Six Weeks Post Surgery

Whose kid is this? It is good to have so many pictures of Ivan smiling. Before his surgery it took at least two people acting like clowns to get a decent picture of him. He has been keeping me really busy lately, that's why I haven't posted in so long.

New changes are still coming each day. Most of the stitches are out and the swelling is really decreasing. He is gaining weight and seems to be getting taller. We are anxious to watch him grow over the next few months. If he still isn't catching up, we will go to an endocrinologist for an evaluation.

When Ivan turns 3, our local school district will coordinate his therapy and education. Olathe has a new early childhood/special education school, Harmony Early Childhood Center. We went to visit last week, it is beautiful. I'm hoping he will qualify for services at Harmony. If he does, then he will have preschool either 2 or 4 mornings a week depending on his needs.

Ivan is still obsessed with cars, balls and being outside. This morning it was thundering and lightning and he was yelling at me to take him out. He can tell us how old he is going to be, and he is helping me read his books, and finishing the end of a song we are singing. Although his speech is improving, it is still difficult to understand, he gets very frustrated with us. I'm just praying for patience to deal with his new blessings.

Al wants everyone to know that he lost his second tooth and that he is playing t-ball this summer!

Before surgery and one month after

It is hard to believe it has been one month since Ivan got his new round head. The changes are incredible. We have had a blast watching him embrace his new world. The first picture was taken two days before surgery, the other was taken today. He is starting to count, he only gets to two, but it's a start! He can name a few numbers and spontaneously points out colors, he even gets it right sometimes! He is continuing conversations with us, rather than waiting for us to tell him what to say. If we say, "Hi Ivan", he'll say "Hi Dada" without us prompting him first.
Thank you to Mary Ellen (Ivan's speech pathologist) for discovering Ivan's synostosis. Thanks to Dr. Singhal for giving Ivan a beautiful round head and a new life. Thanks to all of Dr. Singhal's nurses, Leah, Diane and Margie, who took care of Ivan and us too. Thanks to all the PICU nurses, Lauren, PJ, Amber, Nicole, and Christie. Thanks to all our friends who brought us dinner after surgery and gave me a shoulder to cry on before surgery. We love you all.
And especially thanks for all the prayers. What a miracle...

Four Weeks

Ivan is changing so fast it is hard to keep up with him. At the grocery store today, he told me everything he saw; bananas, yogurt, apple juice, chicken, milk, crackers, etc. He would say each word over and over, he was so excited and proud of himself. We went to the Deanna Rose Farm on Monday with some friends. He had a great time chasing the ducks and yelling "quack, quack". He pet the goats, and mooed at the cows. Each time he saw an animal, he'd make their sound as loud as he could. The last time we went to the farm he didn't even notice the animals.
He has bumped his head a few times by running into something or falling. It seems to scare him, he seems to know that he needs to protect his head. As busy as he is, we have been keeping his helmet on unless he is sleeping or in the tub.
Ivan is loving life, he always wants to be outside or on the go. He even has skinned knees to show off.
The stitches are starting to fall out. Ivan's first 3D CT scan is in October. We go back to Children's Mercy. While he is in recovery, Chris and I will meet with the surgeon. He will review his progress and show us the scan. It will be interesting to see his new skull with all the screws and plates.
If you are curious, Ivan's condition is called metopic synostosis, just realized today that I never put that on the blog. Or as Al says, "Ivan had an oval head, so his brain didn't work right, now his head is round so he understands better".
On the 20th (Ivan's one month celebration) I'll add some before and after pictures.

Happy Happy Happy

Hope everyone had a happy Easter. We celebrated Ivan's new life. I cried happy tears all day.

His brain function improves each day. He is starting to understand his world and make connections --- yesterday when the phone rang, he put his hand to his ear and said, "hello". He'd never even said "hello" before. He is also starting to pretend play with his toys. He surprises us with at least 2 or 3 new words each day.

This week we've been getting back into our routines. Ivan went to playgroup on Monday. He was so excited, jumping up and down, giggling and showing us the sign for "play" over and over. Ivan restarted physical therapy, our parent educator came and tomorrow we restart speech therapy.

It has been fun to show off his new tricks! I can't stop bragging about him.

Two Week Check-Up

What a great day... Ivan's check-up was perfect. Chris had the day off. After the doctor the boys and I went to visit Lauren (one of Ivan's favorite PICU nurses). We went to Crown Center. They played at the Under the Sea exhibit. We ate lunch at Fritz's (the choo-choo train restaurant). Chris and Al went to the Royals game. ...life is so good!

Dr. Singhal released Ivan for his speech and physical therapy. We can get back to most activities as long as he's wearing his helmet. The swelling won't be completely gone for 3 months. Each morning it seems as if his eyes are open wider. His speech is coming so fast. Today he repeated 7-8 word sentences. Pretty incredible, we were working on 2-3 word phrases less than 3 weeks ago. Now we need to focus on intelligibility. It is remarkable how quickly he's recovered.

Can you believe that round head? I love these pictures, he is so happy. We are so proud of him.

He's Back...

and feeling no pain! Ivan's surgery didn't slow him down for very long. He's ornery and destructive one minute, and the next he is giggling and giving kisses and hugs.
Each day he discovers something new he can do. He started singing a couple days ago. We love hearing the melodic babbles he is trying to make into a song. He is trying to make letter sounds that he wouldn't attempt before. He seems to understand us better. He does get quite frustrated when we don't understand him. He loves to snuggle a lot more than before (my favorite change!)
The stitches are still in, the swelling has really reduced. He is a little lumpy, but his hair will cover up the lumps. He has some soft spots on his head where there isn't a plate, screw or bone. They will fill in as he grows new bone, it will take up to a year or more.
Ivan's surgery, frontal orbital advancement, was first performed on adults in the 60's. His nurse said it has been in the last 10-20 years that they have been performing it on infants and toddlers. Pretty amazing---
Ivan's first check-up with the surgeon is this Friday, the 9th. We'll blog and add pictures that afternoon.

...counting our blessings...

Day 10

Looking Good! Ivan loves to be outside, so we've been spending lots of time on his swing. I can strap him in and keep him contained - always good for my sanity! The stitches are already coming loose. Can't tell if any have fallen out yet. They are like heavy fishing line. We are guessing there are 150-175, that's a lot of sewing! Thankfully he doesn't mind getting them cleaned and medicated(3 times a day). We've added even more padding to the inside of his helmet.
Added a picture of Al, you can see how fast their hair is growing (plus he's kinda cute!) PS. Got Al pre-enrolled for kindergarten. He is so excited, he's jumping out of his skin!