First, the good....then the not so good, then the bad.
The Good-The music festival at Daybreak on Saturday was awesome. My kids and I were lucky enough to spend the whole day there together, and we had a blast. The stuff that was donated for the silent auction and the raffle was so nice, at one point Abby even asked if she could enter the raffle for one of the prizes. Those of you that won were pretty lucky, I hope you think it was well worth it. The music was incredible!! Every band that played was good, I only got a little nervous when I thought my dad was going to go up on stage and take over the mic, he just wanted to be a part of it, he was loving the song selection too much. For more info on some of the music that was there visit http://www.rodjost.com/. The games for the kids were great too!! Nothing better than watching Brock, Britt, and Abby doing the "cookie walk" and the fish pond. But my favorite part of the day was just being there with my friends and family. At one point, my cousin's wife said it best when she said that she isn't glad that this had to happen to us, but so much good has come out of it, there have been so many benefits; and I have to agree. I have loved reconnecting with my cousins and their families and my aunts and uncles, and I don't know if we would have done this without going through the past 4 months. Thank you Robb and Melissa, you spent so much time on this day, I hope it was just how you wanted it to be. Thanks to the rest of you that helped as well, there were so many of you helping, I don't dare list names or I know I'll forget someone. Thanks to the bands that played and to all of you that showed up to support us. It was an all-around great day!!
The Not-So-Good- Abby had clinic this morning, and it wasn't our perfect clinic that we're used to. First, her blood pressure was high, it hasn't been high since the transplant. Then her white blood count was only 1200, it's supposed to be 1,500, so she's at a higher risk of becoming sick. Therefore, back to being extremely careful around people-we're keeping her isolated this week. I guess I'll be even more germ-concious this week!! Probably seeing the movie Contagion wasn't the best thing we did last week, I was already a germ freak, now I'm even more paranoid. Abby's renal level was also high-probably due to the steroid decrease last week. And last, her Prograf level was a 17.5 which is way high. I haven't ever mentioned this number before because Abby's has always been right on, until today. Prograf helps to prevent rejection in her heart. Each time we go to clinic they test her level, today it was high, so....we are supposed to be watching for Abby to get the shakes, a headache, an upset stomach, a fever, the chills, etc. If any of these come up, we have to call the transplant team and decide what to do from there. None of these things are too major, just little things that we didn't really want to come up the week before we hopefully get to move home. We just need to be very watchful this week and hope for the best. I was told that when you have something big planned is just when something always happens, and sure enough it did. Monday is the big cath/biopsy day. I'm a little nervous after everything that happened today, but were thinking all will be perfect again. I guess we need to expect some bumps along the way.
The Bad-One of our best little heart friends, Kaidence and her mom, got some bad news after her cath today and really need some prayers sent their way. We've personally seen the power of prayer this past 4 months. Her blog is 4mykaidence.blogspot.com if you want to read her story. Incredible story, incredible mom, incredible little girl. We've become really close with this family and they've helped us so much this past 4 months, Shauntelle has always been there for me, and now it's our turn to help them. Try to include little Kaidence and her family in your prayers if you can. We love you Shauntelle and Kaidence...hang in there.
Monday, September 26, 2011
Sunday, September 25, 2011
Mustangs, Music Festival, Football Game, and Zumba pictures
Photo shoot for abby to advertise for the Tuacahn Mustang Car Show in April
Music Festival at Daybreak... good music, good raffle, good people, good fun.. thanks everyone involved
Friday, September 23, 2011
Fears and Happiness
I had an interesting conversation with a good friend yesterday. She asked me how I was doing, and of course I gave my favorite standard response again, "I'm good," then I tried to change the subject...."How about you?" But she didn't let me off the hook that easily, she was just curious about what it was like to instantly have a child with a serious medical condition, when everything used to be perfectly normal. I think she was just curious about my overall state of mind. It took some serious thought on my part. Honestly, It had been a long time since I had thought about how I was doing emotionally, we have just been going through the motions, just living the day-to-day. After thinking about it, I decided that I really am fairly okay right now. It's just a complete shift of thinking. There are some things I'm still pretty hung up on......I don't ever leave Abby alone, that scares me too much, I'm obsessed with making sure she gets her meds and that she gets them exactly on time, I'm also a little OCD about her vitals-we're supposed to check them twice a day, and we do, not matter what, and if they're off at all, we check them again a little later just to make sure they are okay. I am also constantly checking on Brittany and Brock, I like to make sure they're alright. This is probably driving them both crazy since they are teenagers, but I'm still just a little paranoid right now. I'm now a major germ freak. I'm constantly using hand sanitizer and making the people around me use it too. I think in church last Sunday, we sanitized at least 4 times during sacrament meeting. Every week when I go to PCMC I stop by the pharmacy and buy some Avagard, I can't help it, it's a habit now. I'm also going through tons of Lysol wipes every day.....thank goodness for Costco, I just have to have things be clean. We can't get sick!!!
But to me, these are all just little things. For the most part, I think we are recovering. Every once in a while I even get a glimpse of the old, carefree, fun Michelle. Maybe..... hopefully, I'll get back to that someday. I do have 2 major fears that are constantly in the back of my mind. The first one is that we are going to get all moved back into our house, back to work and back to school and feeling like normal people again, and then something is going to happen and we are going to end up back at PCMC. I don't know if I feel this way because it's hard to believe we will ever really be "normal" again, or if I'm scared to take Abby's ease with all of this for granted, or maybe I've heard too many stories about kids with heart issues that are always ending up back in the hospital-I know there are so many things that can still go wrong, or because it just seems to soon to be back home.....only 4 1/2 months after this all started....not even 3 months since the transplant. Whatever the reason, it's a constant source of worry for me. I tell myself to just let things happen, I have so much faith that things will happen how they should happen for us, but it's still back there in my mind.
My other my other fear is going back to school and teaching again. This is a strange fear for me because I've been teaching for 12 years, but I'm more nervous to go back then any year....ever. I haven't been able to think about teaching, at all, since May 18th, and I feel so out of it. I've been so focused on Abby and my other kids and making sure they're okay, that I haven't allowed my mind to go anywhere else and I'm not sure how to find room in there to think about being a good teacher again too. Teaching isn't a job that you show up for work and then go home and don't think about it anymore. I'm always thinking about what can I do better, how can I help them understand this concept, what am I going to do tomorrow so they "get it," how can I be a better teacher for a certain student, etc. I used to be able to really focus on being a good teacher, and I'm scared that I won't be able to anymore, I'm scared I've lost that focus and I won't be able to be a good teacher again. What if I get in the classroom and I'm just a stress case and can't keep track of things? what if I can't deal with the new math curriculum I'm supposed to be teaching this year? What if I can't even focus enough to learn all of my students' names and their needs? What if I have to go back up to Salt Lake because something happens? What if something happens to Abby again and I'm at the school with her this time? What if I get sick and can't miss because I don't have any sick days left? What if I can't remember how to be organized and I'm just a mess now? what if my end-of-level test scores go way down this year? I know it's not good to play the "what if" game, and it drives a couple of my close friends crazy when I do it, but I like to think ahead and try to be prepared for any situation. I have about 1 1/2 months to get prepared to go back, and I think I really need this time. I'm really hoping that I'll get back in the classroom and it will just feel natural again, that it will just feel right, but who knows? I guess only time will tell.
Overall, we are doing okay. We find joy in a lot of the little things now, we didn't use to do this. We are happy to just be together as a family whenever we can, we are happy to have 5 whole days in St. George, we are happy to go out to lunch or get ice cream with friends, we are happy to go running-even if it's only a little bit. It makes us happy to see people wearing Team Doman shirts, or to sit outside in the sun and read a book, or to have people that I never really knew come up and tell us how the blog has helped to change their life in so many ways. It makes us happy to hear when our "heart friends" are having successes, or when we hear of another child receiving a heart. It makes us happy to look back on so many sweet memories we have of the past 4 months, and to look at all of the relationships that have been formed or renewed or enriched because of what we've been going through. We are just happy that Abby is alive and improving every day, her life is a miracle.
But to me, these are all just little things. For the most part, I think we are recovering. Every once in a while I even get a glimpse of the old, carefree, fun Michelle. Maybe..... hopefully, I'll get back to that someday. I do have 2 major fears that are constantly in the back of my mind. The first one is that we are going to get all moved back into our house, back to work and back to school and feeling like normal people again, and then something is going to happen and we are going to end up back at PCMC. I don't know if I feel this way because it's hard to believe we will ever really be "normal" again, or if I'm scared to take Abby's ease with all of this for granted, or maybe I've heard too many stories about kids with heart issues that are always ending up back in the hospital-I know there are so many things that can still go wrong, or because it just seems to soon to be back home.....only 4 1/2 months after this all started....not even 3 months since the transplant. Whatever the reason, it's a constant source of worry for me. I tell myself to just let things happen, I have so much faith that things will happen how they should happen for us, but it's still back there in my mind.
My other my other fear is going back to school and teaching again. This is a strange fear for me because I've been teaching for 12 years, but I'm more nervous to go back then any year....ever. I haven't been able to think about teaching, at all, since May 18th, and I feel so out of it. I've been so focused on Abby and my other kids and making sure they're okay, that I haven't allowed my mind to go anywhere else and I'm not sure how to find room in there to think about being a good teacher again too. Teaching isn't a job that you show up for work and then go home and don't think about it anymore. I'm always thinking about what can I do better, how can I help them understand this concept, what am I going to do tomorrow so they "get it," how can I be a better teacher for a certain student, etc. I used to be able to really focus on being a good teacher, and I'm scared that I won't be able to anymore, I'm scared I've lost that focus and I won't be able to be a good teacher again. What if I get in the classroom and I'm just a stress case and can't keep track of things? what if I can't deal with the new math curriculum I'm supposed to be teaching this year? What if I can't even focus enough to learn all of my students' names and their needs? What if I have to go back up to Salt Lake because something happens? What if something happens to Abby again and I'm at the school with her this time? What if I get sick and can't miss because I don't have any sick days left? What if I can't remember how to be organized and I'm just a mess now? what if my end-of-level test scores go way down this year? I know it's not good to play the "what if" game, and it drives a couple of my close friends crazy when I do it, but I like to think ahead and try to be prepared for any situation. I have about 1 1/2 months to get prepared to go back, and I think I really need this time. I'm really hoping that I'll get back in the classroom and it will just feel natural again, that it will just feel right, but who knows? I guess only time will tell.
Overall, we are doing okay. We find joy in a lot of the little things now, we didn't use to do this. We are happy to just be together as a family whenever we can, we are happy to have 5 whole days in St. George, we are happy to go out to lunch or get ice cream with friends, we are happy to go running-even if it's only a little bit. It makes us happy to see people wearing Team Doman shirts, or to sit outside in the sun and read a book, or to have people that I never really knew come up and tell us how the blog has helped to change their life in so many ways. It makes us happy to hear when our "heart friends" are having successes, or when we hear of another child receiving a heart. It makes us happy to look back on so many sweet memories we have of the past 4 months, and to look at all of the relationships that have been formed or renewed or enriched because of what we've been going through. We are just happy that Abby is alive and improving every day, her life is a miracle.
Tuesday, September 20, 2011
5 days in St. George and still another list of Thank you's!!
Yes, we are back in St. George! We left for Salt Lake on Sunday night, went to Abby's clinic appointment on Monday, and then jumped back in the car and came right back to St. George. We will be here until Saturday morning and then we are headed back up there again. Lots and lots of driving, but lots and lots of fun too!
Our 5 days in St. George last week was just awesome. We were able to do things like take Brock friends and the girls to ice cream, visit with friends at the jv Desert Hills game (thanks for the Desert Hills "bling" Tracy-love it!"), go out for my birthday, swim with the 5 am "shut up and swim" group, watch Desert Hills beat Pine View (Sweet game, Brock-you're awesome), let Abby hang out with friends (much needed, she's getting sick of me!), go to church, Have a Utah/BYU party and see the Utes stomp all over BYU (yes, this was fun, actually funny too, a real highlight of our weekend!), roast marshmallows with the kiddos and their friends, and attend two amazing events that took place for Abby.
The first was the 7th grade boys football teams. They played in honor of Abby, wore red bands on their legs, spray painted "A D" in red on their arms, had a donation box for Abby, and honored her in between their two games. They gave Abby a #12 Desert Hills jersey to wear (12 for July 12th which is when Abby received her heart!), and a thunder necklace. Abby loved walking out on the field with all of the boys and getting her picture taken with them. Thank you, Erin, for thinking about us and putting all this together for Abby. We loved it and appreciate it....and both teams won too!!! The second event was at Zumba Warehouse. I can't believe how many people showed up and how happy everyone was when we got there. It just looked like everyone was having fun! Thank you Raelee for organizing this, and thank you to all of you that went and did Zumba for Abby, I think it was a huge success!! I will post pictures of both events later today.
I also have a couple more thank you's I need to give today. First to the girls from Sunrise Ridge that had a bake sale for Abby last weekend, thank you, you are the best!!.....and the anonymous person that dropped off money for us at the bake sale....WOW!! A thank you isn't even enough, we appreciate you. I also want to thank everyone that has donated through the paypal link at the top of the blog. I had forgotten about this because I didn't set it up and I'm not in charge of it, but when I found out how much has been donated, I felt so ungrateful. I hadn't thanked any of you. Then I tried to find out who the people are so I could personally thank them, but there were many people that I don't even know. I've said this before, but it needs to be said again, people are naturally good and want to help others. We are so grateful for all of you, it's been 4 months now since we ended up in Salt Lake and there are still things happening for us. It's just an incredible feeling.
For those of you in Salt Lake that have been wanting to do something to help, you have the chance this weekend. On Saturday from 2:00-8:00 is the music festival at Soda Row in Daybreak, Just west of Bangerter Highway on 11400 South. My cousin Robb and his wife Melissa have spent lots of time on this and it's going to be awesome. My kids and I are planning on spending the whole day there. There will be Team Doman shirts and wristbands, music-many bands will be performing, raffles, games for kids, and lots of good company, we would love to see all of you there. Robb and Melissa-you are the best, thank you so much, we can't wait!! I added some information at the bottom of this post.
As for Abby's clinic appointment yesterday, it was perfect again. Last night Abby was oxygen free for the first time since May 18th. Her echo couldn't look better and she's feeling good. The plan is still in action.... Clinic next Monday, Cath/biopsy on the 3rd, move back to our house in St. George on October 4th. We are getting close, it has been a long, hard 4 months, but we're finally getting close!! I probably won't be updating the blog as much, I just don't have much to say.....I know that's hard to believe! But we will keep you posted at least once a week. Thank you everyone for all of your support and love, we are one lucky family.
Our 5 days in St. George last week was just awesome. We were able to do things like take Brock friends and the girls to ice cream, visit with friends at the jv Desert Hills game (thanks for the Desert Hills "bling" Tracy-love it!"), go out for my birthday, swim with the 5 am "shut up and swim" group, watch Desert Hills beat Pine View (Sweet game, Brock-you're awesome), let Abby hang out with friends (much needed, she's getting sick of me!), go to church, Have a Utah/BYU party and see the Utes stomp all over BYU (yes, this was fun, actually funny too, a real highlight of our weekend!), roast marshmallows with the kiddos and their friends, and attend two amazing events that took place for Abby.
The first was the 7th grade boys football teams. They played in honor of Abby, wore red bands on their legs, spray painted "A D" in red on their arms, had a donation box for Abby, and honored her in between their two games. They gave Abby a #12 Desert Hills jersey to wear (12 for July 12th which is when Abby received her heart!), and a thunder necklace. Abby loved walking out on the field with all of the boys and getting her picture taken with them. Thank you, Erin, for thinking about us and putting all this together for Abby. We loved it and appreciate it....and both teams won too!!! The second event was at Zumba Warehouse. I can't believe how many people showed up and how happy everyone was when we got there. It just looked like everyone was having fun! Thank you Raelee for organizing this, and thank you to all of you that went and did Zumba for Abby, I think it was a huge success!! I will post pictures of both events later today.
I also have a couple more thank you's I need to give today. First to the girls from Sunrise Ridge that had a bake sale for Abby last weekend, thank you, you are the best!!.....and the anonymous person that dropped off money for us at the bake sale....WOW!! A thank you isn't even enough, we appreciate you. I also want to thank everyone that has donated through the paypal link at the top of the blog. I had forgotten about this because I didn't set it up and I'm not in charge of it, but when I found out how much has been donated, I felt so ungrateful. I hadn't thanked any of you. Then I tried to find out who the people are so I could personally thank them, but there were many people that I don't even know. I've said this before, but it needs to be said again, people are naturally good and want to help others. We are so grateful for all of you, it's been 4 months now since we ended up in Salt Lake and there are still things happening for us. It's just an incredible feeling.
For those of you in Salt Lake that have been wanting to do something to help, you have the chance this weekend. On Saturday from 2:00-8:00 is the music festival at Soda Row in Daybreak, Just west of Bangerter Highway on 11400 South. My cousin Robb and his wife Melissa have spent lots of time on this and it's going to be awesome. My kids and I are planning on spending the whole day there. There will be Team Doman shirts and wristbands, music-many bands will be performing, raffles, games for kids, and lots of good company, we would love to see all of you there. Robb and Melissa-you are the best, thank you so much, we can't wait!! I added some information at the bottom of this post.
As for Abby's clinic appointment yesterday, it was perfect again. Last night Abby was oxygen free for the first time since May 18th. Her echo couldn't look better and she's feeling good. The plan is still in action.... Clinic next Monday, Cath/biopsy on the 3rd, move back to our house in St. George on October 4th. We are getting close, it has been a long, hard 4 months, but we're finally getting close!! I probably won't be updating the blog as much, I just don't have much to say.....I know that's hard to believe! But we will keep you posted at least once a week. Thank you everyone for all of your support and love, we are one lucky family.
Wednesday, September 14, 2011
Abby's stress test and wow, what a year!!!
Have I ever mentioned how amazing I think Abby is? Less than 4 months after collapsing in PE, and only 2 months after getting her new heart, she was able to perform a stress test on the treadmill.....and it was her choice to do it. It reminded me of her first year playing soccer. She was this cute, but tough little 4-year-old kid. She was playing in a soccer game and at half time they decided to call the game because it was raining....hard, it was like a major downpour, and it was cold too. When Abby heard they were stopping the game, she started freaking out! She was so mad, she couldn't believe they would ever make them stop playing and especially when they were losing, she was not okay with it. She threw a little fit right there on the field and refused to leave. I had to pick her up and haul her off the field....and do you think she got over it??? NO, we had to hear about all day long!!! This determination she had when she was just a little kid is what has helped her be as successful through all of this as she has, she's tough and she's a fighter. They wouldn't let me stay in the room with her through the treadmill test, they said kids will work harder without parents being there-that's easy for me to understand after coaching swimming for so many years. So, I left and wandered around, pacing for 40 minutes. When they opened the door, Abby had a huge grin on her face. She said, "I ran.....it felt good!" She said that her legs got tired fast, I think they're pretty weak from not doing much for the last 4 months, but that her heart felt great. She also said that she could actually breathe now. She said that she would have started breathing hard after about 3 minutes before her heart transplant, but she didn't ever really start breathing hard during the test at all. I just think that would be the most awesome feeling ever, she never really knew what running is supposed to feel like until yesterday! Just wait until she's in good shape, she will feel like a superstar!!! Dr. Everitt said that everything looked good, no problems whatsoever! To me, it was just another miracle.
I have to thank everyone for all of the birthday wishes today! It was fun to receive so many texts, emails, phone calls, facebook messages, etc. I definitely felt loved today! I think I'm pretty certain that I will have an easier this year than I did last year. All of our troubles started right after my 40th birthday last year, you know when they say that after you turn 40 everything just goes downhill..... they weren't kidding!!! Hardest year of my life??? By far, there's no comparison; but also the most rewarding too. We spent 4 months living away from home, Britt had 3 knee surgeries, we had financial struggles because of the surgery, I started a new job, and then everything with Abby's heart; but, I've also met so many great new people, made many new friends, had the opportunity to reconnect with many old friends and family, watched my testimony grow, strengthened my family, learned to rely on people, learned everything I could ever want to know about nursing, being a pharmacist, the human heart, and organ donation, listen to Abby's story about the day she died, become close with many people-I consider them family now, be on the news many times (not my favorite, but I had to include it), have the opportunity to see the good in people and how they really want to help, watch a community come together for a sick little girl, recieve the greatest gift that can be given (Abby's new heart), memorize the road signs from Salt Lake to St. George, wear the same bag of clothes for 4 months, and be a part of a multitude of miracles. How can I complain at all about this past year when I have all of these experiences?? I honestly don't think I'd trade it for anything. We also got to be home and together for my birthday, that's all I wanted.
The plan now is to head back to Salt Lake on Sunday night for clinic Monday and then come back to St. George again on Tuesday. We will do this for the next 3 weeks-other than September 24, when all of us are going to go to Salt Lake for the music festival at Daybreak-can't miss that!!! We are going to be optimistic and be moved home on October 1st-remember when we were hoping for Christmas??? Then on October 3rd, Abby has her next cath/biopsy. If things look good then, the transplant team gave us the okay to move back, but we're just going to count on it and move back the weekend before anyway. If things don't look okay and we need to stick around Salt Lake, we'll just have to stay with my brother, he already said that would be great, but we're still just planning on a perfect biopsy. Abby cannot get sick between now and then. There are a lot of people that are sick right now, so please, please stay away if you're sick or if you've been around sick people. We just can't do it now....we have a plan and we want to stick to it.
Things couldn't be looking better for us right now, Abby is feeling great and we're getting so close to being able to move home. Life is good.
I have to thank everyone for all of the birthday wishes today! It was fun to receive so many texts, emails, phone calls, facebook messages, etc. I definitely felt loved today! I think I'm pretty certain that I will have an easier this year than I did last year. All of our troubles started right after my 40th birthday last year, you know when they say that after you turn 40 everything just goes downhill..... they weren't kidding!!! Hardest year of my life??? By far, there's no comparison; but also the most rewarding too. We spent 4 months living away from home, Britt had 3 knee surgeries, we had financial struggles because of the surgery, I started a new job, and then everything with Abby's heart; but, I've also met so many great new people, made many new friends, had the opportunity to reconnect with many old friends and family, watched my testimony grow, strengthened my family, learned to rely on people, learned everything I could ever want to know about nursing, being a pharmacist, the human heart, and organ donation, listen to Abby's story about the day she died, become close with many people-I consider them family now, be on the news many times (not my favorite, but I had to include it), have the opportunity to see the good in people and how they really want to help, watch a community come together for a sick little girl, recieve the greatest gift that can be given (Abby's new heart), memorize the road signs from Salt Lake to St. George, wear the same bag of clothes for 4 months, and be a part of a multitude of miracles. How can I complain at all about this past year when I have all of these experiences?? I honestly don't think I'd trade it for anything. We also got to be home and together for my birthday, that's all I wanted.
The plan now is to head back to Salt Lake on Sunday night for clinic Monday and then come back to St. George again on Tuesday. We will do this for the next 3 weeks-other than September 24, when all of us are going to go to Salt Lake for the music festival at Daybreak-can't miss that!!! We are going to be optimistic and be moved home on October 1st-remember when we were hoping for Christmas??? Then on October 3rd, Abby has her next cath/biopsy. If things look good then, the transplant team gave us the okay to move back, but we're just going to count on it and move back the weekend before anyway. If things don't look okay and we need to stick around Salt Lake, we'll just have to stay with my brother, he already said that would be great, but we're still just planning on a perfect biopsy. Abby cannot get sick between now and then. There are a lot of people that are sick right now, so please, please stay away if you're sick or if you've been around sick people. We just can't do it now....we have a plan and we want to stick to it.
Things couldn't be looking better for us right now, Abby is feeling great and we're getting so close to being able to move home. Life is good.
Monday, September 12, 2011
Sorry if I made anyone feel bad yesterday
I think I need to try to clarify some of the things I said in my last blog. I was not talking about anyone specifically in the section about friends. I have the greatest friends and people supporting us in the world. I came back to Salt Lake last week feeling that I just didn't have the connections with people that I used to have because I'm not able to spend the time with them. I went to relief society for the first time in a long time, and it was awesome, but I just felt so out of touch....same with when I'm with everyone else. Abby is experiencing the same kind of thing. Anyone that's moved knows just how we feel. The reason that I'm excited to move back is so that I can start to feel that connection with people again. We're not in Salt Lake long enough to hang out with people here, and when I'm home I like to spend as much time with my kids as possible. It's just very in between but only for a few more weeks. I'm sorry if any of you took it personally, it wasn't my intention at all. That is just one of the reasons that I'm so ready to move home. We have had the greatest support in the world, everyone knows that, we would never take it for granted.
Abby's clinic visit today went perfectly, no problems. She is still on schedule for her exercise test tomorrow at 12:30, she's way excited.....me, not so much. Abby has a biopsy/cath scheduled for October 3rd, 2 weeks after she comes down on her prednisone. This will determine whether or not we will be moving home the beginning of October or if they will want us to stay here for little longer so they can watch her more closesly.
Abby's clinic visit today went perfectly, no problems. She is still on schedule for her exercise test tomorrow at 12:30, she's way excited.....me, not so much. Abby has a biopsy/cath scheduled for October 3rd, 2 weeks after she comes down on her prednisone. This will determine whether or not we will be moving home the beginning of October or if they will want us to stay here for little longer so they can watch her more closesly.
Sunday, September 11, 2011
"Michelle, why do you want to move home so bad?"
The question of the week was, "Michelle, why do you want to go home so bad?? what do you expect things will be like when you get there?? Do you think things will be "normal" again?"
No, I don't think things will be like our old "normal," but I think we can make a new "normal" that's even better than the old. Here are some other reasons I want to move home:
-My kids need me. We all love the few days each week that we get to spend together, but it's not enough. We need to be together all the time, in our house, with our dogs and our stuff. It's critical that we get there as soon as possible. I used to think we were a really strong family, but I'm starting to worry, we need to move back....soon.
-I need to get back to 5 am workouts. I can't do it now because I don't like to leave Abby alone, but when we are home, both Britt and Brock will be there in the mornings. I'm getting fat again! I worked so hard a few years back to lose all that weight, and it's slowly creeping back on. I need to spend some time worrying about and taking care of myself again. I can't do that when we are in Salt Lake. All the traveling wears me out, and I'm feeling lazy and gross....just not taking care of myself at all. That needs to change.
-I've got all of the things to do at home and in my classroom that I had saved for summer break and then was never able to do them because we were life flighted on May 18th. I always have a list of things that need to get done over summer break, I never got to my list and it's been driving me crazy!! I'm pretty sure I left everything a big, unorganized mess! That's not okay!
-I want my dogs, I miss them and the kids do too. I know they're happy where they are and probably don't ever think about us, but we need them. There's nothing better than to always have someone wagging their tail and running around in pure joy evertime you walk through the door. I miss that, we need our dogs.
-When we're living in both St. George and Salt Lake and are never in one place very long, it's hard to maintain relationships with friends and family, I can quickly feel them slipping. We're still here dealing with things, while everyone else is getting back to their lives. Abby and I have spent lots of time talking about this and preparing for it. We knew that people that were very interested in us and what we were doing would eventually not be there anymore, things would slow down....but it doesn't make it any easier. You think you know who your true friends are and who really cares about you and who will stick it out and be there, but sometimes you're wrong and it's hard. At least we do understand it and were expecting it, now we just need to figure out how to cope with it. Thank you to those of you that are still sending messages and sticking with us and keeping in touch, we do appreciate it. We're still in the middle of all of this, but I think we'll feel better about it when we get home.
-Traveling is expensive and tiring! I spent almost $700 in gas money last month and put over 5000 miles on my car. I'm ready to just feel settled and not feel like we are hobos!
There are lots of reasons I'm ready to move back, the list could go on, but these are the main reasons. I really am so grateful that we get the 2 or 3 days each week that we do, we are way ahead of where we thought we would be in September. Everytime I'm struggling I just have to remind myself and my kids that we could still be waiting for the heart!! I feel lucky that we get the days we do, and I try to make the most of them...we're just ready to have even more :)
Clinic day tomorrow and exercise test on Tuesday. I'll keep you posted on the results and when they're going to let us go home for this week!
No, I don't think things will be like our old "normal," but I think we can make a new "normal" that's even better than the old. Here are some other reasons I want to move home:
-My kids need me. We all love the few days each week that we get to spend together, but it's not enough. We need to be together all the time, in our house, with our dogs and our stuff. It's critical that we get there as soon as possible. I used to think we were a really strong family, but I'm starting to worry, we need to move back....soon.
-I need to get back to 5 am workouts. I can't do it now because I don't like to leave Abby alone, but when we are home, both Britt and Brock will be there in the mornings. I'm getting fat again! I worked so hard a few years back to lose all that weight, and it's slowly creeping back on. I need to spend some time worrying about and taking care of myself again. I can't do that when we are in Salt Lake. All the traveling wears me out, and I'm feeling lazy and gross....just not taking care of myself at all. That needs to change.
-I've got all of the things to do at home and in my classroom that I had saved for summer break and then was never able to do them because we were life flighted on May 18th. I always have a list of things that need to get done over summer break, I never got to my list and it's been driving me crazy!! I'm pretty sure I left everything a big, unorganized mess! That's not okay!
-I want my dogs, I miss them and the kids do too. I know they're happy where they are and probably don't ever think about us, but we need them. There's nothing better than to always have someone wagging their tail and running around in pure joy evertime you walk through the door. I miss that, we need our dogs.
-When we're living in both St. George and Salt Lake and are never in one place very long, it's hard to maintain relationships with friends and family, I can quickly feel them slipping. We're still here dealing with things, while everyone else is getting back to their lives. Abby and I have spent lots of time talking about this and preparing for it. We knew that people that were very interested in us and what we were doing would eventually not be there anymore, things would slow down....but it doesn't make it any easier. You think you know who your true friends are and who really cares about you and who will stick it out and be there, but sometimes you're wrong and it's hard. At least we do understand it and were expecting it, now we just need to figure out how to cope with it. Thank you to those of you that are still sending messages and sticking with us and keeping in touch, we do appreciate it. We're still in the middle of all of this, but I think we'll feel better about it when we get home.
-Traveling is expensive and tiring! I spent almost $700 in gas money last month and put over 5000 miles on my car. I'm ready to just feel settled and not feel like we are hobos!
There are lots of reasons I'm ready to move back, the list could go on, but these are the main reasons. I really am so grateful that we get the 2 or 3 days each week that we do, we are way ahead of where we thought we would be in September. Everytime I'm struggling I just have to remind myself and my kids that we could still be waiting for the heart!! I feel lucky that we get the days we do, and I try to make the most of them...we're just ready to have even more :)
Clinic day tomorrow and exercise test on Tuesday. I'll keep you posted on the results and when they're going to let us go home for this week!
Wednesday, September 7, 2011
Good clinic news-in fact, the best news ever!!!
I love it when I start thinking how tired I am, how sick of driving back and forth I am, how much I want to go home, how I don't want to play nurse and pharmacist anymore, how I just want my want my brain to turn off and stop worrying for a second, how I just don't really want to do this anymore.......and then we go to clinic and get great news-actually the best news so far!!! Yesterday they told us that, if things keep looking as good as they have lately, we can possibly move back home the 1st of October! Yep, that's right, only 3 more weeks!!!! I know they told me not to tell anyone yet, just in case, but I couldn't help it....I had to tell!
Abby's biopsy last week was 100% again. On September 18th, she goes to her last taper for her predisone, so hopefully that means no more puffy cheeks. They want to watch her for a couple of weeks after that and make sure she still is okay. We are finally down to having clinic only one day/week now too! We don't have to go back until next Monday-5 days away from PCMC is the longest we've gone since May 18th.
One thing that makes me real nervous is that we scheduled her exercise test for next Tuesday. The thought of her running again stresses me out. They should probably hook me up for an ekg at the same time they hook her up!! It will be interesting, but scary to see how her new heart responds to the stress of exercise. Abby is so excited for this, she's been waiting for a long time, she just wants to run again!! Then we'll really be able to start training for the Doman Dash 5K we'll be having for Abby next May. That means it's time for many of you to start training too. If a 12-year-old kid can run 3 miles only 10 months after having a heart transplant, we all should be able. I have a lot of work to do too, I've never been so out of shape!! It gives us something to work for, we now have a goal, put it on your calendar and get ready with us.
Britt is doing well. She's pretty sore, but recovering. She's spending the week with us because she can't go back to school until Friday and she has a follow up appointment on Thursday, She also has two days of therapy up here this week too. We love having her here with us, it makes us all happier. Britt and Abby have a lot of fun together, there's lots of laughing, she needs her big sister around. We miss Brock a ton when we're here, we all just need to be together all the time again, I can't wait.
One thing I've noticed the past 4 months is that everytime I've reached my limit, everytime I've felt like I'm only hanging on by a thread, something good happens. I'm quite certain that I'm being watched over and that I won't ever be given more than I can handle. What a reassuring feeling this is, I hope I can remember this as we continue to go through ups and downs. When you're a heart mom, things are never "easy", there will always be worries and setbacks, but I know that we can make it through them. When I look back at what we've been through as a family this past year, I know that this next year has to be easier, and I know that I won't be given too much.
Abby's biopsy last week was 100% again. On September 18th, she goes to her last taper for her predisone, so hopefully that means no more puffy cheeks. They want to watch her for a couple of weeks after that and make sure she still is okay. We are finally down to having clinic only one day/week now too! We don't have to go back until next Monday-5 days away from PCMC is the longest we've gone since May 18th.
One thing that makes me real nervous is that we scheduled her exercise test for next Tuesday. The thought of her running again stresses me out. They should probably hook me up for an ekg at the same time they hook her up!! It will be interesting, but scary to see how her new heart responds to the stress of exercise. Abby is so excited for this, she's been waiting for a long time, she just wants to run again!! Then we'll really be able to start training for the Doman Dash 5K we'll be having for Abby next May. That means it's time for many of you to start training too. If a 12-year-old kid can run 3 miles only 10 months after having a heart transplant, we all should be able. I have a lot of work to do too, I've never been so out of shape!! It gives us something to work for, we now have a goal, put it on your calendar and get ready with us.
Britt is doing well. She's pretty sore, but recovering. She's spending the week with us because she can't go back to school until Friday and she has a follow up appointment on Thursday, She also has two days of therapy up here this week too. We love having her here with us, it makes us all happier. Britt and Abby have a lot of fun together, there's lots of laughing, she needs her big sister around. We miss Brock a ton when we're here, we all just need to be together all the time again, I can't wait.
One thing I've noticed the past 4 months is that everytime I've reached my limit, everytime I've felt like I'm only hanging on by a thread, something good happens. I'm quite certain that I'm being watched over and that I won't ever be given more than I can handle. What a reassuring feeling this is, I hope I can remember this as we continue to go through ups and downs. When you're a heart mom, things are never "easy", there will always be worries and setbacks, but I know that we can make it through them. When I look back at what we've been through as a family this past year, I know that this next year has to be easier, and I know that I won't be given too much.
Sunday, September 4, 2011
We are so blessed
How come we are so blessed? Here we are, just this little family from St. George, school teacher and single mom.....just doing our little thing, nothing great or spectacular, not out of the ordinary, just a fairly normal family.......... but we have so many people that are helping us right now. It makes me ask, "why us?" or wonder, "Do we really deserve all of this goodness?" I just have to comment on a few of the great things that have happened lately or are going to happen in the near future. We always feel so loved and taken care of.
-The Car wash at Fargo's. I heard it was a hit, cars non-stop throughout the day. I wish we could have been there, but Abby wasn't feeling her best that day, she needed to rest. Thank you to all of you that spent the day washing cars for Abby. Thanks to Fargo's for hosting it! I hope you all feel like it was worthwhile, it meant a lot to us.
-The Kalamity dance performance at Desert Hills High. We couldn't attend this either because it was a clinic day for Abby in Salt Lake, but we got to hear all about it! I heard that Cammeron Murdoch's words brought to tears to many people's eyes and that the dancing was just incredible. Thank you to all of you that helped put this together and performed, thanks Cammeron for being there and telling Abby's story, and thanks to everyone that attended-we were told it was a full house! Thanks Tia for thinking about us.......again, I've only met you once, but I feel like I've known you forever.
-My aunt and uncle, Janene and Jeff, and their whole family. They couldn't attend the Dash for Donation but participated in their own walk-a-thon for Abby. We loved seeing the pictures of everyone in their yellow shirts. Thank you for the donation too, it is needed. Also thanks to my cousin Paul's daughter, Maddie, that made beaded lizards and sold them for Abby. What a great idea, thank you for spending your time for Abby! Every penny counts, and you made lots of pennies.
-The Northern Utah Mustang Owner's Association. They are in the process of putting together a national mustang car show that will be held at Tuacahn in St. George in April. They are going to donate some of their funds that are raised to Abby and our family. The show is going to be awesome, we can't wait. They had a Utah show last week in Park City and have already started getting the word out about Abby's story. Abby loved sitting in all of the mustangs last week to get her picture taken for the promotion for the car show. We will post pictures of her photo shoot later. Thanks NUMOA for all of things you gave to Abby and for the money you gave us last week-it was fun meeting all of you! We appreciate all you are doing for Abby.
-The music festival that's going to take place at Daybreak in South Jordan on September 24th from 2-8:00 pm. My cousin and his wife have planned this event for Abby and it's going to be awesome. There will be many bands performing throughout the day and they will be having a raffle as well as selling Team Doman shirts and wristbands. I think this sounds like a fun day, we will be there for sure! Everyone is invited, so I hope to see all of my Salt Lake friends and family there, plus anyone else that happens to be there that weekend.
-The Zumba fundraiser for Abby at the Warehouse in St. George. This is going to be held on September 17th. I haven't gotten all of the details, but I know there are some awesome women that are in charge! Thanks Raelee for putting this together, it sounds like fun!
-The fundraising done by my sister-in-law Mel and her family. Having bake sales was a great idea! Thanks to the kids that had lemonade stands too. We are grateful for the time you spent baking and selling things for our family, thank you!!
As you can see, we are so blessed. Before Abby collapsed, I'd always had a hard time accepting help and especially asking for help, I think it was my pride getting in the way. All of this has really humbled me, it's taught me that it's okay to need help sometimes. I hope I've learned to accept it graciously, sometimes it's hard to let people know how much we appreciate them and what they're doing. It can be hard to put gratitude into words. If you've helped us, and I haven't personally thanked you, I am sorry. It's been hard for me to keep some things organized, it seems like some things have gotten past me the past few months. Just know that we are grateful for everything that people have done for us, we are so blessed.
"One thing will always secure heaven for us-the acts of charity and kindness with which we have filled our lives. We can do no great things, only small things with great love." Mother Teresa
-The Car wash at Fargo's. I heard it was a hit, cars non-stop throughout the day. I wish we could have been there, but Abby wasn't feeling her best that day, she needed to rest. Thank you to all of you that spent the day washing cars for Abby. Thanks to Fargo's for hosting it! I hope you all feel like it was worthwhile, it meant a lot to us.
-The Kalamity dance performance at Desert Hills High. We couldn't attend this either because it was a clinic day for Abby in Salt Lake, but we got to hear all about it! I heard that Cammeron Murdoch's words brought to tears to many people's eyes and that the dancing was just incredible. Thank you to all of you that helped put this together and performed, thanks Cammeron for being there and telling Abby's story, and thanks to everyone that attended-we were told it was a full house! Thanks Tia for thinking about us.......again, I've only met you once, but I feel like I've known you forever.
-My aunt and uncle, Janene and Jeff, and their whole family. They couldn't attend the Dash for Donation but participated in their own walk-a-thon for Abby. We loved seeing the pictures of everyone in their yellow shirts. Thank you for the donation too, it is needed. Also thanks to my cousin Paul's daughter, Maddie, that made beaded lizards and sold them for Abby. What a great idea, thank you for spending your time for Abby! Every penny counts, and you made lots of pennies.
-The Northern Utah Mustang Owner's Association. They are in the process of putting together a national mustang car show that will be held at Tuacahn in St. George in April. They are going to donate some of their funds that are raised to Abby and our family. The show is going to be awesome, we can't wait. They had a Utah show last week in Park City and have already started getting the word out about Abby's story. Abby loved sitting in all of the mustangs last week to get her picture taken for the promotion for the car show. We will post pictures of her photo shoot later. Thanks NUMOA for all of things you gave to Abby and for the money you gave us last week-it was fun meeting all of you! We appreciate all you are doing for Abby.
-The music festival that's going to take place at Daybreak in South Jordan on September 24th from 2-8:00 pm. My cousin and his wife have planned this event for Abby and it's going to be awesome. There will be many bands performing throughout the day and they will be having a raffle as well as selling Team Doman shirts and wristbands. I think this sounds like a fun day, we will be there for sure! Everyone is invited, so I hope to see all of my Salt Lake friends and family there, plus anyone else that happens to be there that weekend.
-The Zumba fundraiser for Abby at the Warehouse in St. George. This is going to be held on September 17th. I haven't gotten all of the details, but I know there are some awesome women that are in charge! Thanks Raelee for putting this together, it sounds like fun!
-The fundraising done by my sister-in-law Mel and her family. Having bake sales was a great idea! Thanks to the kids that had lemonade stands too. We are grateful for the time you spent baking and selling things for our family, thank you!!
As you can see, we are so blessed. Before Abby collapsed, I'd always had a hard time accepting help and especially asking for help, I think it was my pride getting in the way. All of this has really humbled me, it's taught me that it's okay to need help sometimes. I hope I've learned to accept it graciously, sometimes it's hard to let people know how much we appreciate them and what they're doing. It can be hard to put gratitude into words. If you've helped us, and I haven't personally thanked you, I am sorry. It's been hard for me to keep some things organized, it seems like some things have gotten past me the past few months. Just know that we are grateful for everything that people have done for us, we are so blessed.
"One thing will always secure heaven for us-the acts of charity and kindness with which we have filled our lives. We can do no great things, only small things with great love." Mother Teresa
Friday, September 2, 2011
Double Surgery Day for the Doman's!!
5:45 am-Leave the house for PCMC
6:00 am-check in for Abby's cath/biopsy. The biopsy was scheduled for 7:30. The plan was for Britt and I to wait until Abby woke up from her biopsy around 8:30, then head out to Jordan Valley Hospital for her knee surgery. She was supposed to be there at 9:15. My dad would stay with Abby and My mom would come with us.
6:45 am-phone call from Jordan Valley asking us to be there at 8:00 because there was a cancellation. I made a quick call to my parents and asked them to be to PCMC at 7:30 instead of 8:30.
7:30 am-my mom and dad showed up, but we're still waiting for the biopsy/cath.
7:45 am-walked Abby down for her surgery, kissed her goodbye, and walked my dad through what would happen the rest of the morning. Took off and sped to Jordan Valley.
8:15 am-made it to Jordan Valley. Checked Britt in, and anxiously started waiting. I think if my phone would have rung during this time,. I would have passed out.....just a little anxiety moment, we didn't need a repeat of May 18th.
9:30 am-Call from my dad. Abby was in recovery, the doc mentioned her cath levels were higher than last time, hoping it wasn't rejection. I just slightly started panicking at this time, especially since another one of Abby's transplant friends is in the cicu right now with serious rejection and complications (she could sure use your prayers, her name is Maya and she's struggling!)
10:30 am-Still sitting in the waiting room with Britt....good thing they made us get there early :(
11:00 am-Call from my dad, Abby's echo looked good. They were waiting to meet with the transplant team in the PHARMACY, because every room in the clinic was full, as well as the waiting room and the hall outside of the waiting room. I knew they were going to have a long day!
11:15 am-Finally, finally, they came to take Britt back to pre-op.
12:30 pm-Britt goes in for surgery. Wow, we waited for over 4 hours.....I decided I will never be on time for a surgery again.
1:00 pm-Call from Abby. Everything looked in clinic, no problems. They're adjusting her meds a little to work on cath level results. They'll call later with biospy results. They're headed home for Abby to work on homework.
1:45 pm-Dr. Beck comes out to talk about Britt's surgery. She had a ton of scar tissue throughout the knee....again. He cleaned some out of the front and the back and a big ball of it on the kneecap. He also cleaned up the meniscus again and made a little incision inside of the tissue to give the kneecap more room to move. Her ACL looks good and stable. Britt has 6 weeks of intense, painful physical therapy 3 times/week. I'm not sure if I'll keep her in Salt Lake with us to do this, or go to St. George....I'm still working on all of this.
3:45 pm- Britt finally wakes up enough for us to be able to go home. She has the biggest brace on her knee I've ever seen. She's in pain, but doing okay.
4:30 pm-Stop at the pharmacy to try to pick up Britt's meds......but there are at least 8 people in line, so because I'm tired of waiting, I leave.
5:00 pm-finally home and both girls are sound asleep.
8:00 pm-It's been a long day. We still haven't heard Abby's biopsy results, but I think that no news is good news, right??? Both of the girls are feeling fine, but tired....me too. Tomorrow morning we are going to go to St. George for the weekend, I need a break and we don't have to be back until Tuesday morning. Brock is playing football right now at North Sanpete High, my parents are watching and called to say he was playing great!! He needs us to be in St. George this weekend too. Britt will be coming back with us on Monday night so she can do therapy next week on Tuesday and Thursday. She also has a post op appointment on Thursday. Abby has her clinic on Tuesday and Thursday next week too, what a fun week we have ahead of us.
Today was not my most favorite day. I have learned to be really patient, I'm getting much better at waiting. But, I wish there could have been 3 of me today, so I could have been with each of my kids when they needed me, that's becoming the hardest part of all of this-I can't be in 3 places at once. At least I know we are getting closer to being able to move home, possibly only 5 more weeks! We can do this, we are staying strong.
6:00 am-check in for Abby's cath/biopsy. The biopsy was scheduled for 7:30. The plan was for Britt and I to wait until Abby woke up from her biopsy around 8:30, then head out to Jordan Valley Hospital for her knee surgery. She was supposed to be there at 9:15. My dad would stay with Abby and My mom would come with us.
6:45 am-phone call from Jordan Valley asking us to be there at 8:00 because there was a cancellation. I made a quick call to my parents and asked them to be to PCMC at 7:30 instead of 8:30.
7:30 am-my mom and dad showed up, but we're still waiting for the biopsy/cath.
7:45 am-walked Abby down for her surgery, kissed her goodbye, and walked my dad through what would happen the rest of the morning. Took off and sped to Jordan Valley.
8:15 am-made it to Jordan Valley. Checked Britt in, and anxiously started waiting. I think if my phone would have rung during this time,. I would have passed out.....just a little anxiety moment, we didn't need a repeat of May 18th.
9:30 am-Call from my dad. Abby was in recovery, the doc mentioned her cath levels were higher than last time, hoping it wasn't rejection. I just slightly started panicking at this time, especially since another one of Abby's transplant friends is in the cicu right now with serious rejection and complications (she could sure use your prayers, her name is Maya and she's struggling!)
10:30 am-Still sitting in the waiting room with Britt....good thing they made us get there early :(
11:00 am-Call from my dad, Abby's echo looked good. They were waiting to meet with the transplant team in the PHARMACY, because every room in the clinic was full, as well as the waiting room and the hall outside of the waiting room. I knew they were going to have a long day!
11:15 am-Finally, finally, they came to take Britt back to pre-op.
12:30 pm-Britt goes in for surgery. Wow, we waited for over 4 hours.....I decided I will never be on time for a surgery again.
1:00 pm-Call from Abby. Everything looked in clinic, no problems. They're adjusting her meds a little to work on cath level results. They'll call later with biospy results. They're headed home for Abby to work on homework.
1:45 pm-Dr. Beck comes out to talk about Britt's surgery. She had a ton of scar tissue throughout the knee....again. He cleaned some out of the front and the back and a big ball of it on the kneecap. He also cleaned up the meniscus again and made a little incision inside of the tissue to give the kneecap more room to move. Her ACL looks good and stable. Britt has 6 weeks of intense, painful physical therapy 3 times/week. I'm not sure if I'll keep her in Salt Lake with us to do this, or go to St. George....I'm still working on all of this.
3:45 pm- Britt finally wakes up enough for us to be able to go home. She has the biggest brace on her knee I've ever seen. She's in pain, but doing okay.
4:30 pm-Stop at the pharmacy to try to pick up Britt's meds......but there are at least 8 people in line, so because I'm tired of waiting, I leave.
5:00 pm-finally home and both girls are sound asleep.
8:00 pm-It's been a long day. We still haven't heard Abby's biopsy results, but I think that no news is good news, right??? Both of the girls are feeling fine, but tired....me too. Tomorrow morning we are going to go to St. George for the weekend, I need a break and we don't have to be back until Tuesday morning. Brock is playing football right now at North Sanpete High, my parents are watching and called to say he was playing great!! He needs us to be in St. George this weekend too. Britt will be coming back with us on Monday night so she can do therapy next week on Tuesday and Thursday. She also has a post op appointment on Thursday. Abby has her clinic on Tuesday and Thursday next week too, what a fun week we have ahead of us.
Today was not my most favorite day. I have learned to be really patient, I'm getting much better at waiting. But, I wish there could have been 3 of me today, so I could have been with each of my kids when they needed me, that's becoming the hardest part of all of this-I can't be in 3 places at once. At least I know we are getting closer to being able to move home, possibly only 5 more weeks! We can do this, we are staying strong.
Subscribe to:
Posts (Atom)