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

Christmas Vacation!!!

7 Months Old

He really likes his highchair. Although it is a Christmas present, we gave it to him a little early because he was ready for it.

Nick graduated!

I am getting better at capturing smiles, usually by the time the picture takes he has a startled look on his face, but I think I might have figured it out.

Vince is getting ready for his graduation too.

We wanted to wish everyone Merry Christmas a little early. We hope your holiday season is going well so far. Nick, Vince, and I have been enjoying our vacation. We all have two weeks off. Because Vince is not a fan of long car rides we will be staying home this year. The last trip up north ended with a 6 hour car ride when it normally takes 4 and a half because Vince was so upset. With that our parents will be coming down to us, which we are very thankful for. Everyone has been healthy here which has been great. Vince continues to work really hard at therapy and has been improving. He is working on sitting and almost has it. He can now catch himself when he starts to tip, but sometimes he has too much momentum and can't stop himself, but he loves it. We have also started working on 4 point which is just where we put him on his knees and hands and help get the feeling of crawling. He really hates this, but we know with time he will love it and before we know it he will be crawling and getting into everything. Vince is also getting something called a parapodium on New Years Eve. Because he is starting to bear weight on his legs they want to get him started right away with standing and it will help him with that. Once we get it we will be sure to post some pictures. Other than that we are just really looking forward to our first Christmas as a family of three. Again Merry Christmas to everyone.

Love,

Nick, Andrea, and Vince

December Already!

6th month professional pictures

This is really how the session went, the photographer did a very good job of getting some good shots.

Our first "real" family picture

Avocado's, he seemed to like these quite a bit.

Happy Thanksgiving! We are also starting to practice with a sippy cup.

Messy carrots

The count down to Christmas has begun. We cannot believe how fast time has gone, Vince is already 7 months old! Since the last post we have had quite a few appointments so I will start with those.

Vince got his 6th month shots which went well, he did not cry too hard, he saw Dr. Warder - his Neurosurgeon, the GI specialist - Dr. Atay, and had Myelo clinic. Overall everything went really good. His Neurosurgeon appointment went well, everything is looking how it should and we don't have to go back for 6 months. Dr. Atay liked what he saw and said he did not need to see Vince again for a whole year. Once we start potty training we will start seeing Dr. Atay more, he has worked with SB patients before and is confident Vince will be potty trained. Myelo Clinic was very busy but they were all very impressed with how he is doing. We saw a Nutritionist, Pediatrician, Neurologist, Social Worker, Urologist, Physical Therapist (she had another type of doctor with her but I cannot remember what type), and the clinic coordinator. We were there from about 8 until 12 and Vince did great, he missed a meal and a nap and did not fuss at all. For any of you who have seen Vince lately you know that he has some very cute chubby thighs going on so the Nutritionist was not worried at all. He passed all of the little tests that the Neurologist did, I think the Social Worker was there more for me and everything was good, the Urologist said his kidneys were steady so that means everything is still good there. In about 3 months we will have a more extensive test done to test his bladder and the capacity that is has. The physical therapists thought he was doing great. Because Vince is starting to bear weight on his legs they prescribed a device for him that will help him continue to gain strength while standing. He is being fitted for it on the 16th of this month. At this point they see him using all of the muscles in both of his leg and are not going to brace him yet. They want to see how he progresses first. They did say that his left leg is a little weaker than his right, but we knew that, they did say that they think it is not because of the muscle development but because of the nerves in his leg, which we had not heard before. This should not effect his ability to walk, but he may need a brace when he starts to walk for it and with physical therapy it will continue to get better. All in all it was a very good day.

Lets see what else. We have been working with food, he does not seem to really like it or really hate it, but he is not very sure about it. So far his favorite are pears. It is fun watching him as he tries something new. Vince also celebrated his first Thanksgiving. It was a great day we went to Aunt Kathy and Uncle Paul's house first and saw a lot of family. Vince and Emme played on the floor for a little while until she rolled on him and he did not like that very much. Later we went to the Jackson's house and had a great dinner there. Nick finished his MBA and we will be going to his graduation on the 13th. Overall we are having a lot of fun and getting in the Christmas spirit. Like I said in the beginning the count down has begun and this year Nick, Vince, and I will have a whole two weeks off together which we are really looking forward to.

Wow, sorry that was a lot of information. We will try to update more often so we don't overwhelm you in the future. We hope that everyone had a great Thanksgiving and we hope you all have a great holiday season. Thank you for all of your love and support this year.

Love,

Nick, Andrea, and Vince