Sunday, January 24, 2010


Alexis went skiing for the first time on Saturday....

She had a great time!  She went to the top of the mountain & skied a black diamond!!!
She even got to ride the Chair Lift!!!  (and didn't cause it to crash)

Elmo rode along too!!!!  Alexis loved it and would get ANGRY if they stopped moving.  And she got to pass the lines because she was with ski school!

Saturday, January 9, 2010

The Fun Side of Thursday's Cardiology Visit

On Thursday, we were accompanied to Alexis' appointment by Steve Cahill from Philips.  He produced this video:
We are starting to work on the content for a follow-up video, not quite sure what the message will be, but it'll be related Alexis' continuing surgeries and our experiences within the medical / hospital activities.

Alexis and her STROLLER-cam!
 I mean, how cool is that?  The videos with it were really cool.  Steve is amazing.  Alexis loved looking around and being the movie star. 

Here is Alexis "waiting".  Steve was able to film a lot of that. 
We waited and then waited, then waited.  Other Moms who frequent Children's (or other hospitals) know that nothing tries your patience like "Hospital Time".  Alexis is a great sport about waiting, but I was really getting bored. 

  • It was weigh-in/height, then change to gown.

  • Then wait.

  • EKG done.

  • Then wait.

  • ECHO done.

  • Then wait, wait some more, wait some more.

  • DOCTOR visit, originally scheduled for 10, we were seen at 11:15am.

  • 11:45 done with appointment. 

This is Alexis getting her ECHO done.
One of the things that humors me is that they ask Alexis what video she wants to watch -- she got to choose from a choice of 3.  Dora, Sesame Street or Baby Einstein.  Well, Alexis doesn't watch the TV during the ECHO, she just chills out.  She just doesn't want it to be so dark.  So, I pick something that won't annoy me the whole time and something that is bright enough so Alexis won't be scared in the dark. 

So hope you have enjoyed the next installment of "As the World Turns" for Alexis.  :-)

It's been a while -- a medical post

So for folks that have been "enjoying" our light-hearted posts for a while, this one will be serious but thankfully "routine"

Alexis has been followed by cardiology since she was born.  She had a PDA (that closed while she was in the NICU).  She has a PPS murmur (valve that isn't completely formed correctly) and an ASD (Atrial Septal Defect).  If you google ASD, you can find information on it. 
We had been going to the appointments every 6 months and every 6 months they would say the same thing.  Not yet, we'll evaluate at the next visit. 
Well, NOT THIS TIME.  This time they said that they would do the surgery within the next 6-9 months.  It would be the ideal time for surgery (not her birthday, not hospital time during the winter, etc).  So, hopefully we'll get it all arranged for sometime in August.
Naturally, we're professionals at other surgeries for Alexis. 
I tallied this up the other day:
- 1.  Bronchoscopy 3/17/06
- 2.  Fundoplication & G-tube insertion 4/10/06
- 3.  Cleft Palate Repair 11/30/06
- 4.  Tonsils out and ABR 2/11/08
- 5.  Eye Surgery 7/24/08
- 6.  Eye Surgery Part II 4/23/09
And so the catheterization procedure to close ASD and open valve (PPS) will be surgery #7.  Alexis will be 4 in February so it's averaging to be 2 surgeries each year.  Wowza.
And because we have managed to use her CPAP for so long, we have avoided TRACH surgery all together.

I found this on YOU TUBE and I thought it did a great job of visualizing the surgery that Alexis will be having:

So, that's the latest news that we know about Alexis-Heart-update.

Take care,

Tuesday, January 5, 2010

Interesting Story / Example

People have asked me why Alexis doesn't crawl, what she does hear, what she doesn't see and why she is so delayed. 

Another CHARGE parent posted this.... and I thought I would share it because it does a GREAT job explaining the complexities of Alexis and her body. 
We think of all the sensory systems in the body as being interconnected, they each must do their individual job, but they also must work together.  Think of these sensory systems as a Chinese Acrobat troop. One person holding up a lot of other people.  In this analogy the foundation for the troop to stand on is made up of information from smell, taste, and touch. The strong man is the vestibular system - this system needs to provide the support for each system up above to do their own job as well as work together. If there is weakness in one system, another system may compensate. If one person (system) in the acrobat troop sneezes, all the other systems must respond, much like movement to one piece of a mobile creates movement in other parts.
If the vestibular system is weak a system up above might compensate - vision is often the compensatory system, even in those who have vision impairment. Or there might be compensation from below - vision, taste, or touch - like shoring up the foundation of a sandcastle. This can be seen in behaviors such as chewing on shirts, biting..... And finally as the demands on each of these systems increase - greater demands at school for example - the ability to compensate might be exceeded and you begin to see "symptoms".

This was very interesting to me.  I hope you all enjoyed it.

Friday, January 1, 2010

Jessica and Matt play in Snow

Jessica, Matt and Matt's lifesize Snowman

Jessica smiling in the snow!  :-)

Alexis Scoooting...

When you don't have mobility in your neck....
When you don't have enough upper body strength.....
When you don't have the coordination....
When you don't have the vision....
When you don't have the hearing to be inspired to find your toys.....
You don't learn to crawl.

But you learn to do this, and you are getting very good at it!!!!

Warning, do not try this at home, it's actually a lot of work to coordinate leaning backwards but not too far, and using your feet to drag you across the room.... but as you can see Alexis has figured out a method that she enjoys quite a bit!

P.S. Today is Pajama Day for Catherine and Alexis. Besides, if you could wear footie pajamas with brown and white cows on it, wouldn't you do it all day as well?

Handbook 2010

1. Drink plenty of water.
2. Eat breakfast like a king, lunch like a prince and dinner like a beggar.
3. Eat more foods that grow on trees and plants and eat less food that is manufactured in plants.
4. Live with the 3 E's -- Energy, Enthusiasm and Empathy
5. Make time to pray.
6. Play more games
7. Read more books than you did in 2009 .
8. Sit in silence for at least 10 minutes each day
9. Sleep for 7 hours.
10. Take a 10-30 minutes walk daily. And while you walk, smile.
11. Don't compare your life to others. You have no idea what their journey is all about.
12. Don't have negative thoughts or things you cannot control. Instead invest your energy in the positive present moment.
13. Don't over do. Keep your limits.
14. Don't take yourself so seriously. No one else does.
15. Don't waste your precious energy on gossip.
16. Dream more while you are awake
17. Envy is a waste of time. You already have all you need..
18. Forget issues of the past. Don't remind your partner with his/her mistakes of the past. That will ruin your present happiness.
19. Life is too short to waste time hating anyone. Don't hate others.
20. Make peace with your past so it won't spoil the present.
21. No one is in charge of your happiness except you.
22. Realize that life is a school and you are here to learn. Problems are simply part of the curriculum that appear and fade away like algebra class but the lessons you learn will last a lifetime.
23. Smile and laugh more.
24. You don't have to win every argument. Agree to disagree.
25. Call your family often.
26. Each day give something good to others.
27. Forgive everyone for everything.
28. Spend time with people over the age of 70 & under the age of 6.
29. Try to make at least three people smile each day.
30. What other people think of you is none of your business.
31. Your job won't take care of you when you are sick. Your friends will. Stay in touch.
32. Do the right thing!
33. Get rid of anything that isn't useful, beautiful or joyful.
34. GOD heals everything.
35. However good or bad a situation is, it will change..
36. No matter how you feel, get up, dress up and show up.
37. The best is yet to come.
38. When you awake alive in the morning, thank GOD for it.
39. Your Inner most is always happy. So, be happy.
Last but not the least:
40. Please Forward this to everyone you care about, I just did.
[A great friend sent this to me, I had to forward it along]