Home!

Yay! I'm SO glad to have him home. He's still a little out of it, and not quite himself. Also a little swollen from all those fluids he got. But he's home! His incision looks bad, but they used that glue to close it up instead of sutures. I'm just so glad its all over. Man what an ordeal!

Done :)

The surgery went well! Turns out the cathater/tube that goes from the shunt to the ventricles was clogged! Stupid doctors, they need to learn how to listen better to the parents - I mean who knows their kid better than the mom!!!! I told them and told them that it was his shunt and they swore that it wasn't because his CT looked good. So he is snoozing now - he's eaten a little and kept it down! Yay!!! The neurosurgeon said if he has a good night that he can go home tomorrow. YAY!!! I want him home sooo bad. I'm staying at the hospital tonight with him - thank goodness for wireless internet! :)

Surgery scheduled

for around 11 this morning. My husband stayed all night with him so I could come home and sleep and stay with Emmy - OMG I was so tired. He said Joey just slept - he's so lethargic. Poor guy! I'll post again after the surgery to let you guys know how it went. Keep him in your prayers!

What a loooooooong night

I believe we are dealing with our first shunt malfunction. Yesterday afternoon Joey went from happy - fussy in about an hour. Then he threw up. He was being quite lethargic, and while I was holding him I noticed his soft spot was bulging slightly. That sent me into panic mode - immediately I thought it was his shunt. So off to the ER we went. We actually didn't wait very long - I guess an infant puking everywhere in the floor alerts someone LOL. Poor little thing was SO dehydrated that they couldn't get an IV in him for anything! He got stuck like 10 times. Finally they got an ok from one of the neurosurgeon residents to do a scalp IV (these are usually a No-No to a child with a shunt - it was eventually taken out). Well after being observed all night with no bottles or anything, he just slept mostly. This morning I gave him a bottle, and he threw that up EVERYWHERE. Waited a while, tried again. Nope. Tried pedialyte, because I knew he had to be out of whack. Nope, that came up too. At that point he got the scalp IV, and that managed to get him hydrated enough. He also got anti-nausea meds. That must have done the trick, because he hasn't thrown up since. Poor little thing has been sooo sleepy. He was seen by several neurosurgeons, and they had the general concensus that it wasn't his shunt, but that he had a viral infection. What that had to do with his soft spot bulging, I have no clue, so I asked again to see the neuros to see what was up. FINALLY, the cheif neuro came in who is also the one who placed his shunt at birth. This guy is the bomb. I wish I could have seen him when we got in, because he immediately agreed with me that its the shunt. He did get a CT and Xrays in the ER and those came back ok (they even said that his ventricles looked the best they have ever seen them) but I was just worried about that soft spot. He felt it and agreed, so they tapped the shunt and the fluid was clear, but they weren't able to get any out other than what was in the little tube going to the syringe. That's not exactly normal, so I guess its a good chance its not working right. So as far as I know right now, he is going to have surgery sometime tomorrow to look at the shunt and see whats up. I just hope its not infected - that means a week hospital stay and I want him HOME! Seriously, my heart is breaking that he's not here. :( I stayed with him last night while Lee stayed with Emmy, so tonight is my turn to stay home with Emmy, which is AWESOME because I didn't get a wink of sleep and I need a shower badly. So I'll update as soon as I know something. Pray for my little guy!!!

Been a while :)

I haven't posted in a while! Everything is still going amazingly well! Joey is doing awesome with PT - he makes progress every week. He has awesome head control now - we are working on helping him hold his upper body steady now along with his head. He isn't quite rolling just yet, but he's getting there. He isn't really interested toys, but he's getting better with that too. He loves to look at his hands! It's so adorable.

On another note, my big baby turns three next month! Where has the time gone?

What a talker!

Joey loves to talk! He's recently figured out that he can gurgle, so now he does it non-stop. It's so cute! Here's an example :)

Whoa!

Joey had PT today, and he totally kicked butt! I think he got more done in 30 minutes today than he has in the whole time he's been getting therapy. He's had trouble with lifting his head, so we've been working on tummy time a lot. She brought one of those swim noodles to use for tummy time. She cut a small piece and put it under his armpits and propped him up on it. He lifted his head RIGHT AWAY! AND he held it up for almost 10 seconds! I'm so glad she brought that - I was so excited I nearly cried :) She also brought a pinwheel and he followed it 180 degrees. All the way from one side to the other. This is a big deal because he can't move his eyes from side to side yet, but he's starting to do it. And he stays focused on objects a lot better than he ever has. So he locked on to the pinwheel and followed it all the way over. I'm soooo happy!!!!!!!

ALSO - September is National Hydrocephalus Awareness month!!! Spread the word!