Friday, April 30, 2010

Happy 95th Grandma!!

Today is my Grandma’s 95th Birthday. Yep, she and Maddy almost share a birthday! It amazes how well she is, I swear she is busier than I am. I hope I can be as happy & healthy as she is, if I get to 95. We will be at her party tomorrow, so Madilyn’s party has been planned for next weekend. Happy Birthday Grandma, we love you!

Wednesday, April 28, 2010

What’s in your DVD Player?

Right now it’s Star Trek: Voyager, but on any given day you might find MacGyver, Knight Rider, Chips, or Highway to Heaven. We purchased most of these before TV went digital and we only had 4 channels, now that we have digital TV we have 12 channels, which is slightly better, but we still find our selves popping in DVD’s. We seem to be drawn to the shows we watched as kids growing up in the late 70’s, 80’s, and early 90’s. We also enjoy movies, ranging from comedies, romance, action, and thrillers.

I’ve looked into getting cable, but we live in the country, and cable is not available in our area, so we would have to go with a dish network, and that just seems too expensive right now. So we will live with our rabbit ears & dial up internet. We do have cell phones, so we are in the 21st century, but we don’t always have a good signal at our house, we live in a valley! Oh Well! More time to play outside!!!

Monday, April 26, 2010

What’s in your CD player?

Right now it’s Journey’s Greatest Hits. On any given day I might have Christian Rock, Oldies, or 70’s & 80’s Rock (this is probably my favorite and the category where Journey falls into).

In September 2008 we had the great opportunity to travel to Minneapolis to see them live in concert – what a thrill, what a rockin’ concert!! Steve Perry was a great lead singer, not sure why he’s not with the group anymore, but his replacement Arnel Pineda, is very talented, and I think he is a great match for the band. My favorite songs are: "Don't Stop Believin'", "Separate Ways", "Faithfully", "Any Way You Want It", "Open Arms", "Send Her My Love", "Wheel in the Sky", "Who's Crying Now", "Stone In Love", "Lovin,' Touchin,' Squeezin;'", and "Lights" - So basically I like all their hits!! Right now we are in hot pursuit of Tears for Fears tickets, not sure if it will work out though, the nearest concert this year is in Detroit, MI., but this June will be our 10 year anniversary, so you never know what might happen.

Coming up next…. “What’s in your DVD player?”

Monday, April 12, 2010

1 out of 74 in Wisconsin – Why?

Nationally, the incidence of Heart Defects is 1 out of every 125 newborns. But in the state of Wisconsin, the rate is 1 out of every 74 newborns. Why? That’s what everyone wants to know, that’s why the Wisconsin Pediatric Cardiac Registry has been created. Click here to go to their website, and here to see some preliminary results. Maddy is a part of this registry. While she was still in the hospital I filled out the huge packet of paper work. They asked everything ranging from what type of cleaning products you use to the type of industry you work in or live near. They took blood samples from Maddy (before any transfusions), samples of her meconium, and DNA. Also DNA & blood from, Tony, Tristyn & I. I hope that in some small way the information we gave them will help answer some questions.

The national incidence for her particular defect (TGA) is about 2-3 in every 10,000 live births. The most common heart defect is ventricular septal defect (VSD), a hole in the wall dividing the left and right ventricles of the heart. I wonder what the statistics are for these in Wisconsin?

On a side note, Maddy and Tristyn both got their MedicAlert bracelets about 2 weeks ago. I don’t anticipate anything happening with Madilyn’s heart, but once you’re a heart mom you’re always a heart mom. She does have scar tissue where her aorta and pulmonary arteries were reattached, which could create a weak spot, and in an accident you just never know what could happen. As for Tristyn, she doesn’t have any medical conditions, but in an emergency she may have difficulty communicating.


Thursday, April 1, 2010

April is Autism Awareness Month!

Let me start with a little back ground on Tristyn. I had a normal full term pregnancy with Tristyn, I was induced at 42 weeks. Tristyn was a big girl at 9 pounds even and 22 1/4 inches, she had some problems with low blood sugar and needed an IV for about 48 hours, but besides that she was perfectly healthy. She was a wonderful baby, she started smiling at 4 weeks, and sleeping through the night at 8 weeks, she was a very social baby. She was breast fed until almost 6 months old, and never had a problem.

We became concerned about her gross motor skills when we noticed she was way behind other babies her age. She didn't roll until 5 months, sit up - 9 months, crawl 13+ months, walk 18+ months, etc. She was enrolled in the birth to 3 program and they helped her out alot. One of the problems they found was that her joints were hyper flexible. At 2 1/2 years old she was still only using simple words - mom, dad, ball. So we also started speech therapy for her. She graduated from the program at age 3 and we started her in a early education program. This was the best thing we could have done.

We asked the B-3 therapists & her early ed. teachers if she could have Autism, she had several, what we call "quirks" and we were concerned. But we were always reasured that she just had some delays and would catch up. Well, last year at this time we sat down with her teachers, a school psycholigist, and the principal, and she was finally given the diagnosis of high functioning autism, which opened several educational services for her. So the lesson learned here is, if you think something is wrong, but the professionals tell you your child is fine, push it more, you know your child. I don't want to change Tristyn, or pump her full of meds, or do therapies that she is not comfortable with, I love her the way she is!! I just wanted the peace of mind of knowing what was going on.

Now as I mentioned before, she has some "quirks" Just recently she started adding the "zir" sound at the end of some words & sentences, this is very cute, espically when she says "yes" it comes out sounding like "yes sir." She also loves the word actually. Ask her if she likes something and you might get an answer like this "actually, I do "zir." These are some of her harmless quirks, one of the harder ones to deal with stems from her sensory issues, and that is a fear of "loud" public bathrooms - namely bathrooms with automatic toilets & hand dryers at echo. For some reason, this really hurts her ears - it's like torture to her. So if you are ever in a public restroom and hear a child screaming, please be sympathetic, it might be Tristyn.



1 in every 125 babies is born with a heart defect?
What if that one was yours?

1 in every 166 children is diagnosed with some form of Autism? Help us put the puzzle back together!