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.
Thursday, August 28, 2008
Tuesday, August 05, 2008
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):
Monday, August 04, 2008
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:
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:
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