just like she did in Disney with her cough so I didn't want to take any chances. I took them both in to the doctor. Both had some major drainage causing their sore throats. So both are now on Zithromax and should be feeling much better soon. Hopefully by tomorrow since we have a Christmas party to go to tomorrow evening. :) Click here to see our family as a bunch of elves: http://www.elfyourself.com/?id=1121442014
Wednesday, November 28, 2007 Not much exciting happening here. Both kids are a bit under the weather. Brad had such a sore throat today that it woke him up. He stayed home and rested today. Mickey has a bit of a cold but was able to go to school. She will be going to clinic next Tuesday and is looking forward to seeing everyone there.
Thursday, November 22, 2007 Happy Thanksgiving! I hope you all have had a blessed day. We had a great day today with part of Michael's family. I cooked my first-ever turkey! I was so proud of it! It turned out yummy according to everyone who ate it. (I don't care for plain turkey so I also made a small ham.) We all ate too much then watched National Treasure together. Great flick! Now we're hanging out watching the Colts beat the Falcons. Cousin Sydney is spending the weekend with us so we have barely seen him and Brad today. They came out to eat under duress and then went back into Brad's room. They are having great fun! So what are you thankful for today? I am thankful for my husband who is my rock and my best friend; for Mickey, the strongest and bravest little girl I know; for Brad, my tough little man whose smile melts my heart; for our extended family who has helped us so much this year in addition to the last three years; for my Lord for blessing us with so much! We have so much for which to be thankful!
Saturday, November 17, 2007 Remember when Mickey was inpatient and we had our pictures taken by Flashes of Hope? Well, we got them back yesterday. They are beautiful!! Here's a link to all of them. Since there are so many pictures, I did them as thumbnails. If you want to see them bigger, just click on the picture to enlarge it.
Friday, November 16, 2007 Wow! Where did the week go?! We had a busy week with a pizza party for the kids at church on Wednesday night and self defense last night. Tonight we went to a local high school to see their production of The Wiz since Mickey is such a Wizard of Oz fan. We had a good time and enjoyed the musical. Mickey got to meet Glinda and Dorothy afterward, giving them big hugs and telling them how well they did. We're headed into a crazy weekend. Tomorrow morning is a Magnet Fair for our school district. We're going to see what magnet schools there are in case one of them would be a better fit for either of the kids than the school they will be going to. Then tomorrow evening I'm getting together with a group of ladies to do rubber stamping. I used to every month but haven't been in over a year probably. It will be fun seeing everyone again. Sunday we're going to help load the food baskets from church into a semi-truck then we'll caravan with other people to Shepherd Community Church where we will unload them into trucks to be delivered to needy families in Indianapolis. We're going to load some into our Explorer and do some deliveries ourselves. Hopefully we'll bless someone's life Sunday in a special way.
Saturday, November 10, 2007 Ahhh...the weekend! This is one of those rare weekends when we didn't have plans made long in advance. Michael's out for a bike ride since it's a beautiful (but cold!) day. The kids are watching movies and I'm getting ready to snuggle up with a good book. After while we're going to go shopping to fill a Thanksgiving basket for church but that's the extent of our plans for the day. Michael is feeling better. YEA! My foot is slowly healing. It still hurts most of the time, but it's getting better. Mickey is getting over a bit of a cold she had. And Brad is doing fantastic! That's the way we like it!
Wednesday, November 7, 2007 Happy Wednesday! All is well in the Deputy house. Well, most is well. Michael is a bit under the weather, but otherwise all is well. My foot is still hurting pretty bad most of the time. Now that I don't have the bandages on, my surgical shoe rubs and bumps my incision and hurts. I am going to try covering the incision with a gauze pad today to see if that helps. Monday evening's school district meeting was informative. Our district is losing an average of 1000 students/year so they need to cut $20 million from the general fund. This is one way they will do it. We found out that Mickey and Brad will go to a brand new school nearby. It's less than 5 years old and has A/C and all new technology. So that is a wonderful thing. Now we're praying that Mickey's resource teacher will be able to go there too! :)
Monday, November 5, 2007 It just doesn't seem possible that it's already November! The last two months have been a blur! Hey! Did you see the Colts game yesterday? Even though the Colts lost, we were jumping (well, I wasn't actually jumping!) and yelling for Gary Brackett when he made that incredible interception! It was just too cool to think that we met him just last week! I got the stitches out of my foot today. Man is my foot ugly!!! All bruised and swollen! YUCK! But it feels better having it unwrapped. I still have to wear my highly fashionable surgical shoe for another week. Then I can get back into my comfy tennis shoes. Mickey is doing well. I took her into the doctor last Thursday for a sore throat. We just aren't taking any chances right now! One of her ears was red so the doctor put her on antibiotics. She's been a little more tired than usual, but she said yesterday that she has bad dreams sometimes so she tries not to sleep. Brad is doing great. He was chosen as the Student of the Week for this week in his class. So tomorrow I'll take in his karate belt board and some of his trophies for him to show. Michael is great! He was such a wonderful husband the last couple of weeks - even more wonderful than normal. He did everything so I could keep my foot elevated. I didn't have to cook or do dishes or laundry. He spoiled me! I have a prayer request. Michael and I are going to a meeting tonight regarding proposed redistricting for our school district. If the proposal goes through, our elementary school will close at the end of this year. We love our school and hate to leave it. The teachers and staff are wonderful with Mickey and have worked with us since Kindergarten to keep her fully included with her classmates. However we need to be open to what God may have in store for Mickey and Brad. We also are facing the possibility of having to leave Riley for Mickey's leukemia check-ups due to a change of insurance at Michael's employer. We have some decisions to make in the coming days and would truly appreciate prayer for God's wisdom and guidance. (If we do leave Riley, we would transfer her care to Peyton Manning's Children's Hospital at St. Vincent.) Thanks for praying with us!
Wednesday, October 31, 2007 Greetings from the hobbling one. My foot is healing nicely but still causing me quite a bit of pain. Michael and the kids are great about doing things for me so I can keep my foot elevated as much as possible. Michael went back to work yesterday so I was on my own. I did pretty well although I did miss him! Per doctor's orders I took it really easy yesterday so I could go with the rest of the family to tour the Colts training facility and meet Gary Brackett. It was cool! Gary Brackett is the spokesman for the Leukemia and Lymphoma Society's School and Youth Programs. Mickey is an honored hero for that program for this school year so we were invited to meet him along with 5 other honored heroes. Gary Brackett is a nice guy! We all had a good time touring the facility and checking out the locker room. We got to go into the indoor practice field for pictures and autographs. Mickey and Brad had a great time and didn't shy away from him at all.
Saturday, October 27, 2007 Jenny went to the doctor yesterday and had a x-ray and were able to see how Frankensteiny her toe looks. Everything is exactly like the doctor was expecting. So it still hurts, but at least it is straight. So once it heals, she should be walking pain-free again. Today Mickey had a great day with grandma. She went coat shopping. She went to 7 different stores. and found the perfect one. She also went bowling, and had Chinese buffet for dinner. It was an all around good day.
Thursday, October 25, 2007 Today was Jenny's surgery. It went well, they only had to take the leg at the knee. Calm down, I'm just joking. The surgery took about an hour. She did well and her foot is hurting, but the medicine is helping. We go see the doctor tomorrow to get some x-rays and to change the dressing. Mom and Dad Dep really helped out with getting her home and hanging out with Mickey and Jenny while Brad and I went to karate. She's eating some soup and trying to stay awake until her next pill. Then it's time to sleep.
Wednesday, October 24, 2007 Fall is officially here! The temperatures have dropped to the 50's and 60's, the leaves are changing and it's sweatshirt weather! I love it!! Michael gave me an oversized Indianapolis Indians sweatshirt this summer and I love wearing it. It's toasty, brings back memories of the games we've gone to with the kids and reminds me of how much my husband loves me! Ahhh..... Today we had parent/teacher conferences at school. Michael and I both have vivid memories of conferences from when we were kids. Michael's memories consist of getting in trouble after conferences and mine consist of hearing that I talk too much in class. (gee some things never change - I still talk too much!) Brad's conference was first and went very well. He made the A/B honor roll for the nine weeks and passed all of his benchmark tests! His teacher was thrilled with him. She said he has some social issues in that he's a bit of a loner at recess and she has to encourage him to get involved in games with the other boys. Aside from that the only thing we have to work on is his handwriting. I hate to say it, but the boy doesn't stand much of a chance in that department. Michael and I both have awful handwriting. Mickey's conference went well, too. Her classroom teacher met with her resource teacher yesterday to work out a daily schedule that will allow for more pull-out time, giving Mickey more one-one instruction time. Originally we wanted her in the classroom as much as possible. But we've had to change plans since she missed so much school. Now we're working on getting her caught up. It looks like it's going to work out well. One final thing, please pray for me tomorrow morning as I have surgery to remove the bunion on my left foot. She will also have to break my big toe, reposition a tendon and screw my toe back together in the proper place. It's not going to be fun! But at least I'll be knocked out for it! I am not sure how long I'll be off my foot, but I do know the recovery will be a long process. Thanks for your prayers!
Sunday, October 21, 2007 We made it through fall break and Aunt Joy's wedding and lived to tell about it all! We had a great weekend! The kids did great at the rehearsal. It was at a Catholic church and so things were done a bit differently than we are accustomed to. Mickey had to bow to reference the altar when she got to a certain point in the front of the sanctuary. She did it perfectly in the run-through and then stood right behind Aunt Merrie like a little lady. After a great dinner, we headed home to get a short night of sleep before starting early Saturday morning. Grandma Deputy picked Mickey up at 7:00 AM so she could go with the other ladies to get her hair done. She was so excited! Brad, Michael and I finally saw her at the church around 10:00. She looked great! Brad did an excellent job handing out programs and ushering Grandma down the aisle with cousin Sydney. Mickey did awesome during the entire wedding. I wasn't sure if she'd remember to bow, but she did! And in typical Mickey fashion, we all got a big thumbs up about halfway through the service! :) We all had a great time at the reception dancing and visiting with family and friends. Sydney came home with us after the reception for the night. He and Brad got lost in Pokemon world most of the time and thoroughly enjoyed themselves! Here are a few pictures from the weekend:
Left to right: Before rehearsal; Mickey and Brad; the Three Amigos!; Mickey dancing Now I have to share a funny thing Mickey said today. Michael and I are working on teaching the kids to ask "may I" instead of "can I" if they want something or want to do something. Well, today on the way home from church, Mickey said she wanted to go out to lunch. I asked her how she was going to finance this plan. She very sweetly said, "May I please?" as if that were the magic ticket. It was very funny, but not funny enough to earn lunch out.
Thursday, October 18, 2007 There's not a lot to report from Deputyland. The kids' fall break started yesterday after school. Brad is really happy!! We spent the day running errands. Tomorrow will be spent running more errands then resting up to get ready for Aunt Joy's wedding on Saturday morning. Mickey will be a junior bridesmaid and Brad will be handing out programs. I can't wait to see him in his tux!! Don't worry - there will be lots of pictures! :)
Monday, October 15, 2007 Today was clinic for both hem/onc and pulmo. Mickey started with a chest x-ray before hem/onc. Then she had a blood draw and check up in hem/onc. Her counts were fabulous! Everything in the normal range! Praise God! After hem/onc we grabbed a bite of lunch before heading up to pulmo. Another good check-up and flu shot later and we were on our way out. We only have to go back to pulmo if we think she needs to see Dr. Montgomery. Otherwise we are released from pulmo clinic again. We are so thankful to God for the good reports today.
Sunday, October 14, 2007 We have been *busy* around here. Mickey came home early on Friday with a headache and tummy ache. I think she was mostly worn out from being back in school for a couple days. So I let her come home and rest for the rest of the day so she'd be ready for Saturday. Saturday dawned bright and chilly. Michael went for a bike ride while the kids and I lounged around taking it easy till time to leave for the Down syndrome Buddy Walk. We had a great time there. We took Belle with us. She loved being around all the people and the other dogs. We met up with old friends we hadn't seen for a while and got to meet an online friend we'd never met in person. That was really fun! We left the Buddy Walk in time to take Belle home, grab a bite of lunch and change into out Light the Night volunteer shirts. We headed up to Victory Field in time to start our volunteer shifts. Michael helped inflate balloons for over two hours. I was a greeter, handing out maps and answering questions at one of the gates. Brad made a new friend within the first 15 minutes and was off and running around with him. Mickey hung out with another LLS person till Grandma Deputy got there and then those two were pretty much inseparable. We started out on the walk, but my foot was hurting pretty bad after being up on it all day. So Michael sent me to sit down and rest. He and Mickey went about 2 blocks before she was too tired so they came back to join me. Brad walked with Grandma and Grandpa Deputy, Aunt Joy and soon-to-be Uncle Brian. All told, we had a great day full of friends and family. Can't ask for much more than that!!!
Thursday, October 11, 2007 Good morning! I would like to start today's update with a prayer request. Matthew is a young man I met early on during Mickey's leukemia treatment. He relapsed soon after Mickey was diagnosed. His wonderful mom, Nancy, researched options and they chose to go with more chemo rather than a bone marrow transplant. He just finished his relapse protocol in July. Yesterday they found out Matthew has relapsed in his central nervous system. Today he will have a bone marrow aspiration to see if the leukemia is contained to his CNS or if it is also in his marrow. Please pray for Matthew and his family as they start this journey all over again. Leukemia is scary; a relapse is horrible; a 2nd relapse is devastating. Thank you for praying for him. There are practical ways you can help Matthew and countless other leukemia patients. Donate blood. Sign up for the National Bone Marrow Registry (Matthew will need a bone marrow or stem cell transplant.) Donate platelets. Here things are going along great guns. Yesterday was a half day but Mickey had a girl scout meeting after school. So she ended up staying till 2:30. She didn't have any endurance problems. And then we went to church last night. She was not overly tired at all. She had a nice surprise last night during church. Apparently she wanted to stay out in the kids; large common area to watch the cast rehearse for Sunday's drama when it was time to go into the classroom. She went along with the other kids, though, like she was asked. So when the cast was finished practicing, they went in to visit her. Michael and I arrived from our class just in time to see her talking to all of them. Vinny was there and it made Mickey's day. These people are truly a gift from God!
Wednesday, October 10, 2007 Mickey had a great day yesterday. I talked to her teacher briefly and she said Mickey did not say she was tired or seem overwhelmed at all. She said she was a little quiet, but that was to be expected. Praise God! Today is a half day at school, but Mickey will be staying a little later since they are offering a Girl Scout session at school until 3:30. She was very excited about trying Girl Scouts. It is suddenly fall in Indiana. We went from 90 on Monday to an expected high of 59 today! I am going shopping here in a bit to find uniform pants for the kids. I hadn't gotten them any yet and they sure could use them today!
Tuesday, October 9, 2007 Well, she did it! Mickey went back to school today for the first time since August 24! You should have heard the chorus of "Michaela's back!!" when she walked into her classroom. All the kids were so happy to see her. She's going half days this week just to get back into the groove. She'll be out of school Monday for clinic visits and then again Thursday and Friday for Fall Break. So we're going to try for full days on Tuesday and Wednesday to see how she does. The Family Fun Fest lived up to its name. We all had a lot of fun. Michael and I ran the cotton candy machine so the kids took off on their own for a good part of the evening. They had fun playing in the bounce house and on the giant inflatable obstacle course. We all went on a hay ride together. That was fun!
Sunday, October 7, 2007 Happy Birthday, Dad! I love you!! Friday night's Light the Night fundraiser was very successful! We raised over $300 in just two hours! I could not believe it. Brad is really good at these bucket shakes and took in the majority of the money. Of course, we are still taking donations for our Light the Night Team. Click here to donate. Yesterday we had a great time celebrating my dad's birthday. It was fun seeing some old friends at Mom and Dad's church last night. I saw a classmate I hadn't seen in over 5 years! What fun! We're getting ready to head to church for a family fun fest. We're going to have hay rides, food, bounce houses, food, movie, and food. Should be a fun evening! Mickey will continue with her homebound education tomorrow. I hope to take her to school for a couple of hours on Tuesday since her homebound teacher will not be able to come that day. I want to start getting her back into the groove of school a little at a time. We'll see what Tuesday brings, though.
Friday, October 5, 2007 Last night started the new semester of karate and dance/cheerleading for the kids. Mickey has done cheerleading the last 3 semesters but decided to change to dance since it's being offered. Unfortunately she was not ready for that much activity. She got winded and started coughing pretty bad. We made the decision to pull her out for this semester to give her more time to recover. She was a little disappointed but not too upset. Brad had a great night in karate. He really enjoys it and is very good. We're heading into a busy weekend. Tonight is the fund raiser at Sam's in Greenwood. Then tomorrow we're headed up to my parents' to celebrate Dad's birthday. (Good news on Dad - his CT scan from this week showed no new spots on his lungs, so the chemo is working!) Then Sunday evening our church is having a Family Fun Fest. It should be a good time!
Thursday, October 4, 2007 Good morning! All is well here in Deputyland. I am experimenting with updating the webpage in the morning instead of the evening. We'll see how this works out after a few days. Mickey's homebound education went very well yesterday. Mr. Williamson is a new teacher at our school and it was the first time Mickey and I had met him. (Brad knew him from a small classroom infraction that resulted in Brad spending a few "chill out" minutes in the office a couple of weeks ago.) Mickey worked very hard for over an hour and actually had a good time. We're not sure how long she'll need homebound education, but it's good to know we've got a good teacher working with her. In other news, I went to the podiatrist yesterday to follow up on the bunion on my left foot. I will be having surgery to remove it on October 25. I'm ready to be able to wear shoes besides my favorite Tevas and to be without pain everyday. We are gearing up for the Light the Night Walk a week from Saturday. With everything going on with Mickey I have not been able to do much fundraising. I do have my website set up where you can donate with a credit card. Just click here to donate. We are a long way from our goal of $200. We will be at Sam's Club in Greenwood, IN, this Friday from 6:00-8:00 PM with some team members doing a fundraiser. If you're in the area, please stop by and say hi. In other LLS news, Mickey has been asked to be an honored hero for the Youth and School Programs. We will be writing a letter and a biography about Mickey to be distributed to several hundred schools around the state as they participate in a program called Pennies for Patients. We are excited to be working with LLS as an honored hero and family again!
Tuesday, October 2, 2007 Today we had Mickey's follow-up appointment with our family physician. It was scheduled for Friday but Mickey was complaining of an ear ache so we went in today. Her ear is basically fine, just a little red around the tube in her eardrum. Dr. English wrote us prescription for antibiotics in case it gets worse over the next couple of days, but she doesn't expect it to. Her lungs sounded clear. Her sats were only 92% which on the low side of my comfort level. But since her lungs were so clear, Dr. English was fine with letting us go. We follow up in hem/onc next Monday and then in pulmo on October 15. On the school front, Mickey starts homebound education tomorrow afternoon. She is excited about it. I found out today that one of Mickey's roommates from this hospital stay passed away this morning. Please pray for Kui's family as they deal with their loss.
Monday, October 1, 2007 It's hard to believe that it's already October! This is going to be a very busy month for us with birthdays, walks, a wedding. Plus getting Mickey back to full health and energy. Today she and Michael went to pick up her new glasses. When they got home, she laid down on the couch and took a two-hour nap. I guess we're a long way from going back to school. She was as thrilled as we expected with going to church yesterday. She was so happy to see some of her favorite people there, mainly Vinny who visited her at Riley. I just transferred pictures from the memory stick to the computer so here are a few from her stay at Riley and one of her with her new specs. Left to Right - Doing "The Magic Circle" song in music therapy; feeling the love from her classmates; sad picture that shows how she really felt about the bipap machine!; co-hosting bingo; building a cradle with Norm; and today with her new glasses. Remember you can click on the pictures to enlarge them.
Saturday, September 29, 2007 WOW! It's amazing what 13 hours of sleep can do for a mom! It makes her want more sleep! I went to bed at 8:00 last night and finally got up around 9:30. I felt like I was in a daze for several hours. We had some errands to run. About halfway through we met up with Michael's parents for lunch and the kids ended up going to their house for the rest of the afternoon. So Michael and I finished up the errands by ourselves and then picked them up this evening. Mickey is still feeling well. Her cough appears to be getting better! Praise God! She gets to go back to church tomorrow and is very excited!!!
Friday, September 28, 2007 We're all trying to settle back in to being together again. Mickey is feeling pretty good. She tires very easily, but otherwise is doing well. We plan on keeping her home from school next week and use homebound education to help keep her up to speed. She has been coughing up some gunk today and it has me a little nervous. We're keeping a close eye on her!
Wednesday, September 26, 2007 WE'RE HOME!!! And no oxygen! Mickey went all night without it last night with only minor desats, the doctors decided she doesn't need O2 at home! It's so wonderful to be home together with our whole family! That's about it for tonight. I am more than exhausted and my waterbed is calling me. We have several follow-up appointments in the coming weeks to make sure her lungs are fully healed. Thanks for praying for us. Please don't stop praying for Mickey's continued health.
Tuesday, September 25, 2007 Mickey is feeling much better today! She had one more dose of Phenergan around 4:00 AM and slept till 10:00 this morning. She's been able to eat a normal diet and has not been sick anymore. She has been off oxygen all day! Wanna hear the best news? We'll be headed home tomorrow!!!! Yes, it's finally here! We'll be getting oxygen delivered to our house for Mickey to use at night only. She's still on .5 liter, just enough to need it but not so much to have to stay at the hospital. Remember last week when Mickey co-hosted bingo? They always make a video copy of the show for the patient to take home. Mickey's video tape didn't work. Since we were still here, they asked her to co-host tomorrow's show. So we'll be here till mid-afternoon so she can do her repeat performance. But by tomorrow night, my family should all be at home together for the first time since August 25!! Thank you, God!
Monday, September 24, 2007 What a great night! Mickey was on .5 liter of oxygen all night! I was so excited. Then at 4:30 she started throwing up and couldn't stop. We were *thisclose* to going home had she not gotten sick. But alas, we are still here. Mickey has an IV for fluids and anti-nausea meds. She had a dose of IV Phenergan mid-morning and then slept all day. She woke up around 6:30 this evening and was hungry! She's on clear liquids only so she's had some Jell-O, chicken broth and Sprite. So far everything is staying down. She just told me her tummy hurts again so she'll be getting more Phenergan before it gets worse. We think she picked up a stomach bug and it will have to run its course. I had a nice break today. Michael left work and came up because Mickey needed her daddy. I could see her relax as soon as he walked in the room. Since he was here I was able to leave for a while. His mom took me out for lunch and a pedicure. My feet were a wreck after walking Disney for 5 days and then being here for over 3 weeks. Now they are nice and soft and pretty. It was good to get out for a treat for a while. Thanks, Linda! Also thanks to Sarah for visiting and bringing the Webkinz and balloon. Mickey was tickled with them. Thanks, Mom and Dad, for trying to visit. I wish Mickey had been feeling better so we could have seen you.
Sunday, September 23, 2007 Mickey went through last night on 2 liters of oxygen. Then she spent about 3 hours off it entirely this morning and has been off most of the late afternoon and evening! What an improvement!!! Tomorrow we will start weaning her off the Prednisone. She had to have a finger stick this morning to check her blood sugar. Given her history of steroid-induced diabetes, we wanted to make sure her level was okay. It was great! So no more finger sticks. She was very happy about that! Michael and Brad came up after church and spent the rest of the day with us. We had fun playing games, going for walks and rides and just generally hanging out. I just talked to our nurse about the plan for tonight. We're going to put the nasal canula on Mickey but leave the oxygen off. If she desats, Julie will come in and turn it on. As I sit here now, she's at 92-93% while awake. I have a feeling she'll be on at least a little oxygen soon after she goes to sleep. But she is definitely on the road to recovery!
Saturday, September 22, 2007 Well, I called it! Michael and Mickey stayed up till midnight watching movies last night! Then she had another good night. She had a really good nurse who stayed on top of Mickey's oxygen needs and turned her up just enough to keep her in the 92-94% range. Then when she started satting in the high 90's she turned her down a little. All told, she had a period of about 2 hours when she needed 3 liters of oxygen, but spent most of the night between 2-2.5 liters. (We have to switch our thinking from the % of oxygen to liters now that she's off the mask.) Dr. Montgomery saw her this morning and ordered a few extra days of steroids to hopefully avoid a setback. I'm not sure how many more days she'll be on them before we start to wean her off. He also ordered more walking and coughing to continue to clear out her lungs. So she made a couple of trips downstairs walking and also went to the playroom to beat Michael at foos ball a few times. She was very happy to see Mrs. Woods and Mrs. W. today! Thanks for your visit! Brad and I had a great time together. I actually slept very well last night. I finally got to see all the pictures the Disney photographers took. I can't access the website here at the hospital so I hadn't been able to look at them. Oh my goodness! There are some great shots! I can't wait to get the CD so I can post some of them here. After a leisurely morning I took Brad out for lunch and then to the dollar theatre to see Shrek the Third. It was a cute movie. We made a quick stop at Wal-Mart and then headed up here. Grandma Deputy, Aunt Merrie and cousin Sam were here. They took Brad with them so he could go to the circus tonight with Grandma and Grandpa. He was really excited about that! I made him promise not to run away with the circus! Thank you for your continued prayers. We see God working in healing Mickey. Thanks for being faithful!
Friday, September 21, 2007 Praise God we had another good night! Mickey was on just under 40% oxygen and only desatted when she was sleeping on her right side or if her mask slipped off. We won't have the problem of the mask slipping off anymore since we got rid of it today. She'll be on the nasal canula the rest of the time, day and night. She's not overly thrilled about this decision, but it's for her best since it's a step closer to going home. If the doctors decide to send her home on oxygen, she would not be on a mask at home. We don't know if that's going to happen, but it's good to be prepared. We had a good day with nothing really exciting - just school, activity time, walks, etc. I'm getting ready to head home with Brad for the night. Michael and Mickey will have a good night. Last time he spent the night, they stayed up late watching a movie. I'm betting it will be more of the same tonight! :)
Thursday, September 20, 2007 Again we are making progress. Mickey had another good night. She needed just a little more oxygen than the night before, but only because the nurse chose to give her a little extra O2 rather than disturb her and try to reposition her. The dreaded nasal spray has ended as of 3:00 this afternoon, so Mickey's happy about that. They have also changed her breathing treatments to every 6 hours rather than every 4 hours. So things are heading in the right direction. Mickey had some special visitors today. Our children's pastor came up and brought one of the actors that works with the children's church drama team. Mickey loves the character Vinny and was thrilled to see him. They met us in the library and Mickey and Vinny sat down on the floor and looked at a book together. It was so sweet! Then this evening Grandma and Grandpa Deputy came up and stayed here with Mickey and Brad so that Michael and I could go out for dinner together. It was so nice to get out with my husband. I miss him! While we were gone some friends came to visit. I'm sorry I missed you, Greens and Webbs! Tomorrow night I'll be going home with Brad for the night so there may not be an update unless I think to do it before we leave the hospital. It's hard to believe tomorrow will be the 3 week mark for this hospital stay!! And unfortunately I'm not seeing a discharge date in the next few days.
Wednesday, September 19, 2007 Ahoy, matey! Did you talk like a pirate today? We did and had a good time with it. Mickey's teachers here at Riley saw the sign Michael put on our door last night and brought Mickey and Brad each a goody bag full of pirate themed items like a pencil, stickers, tattoos, etc. I was blown away by their thoughtfulness. Well, I have to thank all you prayer warriors who lifted Mickey up in prayer last night. Her oxygen requirements were down quite a bit last night. She was only on 40% and had a few minor desats. So much better than the night before. Her nasal spray at 1:00 and 5:00 AM went better than the 9:00 PM one did. She fought some, but not as hard. Aside from that, we both had a good night's sleep. Mickey ended up sleeping till around 9:30. We're expecting another good night tonight. After a great night, Mickey's day went even better. She spent the whole day on the nasal canula again and was able to use less oxygen today than yesterday. She was asked to co-host the weekly bingo game that is televised on Riley TV. So we went to this tiny little TV studio here in the hospital and she got to help with the game. She was so excited about it and did really well! I loved watching her. Then we got ourselves all gussied up for a photo shoot by Flashes of Hope. The salon that does the hair and makeup for the Colts cheerleaders supplied stylists to get us ready. Mickey had her hair curled and a little bit of lip gloss put on. She looked so cute. I had lots of curls and had my make up done. Then Brad and Michael got here and we had our turn in front of the camera. The photographer was great and did several pictures of Mickey by herself and then of each of the rest of us with Mickey, then some family shots and finally some of Brad alone and then with me. We will get the proofs and CD in about 8 weeks. I can't wait to see them! The couple he showed us of Mickey were beautiful! As soon as we were finished with our photo session, I took Brad out for dinner and then to church. I cherish these times I have with him while Mickey's in the hospital. Even though the time is brief, it gives us a chance to catch up a little and spend some one-on-one time. Thanks for your continued prayers for Mickey's healing and for the rest of the family as we do what needs to be done to help her heal. And remember, she loves visitors so feel free to drop by if you're healthy and in the neighborhood.
Tuesday, September 18, 2007 It certainly seems like we take two steps forward and one step back. Mickey was on 50% oxygen last night and was still desatting. We narrowly missed being sent to the ICU since the hem/onc unit can only give a maximum of 50% oxygen. We've talked to the pulmonary docs today and we will be doing everything possible to avoid going to ICU. No one thinks it would be the best for Mickey since she is so healthy (all things being relative). So for tonight she'll be getting nose spray every 4 hours (yeah, that's going to go over great!) and the nurse will come in and reposition her if she gets up to 50% oxygen and still desats. If that happens we will meet with the head of the sleep clinic tomorrow and she will set Mickey up on either a bipap or c-pap, whichever she feels is best for Mickey. After a rather rough night, we went on to have a pretty darned good day. We went to clinic to visit Lexy, one of Mickey's friends, after her spinal. Then Mickey worked with the Riley school teacher and followed that up with activity time in the playroom painting a teddy bear bank. We met with the speech therapist for an extended snack since she missed our lunch time. She said she sees no evidence of Mickey aspirating food or drink so she doesn't see the need for a swallow test. If we continue to have problems we can always request one, but we'll cross that bridge if we come to it. This evening a group of college kids came in to play with the kids and siblings on the unit so the parents could eat a dinner brought in by Champss restaurant. The kids had a great time playing games and decorating shirts. And Michael and I enjoyed some time talking with other parents. So all in all we had a good day even though the night was so rough. While I was typing this update we did the nasal spray. It went a little better than I had expected, but not a lot. We get to do it again at 1:00 AM and 5:00 AM. That oughta be fun in the middle of the night! In case you didn't know, tomorrow is International Talk Like a Pirate Day. Michael brought our Pirates of the Caribbean flag and a sign for our door alerting people of the holiday. I think we'll have some fun with it.
Monday, September 17, 2007 We are seeing some definite improvements now during the day. Last night Mickey still needed a lot of oxygen, but was on 45%, down from 50% the night before. Today she's been on 25% most of the day!! We're trying to get her to wear the nasal canula since she seems to have better sats using that instead of the mask on the same amount of oxygen. She doesn't like it, but is being rather cooperative. Not only are her sats better, but everyone can understand her more. The ID docs came in today and said she definitely has mycoplasma, so we know how to proceed with that. She'll have a 10-day course of Zithromax. She's had 6 days already so we're in the home stretch for this round of meds. They also started her on Prednisone today for 5 days. Yippee. Not! Here we thought we were finished with steroids back in February. Oh, well, if that's what it takes to help clear up her airway, we'll do it. She also had a chest x-ray today to see how her lungs are doing. I haven't heard the official results of that, but should tomorrow morning. The head ID doc said he is a little concerned that she is still requiring so much oxygen, but is hoping the rest of the Zithro and the Prednisone will speed along the healing and get her off the oxygen. He also wants her out of bed more, so we went for several walks around the unit and a couple of wheelchair rides downstairs. She is so happy to be out and about. We also saw a speech therapist today who is evaluating Mickey to see if she is aspirating when she eats and drinks. Just by observing her eating and drinking, she said she does not believe Mickey aspirates, but we will do a swallow test tomorrow if the pulmo docs are seriously concerned. We are still in our private room and it looks like we'll get to stay again tonight. I am still much more relaxed being in here. Michael and Brad came up for a visit and brought dinner to us. Grilled brats and hot dogs with mac and cheese. It was wonderful!!!! We had a great visit and Brad pushed Mickey while we went for a walk around downstairs and to the hospital library. The kids had a wonderful time picking out videos and books for Mickey to bring up to the room. I think that's it for now. Thanks for your continued prayers and feel free to visit us! We love visitors! We're in room 5112.
Sunday, September 16, 2007 Another night of no bipap. Mickey was on 50% oxygen and her sats stayed between 88-90%. Not as high as we'd like them to be, but good enough to get us through the night. Today her sats have been much, much better! Her nurse started weaning her off the oxygen a bit and she's been holding in the mid to high 90's! We've watcher her roller coaster a lot, but are praying she has finally turned a corner. I had Mickey transferred to a private room this afternoon. Already my stress level has dropped several points! Our roommate went home today, but I wanted to transfer so I have a guarantee of one good night's sleep without a roomie. If the unit fills up and someone needs a private room, we could get bumped back to a double, but at least we have tonight. I'm lovin' it!! I hope to have the final word on her diagnosis tomorrow. The final test result came in late last night but I have to talk to the infectious disease docs before I can celebrate. As of now, though, with this final test result it appears she has atypical pneumonia which we will continue to treat with Zithromax till it's gone. Praise God! I will update what the ID docs say tomorrow night.
Saturday, September 15, 2007 Mickey had a great night and got to sleep with her face mask. She fell asleep waiting for the respiratory therapist (RT) and slept for over an hour. Her sat stayed in the low 90's with her face mask while sleeping deeply. For the 2nd night in a row she desatted when they put the bipap on her. Thursday night the RT just increased the flow and let it go at that since it brought her up to the low 90's. Last night the RT called the doc on call and was told to take her off the bipap since she was satting without it. I asked the pulmo doc today how she could desat on it and he said that until kids get used to it, they can actually breathe against the machine. Apparently that's what Mickey was doing. So he said she doesn't have to use the bipap tonight. Mickey was thrilled! It was amazing - she slept till 10:00 this morning since she didn't have that thing on. She had a good day after that. Grandma Deputy came to stay with her for a few hours so I could go to the zoo to see Michael finish his first charity bike ride. Then we hung out and ate the rest of the day. She's doing some painting now and watching the video d'jour. Michael has been riding his bike for a few months for the first time in over 10 years. Today he rode in the Wild Ride for the Indy Zoo. He had a great time and felt really good when he finished. He had no idea I'd be there to see him finish so that was fun! Plus Grandpa Deputy had brought Brad and cousin Sydney to see him finish. So it was a wonderful time. Mickey was bummed that she couldn't go. Next time, baby girl! Mickey amazes me sometimes. She was painting a sun catcher of a frog a couple of minutes ago. She had painted the frog green and then went back and painted the whole thing red. When I asked her why she did that, she said it was because red reminds her of Jesus' blood. Out of the mouths of babes....
Friday, September 14, 2007 We are one step closer to the final diagnosis. One of the tests came back this morning so we wait for the last on to come back. So far everything is pointing to mycoplasma. Mickey is able to be on a little less oxygen so she is showing some improvement. She is acting like she feels much better, so that's a good sign. Last night went better with the bipap. She didn't fight it nearly as long and then she fell asleep around midnight and slept till 8:00. We spent the day hanging out with Michael and playing games and watching movies. The respiratory therapist will be here soon to put her on the bipap so I need to get both of us ready for bed. She's already yawning, so hopefully that's a good sign!
Thursday, September 13, 2007 You know how Mickey said she was going to stay up all night last night and I said no way? Guess what? She did. She wore her bipap without much fuss but didn't go to sleep till 5:00 this morning. I could not believe it!! She slept from then till about 7:30 then dozed off and on till she fell into a deep sleep during her breathing treatment. I put a "do not disturb" on the door and we slept till 11:30. We are still waiting on test results. The ID doctor is hoping the mycoplasma results will be in tomorrow. If not then, we should definitely hear by Saturday. That's about all that happened here today. I'll update tomorrow with some test results hopefully!!
Wednesday, September 12, 2007 Last night was pretty rough. We got some new roommates around 11:00 PM and they were loud. The mom was on the phone off and on till 1:00 AM. Plus Mickey was on 50% oxygen, the max allowed on the hem/onc unit, so I was constantly watching her sats to make sure she wasn't dropping to a point that would buy a ticket to the ICU. Fortunately she maintained her sats well enough and we didn't have to leave. This morning I finally reached my breaking point after the pulmo doc said that Mickey can't leave the room because the nasal canula is not providing enough oxygen for her if she's on it for an extended time. She was not happy. I was not happy. Then the resident came in and said we needed another blood draw because one of the tests he ordered yesterday didn't get done. I called Michael at that point and said, "I need you now!" So he came up as soon as Brad got on the bus. I felt much better having him here. He got her just in time for the needled stick. So we are waiting on the results of all the tests that have been done. She got to spend two hours on a bipap machine. It similar to a CPAP and provides positive pressure through her nose into her lungs. It basically feels like you have lots of air being blown into your nose. Once she settled down her sats were great! Since her lungs responded to it so well, she will be wearing it when she sleeps. She told me a little bit ago that she's just going to stay up all night! :) As Al Borland would say on "Home Improvement", "I don't think so, Tim"! We may have a little struggle on our hands, but I think she'll settle quicker tonight than she did earlier. We met with the infectious disease (ID) doctors today. The CT scan from yesterday and the x-ray from today show that her lungs are actually looking a bit worse. The head of the ID team believes that Mickey has mycoplasma which is an atypical pneumonia. One of the blood tests from yesterday was to test for the mycoplsma antibody so hopefully we'll get the answer tomorrow. If it's not that, then we'll do more tests for less common causes of lung infiltration. Please pray that she has mycroplasma so we can treat it with antibiotics and get outta here! Well, Mickey has the bipap on and I'm trying to lay in bed with her so that's the end of this update. Thanks for your continued prayers!!
Tuesday, September 11, 2007 Greetings from Hotel Riley. Things were crazy around here today, I tell you! It started with the pulmo doc ordering some more tests first thing this morning. He wanted a blood draw to test for histoplasmosis since the CT scan was not conclusive on that regard and he wanted a nasal swab to test for various viruses. (try saying that 5 times fast!) So Mickey endured two of her least favorite things in the world - a needle stick and a wire brush up her nose. I told her she could go downstairs in a wheelchair once those were finished. Well as we were getting ready to go out the door, I saw a sign posted by our door stating that we were in isolation. That meant she could not leave the room. Until they got the results of the nasal swab, they had to assume she might have a virus and therefore would be contagious. She was *really* unhappy being told she couldn't leave the room. But then she had three groups of visitors and that brightened her morning. Then the Riley school teacher came in to work with her and she was really happy. After only 7 hours of isolation, she was released since the nasal swab came back negative. She was dancing her in bed and ready to go NOW! So we went for a ride down to the library for some new movies and books. When we got back we found out she had to have yet another needle stick because the doctors wanted to run some more tests. She did great and was very brave for her 2nd stick of the day. And yes, Mom promised a prize for all she put up with today! Dad and Brad came up for a visit after dinner and she was very happy to see them. The day was finished up with a visit from Grandma Deputy bearing KFC chicken legs. This girl ate like she hadn't eaten in month of Sundays. It was so funny. She kept desatting, though, while she was eating so I had the nurse set up a separate oxygen line she can wear a nasal canula while she eats from now on. It was frustrating for her to eat a couple of bites and then have to put her mask back on. This should be a better way to eat for her. On to some results - her CBC came back perfectly normal. Praise God!!! I already mentioned the nasal swab was negative. So now we wait for the results of today's blood work and a urine test. Please pray that we find out what's going on very soon. This is wearing on all of us.
Monday, September 10, 2007 Are ya'll getting tired of hearing the same ol' thing everyday? Well, today I have something different for you. The pulmo doc ordered a chest x-ray to see how Mickey's lungs are progressing. So we did that first thing this morning. A couple of hours later, the pulmo resident found us in the playroom and said that Mickey was to have an echo done to make sure there's no problem with her heart causing her to require so much oxygen. She was also to have a chest CT scan to determine if she has histoplasmosis. I haven't gotten the results of the tests since they were done later in the afternoon so I hope to hear first thing tomorrow. She's still needing 35-40% oxygen all the time. We can have her off it for short periods while she's awake before her sats begin to drop. She's nowhere near being off it at night. We are getting more aggressive about exercising her lungs. She is walking a lot more now. In fact she made two trips downstairs today. She did not like it at all and was worn out after each trip, but it's good for her. She loves going to the playroom to play "whosball" (foosball) so I have us go the long way around the unit to get there each time. Plus while she's playing, she's standing up and moving around some, so I figure it's all good! We're no closer to knowing a discharge date than we were a few days ago. So I'm going to say it again, if you're local and healthy, feel free to visit. Really. We could use the company! :-) We're in 5126 at Riley. If you can't visit, you can send Mickey an on-line postcard through Riley. Click here to send it. A volunteer prints the postcards out and delivers them to patients. We have a few hanging up on our window. Mickey really enjoys them.
Sunday, September 9, 2007 Still here. That's about it. I did leave last night (hence no update since the update-able computer is here at Riley) for the night. Brad was thrilled to have me home with him and I was very happy to hang out with him. We're still waiting for Mickey's oxygen levels to come up to a safe level. We're trying to be patient, but it's getting difficult. Brad and Michael just called. They went to a Jump 5 concert at church tonight. Michael said there were 300 screaming preteen girls there. But they had a great time and enjoyed themselves. It was a great way to end the weekend and gear up for a new week.
Friday, September 7, 2007 Well, here we sit at Riley still waiting for Mickey's oxygen levels to increase. Pulmonary took over her case since her issues are all pulmo related. The pulmo doc said Mickey needs to go one night with no oxygen before she can go home. So that means we're here till at least Sunday since she's on oxygen tonight. He said it could take a few more days to get her lungs cleared up. The percussions are working and causing her to cough up a lot of the junk in her lungs. She doesn't like it because it hurts, but it's certainly clearing them out. She was glad to be on the portable oxygen today because that meant we could go downstairs for a back to school party. She did a few crafts and had some pizza. Then later we played a game of foos ball in the playroom. Winner got to pick the movie when we got back to the room. She won so we watched "Polar Express". Soon after that was over Michael and Brad arrived. We had a good time hanging out together. Brad and Mickey miss each other enough that they snuggled in her bed for a bit. It was so sweet! She's now down for the night so I'm going to retire to my lovely chair bed for the evening. Thanks for your continued prayers! We truly appreciate them!
Thursday, September 6, 2007 We're still in the big house. Mickey needed increased oxygen last night to keep her sats up. She was on 50% oxygen all night. Then this morning she was napping and started to desat again. So a pulmo doc came in to see her. He heard crackles and gunk in her lungs that the cancer docs were not hearing. So now she's getting percussion treatments along with her breathing treatments. Tomorrow we will go to pulmo clinic for pulmonary functions tests. They said we may have another sleep study at some point once she's way past this pneumonia since there's no real point doing it now while she's sick. So again we wait and see what the night brings. She has agreed to use a nasal canula so we can get a portable oxygen tank and go to the playroom. We spent about 45 minutes there early in the afternoon for music therapy. Then we went back this evening for an art class. Mickey really enjoyed being out of bed and out of the room for a while. This lengthy stay is having an effect on Brad. He's missing Mickey and me quite a bit. Please pray for him. Thanks!
Wednesday, September 5, 2007 Well, last night did not go as I had expected. Mickey's IV clotted around 9:00 and the decision was made to start a new one. Finally around midnight we went into the treatment room and had two unsuccessful attempts to start a new IV. Poor girl was miserable. Based on the lack of IV, the docs switched both of her antibiotics from IV to oral. So that is a step in the right direction. At one point this afternoon Mickey needed 50% oxygen to maintain her sats at 92%. This was a bit alarming so the doctor ordered a chest x-ray. It came back looking a bit better than Saturday's so that was encouraging. Dr. Vik thinks it's just the way her lungs are healing and it's going to take lots of time. We are taking it day by day now. There is a chance we could go home on oxygen, but we'll just wait and see.
Tuesday, September 4, 2007 We're still guests of Hotel Riley. Mickey had a great day today. She was able to go almost 3 hours without her oxygen mask this afternoon/evening before her sats dropped. This was great especially after she needed extra oxygen in the night. We saw Dr. Vik today and he said that she has to have a "good night" before we can go home. So we are betting it will be at least Thursday before we go home. Fortunately Mickey is happy and having fun so the time is passing pleasantly. I picked Brad up from school today and took him for dinner before going back to the hospital. It was so nice spending time with him. I've missed him since I've only seen him for about 15 minutes since Friday evening. We had a good dinner and then did a little shopping so he could pick up a gift for Mickey. After that we headed back to the hospital where he got to spend some time with Mickey before going home with Michael. Mickey is now chilling out watching a movie before bed. Feel free to come visit us. She had a couple of visitors today and really enjoyed them.
Monday Sept 3 We are back up in Hem/Onc! Mickey was able to maintain her sats at 92% with just 40% oxygen all night. She's feeling much better. She started on a clear diet yesterday afternoon and then on regular food this morning. She's a happy camper about that! The ICU staff didn't want to let her leave. They all really enjoyed having a child interact with them the way Mickey did. She charmed them all! I will be continuing the update of our trip here in a bit so watch for those updates. I'll just put them under today's date but it will take a while since I have to narrow down which pictures I'm going to use. Wednesday's Disney update: We slept in a little today since we were up so late
last night. We had
reservations for breakfast at the Polynesian with Lilo, Stitch, Mickey
and Pluto. We had a good
time just getting there. We
took the bus to the Magic Kingdom and then decided to take the boat over
to the Poly. Mickey did not want to ride the boat. At first. Then
she loved it and couldn’t wait to ride it again.
Brad loves Stitch so he was very excited about meeting him.
The kids were in the parade around the restaurant and had a good
time with that. Once
breakfast was over, Brad and Michael rented a MouseBoat, a little
two-person speedboat. They
had a great time with it. While
they were boating, Mickey and I rode the Monorail.
Yep, that’s all we did was ride the Monorail around the Magic
Kingdom/resort loop for 30 minutes.
I was ready to be finished but she was having a great time.
Michael called me when they finished boating and we met up in the
Poly. Mickey was tired and
grumpy and wanted to rest. So
Michael brought her back to the room while Brad and I went
window-shopping at Downtown Disney.
We had fun looking at lots of fun stuff!
Before we knew it our time was up and we needed to head to the
Grand Floridian for dinner with Cinderella, Prince Charming, Suzy and
Perla and Sleeping Beauty. This was not on the kids’ top list of favorite things.
Mickey was coughing pretty badly and Brad is not into princesses.
Michael and I enjoyed the food, however, so there was that!
We took the boat back to the Magic Kingdom and then went for a
Monorail ride since Brad had not been on the Monorail yet this trip.
Finally we were back at the resort for a quick dip in the pool
and then an early bedtime. Mickey’s cough is sounding bad so we’re not sure what’s
up. We may have to make a
quick run to the doctor when we get home Friday if it’s not better by
then. We have decided to
keep her off milk products to see if that makes any difference for the
rest of the trip. Aside
from the cough she’s felt hot a few times (yes I know it’s Florida
and it is hot here!), but since I don’t pack a thermometer I don’t
know if she has a fever or not. Well, we have a very early morning planned since the Magic Kingdom opens an hour early tomorrow. So we’ll be in having fun at 8:00 AM!! Gotta love that!
Thursday's Disney Update Actually, it’s very early Friday morning now. In 12 short hours we will be on the plane back to Indy. Michael and I are still in denial even though we have packed the suitcases and have everything ready to go. We had such a wonderful trip that it’s hard to see it end. But let’s not dwell on that. Instead let’s look back at the wonderful day we had today. We started out very very early this morning to get to the Magic Kingdom for Extra Magic Hours. The park opened at 8:00 today for guests staying on-site so we got in an hour before other people. We were able to ride several rides in that first hour. Over the course of the morning we rode a few more rides and saw lots of characters. Mickey had a “magical moment” when a PhotoPass photographer gave her a set of Tinkerbell pins. These are special pins for this year’s theme, which is “Year of a Million Dreams”. One is for her to keep and the other is to give to someone else. He gave them to her because he remembered her from the Pirate and Princess Party Tuesday evening and could see how much she loved visiting with the princesses. It was great fun to go back and see princesses we’d seen earlier in the week. They all remembered Mickey and were happy to see her. We ate lunch at the Crystal Palace with Winnie the Pooh and Friends. Lunch was much more to the kids’ liking than dinner was last night since it was a buffet and more kid friendly. We all had a good lunch and enjoyed spending time with the characters. (Jackie, both kids told Eeyore that he’s your favorite character!) After lunch it was time for more rides and a visit to the Hall of Presidents. Then we staked out a piece of real estate to wait for the afternoon parade. Again, it was fun to see all the characters and to watch Mickey interact with them even from the sides. I couldn’t see Brad because he was a few people away from me, but he was having fun. That much I know. After the parade we started making sure everyone had done everything they wanted since time was running down. We all did that one last thing whether it was riding a certain ride or visiting a certain Mouse. Finally it was time for the evening parade. We again staked out our spot. I made a final cheeseburger run to Pecos Bill’s and we sat down to enjoy the lights and music of SpectroMagic. It was a great parade! As we were walking to the front of the park, Michael very conveniently needed to take a minute to sit down right in front of Pirates. He said he’d be ready to go in about 10 minutes – just the right amount of time for Brad and me to ride one last time. What a great guy! The fireworks show was going on as we walked on toward Main St. We would have liked to stop, but Mickey doesn’t like fireworks on a normal day and by this point, she really didn’t like them. So we made one last quick stop in a gift shop and headed for the exit. We knew the bus stop would be crowded, but we weren’t prepared for the 2-hour wait! Both kids did remarkably well considering the heat, exhaustion and sheer number of people. We made it back to the room with smiles still on our faces and hopes of planning our next trip. The kids went to bed. Michael and I packed. Michael went to bed and I’m finishing my trip journal. It’s hard to turn the computer off because it means I’m that much closer to the end of this wonderful vacation. But I know all good things must come to an end and I will always have the memories of my kids’ smiles and laughter, of their hands reaching for mine as we walked, of the joy on Michael’s face as he watched the kids’ excitement. Not to mention the 300 or so odd pictures we have! J If you want to see all of them just let me know. I’m sure I could make up a slide show! J (Mickey’s cough seems to have improved some since we have removed milk and other dairy products. She’s still coughing very hard at times, but at least she’s not coughing to the point that she gets sick from it. Hopefully she’ll be right as rain once we’re home.)
Friday Disney (and hospital) Update After a very short night, it was time to get up and do the final packing. It was hard to realize that our time at Disney was over, but we knew it was time to go home. Mickey started coughing almost immediately and didn't stop for almost two hours. She felt awful. Brad and I did our final (yeah right!) souvenir shopping at the hotel before we caught the bus to the airport. We gave Mickey some Advil and she started to perk up. We had lunch and did our real final shopping at the Disney store at the airport. Both kids had a great flight. When Grandpa Deputy picked us up at the Indy airport both kids said how good it was to be home. We had been in contact with our family doctor via Michael's mom and were told to take Mickey to Prompt Care at our local hospital since the doctor's office wasn't seeing any more patients at that point. So we dropped off suitcases and Mickey and I took off for the hospital. We were taken right into the ER since Mickey's oxygen saturation was only 88%. We spent 7 hours in the ER before finally being admitted and taken to the pediatric floor. Mickey was put on oxygen to bring her sats up. After two hours of increasing her oxygen, the decision was made to transfer her to Riley since our local hospital doesn't have a pediatric ICU and they aren't comfortable giving as much oxygen as Mickey was requiring. So we took an ambulance ride at 3:00 AM Saturday. We stayed in the ER at Riley till around 8:30 Saturday morning at which point we were transferred to the Hem/Onc unit. We lasted there for about 5 hours before Mickey was sent down to the PICU. She was requiring 50% oxygen and that's the limit of what the Hem/Onc unit will do. Being sent to the PICU was a precautionary measure in case Mickey needed more oxygen or other intervention. Turns out it was a good move since she needed 80% oxygen Saturday night to maintain her saturation at 92%. Most of Sunday she was on 50% oxygen during the day. She was weaned down to 40% by evening and was able to maintain at the level. She was sent back to Hem/Onc Monday afternoon since she's been holding steady on the O2 levels. If she has her oxygen mask off for more than a couple of minutes her sats drop below 92% which is the minimum the docs want to see. I have no idea when we'll get out. I had hoped tomorrow, but I don't think that will happen since she's still dependent on the oxygen. Since we are back in hem/onc, I can use the computer in the room and will be able to daily updates. Thanks for your continued prayers for Mickey. We truly appreciate them!
Sunday Sept 2 We interrupt this trip report for an important announcement. Mickey was admitted to Riley late Friday (actually very early Saturday) for pneumonia. She is currently in ICU due to the high amount of oxygen she is needing. She had started feeling poorly on our trip and got progressively worse. We landed around 3:00 PM on Friday and headed straight to St. Francis ER. They admitted her to the pediatric unit and we stayed there for 2 hours until her oxygen requirements were higher than they are comfortable with since they don't have a peds ICU. So we came to Riley and were admitted to the Hem/Onc unit since that is where we normally are even though her illness is not cancer related. Yesterday afternoon her oxygen needs were increasing and the decision was made to transfer her to the PICU. Last night she was needing a great deal of oxygen while sleeping. Today she is maintaining her oxygen levels better when she is awake than she was yesterday. She is on two different IV antibiotics and so they are hopefully starting to work. I anticipate being in ICU again tonight. I have no idea when we'll go home. She is in a good mood and feeling well for the most part. If you are local and healthy, feel free to visit. Just ask at the front desk since I don't know when we'll be moved back up to Hem/Onc. Thanks in advance for your prayers!!
Tuesday, August 28 We started today off early since we had a big day planned. Once again we had breakfast in the room and then were out the door on the way to MGM Studios to be there when it opened. Top priority was Star Tours so we made a beeline for that ride. Brad and Michael were able to walk right on. Brad loved it! After Star Tours we went to meet the Power Rangers. The character handlers saw Mickey’s birthday button and asked if she and Brad wanted to be honorary Power Rangers. Of course they said YES! So when the Power Rangers were getting back into their Power RangerMobile to leave the area, Mickey and Brad were able to get in with them for a group picture. They both loved that! Then it was time to split up for a while. Mickey wanted to see Beauty and the Beast while Brad wanted to go on the Backlot Tour. We met up again at the big hat to watch the High School Musical Pep Rally. The kids loved the music and dancing. It was a fun show. After the Pep Rally it was time for our reservations at the Sci Fi Dine In. This is a fun restaurant where you sit in replicas of old convertibles and watch clips of old sci fi movies as if you were in a drive in theater. Michael and I enjoyed it; the kids not so much. Mickey was scared because it was rather dark and she didn’t like the movie clips. Brad got bored because they play the same set of clips and we were there long enough to see them all and half way through the next showing. After lunch Brad and I rode Star Tours and then we headed back to our hotel. I had forgotten our tickets to the Pirate and Princess Party so we needed to get those plus it seemed like a good time to rest for a bit. Mickey has developed a pretty nasty cough that we think is due, in part, to the heat and humidity. So some time in the A/C sounded good.
Monday August 27, 2007 Believe it or not, today was even more incredible than yesterday! We got an early start, ate breakfast in the room and were at the Magic Kingdom before they opened. As soon as we got the stroller taken care of, we were on our way to Fantasyland. Both kids had things they wanted to do here so it was a great place to start. Within the first hour, we had ridden several rides. When Michael and Brad were leaving It’s a Small World, they were given Dream Fastpasses. These are special badges that allow the recipient to go through the Fastpass line on certain attractions without having to use a traditional Fastpass. In other words, it was way cool!! While they were off doing some guy stuff, Mickey and I decided to ride the carousel with an old friend by the name of Mary Poppins! Mickey was so excited to be on the horse right in front of Mary. It was great and it got her into character mode. (One thing I forgot to mention yesterday is that when I booked the trip last spring, I mentioned that we were using this trip to celebrate the kids’ birthdays and Mickey’s finishing chemo. When I checked in I was given birthday buttons for both kids to wear. Brad didn’t want to wear his, but Mickey has worn hers the whole time and is loving all the birthday wishes.) So anyway, after meeting Mary, Mickey and I were off to ToonTown to meet some characters there. A cast member overheard me telling Mickey that we’d need to wait in line to see the Princesses and told me that we didn’t need to. She allowed us to go through the exit and go through all three rooms without waiting in each line. That was incredible because it saved us well over hour of waiting. Mickey got to see a bunch of her favorite characters and loved all the hugs and “Happy Birthdays” she got. Then we met up with the guys and went over and met the big cheese himself. Mickey and Mickey were very happy to see each other! Throughout the day Mickey also met Alice and the Mad Hatter, Peter Pan, the Genie from Aladdin, Pluto, Minnie Mouse, Daisy and Donald, Goofy, Chip and Dale, Snow White, Belle, Cinderella, Aurora, Captain Hook and Mr. Smee. At some point during the morning, Michael and I took turns riding the Tea Cups with Brad. It was fun, but not something I’m anxious to do again. We had an overall wonderful morning riding rides and meeting characters. We had lunch at the Plaza Restaurant. It was very good food and we all left stuffed. Michael thought it should be naptime once lunch was over. But, alas, more rides were calling our names. Michael wanted to ride Big Thunder Mountain Railroad since the last time he had ridden it was in high school. So he and I took turns riding that, Splash Mountain, and Space Mountain. Brad took turns riding Pirates of the Caribbean with Michael and me. When he and I rode it, the ride had some technical difficulties and we were stuck inside for about 15 minutes. We listened to a bunch of pirates singing “Yo ho, yo ho! A pirate’s life for me” over and over the whole time! On the upside, though, the new Jack Sparrow additions are incredible! He is so lifelike! I hadn’t ridden Pirates since I was around Mickey’s age, so it was fun to see how the ride had changed. All in all, the afternoon was nearly as good as the morning. The heat was starting to get to us, though, so we decided to call it a day a little early and head back to the resort. We had dinner and then finally hit the pool. That was what the kids had been waiting for. They had a blast! We had to cut swimming short because we have a very long day planned for tomorrow and wanted to get the kids to sleep at a decent time. Tomorrow will bring MGM in the morning followed by the Pirate and Princess Party in the evening. I can’t wait!
Sunday August 26, 2007 After a brief sleep, we were up and out the door by 4:30 this morning. Our 7:00 AM Airtran flight was on time and soon we were on our way to Orlando. We landed after a nice calm flight and found our way to Disney’s Magical Express check in desk. We hopped on the motor coach and were off to our resort. We had a quick snack in the resort food court. Brad and Mickey loved the cinnamon rolls! Then Michael took the kids to play on the playground while I took care of business. Since it was only around 10:00 AM, our room wasn’t ready but I was able to do a pre-check in and got everything except our room number. With tickets in hand, we hopped on another bus and were off to Epcot. We had originally planned to spend today exploring the resort, swimming, settling in, etc. But Brad mentioned some specific things he’d like to do at Epcot if we were going there so we decided to add another day to our park tickets and go there today. We are sure glad we listened to him!! We got off to a rough start with Mickey not wanting to walk at all, even from the bus to the front gates. But once we got a stroller for her we were able to start enjoying the day. The park wasn’t too crowded but two of the things Brad wanted to do had some major wait times listed so we got FastPasses for those and went to The Seas with Nemo while waiting for our return times for Soarin’ and Test Track. Mickey wanted nothing to do with riding the Nemo ride, so she and I walked around and looked at the aquariums while Michael and Brad rode. Then t |
