New Heart News

So, Kiley had another cardiology appointment this morning. Jason and I knew she had been getting more and more tired lately, which the echo confirmed. Since her mitral valve is not working properly the blood has been backing up into her Left Atrium. This has caused it to grow over time. 

Each echo the cardiologist has seen it getting slowly bigger and bigger. Thankfully we can wait until after our trip but she is planning on doing a procedure called Cardiac Catheterization. 

She also is bringing Kiley's case to her team of cardiologists to do a team approach and get other expert opinions on how to proceed with her case. It is not a cut and dry situation. Her desire is to wait until Kiley's heart is at adult size to fix her mitral valve, but that is what is causing the pressure change in the atrium. 

Please pray for wisdom as the doctors work together to do the right thing. When they do the procedure above, should her coarctation need to be expanded they can balloon it as they couldn't fix it completely. When they did the surgery before they couldn't fix it 100% because the section was too long. 

If her left atrium gets too big then it will start pushing blood back into the pulmonary veins and arteries and that would lead the blood into the lungs. This would cause her body to think she has pneumonia or asthma. 

Thank you for your prayers of wisdom. Also, pray for her because she didn't like this news. Thankful for God's plans and that He is in control. I love her doctor and appreciate her working to find the best plan for Kiley.

Shone's Complex

Our daughter went in for her 8th annual checkup,in April, and as with the previous year had some high blood pressure. The doctor the year before did not think much of it because there was a TON of different situations our family was going through at the time.

So, they checked the pulse in her femurs and could barely feel one. Therefore he sent us to a pediatric cardiologist. At that appointment they could not find a pulse in her legs and decided to do an echocardiogram. This revealed multiple problems with her heart:
Shone's Complex:
1) Parachute mitral valve (mitral valve stenosis)
2) Ventricular septal defect (hole in heart)
3) Bicuspid aortic valve/aortic insufficiency aortic valve
4) coarctation of Aorta
5) small left ventrical

Shone's Complex:

1) Parachute mitral valve (mitral valve stenosis)

2) Ventricular septal defect (hole in heart)

3) Bicuspid aortic valve/aortic insufficiency aortic valve

4) coarctation of Aorta

5) small left ventrical

From there we had to have MRI/MRA of heart and brain to make sure the details of what was going on.  At first they had told us that she needed Open Heart Surgery (OHS) and then after the MRI they decided to go a different route.  They decided to fix her Coarctation of the Aorta because it was almost completely closed, getting no blood to her legs and then see if the pressure change fixed the other problems. 

We decided to go with that.  The month of June was difficult considering if she got her heart rate up too much she could just drop dead (trying not to be too graphic, but honest).  We relied on the fact that our God had kept her safe these eight years without us even knowing she had the problem, He could keep her safe this rest of the way.

On July 6th, after gentic testing which ruled out Turner's Syndrome and Noonan's Syndrome, she went in to have her surgery.  She was such a trooper.  We went to two different doctors one at Lutheran General, Dr. Ilbawi and met with a team at Children's Memorial, Dr. Backer.  After lots and lots of prayer (by many people) we decided to go with Dr. Ilbawi, and could never be happier. 

Side note: Dr. Ilbawi is one of the most focused and humble doctors I have met.  He did not seek to platform himself, even we my husband and I asked him to compare himself with the other doctors.  He was gentle, but honest, as well informative.  He was patient with all of our questions and concerns and did not make us feel like we were dumb either.  His Cardiac Nurse Natalie Rudolph is amazing and a great support who will answer all the questions you need and, like Dr. Ilbawi, make you feel comfortable the whole way.  My daughter felt so comfortable with her that she walked to the operating room holding Natalie's hand.

Here is a picture of my daughter with Dr. Ilbawi, she never met him and to this day has not as he likes to focus on the procedure at hand.  Then once a year he has all the kids that he has performed surgery on for a family gathering with him. 

The next post I will post the day of her surgery for the repair of the coarctation.  This will not be her only surgery, but God knows all and knew this is all I could handle at this time.  It was enough. 

My Organized Homeschool Schedule...yeah, right!

So, I saw this picture on Google and fell in love with it.  Why, because that is how I feel.  Especially at the end of our homeschool year.  At the beginning, yeah I had it all together (at least it looked that way!).  But, truly it is hard to be organized trying to teach four kids, in three different grades.  So, as I do EVERY YEAR at the end of school I search the blogs.  For what, you ask?  For more ideas on how to coordinate our schooling, to make it better.  I take what I learned from last year, and try and tweak it.  I ALWAYS get to March or April and start DYING!  Literally.  I drop all my good ideas, creative incentives and just push toward the goal we all have...to be done!  I have many different ideas I have done in the past: 
*Progress Report Night
*Revised Workbox Idea
*Summary of things learned a couple of years ago

This year I started out with a new idea and it was great, but hard to keep up.  So, I switched to another one during the year.  Here is what I learned this year.  Hopefully, it will help you, if not be entertained.

I started this year with a chart (thought I had a picture, but can not find it. Will have to post when I do.) that my kids could move over a subject tab (that had velco on the back) to the done section.  I did this so they could keep track of their progress and then they wouldn't keep asking me if they were almost done.  This worked great, but I only got two done in time for school to start and the other two never got one...yeah, remember I am only semi-organized. 8-)  So, since I didn't have ones for all the idea went by the wayside.  So, I also found that one of my students (I won't label which one) kept saying he was done with his work, but would not complete all said tasks.  I would not figure this out until I would grade everything at the end of the week.  So, then I had to come up with a new system.  They all had a notebook and I would write the assignments in the notebook and then as they accomplished the work I would grade it and check it off.  Then they could get a sticker at the top of the page, should this happen they would get their three school dollars for the day.  At the end of the week, the school store would open and they could buy items (priced differently) at the store.  This worked great and if they didn't listen then I would take a school dollar away.  This worked great until March...then I just wanted to plow through and didn't enforce it so much...I paid for it.  We will do this next year. 

These are some of my ideas, and I have been researching some more.  I am always open to hearing new ideas.  Please let me know yours.  I will be posting soon about how I scheduled things.  It wasn't perfect, but maybe it would help you out in your scheduling.  That is what makes us all better picking ideas from others to work.  Now, if I could just finish what I start I would be on the right track!  One day at a time!

Building Character

"The world of the [very] young...[is] a place where good and evil are clearly stamped. It's a place where the better part of human nature triumphs over tragedies, and where innocence rides high." --Rosemary Wells

Building Character, it seems so hard these days. I recently was skimming for more information in A Well Trained Mind (I book I have come to love, I don't use everything in it, but it has helped me a lot!) when I got to the chapter about building character. There were a few books that caught my eye. I researched them and found this one. So I have taken it along with me to the library. It lists different books that, through the stories themselves, build character. The author discusses how some of the books are a great starting point for discussions, where as others are ones that the stories speak for themselves.

"The growth of the imagination demands windows--windows through which we can look out at the world and windows through which we can look into ourselves. The old stories were windows in just this way." --Katherine Paterson

The book is broken into different categories. I have started with the Picture Books. It is funny how there are some really great books out there you didn't even know exist. I strongly suggest if you don't have this book, get it. Here are a few that we have come across that have a really liked:

Brave Irene by William Steig

The Little House by Virginia Lee Burton

Owl Moon by Jane Yolen

The Runaway Bunny by Margaret Wise Brown

Where is the balance?

How do you balance life?

I know it is a process, but how do YOU balance life?

I have been working and trying to figure out how to do that forever.
Something that is really important to me is my relationship with God. I have tried to make that a priority the past two years. I hate to admit it, but when the kids were young I used them as an excuse to not have my conversations with my creator and friend. I didn't realize how far I had gotten in my relationship. Just like any relationship, when you don't talk with the other person, when you don't spend time with them you are going to feel distant when you see or talk with them again.

Well, two years ago I realized that I was not doing what I should to do my part in keeping my relationship with God prioritized as I should. I also was not doing good about working out then. So I had tried to start getting up to work out . So I made a pact with myself, if I was able to get up and workout, then I should be able to make the time for God. So if I worked out, then I made sure I had my quiet time.

Pretty soon I was doing my workouts for 30-40 minutes and then the kids would get up and I would have like 10 minutes of time with God (while tending to my children). Yeah, I don't have to explain that doesn't work. This summer I have been going through a bible study with a couple of other women about managing our lives. Through this I realized that yes, I was making time for God, but what kind of time was I making?

So, for the past few months I have been making sure that I have time with God and then the workouts. So now, it is the workouts that go by the wayside if I happen to wake up later or run out of time. Because of homeschooling I really like to start breakfast at 7:00am and school at 8:00. So, I have a time limit.

THE QUESTION IS:

How do you balance both?

Since I have not been able to workout as much, my physical feeling has been a lot worse. I get so much energy from making sure I have my workouts. It makes me feel better, it makes me have more discipline and self-control in regarding to what and how much I eat. BUT, I also have enjoyed making sure I have my time with God too. Both things that I have found I really need to do in the morning or else they don't get done.

What are your thoughts on this?

How do you handle this in YOUR life?

I would love to know!

Should I find anything out in my journey I will let you know.

Boys, boys, boys...

So, I grew up with all girls. I always wanted a brother, but didn't have any. My son, J--, he just confuses me so much. I keep trying to figure out what is a boy thing and what is just not a boy thing! It is at these times that I wish I had a brother so I knew. This is a new thing for me. I hope we do it right! Thank goodness that God tells us that we can ask Him for wisdom. I seem to be doing that a lot lately.