Down Syndrome Awareness Month

October is Down Syndrome Awareness Month, a friend sent this to me and I thought it would be a good idea for Jess as well. Ive listed just 21 things we love about Jess, feel free to make your own list and I'll be sure to print them off to keep in her baby book.

21 things to love about Jess...

1. I love what she has taught us all about faith and patience.
2. I love how she makes me smile from the moment she wakes up in the morning.
3. I love the way she says HI! Genuinely excited and happy to see you, even if you just left the room a minute ago and came back.
4. I love her hugs... for a little girl she sure has big hugs!
5. I love how she takes care of all her babies. She feeds them, burps them, gives them a big hug and kiss... then throws them across the room as hard as she can. She'll give a big sigh and look at me as if to say, there that's done. Then its onto something else. Makes me laugh every time!
6. I love her hands, they are so soft yet strong.
7. I love the way she lights up whenever she hears music. She loves to dance!
8. I love watching her and Joey play together.
9. I love her language, she has her own way of communicating. We learn her language, not the other way around like it usually happens.
10. I love that she's my little cuddle bug. She will let you hug, squeeze, kiss and snuggle her for as long as you want to!
11. I love how she outsmarts all her therapists. They will try and try to get her to do something and as soon as they leave, she does it with a smile on her face.
12. I love her giggles.
13. I love her stubbornness.
14. I love her trust in the ones who've earned it.
15. I love how she thinks she has no boundaries.
16. I love how she plays her piano and sings.
17. I love the scars on her chest, shows how strong and brave she is.
18. I love that she never ever gives up or feels sorry for herself.
19. I love the stars in her eyes.
20. I love her long beautiful hair and how she plays with my hair all the time.
21. I love how God shines through her.

Happy Birthday Sweetheart!!

Two years old already, my baby girl is quickly turning into a toddler. We are so very thankful to be able to celebrate your birthday today. Surrounded by a loving family and your little pink heart cake! It has been a rough two years on you little girl, but joyous as well. Each day that we spend together is a true blessing. You make us smile and laugh everyday! We are so proud of you Jess, your strength and determination is amazing. Everyday you teach us what it means to live with nothing but pure love in our souls.

Happy Birthday sweet little lady! We love you!! xoxo

Santa is coming to town!

With all the tummy issues Jess is having, turns out she tested positive for C-diff. It is a nasty intestinal thing that is a bugger to get rid of, she either picked it up while in the hospital or from taking all the antibiotics. She just finished a round of medicine to treat it (that was very hard for her to take) and hopefully it is cleared up. The last few days she has been acting a lot better, hope it stays this way.
We were finally able to get a home nurse to come give her the synagis (rsv) shot at home instead of taking her to the doctors office and exposing her even more. It worked out well and now I wish we would have set this up a long time ago.
It's time to see Santa!! Everyone is ready with their lists to give to him. We are sneaking the kids in before Santa opens to the public so they can see him without being in the crowds. Joey is so excited, he talks about it everyday, counting down the days till Santa! What a magical time of year, we are so thankful to be at home and surrounded with love!

A happy home is a healthy home...

A few weeks ago Jess got sick, ended up in ICU for a couple days. I'm not sure what it was, just a cold to Joe, but with her it went into her lungs and within a few hours she was in the ER getting admitted. Her O2 stats were low (low enough to scare the poor ICU nurses) but after having a lot of breathing treatments and antibiotics she was well enough to come home. Her cardiologists were actually happy her O2 stats weren't lower seeing how sick she was. All the antibiotics gave her thrush so she was put on meds for that as well. Now, three weeks later she is still having problems with runny poop. We are trying yogurt, hoping that will replace all the stuff in her belly that the antibiotics stripped out.
All her therapy has stopped for the winter, we all agreed it's the best way to keep away from all the germs they could bring in. Hopefully it will help. She is loving the freedom to go at her own pace and is doing a wonderful job. She has done a lot of new things already.

The seasons are changing

The summer was great, we all had a nice time with everything that we did. It was great to see the kids discover all the newness in their world. They are growing so fast, to fast. We had a bit of a surprise in August, Jess came down with pneumonia. It started out as a head cold for the rest of us, but for her it went straight to her lungs. After hearing for so long that this is why we need to keep her isolated during cold and flu season, to avoid lung damage through illness, then to have something like pneumonia hit.... it was scary. But she showed her strength once again and got through it.
She is getting around like crazy now, all she wants to do is follow her brother everywhere he goes. Most of the time he doesn't mind, but then there are times when he wants his space and it's a riot to hear the things he says to her. She doesn't care though, she keeps on and just laughs. Her therapy is coming along fine, she is doing new things all the time. But it is in HER time! She isn't going to let anyone else get credit for her hard work. It would be nice though if everyone else caught up to her and learned that she is the teacher.
With the change of season upon us, I am starting to think more about her next appointment. I'm trying not to think about it, but its hard. We have talked to a few other parents out there that have heart kids like Jess and they just happen to be going through their surgeries right now. Doctors like to do them in the fall and spring if possible to avoid the flu season. I keep checking on them and praying for them, the strength these kids have in them is absolutely amazing! When I look at them though, I see Jess, so little and helpless going through something so big and scary. One of these days that will be her and time just keeps on getting closer and closer to that day. Please pray for all these kids and their families ....every little bit helps and I know God listens.

Time to smell flowers and catch firefly's

The second and third opinions are back, everyone is in agreement of the original plan. We really didn't think it would go this way, but are very pleased that it did. It is so reassuring to know the other two top rated ped cardiologists in the world have looked over everything and agree about her care.
Last week she had another check up with her cardiologist and they say she is doing wonderful! So good that they don't need to see her again for 6 months! At that visit we will be setting up a heart catheterization, where they will look at all the pressures inside her heart and we will get a clearer picture of how that left ventricle is growing. A relatively minor procedure (compared to open heart surgery) but still pretty nerve wracking.
So we have been blessed with coming home and enjoying the summer together. We went on our first day trip to an amusement park, we had a GREAT time! The kids went on rides and had a lot of fun together. It was a day I will never forget. The county fair is coming up and we are looking forward to that. Now we are just enjoying the lazy days of summer... having picnics in the park when we can, fishing, enjoying the new swing set that 'da-da' built and going for our morning and evening walks. Doesn't get much better than this!!

Welcome to Holland by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability -

to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.

It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives.

You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean, Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy.

But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills... and Holland has tulips. Holland even has Rembrandt's.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things... about Holland.

By Emily Perl Kingsley

(c) 1987 by Emily Perl Kingsley. All rights reserved

*Our family is Blessed with living in Holland and Italy, together as one, never having to leave either place. God has created our own little world for us and it is beautiful!*