Monday, August 29, 2011

Quick Updates

Tonight was my first night back at PT school and I am tired.  Bonus is that I get to go again tomorrow...and Thursday.

So here is a quickie update:
1.  Earthquake aftershocks suck, but have slowed and are barely noticeable anymore.
2. Hurricane Irene came and went.  Kids and I left town and headed to my sister's as a just in case, but somehow our area did not lose power or have damage. Ryan says the big bands that caused issues in Richmond slid around our town and missed us :)
3. Back to school craziness begins this week, I am back at PT school and we have MS orientation Wednesday and meet the teacher at the elementary school Thursday.  Busy busy.
4.  I do believe Finny has grown a bit, an outfit I put on him today seemed a bit short.  Mind you it is a one piece green striped Mini Boden outfit I got him for around Christmas last year, you know when he was three weeks old.  It WAS a bit big on him then, but he really is a peanut and hasn't grown since March or so.  *sigh*

That's it, let the craziness begin!

Thursday, August 25, 2011


Things here have been crazy and busy and emotionally filled with big time highs and just as big lows the last two weeks.

Finn-Saw genetics, posted about it, basically we are riding this one out and waiting to see what happens when the testing is done.  I am crazy worried about his cardiology appointment next month, for some reason I feel like things have changed, but that could be my paranoia.  He has started babbling more and he is still a big, doughy, ball of sunshine.

Gray-He turned 7 last Saturday and his day was negatively impacted by my stupid Father in law.  I won't write much on it since I don't want to upset my husband, but this man is the most selfish person I have ever met in my life and I am tired of him choosing anything and everything over his son and grandchildren, one of which he has yet to meet.  He totally screwed up our plans, but we fixed them as best we could on Gray's actual birthday and then had a great day Sunday, we bowled with his friend's family, went to Cold Stone Creamery and then scoped out some land we were interested in.

Earthquake. We felt it, it was super weird and it was located only about 50 miles from our home.  Being that we are used to crazy explosions, low flying military aircraft and the occasional sounds of machine gun fire in the distance thanks to a local military base, it is saying a lot that this threw us.  Thankfully there was no damage and aside from the aftershocks that are a touch off putting, the earthquake is behind us.

The hurricane.  We are waiting to see what tomorrow brings, but it appears we are in the line of fire here.  Being that we have a very wooded lot with old mature trees that sit on a hill behind our house, we are planning to leave and stay at my sister's house on the west side of the state.  While I am not afraid of a hurricane, I am worried about damage from tree branches and would rather not have my kids be scared for 12-24 hours if there is no need.  I am hoping the house survives with no damage, but this is a crazy storm and we will have to see where it hits and what happens.

So it was a good week of celebrating our son and seeing friends, a rough week of dealing with stupid family and weird weather.  Guessing I will check back in once we meet up with Irene.

Saturday, August 20, 2011

Our Grayson is SEVEN!

I cannot believe it, but today our third child and first born son turns SEVEN! Where has the time gone?  Grayson is such a sweet kid, he loves to love on the babies and was so excited when he found out that baby #5 was going to be the brother he had longed for.  He is a funny kid, loves to recite commercials to us and still enjoys being the "baby" of the big kids.

Grayson is a smart kiddo, he did awesome in kindergarten this year and he is excited for first grade to start in a few weeks.  He has recently become a burgeoning video game addict and he loves to play Lego Star Wars and as of today, Lego Harry Potter.  Thankfully he is good about limiting the Wii time and he also really loves his collection of lego sets and can spend hours in his room building and creating.

I could not imagine a day without Gray, he is such an amazing kid!

Wednesday, August 17, 2011

Our boy

I don't talk much about our kids health as I have said before, but we are in the middle of some stuff with out little guy and I figured I would detail it out here just in case someone else comes across this and it rings any bells.  So here is what is happening with our little Finn.

Finn was seen by the genetics team at Children's Hospital yesterday as he has three distinct heart defects and is not growing properly.  They determined he does not have Williams Syndrome which is the chromosomal defect most often related to his specific heart defects.  They determined this based on his physical appearance and that he did not have the traits of a child with Williams.

Here is his history:
In utero-normal growth, normal fetal echocardiogram, Chroid Plexus Cyst in brain found and then resolved by 25 weeks gestation

At birth-Finn was a normal size for 39 weeks gestation, 8 lbs 7 ozs and 19 inches long

Since birth:
Finn was checked for hip dysplasia, his hip "clicks" when manipulated-x-ray did not show any malformation

Finn experienced an "episode" of either a seizure or passing out-blood sugar when checked was very low, subsequent blood tests did not show anything alarming or out of the ordinary

Finn was seen by two cardiologists, he has SVAS-supravalvular aortic stenosis (I have this as well), bilateral arterial pulmonary stenosis and a leaky aortic valve.  He is being followed by cardiology to see how the defects change during his growth.

Finn is hitting most of his milestones, but not always on time or slightly delayed.  At 8 months 3 weeks he can sit, army crawl, palm items and pass them back and forth.  He can bear weight on his legs.  He is not very good at grasping with his finger and thumb, he does not pull up and cannot when we try to show him, he does not crawl with his belly up, he can not get to sitting, he does not wave but will reach for me and cries when I leave the room or put him down.  He does not babble, no consonants, but makes vowel sounds (ahhh, ooooo), he does not seem to recognize his name or when we say no.

He has not grown at all in the last 2 1/2 months, he has been stuck at 17 lbs and 27 inches this whole time which puts him close to the 10% for height and weight, although he eats a lot still nursing every 2-3 hours at night and eating a lot of solid food.  He cannot eat chunkier solids, like small pieces of banana or cheerios because he will gag, but he has a hearty appetite otherwise.

He is a very poor sleeper, naps OK but up many times during the night to eat.

He is "floppy" and the geneticist says he is "doughy" and his skin and muscles are very soft and he has low muscle tone. They also stated that he has hyper mobility and is very flexible.

Finn is a very happy baby most of the time, he smiles a lot and likes to be held, but he seems like a much younger baby not only due to size.

The genetics team suspects some sort of elastin issue and believe it may be genetic and will be testing me first to see if I have it.  If I do, we will then see how Finn is doing and proceed from there with either more testing and/or therapies.  If I do not have an elastin issue, they will then begin screening him for different genetic and chromosomal defects.

As a mom, my main concern is development and growth.  We are not sure why he is not growing when he eats so much, and he is very different than the other four kids who hit all miles stones on time and never fell below 50% for height (most are closer to 75%)

I am beyond frustrated.  I understand that the genetics team needs to do things one step at a time, and that they need to watch him to see how he grows and develops, but it is hard for someone who is a control freak to have to sit and wait.  Regardless of what is going on, we will do whatever it takes to figure things out for Finn, but if you have experience with any of this and want to share, we would appreciate it.

Monday, August 15, 2011

Away we go...

The week has begun with some positive and negative notes on the horizon.  Today the crew worked on cleaning things up around here while I worked on, well, work!  Last night I sent off the first draft of Chapter 3 of my dissertation, so that is off my plate momentarily.  Tonight we promised the kids a game night, so after dinner we will sit down and play for an hour or so before my weekly work call.

Tomorrow we will go for Finn's appointment. I am dreading it.  It will be over in 24 hours.

Wednesday the hubby took the day off so we have some things to do around the house and basically I hope to cram in some extra family time and togetherness.  Thursday Ryan's Dad may, or may not, "stop by" as he drives by our house on his way to Florida, where he is moving, and he told us Saturday.  Being that we have not seen him in over a year, and he has never even seen Finn, this should be interesting.

Basically, I was looking forward to this week, and now it is kind of out of control.  Deep breaths, deep breaths....

Saturday, August 13, 2011

Ripped wide open

So I try to keep things even keeled here, keep my emotions in check, show the brighter and better side of things as much as possible.  While the blog is my journal, I don't put the raw emotion out there much, to be honest, I don't put it out there much in the real world either, especially when it comes to my kids.

Right now I am feeling raw and ripped wide open.  I am scared, I don't get scared when it comes to my kids much and can easily list the few times it has happened (Haven catatonic at ER age 3, Haven shock at allergist age 5, Haven MRI to check for brain tumor age 8, Grayson hospitalization for asthma and tests for leukemia-yeah steroids for screwing up his white blood cell count age 2, and Grayson almost drowning last summer while surrounded by adults age 5).  Considering my 11 years of parenting and five kids, those are the times I have actually been scared, and for most the fear passed quickly once the child was stated to be OK.

Tuesday we see the geneticist for Finn, and I am scared.  Seriously scared, like I want to skip the whole thing and take everyone for ice cream because it seems too big to deal with.  Do I know that it could be much worse, yes.  Do I know that even if he has the syndrome they are checking for that he will be OK and we as a family will be OK, yes.  Does it help, no.

I look at that baby boy and he is so full of love and sunshine and I hate to think that his world may be limited in any way.  I hate thinking that he could be taken advantage of if he has this because he won't understand that someone is trying to hurt him and it makes me sad that certain things will be hard for him, especially learning.  I worry about the health aspects too.  We know about the heart issues, and we already are mentally prepared for what that may mean down the road...let's just say regardless of the outcome Tuesday, he will not be able to play any sports and surgery is a real possibility.  I also know that kids with this syndrome do die from some of the health aspects, not many thankfully, but it happens and that simply breaks my heart in two.  The next few days are going to be trying.  I do OK during the day but the nights are hard especially when I am holding him in the middle of the night, dreaming of what his future holds as I did with all my kids, and wondering if he will have those same choices and opportunities.

Today, I am scared and sad and hopeful that we will be shooed away by the geneticist Tuesday.  That they will tell me to take my boy home, fill his head with a lifetime of dreams, and know that while he will face obstacles as all children do as they grow into adulthood, his will be the run of the mill kind.

But tonight, I am scared.

Friday, August 12, 2011

Um, what did I order?

It has been wacky the last few days.  Our bank was bought out by another bank and everything switched over last weekend.  Then on Wednesday I get a call that someone charged a plane ticket in Australia on my debit card...swell.  Got that taken care of thankfully, because seriously, nobody better be flying around Australia on my dime except me!

Then today I ordered....drum roll please.....running shoes.  Like for real running shoes that should cost a ridiculous amount of money AND I got the sensor that goes in the shoe and syncs with my phone.  In one regard I find it really amusing, and if you could see me run right now, you would seriously consider why I got running shoes, BUT, I really want to keep the program going and well, I got some junk in the trunk so I need to protect the tires, or axles, or whatever the car equivalent is for my knees and feet.

Anyway I have been researching the best shoes for my needs and knew I wanted the Nike+ technology so I found the style shoe I needed and began pricing it and all together it should have been about 160 bucks.  Then today I found them on sale, with an additional coupon, through EBATES with 10% cash back and free shipping!  It was like the stars aligned and the running gods said, "Run tribemama, run with your jiggly rear and order those shoes!"  So I did, and for about 80 bucks I am getting my new sneaks and I'm so stinkin' excited, and the running gods are pleased.

Thursday, August 11, 2011

The road ahead

For the first time in weeks, I feel like everything is almost under control. My dissertation is moving along and I am almost done with Chapter 3 and will be sending it for review at the end of this week.  My chair reviewed my survey and had minimal notes which was helpful in meeting my goal, and I have some changes that need to be made to Chapter 2 but nothing horrific.

I have just about finished a big project at work that had been dragging on and once that is done this week, I can begin to organize my course for PT school for Fall term.

Kids have been pretty good, they have been helpful and fairly well behaved.  I am looking forward to some family time next week.  We need to take Finn to see a specialist at the Children's Hospital and then afterwards have some fun plans for the kids, just as long as the weather turns out to be as lovely as it says it will be right now.

School starts soon, PT school for me and regular school for the biggies.  I signed the babies up for a playgroup once a week which will be a fun little outing, plus it should score some good naps ;)  Did I mention that the hubby is taking a day off next week, and it is his short week so he only works two days...yippeeeeeee!

Sunday, August 7, 2011

Is it winter yet?

I don't know why I always think it will be easier/calmer/quieter in the summer, it's not, ever.  Something about the heat which coops up the kids or makes going out a sweaty endeavor is just miserable.  While I love not having a set schedule, I am over the heat and I am anxious for it to finally cool down a bit.

Fall is around the corner, and with it comes my scheduled work time at PT school, a kid starting middle school (EEK!) one starting first grade and one starting fourth.  The babies will both be home all year with me, although I am hoping to get Teagan into an activity or two during the day, playgroups or gymnastics, etc.  She really likes seeing other kids her size, and she is very social, so I want to get her out a bit.  Fitting it into my work schedule will be interesting, but I will make something work for her.

Big kids will keep swimming, it is an easy once a week activity, they all love it and I love their teachers and the school. I am sure Haven will find things she wants to join in MS, so I need room for that along with Ryan's crazy work schedule and my jobs.

Right now I am looking forward to cooler days, days where I want to bake all day and snuggle up with my babies in the afternoons.  Days where it gets dark early so we can all hunker down and spend time together and feel a bit less pressured.  Please let it be a snowy, snowy winter full of glorious fires in the fireplace.

Friday, August 5, 2011

PJs and Pots

Today is one of those gloomy, quiet, inside in your PJ type days.  Kid's are being calm, a good side affect of the gray skies, and I have managed to get a lot accomplished this morning.  I have my sitter coming in a bit to wrangle kids while I work on my dissertation all bundled in my polar bear PJ's and dinner is already started.  On a day like today I like to throw a bunch of stuff from the fridge into a pot to see what we can make of it. My theory is, if it tasted yummy the first time, it should taste even better the second :)

Right now I have an diced onion cooking in my dutch oven and once soft I will add some shredded chicken left over from roast chicken the other night.  I also have some left over roasted potatoes that will make their way in at some point and probably some peas later.  I am thinking of adding some Sazon for seasoning, maybe some chicken stock to make a sauce and cilantro if needed for flavor.  Serving it up over basmati rice with cornbread on the side.  Sounds pretty yummy for leftovers!

Thursday, August 4, 2011

Country Roads

Today was farm day.  I love farm day, not so much for the nearly hour long drive with five fussing kids in the back, but for the scenery.  There is something about winding country roads, green rolling hills, cows and horses and lush trees that calms my soul.

Even when I lived on Long Island growing up, I used to always head east when I needed to clear my head, east towards the farms and the quieter small towns.  There is just something about the lack of clutter, the space between houses and the wide open breathable air that makes me feel comfortable.  Someday soon I hope to have that ride, down the windy treelined roads, past the fields, to my home where I will look out the door and just see nature.

Tuesday, August 2, 2011

I know you are all wondering

what I have been up to, what's for dinner, what the kids are doing...or maybe not. I rarely think about who is reading here and I just write what I want, although I do stay well aware that someone is reading here and I am cautious about what I share about our lives, the kids, my husband, etc. as a blog is a mere glimpse into our lives, not a moving picture of every blessed and damned moment.

So anyway, where have I been, well...I have been out to dinner with my husband to celebrate our anniversary. I have been to swim lessons with kids, and the grocery store without.  I have been to a job interview and scored yet another paying side gig...I do believe I may have more gigs than kids.  I have been tired, bone numbingly tired and overwhelmed to the point of drowning in my own internal "to-do" list.  I have also been angry lately, really really angry and while I understand why, and for the most part my husband understands why, it sucks to wake angry and go to bed angry.  I am trying to get over it, get past it and start anew, but it is a tough task when I wake each morning with too much to do, too little time and even less sleep.  Anger sucks the life out of you, and I haven't had much life to give.

I will add one small bit because I know when I read blog posts like this I alway speculate on why the person feels the way they do.  I will come straight out and say my anger has nothing to do with my husband or our relationship and has everything to do with things beyond our control, schedules, non-sleeping babies, crazy work stuff, school, and kids.