MRI of Spine

Will had an MRI done of his total spine yesterday. The MRI done last year started at lower back and went down to his toes. They couldn't look at his entire body then because it would have taken too long and he doesn't need to be under anesthesia that long.

Backing up a little bit, we are seeing a different neurosurgeon that we originally started with because he transferred to another hospital out of state. I really liked the original doctor because he was not too eager to do surgery; he felt like there were other issues most important that Will was dealing with. The plan was to keep watching him and do something if necessary. The new doctor is the Chief of Pediatric Neurosurgery and my first impression of him when we met a few months ago was that he was the type that wanted to fix the problem he saw without looking at he big picture of Will. He scheduled this MRI because he wanted to see what was missing from the first one.

We went yesterday morning and Will played with the "choo-choo" (Vandy has an incredible train setup) and fed the fish outside while I was checking us in. We got called back to pre-op pretty quickly. Will refused to get on the scale, take his temp, etc. He finally calmed down and then we couldn't get him off of the scale - new favorite toy! The nurse found him some cars with a track to race, so he stayed entertained for the most part.

He kept asking for the "choo-choo" so we told him he could play when he was finished. He of course got upset when the nurse took him away, but she bribed him with a Thomas the Train sticker, so the crying wasn't as bad as the past. The procedure would take 2-3 hours, so JT and I left and went to get some lunch.

For some reason, he prefers stickers to be put on his belly. I have no idea where this started.

Did I mention this was our 7 year anniversary?!?! Not a great way to celebrate, but at least we were spending the day together. We walked around for a while and then found a spot in the hospital to sit back and wait for them to call us. Of course we kept staring at my phone, and finally it rang. The nurse was trying to get Will to talk to me, but he was way to upset and all I could hear was him crying "Momma". We got to him as fast as we could, but he was hard to calm down, as he always is. He never seems to recover well. But I can't really blame him - last thing he remembers is being taken away from us and then waking up in a strange place with a stranger taking care of him. He was not happy about the "no-no" that he acquired while asleep along with the IV, and he was trying to rip it off. I was trying to calm him down so the nurse could take it out, but he kept yelling at her to stop, which actually comes out as "TOP" when he says it. It would have been a lot cuter if he wasn't so mad! He refused to eat or drink anything. JT finally held him and they sat in a chair together. His first words once he calmed down were "choo-choo', because I told him we could go back to that when he was done. He remembers everything! We got him dressed and went back to the trains. He started coming back to himself then and finally eating and drinking.

We met with the neurosurgeon about an hour later. The full radiologist report wasn't ready yet, but he knows what he is looking for. He said that Will has a tethered spinal cord. Instead of the end of the spinal cord flowing freely, it is attached to something like a fluid sack. The big concern was that the fluid was CSF (spinal fluid) and could be affecting the brain. It was confirmed that it is not CSF - just another type of fluid. This is good news! This means that nothing needs to be done urgently. I imagine it is some type of fluid pocket/hemangioma like Will seems to have all over the place (like what got infected in his abdomen after hernia surgery). Because of his vascular issues being so prominent at where they would go in to "un-tether" the cord, no surgery is recommended at this time. We have things to watch for like bowel/bladder problems, change in walking patterns, and other neurological things. Will's strength, coordination, agility, and other movement factors are things that we are absolutely not concerned about right now. He is so active and never seems to be anything but normal in all of these areas. Hopefully that won't change! The doctor said that the radiologist did mention some areas of concern in front of the spinal cord. I think this will be reviewed by pediatric surgery and our pediatrician. I wouldn't be surprised if what he is seeing is the fluid pockets that we are already aware of (the radiologist probably doesn't know much about Will's history). I guess we will hear about that later on. For now we have planned another MRI in 6 months to see if there have been any changes. JT and I would prefer to push that a little further because we aren't really up to putting Will through this 1-2 times each year. Hopefully we can all agree to repeating it in a year, but of course we will do whatever is best for Will.

Overall, we were pleased with the continue to "watch and wait" attitude. We are going to contact pediatric surgery about his right foot seeming to get larger every day - we don't want to wait until we see them again in April or May, but nothing urgent.

Will was a trooper as always. His strength and resilience is absolutely incredible to me!

Baby Livezey #2

I am so behind on keeping up with this blog. I have several posts that I have started about holidays and Will updates, but I never seem to get around to finishing them to actually post. I'm so behind that I haven't even mentioned that Will is going to be a BIG BROTHER!

Baby Livezey is due 9/26. Everything has gone well with the pregnancy so far. I have been much sicker this time around than with Will. Maybe that means it is a girl, or maybe it is because I am chasing around a 2 year old!

We had an ultrasound at the end of 19 weeks and everything looked great. As with last time, JT and I have chosen to be surprised with the baby's gender. This ultrasound tech was apparently very nervous about this, so she turned off our TV monitor for most of the ultrasound. She finally let us look at the end when she knew she was the head. Baby Livezey was moving constantly and was stubborn through most of it, but finally cooperated and everything was seen that needed to be. I was kind of hoping that the tech would give up and just let me come back another day to finish it so that I could see the baby again, but no such luck. This will be the only ultrasound that we have since there are no problems (can't be upset about that!). We could always get one on our own (like the 4-D ones, but those honestly creep me out.

JT and I immediately thought the profile looked just like Will's did. Of course, JT has all of the dominant features, so no doubt this kid will look just like him.

We got a picture of Baby Livezey with a hand up to the face. Looks like it is thinking.

And my favorite...the very last picture shows Baby Livezey with both hands raised above head. This is Will's sign for "all done". Baby Livezey apparently had enough and couldn't wait to be done.

Will doesn't really understand. He loves to see babies, but I'm not sure it will go over to well to have one at his house. I know in time he will be a great big brother, but what an adjustment it is going to be!

Choo-Choo, Will is 2!

Happy 2nd Birthday to Will!

His birthday party was easy to pick this year thanks to his obsession with trains, or as Will calls them "choo-choo". I got his invitations, thank-you notes, banner printables, etc. off of Etsy. I had a T-shirt made with a train for him to wear. I ordered engineer hats for all of the kiddos to wear and some train whistles for gift bags. The cupcakes were set-up as being pulled by a train, and we decorated the food table with an old wooden train.

T-shirt - Choo-Choo Will is 2!

Cupcake Train

This train was made by Poppa for me when I was Will's age.

We had the party at our house again this year and Gram made the best decoration/toy ever! I found the idea on Pinterest, and as usual, she was able to go above and beyond to make it perfect! We started with a few cardboard boxes, a box cutter, and some tape. Will knew when we were done that it was a "choo-choo". We left it at Gram's office to be painted. I couldn't wait for him to see it all fixed up for his party. 

Sadly, we made a big production about it and tried to force him to play in it, so of course he wouldn't. At one point he finally got in with Kennedy, and then it fell over, so of course he was done with it for the rest of the day. The other party guests had a blast playing in it though!

Uncle Brandon provided another form of entertainment...bubbles! And not just regular bubbles...big, huge, giant bubbles! 

We had all kinds of food and of cupcakes. Will was much more eager to dive into his cupcake this year than he was for his 1st birthday cake. He was covered in blue icing!

He got all kinds of great gifts! Our house looked like a train toy store! He also got some tractors, a wheelbarrow and gardening set, clothes, shoes, and golf clubs! 

A few pics of our party guests:

Hope and Will

Maddy, Will, and Addison - He has already got the girls' attention!

Sweet Kennedy - the happiest little girl I've ever met!

Grant and Will

Max - showing us how to be cool wearing an engineer hat

 It was a wonderful day celebrating with friends and family. Thanks to everyone that was a part of it and for all of those that helped me out!

Happy Fall Y'all!

Pumpkin Patch

Gram and Gramps wanted to take Will to a Pumpkin Patch. So we went to Lucky Ladd Farms one Saturday afternoon. It was so fun! There was a petting zoo, hayride, huge slides, corn maze, and of course a pumpkin patch.

Will loved the petting zoo! I thought this lamb might come home with us.

It was lots of fun! We will definitely go back next year!

Halloween 2012

Pumpkin carving:
Will was completely uninterested. He preferred to play with the ladder, lawn mower, and other objects in the garage. When JT finished the first pumpkin, I gave Will a flashlight to hold inside of it. It lit up, and so did Will's face!

I requested a "WILL" pumpkin and JT did such a great job on it. So proud!

Costume:
I had a couple different ideas for his costume this year. Options were:
The old man from the movie "Up" - Mom found this costume on pinterest and it is absolutely the cutest.
Alligator - He loves the song that Karen sings to him about monkeys and alligators. He was a monkey last year.
Pirate - He likes the Disney show Jake and the Neverland Pirates.
Skeleton - Gramps bought Will a skeleton balloon at Publix that we named "Bones" and Will loves it! He plays "head and shoulders, knees, and toes" with it.
So then I started looking for costumes and the skeleton one was so cute! The little boy model even looked like Will.

So time for my confession of my "Mom FAIL" moment...
I washed Will's costume in the washing machine. The tag clearly said "hand wash only", but I thought that was simply a suggestion, not an instruction. So I opened the washing machine to a polyester/applique mess. Good grief! It took 30 minutes and 20 pieces of lint roll paper, but I finally got it all looking pretty again. It's just a little fuzzy now.

I had to work Halloween night, so JT was in charge of Will. He got him dressed in his costume, but Will refused to wear the hat. Our old neighbors came by to Trick-or-Treat in our neighborhood, so Will got to play with Maddy. JT said Will made it to a few houses, but he didn't really get the concept yet. Next year will be much more fun!

Update of Will's Vascular Malformation

We have now seen/met the specialists that we will be dealing with at Vanderbilt Children's. We will continue to see Dr. Thomas (urology), Dr. Neblett and Dr. O'Neal (pediatric general surgery), and Dr. Pearson (neurosurgery) every 6-12 months for follow-ups on Will. JT and I have been a little disappointed at these doctor visits when everyone wants to tell us how "impressive" and "remarkable" Will's MRI is, but no one wants to do anything about it. We have finally realized that no one is doing anything, because no one really knows what to do. Unfortunately this is something that there are no clear answers for. We will just continue to watch Will as he develops and grows and pray that this is an issue that we won't have to deal with again.

The malformation involves veins and possibly some lymphatic system. It does not involve any arteries and this is a very good thing! (If you Google vascular malformations, AVM comes up and doesn't sound too good, but Will does not have that!) Because arteries are not involved, there is less likely to be a problem in future. For now, no one thinks that surgical intervention is needed since Will has no symptoms. This is great because surgery would not be easy and Will's quality of life would probably not be so great - they would most likely remove his colon/rectum if the vessels were removed because they supply the blood flow there. 

Potential problems that we are watching for: 

- Neurological - seizures, numbness of extremities, weakness, paralysis - Dr. Pearson showed me the MRI of spinal cord area and everything looks great. This malformation is close to the end of the spinal cord, but not touching it. So hopefully none of these things will ever happen. 

- Blood clot - This would most likely occur in his right calf or foot, not in abdomen. He would be treated with blood thinners if needed.

- Vessels go deep into colon and rectum, so we are watching for any blood or severe constipation. Never been an issue so far. 

- These vessels kind of put his bladder out of place. Dr. Thomas is confident that this will not be an issue unless everything gets bigger and starts pressing against it. He will keep an eye on this with ultrasounds every once in a while.

As we always tell everyone, Will is FINE! He is growing and developing exactly as he should. I think the doctors all agree that this is going to grow with him instead of him growing out of it, but it doesn't necessarily mean that he will have problems. 

Hopefully this blog can now go back to "fun news on Will" instead of "Will's Medical Chart". 

We'll say we knew her when...

Hope just had her first music video debut this past week. It is awesome! She has worked so hard and we are so proud of her! Check it out for yourslef.

So if you are wondering who Hope is, she is Will's nanny. She started watching Will when I went back to work when he was 3 months old. She was the second person that I interviewed and I knew right away she was my pick. I had some other interviews though and of course JT wanted to meet her. Her schedule was flexible to match up with my crazy work schedule. She loves kids and had daycare/nanny experience. Most importantly, I could tell from watching her interact with Will in the first few minutes that she would love my child. Oh, and she liked Maggie too! Fast forward to now and you will see that Will is crazy about her! He knows that he is going to have a fun day when Hope shows up. They go out to eat, play at the park, make frequent trips to Target, take Maggie for walks and play ball, read books, and all kinds of other fun stuff. I think when they are at the house that they listen to music and dance all day, because that is all Will ever wants to do! We adore her and are so thankful that she was brought into our lives to help us raise Will. She has taught him so many things! Anything adorable that Will does was probably taught by Hope - pointing to his nose and tummy, sign language for "more", making a "cheese" face for pictures.

Here is Will checking out Hope's video. I love his "oh" face and then pointing to her. Will, is that Hope? Will says, "yeeeeaaaahhhh"!

So we want to spread the word about our super talented Hope! Check out her website at www.hopenix.com. I know she has a bright future ahead of her, and we hope that all of her dreams come true.

Hope, thanks for EVERYTHING that you do for us! We can't imagine what we would do without you! It's only a matter of time before you get famous and leave us someday, but just remember that we want to come hang out on the tour bus sometime!

Will - 18 Months

Happy 18 Months Will!

Weight - 27 lbs
Height - 33 inches
Will finally made it above the 50th percentile at this check-up. I think he is about 70th percentile now.

Food:
He eats a lot of the same stuff over and over again, but that is my fault because I never have new ideas for him. He loves pancakes, waffles, turkey sausage, peanut butter toast, cheese toast, turkey sandwiches, cheese, chicken nuggets, mac'n'cheese, yogurt, bananas, and apples. Sometimes he will only eat one thing at a time though, so I have to give him sausage by itself, and then give him a pancake when he finishes it. If I put both on the same plate, he will only eat one thing. I would love to complain about this, but we all know that I am the pickiest eater in the world! We try to give him bites of our food, but he shakes his head "no" and ignores us. He did eat green beans the other day, but only because I gave him a plate full with nothing else on it. When I added chicken nuggets, he didn't touch another green bean. He loves milk and water! I've tried to give him some juice, but he really doesn't like it. I'm giving him diluted flavored water now. I know it is great if he doesn't want juice, but I think he needs some flavor in his life!
His favorite food time of the day is morning cereal time with Daddy. JT brings his bowl of cereal wherever we are and Will RUNS over to him. Will then sticks his finger in the bowl demanding a bite. Watching this is one of my favorite parts of my day!

Mobility:
He is everywhere, and I mean everywhere! He walks, almost runs, and climbs. He loves to climb - steps, ladders, whatever he can find.

Social skills:
We have seen a big improvement over the past month or two of Will's reactions to strangers. He is still very cautious and it takes time for him to warm up to new people, but he gets there. We even made it through an entire church service for the first time with Will in the nursery - he even had a good time! I believe I owe this all to Mother's Day Out and Hope getting him out and about meeting people. I know he is getting older and probably getting better socializing anyway, but I really think that being in a school setting once a week has really pushed him for the better. Hope regularly takes him to Sweet CeCe's where he apparently is the greeter to everyone there.

Language:
He isn't talking much in English, but he has conversations with us, especially with JT, in what I like to call "Will-ish". He understands how to have a conversation back and forth. He says "Mamamamama", "Da", "gie", and "hi". He knows what we are saying and he will do what we tell him/go where we tell him to go. He uses sign language fro "more" and "all done".

Toys:
He loves his superhero car that he can push or ride. He is also really getting into his toy cars and trucks. He pushes them around and says "vroom". Where did he even learn that? Gram says that little boys have a "car gene" that they just know these things.
He is really wanting to play with Maggie more and loves throwing her tennis ball, He also loves throwing any other item that he gets in his hand, so we are trying to keep that to a minimum.

He threw his cheerios onto Maggie's back. Pretty good shot,
especially since she is a moving target!

He loves cords - electrical cords. This is not good! He is constantly unplugging our phones.
He also has a new obsession with the iPad. He has his own folder on it which he knows how to get to. He loves the "Cat in the Hat" book that is interactive.

He is still big on routines and patterns. When we go to Publix, he knows that he gets a cookie at the bakery.

Excuse me, I'm here for my cookie.
Thank you!

If we go by the pharmacy, he gets to say "hi" to the pharmacist. If he comes to my pharmacy, he demands a band-aid - he has watched me give shots several times, so he thinks that is all that I do apparently.

He knows when I am getting out the shower that I need my hair towel. He stops whatever he is doing and grabs it and hands it to me. Every single time!

He knows that before bed, he gets "bedtime playtime" which is a couple of minutes wrestling with Daddy. He loves it!

I think that we are going to see Will's independent side coming out more in the next few months. But even as he begins to test us, every day will still be a blessing!