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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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 !!!


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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!

Physical Therapy

Maddy is going to be starting physical therapy. She was evaluated on Monday and they found she has about a 40% delay in her gross motor skills & she has muscle weakness. That means that right now she is at about the level of a 5 month old. It's hard to believe that in just a few days she will be 11 months old, and the BIG ONE is just around the corner. Just in the last 3-4 weeks she has finally mastered sitting. She still falls when she's tired. Her therapist is espically concerned that she is not willing to bear any weight on her legs, and she still has a hard time rolling.

On a good note, she is right where she needs to be cognitivly, verbally & socially, her therapist is impressed that Maddy is already trying to feed herself with a spoon, most of the food ends up on the floor, but some makes it to her mouth.

I think we broke a record!

I think we have broken the record for the fastest moving virus. Here's the schedule:

Tuesday: My Mom & Dad watched Tris & Maddy all day.

Wed. night: My Dad calls & tells me he came down with a nasty cold & hopes the girls don't get it (Thanks Grandpa!)

Thursday: All is fine.

Friday 7:30 am : (here's where I start the stop watch because I don't know when her symptoms actually started) On Friday's Maddy is watched by Tony's Dad, he comes to our house. So, Grandpa comes over & I leave for work, Maddy is just fine at this point. I get home at 5pm, and she is just a mess! Fever, red cheeks, snot everywhere & she is just miserable! (Thanks again Grandpa!) So I give her Tylenol, after about an hour the fever is gone & she is feeling better. She goes to bed early & surprisingly sleeps through the night.

Sat. Morning: She's still a little warm so she gets another dose of Tylenol & the fever goes away and doesn't come back. She is fairly happy through the day, except for the constant runny nose. She goes to bed early again & sleeps through the night.

Sun Morning: She is just fine, no fever, no runny nose, perfectly happy all day long!

I have never seen a cold virus move so fast! Less than 48 hours from 1st symptom to being symptom free? I just pray that this wasn't just the start & that it comes back with vengeance.

By the way, Tristyn never got the cold at all!

Maddy's Heart Journey Photos

I finally updated her photo diary. I have 70+ pictures loaded & this is a work in progress so keeping checking back. I will slowly be working on adding comments to the photos also, so feel free to add your own comments if you wish. I hope to keep this photo diary as current as I can. I have a link to her photo diary in the blog roll to the right, or you can click here. Maddy's Heart Journey

Click on the photo to make it larger & see the comments.

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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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You have to check out these blogs!

If you or someone you know has a CHD or if you just love reading inspiring stories you need to check out this blog: Inspiring Hearts. This blog is packed full of hope & inspirition, some of the stories are extremely touching! Also check out it's sister blog: Finding Inspiration Everyday!