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Tuesday, August 14, 2012

Surgery it is.

For the fastest updates on our life at the moment please visit:

Sullivan's second skull reconstruction surgery is scheduled for this Thursday, 8/16/12 at 7:30am. Please keep us in your prayers.

Friday, August 3, 2012

Word Up! S turns 14 months

Today Sullivan is 14 months old and I refuse to believe it. Time just moves so quickly. Right now everything is so dramatic with Sullivan. He's happy and then it's the end of the world. Somehow it's the end of the world about every 5 minutes. Tears and tantrums are our life right now. But in between all of that there are wonderful moments. Like when he's talking or walking with his walker. When he's laughing so hard that his eyes disappear or when he's giving his infamous bear hugs. He loves swimming, playing with friends, dancing, and being outside. Sullivan also loves watching PBS. He loves pretty much every show which is nice because no matter when I need to turn it on, he'll be happy. His favorites right now are Barney and The Electric Company, which is way above his level but he likes all of the music they play and will dance while playing with his toys. It's super cute. I'm amazed at all the words he says right now.

Thank You
What's that?
What's this?
Uh oh
Got it
It tickles
Paw Paw

He'll also parrot different names, but doesn't say them regularly. He's said Kaegen and EmilyGrace.. probably a few more that I can't remember. It always catches me off guard. We've had alot of fun watching the Olympics this week I'm surprised by how into the swimming and gymnastics I've been. Matthew thinks it's hilarious how much I've yelled at the TV. I'll be sad when they're over.

S hasn't felt well the last few days; I think we're battling yet another round of the stomach virus. I wish it would leave us alone- for real. We went for a walk this afternoon to get some fresh air. S has been enjoying his wagon rides.

And when we got home there was a surprise on our doorstep- a farm! 

I posted on Facebook a few days ago asking if anyone had any farm animals that they didn't want anymore. I got some pretty cute responses. Apparently it wasn't a given that I wanted PLASTIC farm animals. A friend contacted me a few days later though and said she had found me a farm and a few animals and that they were free. Score! He loves it.

He's been showing me the animals and telling me the ones that he knows and asking me the ones he doesn't. He's a little obsessed with sorting them though. For whatever reason they must all be piled in this one area of the barn.

OCD much, son?

Thursday, August 2, 2012

Waiting for the Phone to Ring

There's not much going on around here these days, just the norm. Sullivan is talking like crazy. Some days I wonder if all this speech therapy was such a good idea! I'm joking of course. S has actually been discharged from speech with Ms. Jan. He still has speech with TEIS but Jan felt that he was doing great and that we just didn't need her anymore. I agree that he's doing well, but at the same times it scares me to drop therapies. It's all we've ever known.

We saw Dr. Kelly this week. It was a very quick appointment. He felt S's noggin and agreed that it was too narrow. He ordered a CT and we're currently waiting on insurance to approve it. They were supposed to have approved it by now so I called and check on the status of things today and was told not to expect a call until at least Friday. More waiting. It's hard wondering whether your child will have another massively invasive surgery. I actually think the waiting is harder the second time around. That's the nature of the cranio beast though. It never ends. His head will change until he's in his teens for better or worse and it's just something we'll have to deal with. Compounded on that is the likelihood of him having a fill-in surgery. The chances of that are much higher if we have another CVR. That's a hard reality; it's especially hard for my mom.

We've been enjoying more time outside these days since it's not quiet as hot in the evenings. Our next door neighbors have a new husky named Lola, and S likes to visit her. She's very much a hyper puppy and he thinks that's hilarious.

I can always tell when I'm more stressed out because I take fewer pictures. I hate that about myself. It's not like we're not still living and doing fun things. We're still going to the pool, and to church, and making neat things. I've been spending tons of time with my cranio support group moms (online of course), and much of my time the past week has been spent making a flyer for Vandy to pass out to new patient families. I'm pretty proud of how it turned out. 

My Photoshop was so rusty, but I'm thrilled that the moms in our group loved it and even more thrilled that Dr. Kelly's office, the PICU nurses, and the child life specialists have agreed to hand them out! Abby and I are loving how much our group has grown in just a short amount of time. We have 21 families now! Our hope is that between all of the different areas handing them out that we will reach all of Dr. Kelly's cranio patients and their families. If I can find any reason for all of S's cranio battles I suppose it's this. We're helping others, baby.

*Update! Our CT scan is scheduled for next Thursday. We'll meet with Dr. Kelly the following Monday to get the results.