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!