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.

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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.

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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!!


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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 !!!


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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!

It's about time!!!

OK, I've been slacking with posting pictures, so here you go. Enjoy!

Here is Maddy at 7 months, showing off how well her boo boo has healed.

Here is Maddy at 7.5 months with our pastor. We are so thankful to have him as a Pastor. The night she was born he came to the hospital at 2 am, and waited with us as they prepared to transport her. The day she had surgery he was there when we got to see her in recovery, after a 7 hour surgery.

Maddy at 9 months. Is that a mischievous grin or what?

Tristyn showing off her missing teeth

Maddy & Lucky

Maddy on her 9 month B-day (eating or playing with macaroni)

Tristyn & Maddy at a vintage snowmobile show. That's Tony's 1973 Arctic Cat Panther.

Tris with her brand new helmet

Me & Tris getting ready to go for a snowmobile ride.




Lucky has a heart! I did not edit this photo, he actually has a perfect heart on his right side! There is a small white line of fur towards the left side, almost like a broken heart? How fitting that he found our family, we now have a heart baby & a heart kitty. Read about how we rescued Lucky after being hit by a car.





Lucky & our eldest furry daughter Jasper who is 8.5 years old.
(Spunky is 7 years old, she's not pictured)

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Poor Girl

Tristyn has a nasty bladder infection. She was just miserable last night, fever, chills, tummy pain. She started some meds last night & they seemed to help, she felt better this morning. I hope that this infection goes away fast. Guess I'll have to stock up on Cranberry juice.

What's that strange noise?

Yesterday Maddy was sitting in my lap playing with her favorite butterfly rattle and I heard this strange, soft, grinding noise. I know her rattle doesn't make noise. I hear it again, it sounds like Maddy is grinding her teeth. OK, how can she grind her teeth when she only has 2 and they are both on the bottom. So, I look in her mouth and sure enough, 3 more teeth popped in on top. She was a little fussy over the weekend, but I though that was because of her sinus infection that is finally getting better. So we are up to 5 teeth, way to go girl!

Tristyn went for a snowmobile ride with Tony. She loves riding with him, and was asking to go all weekend. They only stayed out for about 45 min because the temp started dropping, a cold front moved through last night, when I got up this morning it was -20 without the windchill (Burrrr).

Merry Christmas & Happy New Year!!

I hope everyone had a Merry Christmas, we sure did. about 2 weeks ago Tris lost her 2nd tooth, so all she wanted for Christmas was her "Two Front Teeth" :) It's so cute!! She loved opening her presents & opening Maddys for her, what a good big sister. This year she is into Thomas the Train & My Little Ponies. Maddy enjoyed playing with the bows & wrapping paper as you can see in the picture.

May God bless everyone with a happy & healthy new year to come.

The worst birthday present

Happy 7 mo Birthday Maddy! Here is your present: Ear infection with a perforated eardrum, sinus infection, nasty wet cough, and to top if off a red, raw, sore throat.

Maddy & Tris both had colds about two weeks ago, and besides a cough that lingered for Maddy both recovered, or so I though. They both had a scheduled apt for a flu shot this morning, so when we got there I asked the Doc to give Maddy a once over because of her cough. The Doc says she has probably been fighting this since her cold two weeks ago. The little sinker NEVER complained, never had a fever, was not overly cranky, ate perfectly fine, and slept fine, she was even smiling & giggling as the doc was examining her. How am I supposed to know something is wrong unless you tell me, you little stinker! Talk about a tough girl! I enjoy having an easy going baby, but this is a little crazy. If I had all those things I'd be crying!!!

Well anyway, Tristyn got her flu shot, Maddy will have to wait about 3 weeks to get hers. We got Maddy started on an antibiotic, which she will have to be on for 10 days. Looks like the start of another great cold season!

Toothfairy!!

Tristyn lost her 1st baby tooth today. The bottom front tooth. She's only 4 1/2, but I have heard that if they cut teeth early, they loose them early too, and Tristyn cut her teeth at 3 mo old. Maddy did too, so she will probably loose her baby teeth early also. I'm excited that Tris is growing up, but I'm also sad, I remember when that first little tooth poked through! I am glad she didn't loose it at school or daycare or swallow it. I have it in a little glass jar with a label & it will stay with her other keepsakes. The tooth next to it is also loose, so I bet that one will come out in the next week or two. Tris was so excited when the toothfairy came, she got a dollar to put in her piggy bank and some candy Dots.

Cover Girls & Kittens - Oh My!

I am so excited. I work in an office that publishes a local weekly buyers guide. Quarterly we puslish a coupon book. The last to coupon book covers have featured some of my co-workers grand babies, well this time it's Tristyn's & Maddy's turn. The cover is so cute, our production department does an excellent job! The book has a distribution of about 32,000 houses & businesses, so this will be their 15 minutes of fame. I'd post a picture of the cover, but it's copy righted & I don't want to get in trouble. Here is the original picture before they did their magic of editing to it. They enhanced the color, zoomed in, and added some wording.

Lucky, came home this weekend. Our older cats, Jasper & Spunky were not too happy, but they are warming up. He is such a cutie & very playful. He has made a great recovery, he has a slight limp in his back hip, but that's all. Here is a pic.

Teacher conference time! Yah!

We get to meet with Tristyn's teacher tomorrow. I am looking forward to discussing some praises & some concerns. The praises include: her becoming more independent, like feeding and dressing her self. She is also becoming a very good big sister. The concerns: she almost 4.5 and no where near potty trained. Although her speech has improved greatly she still struggles with comprehension. I want to talk with her teacher on how to improve this. I long for the day when I can have a conversation with her & find out thoughts and feelings. I want to ask her what she did in school and get a different answer than "played with the kids" or "sang a song" which are the answers I get everyday. Don't get me wrong I love those answers, and last year at this time her answer would have been yes or no. But I am looking forward to something more. And I know it is so frustrating for her when she can't communicate things to us. I was looking back at Tristyns baby book and comparing her milestones to Maddy's. I am relieved that Maddy is hitting her milestones 3-5 months ahead of when Tris hit them, its nice to know we have one less thing to worry about.

Ok done venting, I know the comprehension will come, its just everything comes slower for her.
It is hard on a parent when their 10 mo. old can't sit yet, 19 mo. old doesn't walk yet, their 2-3 year old only has a vocabulary of 10-15 words, and their 4.5 yr won't use the potty. I love both my girls just the way there are and I wouldn't change them for the world, but I just wish things would come easier for Tristyn.

Visiting Lucky

We were able to go & see Lucky today. He is walking a little better, there might be some nerve damage to his back end. His tummy is still bloated on one side, but they don't think it's internal bleeding because he wouldn't have survived this long. They said he has been eating & drinking just fine. He will see the vet again next week to rule out worms in his tummy. We were able to hold him for almost a half hour & he loved all the attention. Tristyn loved petting him, she was so gentle. We pray that he keeps improving so he can come home with us. Even if he ends up with a bum leg or hip, we'll love him anyway.

Pumpkin Patch Trip

Tristyn got to go to the Pumpkin Patch yesterday with her pre-k class. She was very excited. The place is really cool! It has a large pumpkin patch, a large corn maze that takes about an hour to go through, a small kiddie corn maze, and goats that the kids can feed & pet. Closer to Halloween they have a haunted maze. This place is only 2.5 miles down the road from our house, I pass it everyday on my way to work and it's always busy this time of year. Tris got to pick out her own pumpkin to bring home, and we are going to carve it this weekend.

Maddy has been eating infant cereal for about 2 weeks now. The fist couple times she only ate a few bites and was like "what is this goofy stuff" Well, last night she decided that she loves the stuff. I couldn't shovel it in fast enough. By the time I reloaded the spoon she had her mouth open waiting. :) She's learned how to blow bubbles now, and she tried to do it a few times with her mouth full. So, instead of blowing cute bubbles, she blew cereal all over mommy. Oh well, it was so cute that it was worth it!!

More Photos

Just wanted to share a few favorite photos of my girls:

Here is Tris feeding her baby - just like Mommy feeds Maddy.

Here is Maddy - deep in thought? 8 weeks old

Sisters forever!!

Look how nice my boo-boo is healing - 16 weeks old

Yep - that hair is RED

All about Tristyn

The next few posts will just be a catchup on the last 4 years since Tris was born. How do you summarize 4 yrs? I'll try!

I'll start with Tristyn since she is the eldest. She was a very easy baby, and it started with a very easy labor & birth (only about 3 hours). She was always very content and slept through the night starting at 8 weeks. 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, in 1 years time from age 3-4 she has progressed so much. Last year she went three 1/2 days a week, and this year its five 1/2 days. Since we live in the country she gets to ride the school bus and she is so excited for it every morning.

When Maddy was born Tris was a little traumatized. I believe it was mostly because all of a sudden Mom & Dad disappeared for 2 weeks and she was sent to Grandmas house. Tris was able to make the 4 hr trip to Milwaukee to visit us 2 times, which was nice. It amazed me how much I missed her, and it seemed like she grew a whole lot in those few days I didn't see her. Maddy was 7 days old when Tris got to meet her. The first thing she said was "baby Maddy is shiny and new" it almost made me cry. Since bringing Maddy home Tristyn has adjusted, she is learning how to be gentle, but still needs to be reminded often. She is very good at making Maddy giggle, it is so neat to watch the two interact.

Take care & God bless!