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!

One Week

Can't believe it has already been one week since we were sitting in the waiting room, anticipating phone calls from the operating room nurses.
His stitches look better each day, the redness is fading, we still can't believe how neat and clean it is. We have tried to count stitches, but he won't hold still long enough! We are anxious to see those big beautiful brown eyes, they are open almost half-way. The swelling in his head is decreasing, we've already added padding to the inside of his helmet.
He is so happy, it is fun to watch the changes. His attention span is much longer than before. He'll sit and look at books for 10 minutes rather than just one or two minutes. He is very talkative, he names everything he sees. If we don't respond, he gets louder and more insistant. It is pretty funny since he was so quiet before. He has more patience when playing. If he can't make something work, he keeps trying, rather than screaming and throwing.
Physically, he hasn't slowed down much. He'll play hard for an hour or two, and then he'll rest for a couple hours. They said, no running, jumping or climbing. After only a week, we've already broken a few rules. It is just about impossible to get him to slow down.
After dropping Al off at school, we ran to the grocery store. I've never been so excited to run errands. It is nice to get back to normal.

We are winding down on our first full day at home since being released from the hospital. We all woke up late this morning and Ivan began to amaze us again. He was wide awake jabbering like a mad man and ready to eat. His eyes were less swollen and the bruising seems to be stopping as well. The helmet has been a little bit of struggle but it has to be on if he wants down to play. It puts a lot of pressure on his head.

He wants to run everywhere already which makes us a nervous wreck. He is so happy to have all of his toys. He does not know where to start playing, but always seems to go back to his cars and books. We were able to go outside today to swing and enjoy the sun.

We are amazed that 5 days ago that "His head was cracked open" as Alex says. I do not know if we are out of our minds, but it seems like he is already changing. The attention span has increased, the frustration and the anger have all subsided.

We are officially home. The boys are snoring away in their beds. We'll write tomorrow when we have some energy. Just wanted to get some new pictures added.

Out at Last

Dr. Singhal's nurse said that she would put in for our discharge at 12 but she said that it never goes that well so plan on late afternoon. As usual things don't go normal with Ivan. We were on our way home at 12 and it would have been earlier if they would have had Ivan's helmet size in any color but pink. We had to wait for one to be brought from CMH South. We are back together as a family which makes Al happy!
We are staying at Linda and Jerry's tonight and plan to head home tomorrow mid day. It is kind of nice because we have some help with Al since we are so tired. We are so blessed by your thoughts and prayers.

Can't wait to have everyone meet the new round-headed Ivan!

Home

Good Morning! Ivan had a rough night, but a very good morning. He pulled out his last IV (feeding tube). Around 5:00, the nurses were getting ready to start a new one. They told us that if he would eat and drink we wouldn't need the line. He started asking for apple juice and Cheerios, he ate enough and drank 6hrs worth of juice. He is completely unplugged now! What a relief.
We got him dressed and carried him around the hospital for a long walk. He talked to everyone we passed. When we got back to the PICU, we went to the play room for about 20 minutes. Ivan was alert, talkative and very happy. He is worn out and sleeping very peacefully now.
We just got the ok to go home today. We have to get his helmet fitted, get his meds, learn how to clean and dress his suture and all the usual check-out procedures. Looks like we will be leaving from the PICU (he never did get his own room). He will have a follow-up visit with Dr. Singhal in two weeks, a 3D cat scan in 6 months and one each year for four years. He won't have any long term restrictions. He has already been released for his speech therapy.
Once we are home, we'll send more pictures.
lots of love and blessings

Pictures

I do not know where to start. He made so many strides. We started off the morning by finally getting to hold him (Yeah!) In the late morning/early afternoon we were able to get him to eat some crackers that stayed down. He still is not eating or drinking what he needs to in order to go home but we are hoping that tomorrow will be a different day. The afternoon was very busy with him having lots of people coming to give their love and wanting to see his round head. I think everyone will be amazed at the pictures.

The exciting news of the day came when Ivan got to have his "Hat " (Ivan Terms) off. It was amazing to see how good it looked. The scar was clean and neat, so much better than we expected.

When Al first saw Ivan's new head, he was mad because, "I don't look like Ivan anymore." He wanted a scar too! He asked if he could have one, so we grabbed a black marker and drew a line on his head! He was so proud!

Tonight Mom and Dad let him sleep while we watched the KU game in the lobby. (Not sure Dad could have been quiet enough to watch in Ivan's room). After the game we took him for a walk around the PICU. He waved at all of the nurses and even got to see some balloons but did not go as crazy as usual. He was loving getting to see some other sites. This could be a long night for Mom and Dad, we were unable to get into the Ronald McDonald room so we will probably be sleeping in the lobby. No big deal as long as he is sleeping well.

The top picture was taken on Tuesday, the day of surgery. The bottom picture is from this morning. Looking good...

happy spring!
Ivan had another good night. We got to hold him for the first time today. He ate a few Cheerios and some yogurt, good news, until it came back up a few minutes later. His drain tube fell out early this morning while he was fighting with the nurses that were taking his blood. They decided to leave it out for now. He is down to only two iv's. He has been more alert today. Still in the PICU, hoping to have his own room today. (Daddy wants to watch the KU game.) We'll let you know if we get moved. Slowly making progress.
Again, we are hoping to send pictures later today. The USB ports on our laptop aren't working.
We are so proud of him, can't wait to show off his perfect, new round head.
We love you all, we are feeling so very blessed...

Al is here with us. He thinks Ivan looks "fantastic"! The three of us just got back from the cafeteria, now we are hanging out in Ivan's room. Al had a million questions about all the iv's and tubes and monitors. He was very relieved to see the nurses taking good care of his brother. He was thrilled when Ivan blew him a kiss goodbye.
We've been trying to get him to drink some water, but he isn't interested.
Talked to Dr. Singhal earlier, Ivan's recovery is staying on schedule.
Ivan was a little more alert this morning. He was asking for Alex and he kept asking us to sing to him. Each time he senses a nurse coming near, he fusses and says, "all done". His breathing is quieter than yesterday.
Hopefully we will be in a new room later today. Also hoping we can send pictures.
While we were at lunch, Grandma and Grandpa hung out with Ivan and said that he started to suck his thumb for the first time. That is a good sign!

5:00am

We went in to see him this morning and the PICU nurse said that he had a good night. She had to turn him around a couple of times because he wrapped himself up in the cords and we had to laugh because he is such a mover at night. As for us we were able to get a little bit of sleep. We sure are glad that they have the Ronald McDonald Room. What a great thing for parents.

We are hoping to be able to add some picture later today so everyone can see his new round head.

We were told that there was an issue with comments yesterday on the blog but we changed some settings so please try again. We would love to hear from everyone!

Keep the prayers going for our little Bear!

7:00pm
Ivan has a beautiful brand-new round head. It is mind-boggling! He is in the PICU resting peacefully. He is pretty swollen, but already his eyebrows are longer and thinner, and the slits of his eyes are much longer than before. He has tried to open his eyes a few times, but they are starting to swell closed. The nurses have already taken out two of his IV's, they said all his labs and vitals are perfect. His recovery is right on schedule. Tomorrow he will move out of the PICU as soon as a room becomes available.

Chris and I were able to get into the Ronald McDonald Family Room tonight. We have our very own little room, with a big bathroom and shower down the hall.
So many blessings, we've lost track...
Thanks for the many, many prayers. We love you all...C,W,A, and I

Is anyone out there? Send us comments, we'd love to hear from you!

1:15
Just got done visiting with the doctor and Ivan is in waking up. He did great and he was probably feeling pressure. They say that we can see can see him around 2:30. He is such a fighter. We will give more updates later tonight.

Keep the prayers going!

Chris and Wendy

8:51 Just had a call from the nurse in the operating room and they had started the surgery. They said that he is doing good! Mom and Dad are doing OK now but it sure was tough this morning seeing him be so happy knowing what he is going to feel like later. They say that the surgery should last between 4 to 5 hours so we will update when we know more.

Keep Ivan in your prayers for us!

Chris and Wendy

Just got back from the hospital. They took another blood sample. They are double checking his blood type before they do transfusions tomorrow. Al said if the nurse goes near Ivan again, we need to call him right away. He said he will come up to the hospital and tell her to leave his brother alone.

Surgery is at 7:30 am. We'll add another post as soon as possible.

Grocery stores, parks, playgroups, library, church... we didn't go anywhere. It was a long two weeks, but after lots of Clorox wipes and Wet Ones, Ivan has stayed healthy. They warned us that even a little runny nose would postpone his surgery.

His first outing was a family trip to the barbershop.

Dad and Al decided to shave their heads along with Ivan.

Needless to say, we got quite a bit of attention .

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