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!

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!!!

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?”

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.

.

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.

.

Spread the Word to end the Word!!

Please stop using the "R-Word." The R-Word meaning "retarded." Please read Jennie's blog entry at A Little Something Extra For Us. She sums it up better than I ever could. We had the privledge of meeting this family and getting to know them while down in Milwaukee with Maddy. Her son Micah had open heart surgery at the same time as Maddy. Maddy went into surgery around 10:30 and was in the recovery room by around 7:30pm. This family was there before us and was still there when we left, I can only imagine their long day! We were the last two families in the waiting room that evening and so we were able to talk, our pastor was also waiting with us so he said prayers for both Micah and Maddy.

Since then I have been following their blog and have learned so much about faith and how to handle challenges. Since Tristyn has been diagnosed with autism I know were she it comming from when she says my son is NOT a "Down Syndrome baby", he is a child first! Tristyn is not an "Autistic girl" she is a child with autism. I want to make sure Tristyn knows that she is God's child and that she deserves to be treated with respect.

It makes it very hard to let her know just how special she is when people just keep using the "R-Word" So please think before you speak!!



As a side note: please vote for the "Kids With Heart" Nascar design, sponsored by CHD Awareness. Click here to vote. You can vote once everyday!!


.

Maddy has pneumonia!!

It's been a long few days here. It started with her comming home early from daycare on Monday with a 101 fever. Since then her fever has yo-yo'd up and down, on Thursday it was back up to 103, so it was time for a doctor visit, because this is no normal cold. Well after some chest x-rays we found out that she had the start of pneumonia, but we caught it early, she just had a small spot on her right lung. So today she is on antibotics and still has a slight fever. The poor girl just feels miserable, but her cough is improving, so I hope in a few days she'll be back to her chipper self!!

Merry Christmas !!

Sigh of relief !!!

Maddy had her 18 month checkup on Friday and I am so glad she was able to get her H1N1 shot! I've been hearing of a lot of cases where children have gotten really sick, espically when they have underlying health conditions. She will need to have her 2nd dose in a few weeks, but at least she is partially protected now.

Tristyn will be able to get her shot soon, the school disctrict will be having clinics sometime in the next 2 weeks, as soon as they get their supply. So we will all be able to breath a little easier!

When I took Maddy to her appointment it was like walking into a space ship! Every one wearing masks & gloves, parts of the building closed off, it was just really strange! Luckily we had an early morning appointment and we were the only ones in the pediatric waiting area, but we had to walk past the walk in clinc to get there!

As for her checkup itself, she is healthy as a horse! 21 pounds, 15 ounces, 31.5" tall. Her doctor is very happy with how her physical therapy is helping, her speach is right where it should be for her age, and her motor skills have caught up. she figures that in 6 months to a year she will be totally caught up! Yay Maddy !!!


.

Sorry !!!

OK I’ve been slacking these last few months with posting. There has been a lot going on here in our household! Maddy is doing great, she just started walking a few weeks ago, at about 17.5 months old! She’s also saying a few words: dada, momma, up, ball, all gone, and kitty. She is still on the small side at about 20.5 pounds at her 16 month visit, but health wise her doctor is happy.

In May Tristyn was diagnosed by her school with Autism. She was diagnosed very late at 4.5 years old, most children are diagnosed between ages 2 & 3, so this leads us and her teachers to believe she has very high functioning Autism. This is just an educational diagnosis, we are in the process of getting a medical diagnosis which will open up more therapy services for her. I am so glad that the school finally tested her, because we were beginning to think we were doing something wrong as parents and this finally answers questions about all of her quirks, which I will talk about in another post.

In Sept she started school again, we decided to let her have one more year in pre-K this year, she just turned 5 in July, and she’s just not ready for kindergarten yet. She has speech therapy again this year, and we added Occupational & Physical therapy because she has very low muscle tone (hypotonia) Well, that’s about it for now, I promise to start posting again more regularly!