Road Trip!

As we get ready for one of the most exciting road trips of our entire lives I feel myself getting overwhelmingly stressed out about what we have to bring. We have to travel very very heavy with Sam. Just to share how heavy here is a list of some of the things we have to bring...
Suction machine (which we only use maybe 2-3 times a day now if that YAY!)
suction catheters
2 basins for the suction machine
extra tubing for the suction machine
Feeding pump
feeding bags
special fromula that can only be ordered
extra g-tube extension tubing
Extra G tube just in case Sam's pops out
Surgical lube
venting tubes
medical gloves
Syringes (5ml, 10 ml, 20 ml and 60 ml)
2x2 split gauze pads
Ointment for the g-tube site
O2 (just in case)
Pulse Oximeter
Prevacid
Nebulizer
pulmocort
atrovent
xoponex
astelin
vitamin
Plus all of the regular baby stuff one would need to travel with. Hmmmm wonder if am forgetting anything. Anyone have any ideas????

OK now Sam is going to be watching a ton of movies and we (Scott, me and Jeff) are going to be listening to music. I have started organizing my ipod into different travel mixes that we all might like. Now Scott and Jeff (our brother-in-law) are dorks so they may not like anything too cool lol.... Any suggestions of travel songs. Oh by the way the reason why Jeff is coming is Scott cannot drive 5 minutes without getting lost or falling asleep behind the wheel so Jeff will be there to help me drive, bring on some moral support, positive energy, and help out with whatever else we may need. He is such a trooper to offer to come. We love you Jeff... Thanks a bunch!

Check It Out!

So Sam's girlfriend Amelia made her very first TV debut yesterday on Fox News yesterday morning. They showed Amelia, Nestor and Debbie at a therapy center that does very intense physical therapy with something called a therasuit. This is one of the new waves in physical therapy and one that has been helping children with all kinds of motoric impairments make miraculous strides. They also showed Amelia and Debbie in a hyperbaric chamber. A hyperbaric chamber is the medical use of oxygen at a higher than atmospheric pressure which in theory can help children with CP because the 02 given this way is said to increase brain cell activity. Amelia has made some great gains since starting this program. She has been there for almost a month and her last day I believe is this friday. Check it out, its really cool.

OK I am having trouble pasting the link for some ridiculous reason. Go to Sam's friends on the right side of the page and click on Amelia...

Sam's OT Session

I have been recording a lot of Sam's therapy sessions since he started early Intervention almost 2 years ago. Now that Duke is coming up really quick (1 week from today)we have been taping more frequently to see if we can track his progress pre and post stem cell infusion. This is a video from one of Sam's occupational therapy sessions with Keith. Thank g-d Keith loves Sam because he hates dealing with me as I am one of the biggest PIAs ever. Keith happens to be an AMAZING OT and we feel very very lucky to have him working with Sam.

In this clip Keith is working on building Sam's upper body strength. Sam has a difficult time bearing weight through his arms but he tries so hard and is such a sport about participating in all of his therapy. Sometimes Sam needs a little pep talk from mama to complete a task. See for yourselves...

Make an on-line slide show at www.OneTrueMedia.com

NICU

This is a blog that I cut and pasted off of our friends Jason and Val's blog. I have a link to their blog on my main page "Tyler." I was apalled at the comments that were written regarding this article. Some people can be so heartless and could care less about others misfortune until of course it happens to them. Feel free to check out Jason and Val's blog as they have the link to the article along with a link to the comments. http://jasonandval.blogspot.com/2008/06/million-dollar-babies.html
Million Dollar Babies
In this week's Business Week there is an interesting article on the cost of saving preemies in the US. It says that $26 billion a year are spent for NICUs to save the lives of preemies (those born less than 37 weeks), which account for about 13% of all births. Of course, this story hits home for us since we've gone through a pretty rough course with Tyler over the past 2 years--and counting.

What's interesting are the comments on the article, especially those arguing that the money can be better spent on saving less critically ill children (i.e., that it's better to spend the money to save 10 lives than to save one), or that parents should let preemies go because they are suffering and won't have "quality of life." I'd like to see if these people still think that if this situation ever happens to them. It's easy to judge from afar, but don't pass judgement unless you've walked a mile in my shoes.

I Did It!!!

I just changed Scott's cell phone ring. It is freaking hysterical. Probably sooooo inappropriate for the corporate world but oh well... I changed the ring to "Push It" Salt -n- Peppa style... Oh man he is going to be so embarrassed. Maybe he will comment after his phone rings while he's at work. We shall see...

WE GOT THE DATE!!!!!!!!!!!!!!!!!!!!!!!

We got the date for DUKE!!!!!!!! Words cannot even express the amount of joy that I feel right now. We are going, we are really really going. The date is July 1st! Please pray that Sam stays healthy and we get down there safely. OK, so now that we have the date we are going into lock down mode. No one is allowed to come and visit until after we get back. As for the therapists... If you see a child that you even think may be sick stay away from us please. Thank you so much everyone for all of your support, thoughts and prayers. More on this later...

My Poor Husband...

In my last post I mentioned that I love to annoy people just for my own entertainment purposes, but let's be honest, other people think some of the things I do are pretty damn funny. My most favorite person to annoy is Scott. Example... Scott is a technological moron. He cannot even work the remote on our DVD player let alone change his ring tones on his cell phone. So for fun I change his ring tones behind his back. I usually put a ridiculous song on that would really embarrass him. Scott usually charges his cell phone at work and leaves it on his desk all day including when he has to leave his desk. The last song I put on his phone was "My Humps." His office still makes fun of him every time the phone rings. I want to put another song on but I am having trouble thinking of something really funny. Anyone have any thoughts on the topic?