I Can't, I'm Not Wearing a Princess Dress! - New TR link!!!!

[vamassey1]

I'm so sorry for the roller coaster you're riding right now. Two steps forward then one step back. You're on a long road. Hang in there and before you know it you'll be able to look back to see all that he has accomplished. You're outlook on this has been great. I'll continue to pray for your family.

 

[GoofyIsAsGoofyDoes]

And just like that things change...

So many challenges for one little fell'a.
Good thing he seems to be as tough as his Ma' & Pa'.
It don't help right now but may he get home sooner than later
Prayer and serenity to all of you.

 

[MissMaryQC]

I'm sorry to hear you guys won't be going home soon. I am glad that the fluid were caught early though. I know this will be a long road for your family, but it sounds like you have a great team of doctors with you. I hope DS has an easy surgery and that his recovery progress is steady and good.

 

[franandaj]

You guys are just on one big roller coaster ride. Hopefully you can take three steps forward and just on back instead of all the way back to square one. I know it's got to be tough, and keeping up with work and all. Take care of yourself and your family first.

 

[jedijill]

Poor little guy. Hang in there!

Jill in CO

 

[jandlinz]

Poor sweetie. I'll keep your family in our prayers.

 

[khertz]

So sorry to hear about this bump in the road. I can't imagine how frustrating this is for y'all, but hang in there and take it one day at a time. Continued prayers for you & your family!

 

[Steppesister]

Andy, I know how tough this is (and has been) for you and your family. Just want you to know we're standing with you in whatever ways you need us to be there. As we've already talked about, the shunt placement is fairly routine, but I hate to see him have setbacks in things he's already had to fight. I do know your team is a good one and that you have been asking for answers and pressing for them if you haven't felt comfortable at times. That's what great parents do. Stay the course.

 

[disneychristmasx3]

ECMO is a miracle treatment but certainly not without its risks. Your little man made it to this stage so it did its job. Now as tough as the little guy is he will get through a shunt like a walk in the park. Yes he will need to go back on the vent but he may come off quicker than you can imagine. The delays in weaning his drugs and working up on his feeds are super frustrating and I feel your pain. But your little guy may do better with both after the pressure is relieved. Thinking of you often!

 

[SarahDisney]

Sorry to hear about the setback, but it's definitely good that they caught it early. It's good that he's getting the care that he needs and hopefully things will start to improve again once they can get the shunt in and start working on the excess fluid.

 

[GoofyFan1515]

Wow Andy, just saw your update. I know you're on an emotional roller coaster right now, so focus on the positives! Thoughts and prayers for the little guy, and for Mom and Dad too!

 

[Poolrat]

Sending some pixie dust your way too!!!! This is a small setback I am sure and he can bounce back quicker and hopefully continue forward progress soon. The fluid WAS caught early and it sounds like a good plan is in motion.

 

[afwdwfan]

Still waiting to find out when surgery will be for the shunt. I think they're looking at next week.

Ironically enough, we've seen some indications that the fluid has increased and they're planning to do an ultrasound today to look at it. But despite all that, he's actually acting much better neurologically. He's been much more attentive the last few days and been better about focusing on things and interacting with us. We'd seen some smiles from him when he's asleep, but this was the first time we really saw him smile as a result of interacting with us.

 

[jandlinz]

What a handsome smile! Those first smiles always melt your heart. Continued prayers.

 

[KnK]

Your recent update filled my heart with happiness.

 

[vrajewski10513]

What a cutie!!!

 

[Steppesister]

I've said it before, but dang, Andy, he just keeps getting more and more adorable! Love that boy!

 

[MissMaryQC]

How wonderful that he's reacting better to you guys!! And what a sweet little smile he's got!

I know you said you're still waiting on many things, but this has to be a good step in his development.

My best to you and the family!

 

[Captain_Oblivious]

Gotta love the smiles! That will never get old.

 

[jedijill]

What a cutie pie!

Jill in CO