This photo was taken this month as we were heading to my cousin's wedding.
Tuesday, September 30, 2008
Tuesday, September 23, 2008
Asked, answered & scheduled
Round Two: Our prayers have been answered regarding Mariah's surgery!
Two days prior to Mariah’s scheduled surgery on September 18th to implant an ICD (implantable cardioverter defibrillator), we received a phone call telling us Mariah’s surgery was cancelled. Our insurance company was refusing a preauthorization for the surgery, stating it “wasn’t medically necessary.” Uh, yeah, right! Big Joke! A surgery to help preserve the life of a 17yr old isn’t medically necessary?!? Wow. I wonder how a person can determine that and sleep soundly at night.
Since Mariah's pediatric EP was on vacation until the day she was supposed to have surgery, we had to wait for him to return to the office to appeal the denial with the insurance company medical director. The afternoon of Tuesday, September 23rd was filled with numerous phone conversations between myself and the EP's office. The first call the EP indicated he didn’t have a huge amount of hope of our insurance approving it due to this company’s reputation. He said our insurance company is notorious for being very difficult to work with. He advised us we had a couple of options, but none as definitive as this surgery and device that will protect Mariah’s life...we could pursue genetic testing (25-30% who test negative still have the disorder, the genes causing their LQTS just haven't been identified), waiting until she looses consciousness on the insurance’s terms, etc. The EP said he would contact our insurance company’s medical director and if we didn’t hear anything within the next week, to call him again to see if any progress had been made in the appeal. I phoned Mariah at school and left her a voicemail to let her know the status of things and just told her to hope and pray ~ as she had been anxiously awaiting any news. What was meant to happen would happen. Less than an hour later, I received a phone call from a person in the office who said “we have a tentative, unofficial approval for surgery” but we needed to wait until it was official. Approximately 10minutes after that phone call, Mariah’s EP called me directly and said, “we have an approval, our office will take care of all the details and you don’t need to worry about anything”. It is now scheduled for October 6th. A good source of information can be found at: http://www.sads.org/
Please keep Mariah in your thoughts & prayers for her to have continued peace about the decision to have this done and that she will heal quickly. She really has a great attitude about it and doesn’t seem concerned with the scarring and bump this will cause. She has chosen to have it placed under the muscle which has a more uncomfortable recovery but it will have increased protection and will be less noticable. A person we’ve become acquainted with who has an ICD generously offered to have her photographer husband take photos of what her ICD area looks like and it was helpful for Mariah to see this. This lady is the same height and weight as Mariah so it gave her a very good idea of how her body could appear after it is all healed.
Mariah wants to spend the night before in Portland to avoid having to wake up at 2:30-3:00am the morning of her surgery (she’s a typical teen with how long it takes her to get ready in the morning...). As long as there is a room available, we hope to stay at the Ronald McDonald House the night prior to her surgery and have a room there until she comes home (for Steve & any of the kids that stay up there ~ I will be staying on a cot in her hospital room with her). We were told to expect at least a 2-3day hospital stay, depending on how well she does.
Mariah and I were talking about her surgery the other night and she is actually “excited” for it. Not excited to have surgery and all the recovery that will be involved, but she’s “excited to have peace of mind and know I am protected all the time.” She told me it will relieve a lot of the worry she has day to day and I realized that even though she doesn’t speak of being worried about her heart very often, it is definitely on her mind a lot. She said she’s thankful for her dad and I allowing her to make the majority of the decision about it. She told me she is glad she could finally take control of something regarding her health, since so much has always been outside her control. I was in tears when she said, “you know mom, if something happens to me before I have my surgery or during my surgery, it will be God’s will and I’m okay with that”. I continually learn so much from these children. God is amazing.
Thank you for keeping Mariah in your thoughts and prayers. She is such a blessing and we just wish her complete peace and quick healing as she goes through this surgery and recovery.
Two days prior to Mariah’s scheduled surgery on September 18th to implant an ICD (implantable cardioverter defibrillator), we received a phone call telling us Mariah’s surgery was cancelled. Our insurance company was refusing a preauthorization for the surgery, stating it “wasn’t medically necessary.” Uh, yeah, right! Big Joke! A surgery to help preserve the life of a 17yr old isn’t medically necessary?!? Wow. I wonder how a person can determine that and sleep soundly at night.
Since Mariah's pediatric EP was on vacation until the day she was supposed to have surgery, we had to wait for him to return to the office to appeal the denial with the insurance company medical director. The afternoon of Tuesday, September 23rd was filled with numerous phone conversations between myself and the EP's office. The first call the EP indicated he didn’t have a huge amount of hope of our insurance approving it due to this company’s reputation. He said our insurance company is notorious for being very difficult to work with. He advised us we had a couple of options, but none as definitive as this surgery and device that will protect Mariah’s life...we could pursue genetic testing (25-30% who test negative still have the disorder, the genes causing their LQTS just haven't been identified), waiting until she looses consciousness on the insurance’s terms, etc. The EP said he would contact our insurance company’s medical director and if we didn’t hear anything within the next week, to call him again to see if any progress had been made in the appeal. I phoned Mariah at school and left her a voicemail to let her know the status of things and just told her to hope and pray ~ as she had been anxiously awaiting any news. What was meant to happen would happen. Less than an hour later, I received a phone call from a person in the office who said “we have a tentative, unofficial approval for surgery” but we needed to wait until it was official. Approximately 10minutes after that phone call, Mariah’s EP called me directly and said, “we have an approval, our office will take care of all the details and you don’t need to worry about anything”. It is now scheduled for October 6th. A good source of information can be found at: http://www.sads.org/
Please keep Mariah in your thoughts & prayers for her to have continued peace about the decision to have this done and that she will heal quickly. She really has a great attitude about it and doesn’t seem concerned with the scarring and bump this will cause. She has chosen to have it placed under the muscle which has a more uncomfortable recovery but it will have increased protection and will be less noticable. A person we’ve become acquainted with who has an ICD generously offered to have her photographer husband take photos of what her ICD area looks like and it was helpful for Mariah to see this. This lady is the same height and weight as Mariah so it gave her a very good idea of how her body could appear after it is all healed.
Mariah wants to spend the night before in Portland to avoid having to wake up at 2:30-3:00am the morning of her surgery (she’s a typical teen with how long it takes her to get ready in the morning...). As long as there is a room available, we hope to stay at the Ronald McDonald House the night prior to her surgery and have a room there until she comes home (for Steve & any of the kids that stay up there ~ I will be staying on a cot in her hospital room with her). We were told to expect at least a 2-3day hospital stay, depending on how well she does.
Mariah and I were talking about her surgery the other night and she is actually “excited” for it. Not excited to have surgery and all the recovery that will be involved, but she’s “excited to have peace of mind and know I am protected all the time.” She told me it will relieve a lot of the worry she has day to day and I realized that even though she doesn’t speak of being worried about her heart very often, it is definitely on her mind a lot. She said she’s thankful for her dad and I allowing her to make the majority of the decision about it. She told me she is glad she could finally take control of something regarding her health, since so much has always been outside her control. I was in tears when she said, “you know mom, if something happens to me before I have my surgery or during my surgery, it will be God’s will and I’m okay with that”. I continually learn so much from these children. God is amazing.
Thank you for keeping Mariah in your thoughts and prayers. She is such a blessing and we just wish her complete peace and quick healing as she goes through this surgery and recovery.
Tuesday, September 16, 2008
Postponed
Mariah was scheduled for her ICD placement on Thursday, September 18th. This afternoon, I received a phone call from the EP office saying the insurance company was refusing to give pre-authorization for it as they were determining it to NOT be medically necessary. The EP office has done all it can up to this point so her surgery was cancelled for tomorrow & tentatively rescheduled, pending insurance approval. The EP is out of the office until Thursday AM and they will put him onto appealing it to the insurance company & discuss it with the medical director; however, at this point, the office staff can’t do anything more about it. The EP is on vacation. Needless to say, Mariah is extremely disappointed with this as she was completely ready for it. The timing was perfect, in our eyes, due to school, etc. I keep reminding her that this delay is temporary & her EP will help us get it figured out when he’s back in the office. We are also taking this time to realize it needs to happen on the Lord's timing, not our own. God's timing is always perfect.
Now, we are just waiting...
Now, we are just waiting...
Friday, September 05, 2008
Less than 2 weeks
Mariah's surgery will be in less than 2 weeks. She is actually anxious to "get it over with and start the rest of my life with less worry". I'm continually surprised by her maturity. Gotta love that girl!
The nurse case manager from Mariah's cardiologist's office sent over a referral to the Ronald McDonald House (RMH) at the hospital so we will be able to have a room there for up to 4 days. The RMH's are wonderful in that it is only $20/night and have complete facilities for families, including an amazing kitchen, teen room, laundry room, family room, etc, in addition to a private bedroom & bathroom for each family (we stayed at one when Josiah was born prematurely). Mariah wants to spend the night before her surgery in Portland to avoid needing to leave our home at 4am and as long as there are rooms available, we will be able to stay at the RMH (this particular RMH doesn't typically have to turn families away). I think the younger children will come home after the surgery to stay with grandparents and having a room at the RMH will allow Steve to be able to stay there as long as nothing pressing comes along with our business. I will be staying in Mariah's hospital room with her; however, having somewhere to go to cook a meal or rest while daddy stays with her will be a blessing.
The younger children want to be at the hospital when Mariah has her surgery and I am very thankful they want to be there for their big sister. We are so very fortunate to have an amazing extended family who are more than happy to help us out during this time.
The nurse case manager from Mariah's cardiologist's office sent over a referral to the Ronald McDonald House (RMH) at the hospital so we will be able to have a room there for up to 4 days. The RMH's are wonderful in that it is only $20/night and have complete facilities for families, including an amazing kitchen, teen room, laundry room, family room, etc, in addition to a private bedroom & bathroom for each family (we stayed at one when Josiah was born prematurely). Mariah wants to spend the night before her surgery in Portland to avoid needing to leave our home at 4am and as long as there are rooms available, we will be able to stay at the RMH (this particular RMH doesn't typically have to turn families away). I think the younger children will come home after the surgery to stay with grandparents and having a room at the RMH will allow Steve to be able to stay there as long as nothing pressing comes along with our business. I will be staying in Mariah's hospital room with her; however, having somewhere to go to cook a meal or rest while daddy stays with her will be a blessing.
The younger children want to be at the hospital when Mariah has her surgery and I am very thankful they want to be there for their big sister. We are so very fortunate to have an amazing extended family who are more than happy to help us out during this time.
Wednesday, September 03, 2008
Reading, writing & arithmetic...
Today was the start to yet another school year! Mariah decided to remind me that she will "only have one more 1st day of school after today". I asked her to not remind me of that sad, but true fact! Ugh!
The photo below shows all three girls just before we left for school on the first day (sporting their new dress code/uniform school clothes - they have a large selection of vendors to choose clothes from). Steve and I always go to the school on the first day. Last year, Mariah drove all the girls to school in her "new to her" car and that was the plan this year (with dad & I taking our own vehicle). That plan didn't happen as Mariah's car had a VERY flat tire when they went to get in the car. Dad was very helpful in getting that flat fixed and her car over to the school prior to the end of the school day.
From left to right, Mariah (11th grade), McKenna (7th grade), Miranda (3rd grade), displaying their new haircuts:
The photo below shows all three girls just before we left for school on the first day (sporting their new dress code/uniform school clothes - they have a large selection of vendors to choose clothes from). Steve and I always go to the school on the first day. Last year, Mariah drove all the girls to school in her "new to her" car and that was the plan this year (with dad & I taking our own vehicle). That plan didn't happen as Mariah's car had a VERY flat tire when they went to get in the car. Dad was very helpful in getting that flat fixed and her car over to the school prior to the end of the school day.
From left to right, Mariah (11th grade), McKenna (7th grade), Miranda (3rd grade), displaying their new haircuts:
Really?
Can it really be the end of summer vacation? Has three months really gone by that quickly? Apparently so since the girls started back to school today. Wow. I am SO not ready for the girls to go back to school. I know of many moms who look forward to the start of school and their children being at school during the day. I'm not one of those moms, though. I LOVE my time with my children. I admit I am very selfish when it comes to my time with them. I dread the start of school every year because it means I have less time with the girls when school starts. We have had a very simple, but very enjoyable summer. Each of the girls have told me this has been the best summer of their lives....simple joy! I left my job in the beginning of July and we've had such an amazing summer with time just spent with family. It doesn't get any better than that!! After Mariah's surgery, I will seek another job, but right now I plan to focus on my family and Mariah's recovery.
Tuesday, September 02, 2008
The long and the short of it....
Today was the end to my girls' long hair ~ at least for now! Yikes!
Months ago, they made the choice to grow their already long hair out even more and donate it to the "Locks of Love" ( http://www.locksoflove.org/ ) organization. They each had over 10" of their hair cut and are now sporting some very cute short hairstyles.
This photo shows the initial cut of Mariah's ponytail:
And here is her ponytail and the new length of her hair, before her hairstyle was completed:
And below is the hairstyle Mariah chose:
Here is McKenna just prior to the intial cut (I'm having trouble uploading photos, and I'm not sure why this one is smaller thanthe rest):
Miranda as her new 'do is being completed:
Below are all three girls showing their completed hairstyles.
Months ago, they made the choice to grow their already long hair out even more and donate it to the "Locks of Love" ( http://www.locksoflove.org/ ) organization. They each had over 10" of their hair cut and are now sporting some very cute short hairstyles.
This photo shows the initial cut of Mariah's ponytail:
And here is her ponytail and the new length of her hair, before her hairstyle was completed:
And below is the hairstyle Mariah chose:
McKenna was much more enthusiastic to have this haircut and give the donation to Locks of Love than it appears in this photo...I think I caught her off-guard with the photo:
Below is a photo taken just prior to Miranda's initial cut:
Miranda as her new 'do is being completed:
These are the ponytails that will be mailed to Locks of Love this week:
Below are all three girls showing their completed hairstyles.
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