11:20am ~ October 6, 2008

Mariah's EP just came in to report she's out of surgery and it all went very well. She is in the recovery room at this time. Her EP was successful in placing the ICD under her pectoral muscle. He was quite pleased with the aesthetics of her device placement. He said it was barely noticeable when she was laying flat, except for a little more fullness. Even the cardiac nurse case manager saw it in the OR and thought it looked great. Over time, even the fullness should decrease slightly since inevitably there is swelling. Her EP gave a paper copy of the xray showing the leads to Mariah to help satisfy her curiosity. He also gave us a demo ICD to keep. Mariah's device is about 10% smaller than the one he gave us but it at least gives her an idea of her ICD looks like.

She should be in the recovery room for about an hour. We will be heading down to the waiting room outside recovery and as soon as she is awake they will let Steve and I go in to see her.

Just to give an idea of what the device Mariah has had implanted today, the photos below show the ICD demo model next to a an ink pen.

10:30am ~ October 6, 2008

Tammy, the cardiac nurse manager provided us another update. She has been great to keep us posted on what is happening. Our sweetheart's surgery is progressing very well still. The device has been implanted; however, the cardiac nurse manager still wasn't sure if it was placed under or over the muscle yet. We will find out before too long, anyway, so it really isn't necessary for us to know those details at this time. Right now the EP is testing the device. This means he is putting her heart into a fatal arrhythmia to make sure the ICD is effective in shocking her heart back into a normal rhythm and the energy to produce the shock is adequate.

After the EP (pediatric electrophysiology cardiologist) comes into her room to give us a report on her surgery, we will be able to go down in a waiting room near the recovery room and most likely have the opportunity to sit with her part of the time she's in recovery.

The EP said she should probably avoid pursuing a career in arc-welding and if she decides to become a mechanic she won't be able to work on the alternator in the cars. Our booklet says she should NOT operate a chainsaw and should NEVER have a stun-gun or a taser gun used on her. There goes her career as a criminal! No tasers...bummer! Guess she will need to choose another career path (hee, hee!!). Joking aside, she can't ever have an MRI. An MRI will destroy her device and will cause the leads in her heart to act similiar to a microwave and start "cooking" her heart tissues. We will be ordering a medical alert bracelet in order to alert any medical professionals to her Long QT Syndrome and ICD in the case of her being unconscious in the ER, etc. Oh, she will also trigger the security/metal detector systems in airports. She will carry a card in her wallet to explain why she set the alarms off so the TSA doesn't mistake her for a terrorist!

More later...

9:40am ~ October 6, 2008

The cardiac nurse case manager gave us an update on Mariah at 9:40am. Everything is going great. The leads have been placed in the atrium and ventricles of her heart. When the nurse left the OR/cath lab the EP was starting on creating the pocket for the ICD device. It was still undecided whether it would be placed under the muscle or over it. She's tolerating surgery very well and we she might be out of surgery around 11am.

The wi-fi signal is excellent in her room whereas down the hall in the family lounge it is very poor. Once Mariah is feeling a bit better, it will be nice for her to have a good connection so she can check her email, update facebook, etc, if she is up to it.

We are SO grateful to have such an amazing extended family. When we left the family lounge, there were at least 15 people from our family waiting, including my parents, of course. Steve's parents will be here this morning. We are so very thankful for ALL of our family and their support. We are blessed.

More later....

8:24am ~ October 6, 2008

Mariah has just been taken back for surgery. She was very frightened but ready for it to be done and over with. We still aren't sure if her ICD will be over or under the muscle. The pediatric EP will make that decision when he has her in the OR and is able to determine the best placement for it. It's estimated she will be in the OR for 2-3 hours. We are getting ready to head to her room since we should receive an update from the cardiac case manager around 9:30am and they've asked us to wait in her room rather than the waiting room so the doctors and nurses could locate Steve and I easily. She was a bit disappointed to be sharing a room with another patient but seemed okay once she realized I would still be able to stay in the room with her. More later....

7:30am ~ October 6, 2008

~Mariah has given permission and approval for ALL the photos and information posted~

~~~~~~~~~~~~~~~~~~~~~

Mariah with her "Love Bear" she received during the admission process at the hospital.

Mariah and her nurse.

Mariah and her friend, Bobby, before surgery.

October 5, 2008 ~ 4:30pm arrival

We've arrived at the Ronald McDonald house which means, yes, there was vacancy for us. We are so thankful to have a room because in the 6hrs from when we called to check room availability, attend church, eat lunch at home and take Miranda to my parents' house, they were filled to capacity. Our room is an "Oregon Ducks" themed room with two double beds and a roll away brought in for extra sleeping space. Since our room is decked out with "Oregon Ducks" there are lots of ducks & Oregon Ducks logos around as well as quite a few rubber duckies as decorations that Josiah can play with.

The kids have been enjoying the "teen room" with foosball and airhockey, television, computers and sofas for lounging. The dining room is large, open and has a train on tracks suspended from the ceiling. Josiah loves pushing the button to watch it go chug-a-chug-a-choo-choo!! In one of the family spaces, there is a large screen tv the kids enjoyed watching movies on this evening.

Our dinner at Olive Garden was a nice treat and I think we all over-indulged...but it was oh, so good!

Sisters

>McKenna< >Mariah<

Friends...

Sisters...

Sweet...

Loving...

Beautiful...

Funny...

Joy...

13 and 17...

Where did the time go?

I love you girls!

How do you write?

Mariah Roberts? ~~ ~~ ~~ in Korean?

Mariah came home from school with this new artwork on her arm ~~ courtesy of Amy, Mariah's friend (a foreign exchange student)

The whole gang

This photo was taken this month as we were heading to my cousin's wedding.

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.

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...

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.

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:

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.

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):

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.

Potentially shocking ~literally~~

In approximately three weeks, my first born child, Mariah will be entering the hospital to have an ICD placed. ICD is an "Implantable cardioverter defibillator". This surgery is due to her heart condition known as LQTS (long QT syndrome). Currently we have a portable defibrillator we carry along with us.

Having her ICD implanted will eliminate the need for her AED, as well as allow her more freedom in life. She will never be allowed to participate in contact sports due to the risk of impact to the device and affecting the leads, but she will be able to continue with her high school softball career.

As a mom, I've wanted her to have the protection provided by this device implanted for years. Mariah's EP (electrophysiology cardiologist, Dr LeGras) was previously hesitant to implant the device. As a result of some recent events, he said it would be "reasonable to not place the device" but would be "completely appropriate" to have the device implanted. Since I'm her mom, I could trump her decision if she chose to not have this done....but, since she's 17yrs old and basically an adult and grown lady I made the choice to let her make the final decision. It is her body, her heart, her life and ultimately she has to live with the choices she makes. She chose to have the device implanted and shortly thereafter told me she felt much relief in her decision. I am VERY proud of her....not because she made the choice **I** would have made for her, but rather because her decision was based on very mature reasons.

A bit of information regarding an ICD:
~it will be implanted in her chest, similar to where a pacemaker would typically be placed
~she has a choice of on top of the pectoral muscle or below it. Below the muscle will result in a more intense recovery, but the device will be less visible.
~if she enters into an arrhythmia that is potentially fatal, this device will "shock" her heart muscle into an appropriate rhythm -- something very painful if she's awake during the shock.
~there is a very real chance of "inappropriate shocks", meaning it could shock her heart when it is not needed and while she's awake
~the ICD could need replaced in seven years (or sooner if she requires "shocks").

BUT....this will protect her life and protect her. We are SO incredibly blessed that we have this option!

I might add more to this post in a few days, but wanted to let our family and friends know what was transpiring.

Short summer slideshow

Make a Smilebox photobook

Formal 2008 ~Mariah~

The above photo is from Mariah's 2008 school formal. Once again, I had the wonderful pleasure of being a chaperon (with Mariah's encouragement and approval). The evening was so incredibly wonderful. The private school she attends doesn't typically have dances at the formal. Instead, they have a wonderful formal dinner. This year, there was a parent sponsored dance after the formal dinner. It was the most amazing thing. The dance was a traditional ballroom dance, complete with dance cards. Many of the students participated in appropriate dance etiquette and ballroom dance lessons for several days prior to the formal. The dance etiquette included instructions regarding not filling their dance card with the same person more than several times. It was the sponsoring parents who also helped discourage exclusive coupling during the dances. I can honestly say that I have never been to a dance (including all the dances I attended while I was in school) where the students had this much fun!

The photo below is of Mariah entering the stretch Excursion limo rented for the ride to the formal. It was filled with Sophomores. One funny story from the evening was the limo ended up getting lost on the way to the formal. Once the driver found the way, it entered from a direction that was impossible to make the turn into the driveway. Ultimately, it ended up driving past the driveway and backing down the long driveway as the limo was much too long to navigate that corner!





Mariah's school has a "formal court" (think prom court) which includes a male & female student from each of the attending classes in the high school. Each grade has different titles for those in the court who are voted by their peers. This year, Mariah shared the honor of "countess" for the sophomore class with a friend of hers (they tied). I've posted a photo of Mariah in the formal court (she's on the arm of the gentleman in the black tuxedo (who was not her date):

Back again!

I will probably end up posting posts that are not in chronological order as I have time. I truly want to get back into blogging on a regular basis...and hope to make that happen!

Just a quick warning that this post is very long and has many photos ~~

Wow, what a long time since I've posted on this blog. So much has changed and yet so much stayed the same. I continue to be very blessed by my family and they are all doing great. If only I could slow down time. In approximately two weeks Mariah will be 17yrs old, McKenna will be 13yrs old and in two months time Miranda will celebrate her 9th birthday and Mr Josiah will be entering the "terrific" two's.

Steve's health is maintaining and continues to get a bit stronger as time goes on. In November, he went through his second total hip replacement. His blood disorder continues to be in remission and his last episode of pancreatitis was been almost an entire year ago! He has baffled the GI doctors as he has no known risk factors for chronic pancreatitis and yet he continued to to battle it on an ongoing basis for over two years. We won't question why it is no longer happening, we will just rejoice in the healing he has experienced.

The kiddos have enjoyed a great year. Mariah received her driver's license on her 16th birthday and about two weeks prior to getting her license she purchased a car on her own. She had been saving for quite a while and was so excited to have a vehicle all her own. I affectionately refer to it as the "white cloud" (instead of calling it a boat as she had done). It is a 1989 Buick LeSabre in remarkable great condition. It drives very well and I'm comforted in the amount of steel between her and the front in the unfortunate case of an accident. Below is a picture of the new owner of her first car, taken the day she purchased it:


McKenna is doing great, as always. She has truly become quite the sports girl! She plays soccer in the fall, basketball in the winter and softball in the spring. In the fall, she was on a junior high team at her school which consisted of 6-8th graders. She was so excited to be a starter in almost every soccer game and played most of each game, except when she injured her leg & was on crutches. That injury healed quickly and she was soon back to playing.


In the winter, she decided to play basketball for the first time. Again, it was a combined 6-8th grade team AND again, she was a starter in most of the games. At first, she was unsure if she wanted to play since it was a new sport for her, but in the end, she decided to give it a shot. She did a great job! At the end of the season awards, she was blessed to be awarded (in our opinion) the most important award - the "Christian Character Award". This photo below is of McKenna (in the red uniform) during the very first basketball game in our school's brand new gym:
Miranda continues to love school, enjoys reading and says she will always be my baby girl. She is such a sweetie and blesses us so much. At the end of school she received the "Highest Scholastic Achievement Award" for her 2nd grade class! In November 2007 we discovered she needed glasses. She looks so sweet in them! About two weeks ago, she took them off and placed them on the fish tank. It didn't take Josiah very long to locate them and test the strength of the ear pieces. Unfortunately, they didn't stand up to Josiah's tests and he ripped the ear piece right off. Thankfully, they were still under warranty and have since been repaired! Below is a photo of Miranda in her new, fashionable specs:This final photo is of Josiah (the white plastic sheeting behind him is the girls' homemade
slip-n-slide). He is such a loved and enjoyed little guy. He brightens the days of each of us and I am so very thankful to share my life with him:

~JOSIAH~

I just wanted to let everyone know that my plan is to keep most of the blog posts that are mainly about Josiah over at his blog at www.josiah-roberts.blogspot.com until he's about a year old. Around that time I plan to posting about him on this site, as I do the rest of our family members. That said, if you are interested in some updates and photos about our little man, please visit his site!

~Tracey