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Ready for surgery in my pink gown. Everyone thought I was a girl.

After surgery. So tired.

Ready to go home.

My scar.

Good news. Vince was released from the hospital today so we are now back home. He did not sleep well last night, but woke up this morning and has been smiling and alert and pretty much acting like he normally does. I think he was ready to come home because as soon as we got in the car, he was smiling and laughing. He has cried a lot during car trips lately, which has made some interesting trips for Andrea to and from daycare and physical therapy. So he must have known we were on our way home today. We will go back next Friday to get his stitches out and will probably have another follow up in a few weeks for scans to make sure the shunt is working properly. Hopefully this one will work for many years and we won't have to go through this again for a while. Thanks again to everyone for your thoughts and prayers. Now maybe Vince will let us sleep tonight.

Love,

Nick, Andrea and Vince

A New Shunt

I just wanted to let you all know that Vince had his surgery this morning at about 10, it took about 2 hours and everything went well. He was in recovery for about 2 hours (we got to be with him there) and has been resting comfortably ever since in his room. Tonight he was awake for a while smiling, and playing with his toys, so he is feeling pretty good. I will post more later, but we are very tired and ready for some sleep. Thank you everyone for your prayers.

Love,
Nick, Andrea, and Vince

8 Month Pictures

Here are some pictures of Vince at 8 months.

Good News/Bad News

First the good news. Friday we took Vince in for an EEG and a follow-up with the Neurologist. The EEG was to check his brain activity to see if we could start weening him off of his seizure medication. The doctor checked the results and said that his brain activity looked to be back to normal and said that we could start reducing his dosage and be off of the medication in about a month. That was really great to hear.

Then came the bad news. She had noticed that Vince's head circumference measurements had increased more than normal since his last appointment there. She then saw that his eyes didn't move up without moving his head up to look at objects. She said that these could be signs of a shunt malfunction even though we had not seeen any of the typical signs that we are supposed to look for. She thought that there might be a blockage in the shunt that is not allowing the fluid to circulate properly so it is building up in his brain and that it would eventually get to the point where we would have seen other symptoms but it hadn't gotten that bad yet. She sent us down for a CT scan to verify and it showed that his ventricles were enlarged and that he would need surgery to replace his shunt. So we are going in on Monday morning to meet with the Neurosurgeon and Vince will most likely have the surgery on Monday. It's good that they caught it early, but it really took us off guard because he was not showing any of the symptoms of shunt failure.

We'll post updates after the surgery to let you know how he's doing.

Love,
Nick, Andrea and Vince

Parapodium

I finally was able to get a video of Vince in his parapodium. I apologize for my poor filming, I am sure the more I do it the better I will get. Vince seems to like it, and we think it is making a difference. It is working the muscles in his upper back and he is sitting up much straighter now. He is only in it for about 15 minutes at a time but has done as much as 30 minutes. The doctors would like him to use it for 2-3 hours a day, but we have not quite been able to get it all in. He has been doing about an hour at Amy's house and we try for a half an hour at home. Amy (she watches him while we are at work) has been great with all of his physical therapy stuff. If he keeps improving like he has been, they think he will only have to do this for a couple of months.

Love,

Nick, Andrea and Vince

One Year Ago

Vince got cool new shoes. He needs them for his parapodium, which we will add pictures of in the next post and explain what it is all about.

Chirstmas Eve. Vince was pretty tired, he fell asleep during church, which really suprised us.

He was not to sure about his new hat, but I think he likes it now.

He also got his first basketball hoop, he will be ready to take on his dad very soon.

First of all, we hope everyone had a wonderful Christmas and New Years. We did, it was wonderful to spend our first one together at home. Both sets of Grandparents made it down during our vacation as well. Vince got a lot of toys and clothes. Even though he did not quite get what Christmas was, it was still fun to see him open presents. He seemed to like the paper more than the gifts, I am sure it will be different next year. New Years was nice, we all stayed home this year and Vince even tried to make it to the ball drop but he fell asleep at 10. Vince also got two teeth over break. He got his first one on Christmas day and the second one on New Years Eve. We are both very happy he got them because teething was really hard on him. I know he has a lot more to go, but I have been told the first couple are the hardest. I hope that it true.

Secondly, one year ago today we found out that Vince had Spina Bifida. It is really weird because I remember the day so vividly and yet it seems like it was so long ago. It is hard to believe that so much has happen in just one year and although 2009 was one of the best we have had to date, it was also the most challenging one we have had. In a years time we have gone from knowing nothing about a subject (in fact I could not even pronounce Spina Bifida at first or Myelomeningocele) to knowing way to much, but I still would not consider us experts as with every day there is something new to learn. Vince has been the most wonderful thing that has happened in our lives and has shown us what it is to be heroic and brave. He has truly taught us what love is and I know will continue to teach us the meaning of many things. To anyone who might be reading this who is just starting on the journey, pregnancy really is the hardest part. The NICU is not much fun, but at least you have your baby in sight and once you get to take your baby home everything feels right. There are many ups and downs and it is easy to be paranoid about everything, but try to just enjoy your family. We know that our journey is really just beginning but today feels like a momentous day, we have survived our first year and I think we have been somewhat successful with it. I know we have said this a lot, but thank you for all of the love, support, and prayers this past year. We know that they have made a huge difference.

Love,

Nick, Andrea, and Vince