Friday, July 10, 2009

Logan with Grandpa and Grandma
Hanging out with Grammie and Auntie Ash

Yesterday we took Logan to the Cardiologist. He is up to 8 lbs, 5 ozs!!! What a little eater! Kireta is doing a great job at feeding him every 3 hours, although we now allow a 5 hour window for him to sleep at during the night. His oxygen continued to remain high, at 88. (Remember, if it gets to the 60-70s range, we'll need to do the surgery early). They performed another echo-cardiogram and found his pressure gradiant in the pulmonary artery to be 64%. This is also a good sign, as he was born at 60% (The higher this number goes, the lower his oxygen will go, so they pretty much go hand-in-hand.) The only troubling sign was that his pulmonary artery did not grow as Logan has grown. In fact, it has remained the same at 6mm. Please pray that this grows as it will determine whether or not they are able to do the valve sparring technique during surgery, thus (hopefully) requiring only one surgery. (If not, the transannular patch will be used and he'll need 2-3 surgeries). That being said, Dr Carrie doesn't need to see him for another month, so that's an encouraging sign:) For now, however, we're thankful that his oxygen remains high, he's a healthy weight, his coloring looks great, and that he's yet to have a "tet" spell. Also, his muscle tone is great! He is so strong! This will help him with his motor-skill development.


This week we made contact with a number of down-syndrome groups. We are in the process of setting up early-intervention, which is a free state program to help Logan develop early on. Depending on his needs, he can get a Speech, Physical, and/or Occupational therapist on hour per week, free of charge. They will come directly to our home, which will be a huge benefit! We'll know what Logan needs in the next few weeks, and we'll keep everyone posted!

This week we also contacted one of Lisa's good friends, Michelle Kry. Michelle had two beautiful twin boys, now 14, who both have down syndrome. She will be visiting this Saturday with her husband, Kelly. Michelle has also put us in touch with the Mile High Down Syndrome League (of which her husband was president a few years ago). In the next few weeks we'll be in touch with support groups, etc, that will really help Kireta and I understand as much as possible about DS, as well as the best ways to educate and raise Logan.

I'd like to share a poem that we first saw in the doctor's office, and then later in many books. It's called "Welcome to Holland" by Emily 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 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 Rembrandts.

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 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.

Thanks again to all who care enough to read about our Little Logan! Your thoughts and prayers do work, please keep it up! That's all for now, we'll keep you posted!

3 comments:

  1. I love this poem. Thanks for sharing. We just love Logan and look forward to meeting him.

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  2. I love the poem. I just received your picture announcement for Logan today and I just wanted to say he is so beautiful! I cannot wait to meet him! You guys are in our prayers! Love you guys!
    Love,
    Julie, Matt, and Matty Tobin

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  3. I love that poem. I have another friend who shared it with me after their son was born and thought it was "right on".
    Logan is a true gift who is going to add so much to our family! We can't wait to meet him!!!
    All our love,
    Dondi, Kevin, Madison & Kennedy

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