Monday, July 27, 2009

This & That!

I was reading on Kaitlyn's blog today about the FDA approving a new transcatheter valve replacement. Basically meaning that transcatheter valve replacements for RVOTO (right ventricular outflow tract obstruction - usually associated with ToF) patients would be approved for the US. I'm so giddy, because this means that Vaeh wouldn't have to anymore open heart surgeries! Can you say... WOO HOO?!?!?!?! Click here to read the article about the device. They even show a picture of the valve & the catheter that they use to place it.

Things around here are going okay. We've had some frustration with Jon's upcoming physical for his employer. Since he has a commercial driver's license (CDL) he has to have a physical every year. Its been quite a headache in the past as he has sleep apnea. They really crack down on drivers who have this. So, Jon has to sleep with a CPAP & has to have the machine "down-loaded" every year so that they will pass him to drive. Well, he went up on Friday last week & found out that they aren't going to accept things this year without a "maintenance of wakefulness" test. Basically he has to go up to the sleep clinic, they wire him up to monitor him while he sits in a dimly lit room for 40 minutes. During that time, he's not allowed to sing, talk, etc., to try to stay awake. Basically he has to stay completely still & not fall asleep! If he falls "asleep" for more that 10 seconds... he would fail. Lets just say this has been a big thorn in our side. The one good thing is that Daddy has been home since last Wednesday night!!

The girls are doing really well:0) Gabby is getting really excited about starting kindergarten. She's got until September to wait, though, so I think its going to be a long month of August! Miss Vaeh is doing great!! She's really enjoying being able to get outside & play this summer. This is really the first year that she hasn't had to stay inside, so she's getting her fill of the great outdoors!

This past weekend we were finally able to go for our photo shoot with the Littlest Heroes Project. It was a wonderful day! The photographer that we were connected with (Amanda McKinley from Mom-A-Razzi photography) was great to work with. She did an great job of getting the girls into different areas to get shots of them! She even included Gabby, taking bunches of shots of the girls together & one or two of just Gabby! We had the session at the Franklin Park Conservatory in Columbus & it was beautiful!! The girls really loved the "butterfly room". We did pictures both inside the conservatory & outside, once the clouds/rain passed. Then it was onto the Spaghetti Warehouse for dinner before coming home - yummy!! As for the photos... Amanda said that she would have a CD of them to me in about 2 weeks. So once I get them, you can bet that I'll be sharing them!!

On a fun side note, one of my blogging friends Amber (Gracie B's Momma) & her family had a very exciting weekend, too! They were able to bring the newest member of their family home from the NICU!! They are in the process of adopting little Mr. Jacob & he's just as cute as could be! Pop on over the their blog to see pictures of their family!

Thanks for stopping in to check up on us (when I finally get around to posting;0) )! We really love you all!

PS - Please keep McMama, Stellan & their family in your prayers. Stellan is not doing well & is on his way to Boston again:0(


Colleen said...

Doesn't it seem like summer is just flying by! That's wonderful that you were able to get photos done by the Littlest Heroes Project. We are trying to apply for that program too!

Lee Family said...

I am glad to hear everything is going good with the kids, Sounds like the summer is just flying by so fast.

I cannot beleive they want Jon to take the CPAP Test. Richard has never done anything like that. Maybe it varies state to state.
I wish him all the luck that is going to be really hard.

The Portas said...

Good to see an update from you guys! I'm so glad you were able to get photos taken through the Little Heroes Project. That's awesome!!

I'm very interested in the transcatheter valve replacement. Although, with E's artery issues, I doubt that would be an option for him in the near future. Guess we'll see what science brings to the table!

Have a great week, you guys! xo

Vanessa said...

Sounds like Jon is going through alot right now. I'll keep him in my prayers. Tell him to just keep pinching himself every few minutes to stay awake...LoL!

So glad the girls are having fun. Give them some love from me!

Kathy said...

You know...they are already doing that procedure over in Europe. My card has a patient that sends her son over for his so that he doesn't have to have open heart surgery (lots of "have's" in that sentence)
VERY cool indeed!!!

Hope the sleep test goes well..
and how fun that the kids are well and enjoying the outdoors! Does it feel wierd? I'm just waiting. Isaac still doesn't like being outside...maybe next year.

THANKs for updating...we miss you when you go MIA!

Amber said...

Always so thoughtful!
OH MY GOODNESS....poor Jon! This is craziness. You need to fill his head with crazy, funny thoughts before he goes...he can recall them while attempting to stay awake. *knowing me...the frustration of having to do it would work!*

Tina:0) said...

Jon's test went well. He's getting a new machine so that this won't be a problem for next year;0)

He said that the sessions lasted 40 minutes each, so he put his cell phone on vibrate & set the alarm for about 30 minutes into it. Then when his alarm went off, it helped keep him awake & let him know he was almost done! Sometimes he uses his noodle - LoL!!!

Thanks for all the well wishes... he went back to work last night!

The Domanicos said...

That is great that Nevaeh is loving being outside and that she is getting a chance to play with her big sister before she goes off to school!!

Can't wait to see the pictures from the photo shoot. Make sure to post some!!