What I thought would be one of our easy in-and-out of clinic in 2 hours, turned into being much, much more; In fact, I can't remember very many crazier clinic days! We got there at 7:30, had labs drawn and had Abby's echo with no problems, I think there was only 1 other patient there at the time. Then we were just chilling, waiting for the transplant team, talking to our "heart buddies," actually kind of enjoying ourselves for a few minutes. When the transplant team and Dr. E came in, we still thought that everything was good, then they left for a few minutes. While they were gone, I had the genetic counselor come in to talk to me. While she was trying to explain to me what was going on (more on this later), Dr. E. came back in and said that they decided Abby's echo showed some decreased heart function so they were in the process of trying to fit us in the cath lab schedule! Then I started getting a little nervous. They were coming in and out checking on Abby and rescheduling everything, at the same time the genetic counselor was trying to talk to me, at the same time Medco, the pharmacy company that our insurance company uses,the company that I've been haggling with for the past 5 weeks trying to get Abby's meds from, kept calling me to tell me more problems they had run into. You know when you're brain goes on overload and it just kind of freezes, I've been there many times the past 5 months, and I almost went there again. I almost had a breakdown right there in clinic.......but I didn't, I held it in :) Anyway, they got her all prepped and we walked into the cath lab before I had even really had a chance to think about what was going on. They were happy to see Abby in the cath lab, not because she was there 2 weeks early, just because they love her, she's the perfect patient. While she was having her surgery, I went and had my blood drawn (back to the genetic counseling part) grabbed some lunch and then they paged me, she was already done. The good news was that her cath looked great, no problems. The bad news was that when I walked into the recovery room, Abby was sitting up and she was mad, really mad. I had never seen her so mad in the past 5 months (well, maybe when they wanted her to talk to the psychiatric team!). She had only been done about 10 minutes and she was saying, "I'm ready, let's go. Let me get dressed now, I'm ready to go. Just let me go.....now." I found out later, after they made her actually recover that she was so mad because the anasthesiologist made her go all the way to sleep, she just wanted use propofol, but he didn't want to do it that way, and it ticked her off! She was not happy, but she got over it pretty quick-thank goodness! Dr. E then wanted us to go back downstairs and have another echo before we left. So, finally, at 3:00, 7 1/2 hours after arriving at clinic, we were on our way home. The results of Abby's biopsy came back this morning and showed that she is in mild rejection. Nothing to freak out about. We just have to make some adjustments in Abby's meds and then go back up for another echo and clinic next Monday and hope that things look better. I just keep reminding myself that I can't complain about all of the trips to Salt Lake, because we really aren't even supposed to be home yet. I think that this was just a reminder for us that we shouldn't ever become too complacent or comfortable, things are always going to come up, we just need to expect it and go with the flow when it does. It was a good reminder. It was so good to see some of my "heart mom" friends there yesterday, it's always is a good reminder that we're not the only ones that are going through these things right now, and they can understand some of the emotions I go through daily.
Now to the part that's a little more stressful. It turns out that Abby's cardiomyopathy is genetically linked. They found a mutation on one of her genes, the TNNI3 gene to be exact. This is the information that I learned from our genetic counselor-I might not be completely correct on some parts, but If I'm wrong, I'll repost later:
-Abby has had this gene since birth, it just didn't manifest itself as cardiomyopathy until May 18th. It can be hidden for many years, sometimes people never even know they carry the gene.
-People that carry the gene often die from sudden death.
-It's possible that Abby received this gene from either me or her dad. But it didn't have to happen that way, she could be the first one that carries the mutation. We both need to be tested for the gene to see if we passed it on to her. I had my blood test yesterday, her dad hopefully will very soon. It will then take about 3-4 weeks to get the results.
-If either of us carry the gene, there's a 50% chance that Britt and Brock do too. So, if we carry it, they will also need to have the testing done. We have all had echo's done, so if we carry the gene, we're okay for now. If either of them carry the gene, there's a 50% chance they will pass it along to their kids too.
- There is a 50% chance that Abby will pass it on to her kids. But, with the rejection meds she's on now, she knows she probably won't be able to have kids of her own anyway. We were reminded of that sad fact yesterday too. My response to that is.....don't worry about it now, because who knows where will be in 10-15 years when Abby wants to have kids, everything could change by then. 10 years ago, Abby wouldn't have even been able to have a transplant and look where she is today.
-If I carry the gene, my mom and dad should be probably be tested so we know if I got it from them. If they carry it, then my brothers and sister should probably be tested too. Then we'll have to see if it's passed to their kids.
It's a huge thing to think about. For now, I'm just hoping and praying that neither Abby's dad or I carry the gene. If neither of us do, then Britt and Brock are all clear and won't have to worry about it at all; But, if we do, I guess we'll just go from there.
Yes, yesterday's clinic was pretty stressful. We didn't get home last night until about 8:00, and I still feel wiped out today. I have lots of questions for the genetic counselor, so I'm glad I have her number. One question I have is if Abby carries the gene, can it affect her new heart? I just don't know, but I hope not. I'm definitely not a gene specialist, or even a scientist (I only teach 6th grade math!) but right now, I wish I was.
My favorite comment I got yesterday was from a good friend and fellow heart mom. She said that she was amazed that she was picked to be a mom to such a special little girl. I feel exactly the same way. I am amazed I was chosen for this and I wouldn't change it for anything! Just spend a little bit of time with Abby and you'll know exactly what I'm talking about. Heart kids are special, and even with everything we go through daily, I'm proud to now be considered a "heart mom!"
Tuesday, October 18, 2011
Saturday, October 15, 2011
Clinic Monday, but for now.....just a mellow week!
Things have been pretty mellow around, and I'm not complaining about that at all!! I think that "mellow" is just what we need for a while. Abby and I are going back to Salt Lake on Sunday night for clinic on Monday. One interesting thing is that they got back the results back from the the genetic testing they had done on Abby's heart, they are meeting with us on Monday. I'm not quite sure what to think or feel about this, I can't even begin to think what they are going to tell us. Maybe they'll be able to answer some of the "why" questions we have, but.....maybe I don't want to know either. I guess we'll just have to wait to hear what they say and deal with it from there.
I think I forgot to mention that Abby made her final decision for her "Make-a-Wish" wish. After lots of thought, and timing issues, and taking into consideration that she's not supposed to be in the sun too much and can't swim for about 1 year, she's decided on an Alaskan cruise. We've heard from our good friend Mama Cozz and her family how incredible it is! So, the day after Abby's 13th birthday, May 25, we're headed to Seattle to board the ship! We have a long time to have to wait, we'll have to be patient, but that is one thing that we've learned through all of this!! There are some amazing excursions that go along with the cruise, it's going to be hard to choose which one's we'll be going on, but I think the zip line adventure through the rain forest is a sure thing-I'll just have to convince Abby :)
I've had a lot of questions about the donor family, everyone is curious if I know who gave Abby the gift of life. I wrote my letter to the family a couple of months ago, but I haven't heard anything back. My letter was given to our transplant team, then passed on to Intermountain Donor Services, and then given to the family. The family of the donor then chooses whether or not they want to contact me. I am curious, but I also know that if it's meant to be, I will be contacted. There might be a reason that we haven't heard anything, and I'm okay with that. Maybe the family just needs more time, or maybe it's a situation that I just wouldn't want to know. It's okay, I'm okay with this. I will forever be grateful to them and think about them daily-whether I know who they are not, they are the reason Abby is alive today.
One thing that I've learned this week, is that there is nothing more frustrating then dealing with insurance companies and pharmacies. I've spent more time on the phone this past week then ever before and it's making me crazy. It seems like no one does their job or know what's going on. I completely lost my cool, and I rarely I do that! I finally even said to one poor lady that their company was completey incompetent and horrible at communication and then I asked if I could please talk to someone, anyone, that actually knew anything about insurance. I wish I could hire someone to make all the phone calls, pay and figure out all my bills, and make sure Abby has all of her meds when she needs them, so I can just take care of my family. Between Britt's 3 surgeries and all of her physical therapy, Mine, Brock's and Britt's echos, and everything that's happened with Abby this past 5 months, it's just a big mess. It almost makes you just feel like just giving up and saying, "go ahead, take everything I have and just leave us alone!!!" Frustrating.......just frustrating.
We've been home for almost 2 weeks now, and being here is helping me remember some of the great things that were done for us when we were in Salt Lake. I'm starting to be able to sort some of those things out in my mind and I know that I didn't thank many of you for your support and prayers, especially things that were done right in the beginning. Please know that we are grateful, it made things easier for us, we do appreciate you. I feel bad that I didn't keep up with things better, so if I haven't thanked you personally, I'm sorry, please accept this thank you.
One of the greatest moments of this week was last night, as we were driving to Vegas to see Phantom for Britt's belated birthday present. I was sitting in the front driving, and just listening to my three kids in the back-laughing together, singing together, just talking and enjoying each other. It was a complete feeling of contentment. It made me stop for a minute and remember how lucky we were to even have that time, things so easily could have gone the other way.....really should have gone the other way. I will always be grateful for times like those. We are one lucky family.
I think I forgot to mention that Abby made her final decision for her "Make-a-Wish" wish. After lots of thought, and timing issues, and taking into consideration that she's not supposed to be in the sun too much and can't swim for about 1 year, she's decided on an Alaskan cruise. We've heard from our good friend Mama Cozz and her family how incredible it is! So, the day after Abby's 13th birthday, May 25, we're headed to Seattle to board the ship! We have a long time to have to wait, we'll have to be patient, but that is one thing that we've learned through all of this!! There are some amazing excursions that go along with the cruise, it's going to be hard to choose which one's we'll be going on, but I think the zip line adventure through the rain forest is a sure thing-I'll just have to convince Abby :)
I've had a lot of questions about the donor family, everyone is curious if I know who gave Abby the gift of life. I wrote my letter to the family a couple of months ago, but I haven't heard anything back. My letter was given to our transplant team, then passed on to Intermountain Donor Services, and then given to the family. The family of the donor then chooses whether or not they want to contact me. I am curious, but I also know that if it's meant to be, I will be contacted. There might be a reason that we haven't heard anything, and I'm okay with that. Maybe the family just needs more time, or maybe it's a situation that I just wouldn't want to know. It's okay, I'm okay with this. I will forever be grateful to them and think about them daily-whether I know who they are not, they are the reason Abby is alive today.
One thing that I've learned this week, is that there is nothing more frustrating then dealing with insurance companies and pharmacies. I've spent more time on the phone this past week then ever before and it's making me crazy. It seems like no one does their job or know what's going on. I completely lost my cool, and I rarely I do that! I finally even said to one poor lady that their company was completey incompetent and horrible at communication and then I asked if I could please talk to someone, anyone, that actually knew anything about insurance. I wish I could hire someone to make all the phone calls, pay and figure out all my bills, and make sure Abby has all of her meds when she needs them, so I can just take care of my family. Between Britt's 3 surgeries and all of her physical therapy, Mine, Brock's and Britt's echos, and everything that's happened with Abby this past 5 months, it's just a big mess. It almost makes you just feel like just giving up and saying, "go ahead, take everything I have and just leave us alone!!!" Frustrating.......just frustrating.
We've been home for almost 2 weeks now, and being here is helping me remember some of the great things that were done for us when we were in Salt Lake. I'm starting to be able to sort some of those things out in my mind and I know that I didn't thank many of you for your support and prayers, especially things that were done right in the beginning. Please know that we are grateful, it made things easier for us, we do appreciate you. I feel bad that I didn't keep up with things better, so if I haven't thanked you personally, I'm sorry, please accept this thank you.
One of the greatest moments of this week was last night, as we were driving to Vegas to see Phantom for Britt's belated birthday present. I was sitting in the front driving, and just listening to my three kids in the back-laughing together, singing together, just talking and enjoying each other. It was a complete feeling of contentment. It made me stop for a minute and remember how lucky we were to even have that time, things so easily could have gone the other way.....really should have gone the other way. I will always be grateful for times like those. We are one lucky family.
Monday, October 10, 2011
It's Monday and we're not at PCMC???
Today is the first Monday in almost 5 months that we haven't spent at Primary Children's!! Wow, it actually kind of felt weird. We did, however, have to go to Dixie Regional for some labs. We're hoping that Abby's white blood count is finally up....this house arrest is really getting to us! Plus, her Celcept and Prograf levels were a little off last week too, so after some medication adjustments, we'll hope they're back in the perfect range!! The amazing thing that happened today was that it only took one poke! Abby is almost always a 2-poke blood draw kid, but not today. It was a little funny, after we had been sitting in with the lab technician for about 10 minutes, just chatting, she stopped and said, "Wait.....you're the girl that collapsed in PE last May aren't you???" Then she just stared at us with her mouth hanging open and kept repeating, "Dang!!" over and over again. Abby and I got a good laugh out of that! It was so nice not to have to drive up to Salt Lake this week, I actually feel like I've had time to finally start recovering! We will have to go back for Monday morning clinic, but we won't leave until Sunday afternoon and we'll come back right after her appointment on Monday. I can handle every other week, that works for all of the Doman crew!
So, what have we been doing this past week, since we've been back home?
-Unpacking and moving in. This took a lot of time, because I felt like I had to clean everything before I put it away (remember my germ obsession?) I really just wanted to throw everything we had away and start over, but financially, this wasn't a smart idea, so I cleaned everything. I did throw lots of stuff away and sent it to the DI. I realized we had a lot of stuff that we didn't need, so I just tossed it. It felt good. I'm still not done with every closet and cupboard....but we're getting close!
-Visiting with friends. Thank you to everyone that has stopped by to see us! It's been fun to catch up with you and find out what you've been up to the past 5 months. Everyone knows what we've been doing, but we don't know what's been happening with anyone else. Thanks for bringing us goodies and notes too! To those of you that have been sick or around sick people, thank you for not stopping by....we really appreciate that. Thanks to everyone for making us feel so welcome and loved. It is good to be home!
-Keeping Abby caught up in school. She's getting bored, I think she's realized that school really isn't fun without friends. She's counting down the days when she can be back in school, November 7th can't come soon enough.
-We did break the house arrest rules and we went to church yesterday. We had to because the bishop called Abby up to the pulpit in sacrament meeting to announce that she's moved in to young women's. She turned 12 last May, but since we haven't been around, she hadn't officially moved up. It was pretty amazing to see her up there, I saw quite a few teary eyes in the congregation. Considering everything that we've been through, this was a big deal!
-Watching Brock play football. Desert Hills is tied for 1st in the region, and with Brock playing both JV and Varsity we're spending lots of time watching games....and I love it! This has always been one of my favorite things to do, I have always loved watching my kids play sports, but with Britt out with her knee problems and Abby out with her heart problems, I've really been missing it! I can't wait until I can go watch them all play again!
-Enjoying the simple things. Sitting down for dinner together, watching tv, helping each other with homework, having the kids' friends over for lunch during school, roast marshmallows and make smores, going out for icecream, Sunday dinner at grandma's house, my morning workouts, being home when Britt and Brock go to school, shopping at Costco, working in the yard (I haven't gotten to this yet, but I will soon!), playing or snuggling with the dogs, etc.
Things are good. Life is beginning to feel more and more normal. I have 3 weeks to get myself ready to go back to school, and 4 weeks to get Abby ready. One thing that I've realized this past week is that I wish I hadn't taken my life before the heart transplant for granted. Things that didn't really matter, used to seem big.....now I know better. I look at how easy things used to be, and I wish I would have realized this at the time. I guess it's just a matter of stepping back and putting things in perspective. Although we will never have that "easy" back, things can still be good now.....and they are.
So, what have we been doing this past week, since we've been back home?
-Unpacking and moving in. This took a lot of time, because I felt like I had to clean everything before I put it away (remember my germ obsession?) I really just wanted to throw everything we had away and start over, but financially, this wasn't a smart idea, so I cleaned everything. I did throw lots of stuff away and sent it to the DI. I realized we had a lot of stuff that we didn't need, so I just tossed it. It felt good. I'm still not done with every closet and cupboard....but we're getting close!
-Visiting with friends. Thank you to everyone that has stopped by to see us! It's been fun to catch up with you and find out what you've been up to the past 5 months. Everyone knows what we've been doing, but we don't know what's been happening with anyone else. Thanks for bringing us goodies and notes too! To those of you that have been sick or around sick people, thank you for not stopping by....we really appreciate that. Thanks to everyone for making us feel so welcome and loved. It is good to be home!
-Keeping Abby caught up in school. She's getting bored, I think she's realized that school really isn't fun without friends. She's counting down the days when she can be back in school, November 7th can't come soon enough.
-We did break the house arrest rules and we went to church yesterday. We had to because the bishop called Abby up to the pulpit in sacrament meeting to announce that she's moved in to young women's. She turned 12 last May, but since we haven't been around, she hadn't officially moved up. It was pretty amazing to see her up there, I saw quite a few teary eyes in the congregation. Considering everything that we've been through, this was a big deal!
-Watching Brock play football. Desert Hills is tied for 1st in the region, and with Brock playing both JV and Varsity we're spending lots of time watching games....and I love it! This has always been one of my favorite things to do, I have always loved watching my kids play sports, but with Britt out with her knee problems and Abby out with her heart problems, I've really been missing it! I can't wait until I can go watch them all play again!
-Enjoying the simple things. Sitting down for dinner together, watching tv, helping each other with homework, having the kids' friends over for lunch during school, roast marshmallows and make smores, going out for icecream, Sunday dinner at grandma's house, my morning workouts, being home when Britt and Brock go to school, shopping at Costco, working in the yard (I haven't gotten to this yet, but I will soon!), playing or snuggling with the dogs, etc.
Things are good. Life is beginning to feel more and more normal. I have 3 weeks to get myself ready to go back to school, and 4 weeks to get Abby ready. One thing that I've realized this past week is that I wish I hadn't taken my life before the heart transplant for granted. Things that didn't really matter, used to seem big.....now I know better. I look at how easy things used to be, and I wish I would have realized this at the time. I guess it's just a matter of stepping back and putting things in perspective. Although we will never have that "easy" back, things can still be good now.....and they are.
Sunday, October 9, 2011
Tuesday, October 4, 2011
Home......at last, and it feels good :)
I am typing this from my own couch, in my own living room, in my own house, and it feels good. We are finally home. I know I went a whole week without a post, last week just wasn't a good week. Have you ever had those weeks when you just don't feel like anything is going right? I had one of those and I couldn't think of anything positive to say on the blog, so I just didn't say anything at all. I think with Abby being on house arrest, plus the anxiety I was having about her cath/biopsy yesterday, plus she was feeling sick all week, plus the stress of trying to get moved back in our house and out of our Sugarhouse house, it was just a little too much and it threw me into a funk; but I feel so much better now!!
Yesterday was a good day. The docs told us that Abby's cath looked amazing, her pulmonary hypertension is much improved. She also had a clean biopsy! They decided that last week she probably just had a little stomach virus, but she's feeling better now. Her whilte blood count is still low, that was the only bad news, so we're back to house arrest. We just can't have a lot of visitors until it gets back to the normal range! This is hard for Abby, she just wants to be with her friends! We get to be in St. George all the way until her clinic visit on October 17th....almost 2 full weeks!!! Abby loved pulling into our driveway today and seeing the balloons and banners on the garage and the front door! Big thanks to grandma and Meri and Rich and the kids for that! I was lucky enough to come home, drop the kids off, and go to a party with my friends! I needed some time to do something for myself and it was so good to see friends and just to have fun and some adult conversation for a while. It was the perfect welcome home! I have to say that we experienced another miracle this morning when I was packing the car. There was no way that the stuff we had left to pack was going to fit in my car, there was just too much....but somehow, it fit. There wasn't any extra room at all, it just fit perfectly! Thank goodness because I don't know what we would have done if it hadn't.
I'm so excited to be home, but there are many things I will miss about Salt Lake. I will miss the security of having PCMC so close, I trust them there now, they know Abby and what she's gone through. I will miss seeing all of our "heart friends." You all better stay in touch, we will miss you. I will also miss seeing my friends and family there. I've gone to lunch many times and had the opportunity to visit with many of my old friends, aunts and uncles and cousins. Lots of people I haven't seen in a while. I will really miss you, please call whenever you're driving through St. George....and it's not like we will never be back to Salt Lake, we'll still be there every two weeks! I'm just glad we missed the snow and cold, I hate that!!
I feel like we are now beginning the next step in our journey. Yesterday, all day long, I couldn't help feeling anything but gratitude. I'm so grateful for the doctors and the transplant team for understanding my need to get home as soon as possible. We were told that we wouldn't be able to go home for 4-6 months after the transplant...it's only been 2 1/2 and we are home. I was also feeling so grateful for Abby's donor family. I think about them every day, and even if they haven't chosen to contact us yet, I know that if it's meant to happen, it will. I'm still so grateful for the timing with all of this. I am home and still have about 3 weeks to heal and get settled before I need to return to work. I need this time, I'm not emotionally ready to teach school yet, but I can be by November 1st. I'm so grateful for Abby and Brittany and Brock-they are amazing kids and have been so strong through all of this, I can't help feeling like just sighing and saying, "we made it!" I'm grateful that I no longer ask why this had to happen. I've realized that it is probably something that I won't understand in this life, but someday I will know. I also know that the growth my kids and I have experienced the past 4 1/2 months is necessary, it has a purpose....this too will be revealed in the future. I'm grateful that every time I've felt like I've been pushed to my breaking point, that even just one more thing will be too much, I've been reminded that I'm not in this alone, He has been there every step of the way and knows how much I can handle. I have a lot to be grateful for. Every day we have with Abby is a gift, in fact, every day we have at all is a gift. I hope I can always live my life remembering to be grateful for that gift! It's good to be home, it just feels good.
Yesterday was a good day. The docs told us that Abby's cath looked amazing, her pulmonary hypertension is much improved. She also had a clean biopsy! They decided that last week she probably just had a little stomach virus, but she's feeling better now. Her whilte blood count is still low, that was the only bad news, so we're back to house arrest. We just can't have a lot of visitors until it gets back to the normal range! This is hard for Abby, she just wants to be with her friends! We get to be in St. George all the way until her clinic visit on October 17th....almost 2 full weeks!!! Abby loved pulling into our driveway today and seeing the balloons and banners on the garage and the front door! Big thanks to grandma and Meri and Rich and the kids for that! I was lucky enough to come home, drop the kids off, and go to a party with my friends! I needed some time to do something for myself and it was so good to see friends and just to have fun and some adult conversation for a while. It was the perfect welcome home! I have to say that we experienced another miracle this morning when I was packing the car. There was no way that the stuff we had left to pack was going to fit in my car, there was just too much....but somehow, it fit. There wasn't any extra room at all, it just fit perfectly! Thank goodness because I don't know what we would have done if it hadn't.
I'm so excited to be home, but there are many things I will miss about Salt Lake. I will miss the security of having PCMC so close, I trust them there now, they know Abby and what she's gone through. I will miss seeing all of our "heart friends." You all better stay in touch, we will miss you. I will also miss seeing my friends and family there. I've gone to lunch many times and had the opportunity to visit with many of my old friends, aunts and uncles and cousins. Lots of people I haven't seen in a while. I will really miss you, please call whenever you're driving through St. George....and it's not like we will never be back to Salt Lake, we'll still be there every two weeks! I'm just glad we missed the snow and cold, I hate that!!
I feel like we are now beginning the next step in our journey. Yesterday, all day long, I couldn't help feeling anything but gratitude. I'm so grateful for the doctors and the transplant team for understanding my need to get home as soon as possible. We were told that we wouldn't be able to go home for 4-6 months after the transplant...it's only been 2 1/2 and we are home. I was also feeling so grateful for Abby's donor family. I think about them every day, and even if they haven't chosen to contact us yet, I know that if it's meant to happen, it will. I'm still so grateful for the timing with all of this. I am home and still have about 3 weeks to heal and get settled before I need to return to work. I need this time, I'm not emotionally ready to teach school yet, but I can be by November 1st. I'm so grateful for Abby and Brittany and Brock-they are amazing kids and have been so strong through all of this, I can't help feeling like just sighing and saying, "we made it!" I'm grateful that I no longer ask why this had to happen. I've realized that it is probably something that I won't understand in this life, but someday I will know. I also know that the growth my kids and I have experienced the past 4 1/2 months is necessary, it has a purpose....this too will be revealed in the future. I'm grateful that every time I've felt like I've been pushed to my breaking point, that even just one more thing will be too much, I've been reminded that I'm not in this alone, He has been there every step of the way and knows how much I can handle. I have a lot to be grateful for. Every day we have with Abby is a gift, in fact, every day we have at all is a gift. I hope I can always live my life remembering to be grateful for that gift! It's good to be home, it just feels good.
Monday, September 26, 2011
Awesome music festival, not-so-awesome clinic appointment today
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.
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.
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
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