Tuesday, September 27, 2011


Yesterday Ryan and I needed to bring the two youngest to the cardiologist for checkups.  Teagan had a pulmonary valve that wasn't working perfectly when she was born, but the doctors believed she would out grow it by two.  Her doc could still hear the murmur so we had to go check things out and thankfully she was given a clear bill of health and we were told that the sound persists, but the valve is working perfectly! I was so relieved as out of the five kids, four have had to see the cardiologist and now all the girls are cleared.

For Finn we are monitoring a more significant defect.  We are thrilled the little guy has grown even more, pushing 20 lbs at long last!  We told the cardio that he was being tested for elastin deficiencies related to his heart defect and cutis laxa which impacts multiple organs in the body including the skin, heart, lungs and gastrointestinal system.  She examined him and noted the same things the geneticist saw, his skin texture, his hypermobility and low muscle tone.  The form of cutis laxa they believe he has is very rare, and seeing it combined with his heart issue which we believe to be genetic is even more unusual.  I am glad we are getting the testing done so we now what might be coming down the path, sadly elastin is in almost all our organs and when multiple organs are impacted, we need to be vigilant in our care for him,  and proactive in his health.

Sadly when they did his echocardiogram we did not get the same good news that we did with Teagan's.  They measure the severity of his narrowing in his aorta using a gradient which correlates to pressure.  There are different levels of SVAS and while his is still in the mild range, his gradient as a whole increased 5 full points in less than 4 months.  With the rapid growth babies go through, we are anticipating this happening again and we may be looking at stepping up into the moderate range of his blockage when he goes back in February.  As I have the same heart condition, I know the importance of the gradient and had hoped his had remained stable, seeing such a big jump in such a short time frame worries me.  While I knew that surgery is more of a when and not an if, I really hoped he would be more like me and get to wait until he was well into adulthood to face the surgery, but it is not looking as promising.  The good part is he is still considered mild and there is the possibility that we will not see a change in February, but I believe we may be facing surgery before his tenth birthday and possibly even sooner than that if the gradient continues to rise or further impedes his valve from opening and closing properly.

The surgery he would need is pretty invasive.  It is open heart surgery and has all the complications and healing issues associated with that type of surgical intervention.  The surgery works well and is performed enough that I am confident he will be fine once it happens, but it just stinks knowing it is coming.  Add to that his other concerns, one of which is if the cutis laxa will impact healing for him, or if it will affect his lungs in any way (emphysema is common in kids) makes me a little scared, but we are focusing on the positive and will handle the rest when it comes at us.

Developmentally Finn is on track.  He pulls up on everything and cruises the furniture.  He self feeds, he plays well, he is reactive and silly, so the rest is secondary.  I wish I could express the joy he brings us every day, he has a huge smile with big squishy cheeks, he laughs and hugs and loves to be played with.  He is my snuggly baby, happy in my arms at any time and he finally, finally, FINALLY is sleeping a bit better!

Sunday, September 25, 2011

This week on Raising the Tribe

I have never been at a loss of stuff to blog, but lately time and appropriate, ie non-whiny blog fodder has been lacking.

So...here is what we have been up to.

Dad seems to be feeling better today which is a big relief, I am hoping this is a new trend because he is never ever sick and we were getting worried that the surgery caused more damage.

I took Finn for his blood test Friday.  He was less than cooperative.  We now get to wait 6-8 weeks for the results which we expect to confirm his diagnosis.  Then we wait to see how the disorder affects his body.  Oh and both babies have check ups at the cardiologist Monday, we know how to party around here.

Work has been busy, but they are finally giving us real vacation time which equates to five weeks off a year for me.  That is crazy since I am used to working on every vacation we go on, one of the many "joys" of working from home.  Needless to say, we leave in a few weeks for a trip to see a cute mouse and I will not be working for the first time in SIX years of family vacations.  I am already looking at what we can do next spring and summer, it is liberating!

Kids are all doing well, so well in fact that they are loud and crazed most of the time they are home which is making the mama have to work really hard to find the good parts of the day.  I know it is a phase, but they seriously need to stop fighting and being loud or I am moving into the shed out back.

We are again exploring places to live.  We like the idea of staying here for the kids, but to maintain the lifestyle we enjoy, and to keep five kids in clothes, food, activities and the general good life they enjoy, it means I would have to keep working as much as I am now.  I really would like to find somewhere cheaper to live, so we are trying to see if there is anywhere that will work that will make me, the kids and Ryan happy.  Still waiting to see what happens at his job, he says it is very quiet which may mean they are getting closed down soon which will give us more choices in where we go.

So that is it in a nutshell.  I have a wicked headache today and need to go out later to get an orange shirt for Grayson and make campaign posters for Haven who is running for a school officier position, and it is gloomy as heck.  I am dealing with the dinner issue by throwing a pork roast in the crockpot to make my favorite gloomy day pulled pork, and hopefully I can get motivated to make biscuits.  Happy Sunday.

Wednesday, September 21, 2011

Getting old sucks

Ugh.  That is what I have to say.  My dad had his surgery Friday and is home but still not feeling great so they are trying to see what might be going on.  We also got the paperwork for Finn's blood test from the geneticist.  Boy am I glad that they included all the information on what they are testing them for, nothing like having every possible complication laid out in black and white to make you feel at ease.  Scheduled the blood test for after playgroup this week, and then we wait at least 6 weeks for results to confirm the diagnosis. Sometimes being a grownup sucks.

Sunday, September 18, 2011

Apple of my eye

I slept last night.  I slept a lot.  All the stress of stuff with my Dad, Finn, work crap, school stuff....all of it faded away last night when I went to bed at 8:30.  Yes I had to feed Finn through the night, but holy cow, sleeping from 8:30 until 7 was pure bliss even with the four or five wake up calls from the little man!

Today I woke a different person than I have been for the last few months.  I felt pretty good, calmer, happier, easier and it was nice.  We managed to get it together for the whole family to walk out the door with everything we needed and a lunch packed and hit the road to Apple Country up in the Northwest corner of the state.  We headed to our favorite apple farm, Marker Miller Orchards, for some family apple picking.  This awesome little farm is located a few minutes from my sister's house, and while we didn't plan for it, they were able to stop by the farm for a quick visit before heading off for my nephew's karate class.  My crew had a great time, we picked about 60 lbs of apples which is half of what we normally get, but I was nervous about getting too much since we are leaving on a trip in a few weeks.  Kids played on the playground, we got a load of apples and we had a really nice day out.

Got home, fed the kiddos and prepped for school tomorrow and then Ryan and I broke out the apple peeler/slicer/corer and got to work on the first batch of applesauce, which is cooked and waiting to be canned tomorrow.  This year we will can applesauce and sliced apples in syrup, and we will also dry a bunch of apple slices that we use in granola bars and oatmeal all winter.  Looking back now, I am thinking we should have grabbed another 20 lbs...time will tell if we make the 3 hour round trip drive  again next weekend :)

Wednesday, September 14, 2011

Today was not my BFF

I have thought for awhile about posting what it is like to have a larger than average family, you know, the extra cooking, cleaning and laundering, but today I am just not up to it.  It has been a long and tiring day full of meetings, work, little ones, cooking, fighting to get my picky eater to eat, dishes, homework and phone calls.  Finally heard back from Children's Hospital regarding the genetic testing, insurance denied me getting the test but approved Finn so we need to go in for the blood work and then sit tight for 6-8 weeks for results, no sweat right?  Hubby talked to his mom who is a mess and ended up incredibly stressed after the call since she is falling apart and there is nothing we can do at this point to help and not much we will be able to do once everything completely explodes.  Then we topped off the evening with a call from my mom telling me my father's stress test went poorly and he needs to have a catheterization Friday to see what is going on...swell.

Sunday, September 11, 2011

Welcome to September!

It has been almost two weeks since I have blogged, that may be a new record!

We have been busy getting the school year underway.  Haven is loving Middle School and has adjusted well.  She is making new friends and is liking the freedom that comes with being a bit older.  I am hoping this is a great year for her full of new experiences, friends, learning and fun.

Brittan and Gray are settling back into school too.  Grayson loves his teacher and is enjoying first grade and Brittan is off and running in fourth.  I expect they will both have great years as well.

I am liking my schedule at PT school.  I was worried about having to be on campus three days a week, but I really like teaching the senior level class and I enjoy leaving after the kids have gone to school and getting home before them, it makes for a less chaotic day for everyone.  The babies are doing well with the schedule too and I feel like I have more time to work and get chores done now, I even have the babies in a playgroup on Friday and they had a lot of fun last week.

Lately I have been working on preparing for Christmas.  I know it is only September, but with five kids and busy schedules, I need to plan ahead.  Shopping is underway and I think the babies will be done by the end of the month.  The big kids are always more of a challenge, so I will start on them after our trip to Disney in October.  I am also thinking of hosting a Christmas Open House here this year, just a get together of friends with yummy cookies and treats and company, sounds like it could be fun :)

Of course I cannot let today go by without mentioning the anniversary of September 11th.  I, like most of us, remember all too clearly the horror of that day and the great sense of sadness and fear we all felt.  Of course in the days that followed we also learned of the bravery of so many, both those in uniform and those regular citizens, and I hold onto that as I explain the significance of today to my older children.  I do not want them to be afraid, but want them to understand why this day is so important and how it impacted all Americans and people around the world. In my care are four children who were not born on that day 10 years ago and one who was just a year old at the time, so to them it is just a day we talk about, but I hope that as they grow and they learn more, they walk away understanding that violence is never the answer and that bravery comes in so many forms and actions.  I am thankful today for those that strove to save others through their choices, I think of the many families for who today brings them great sadness and loss and I hope that we never see something so horrible again in any of our lifetimes.