Since You've Been Gone

I know it's been a super long time since I last posted.  But life with a 2 year old has been extremely busy.  Things have been going fairly well with Braydon's head shape.  However about 6 months ago we noticed that it was a little bowing in the front.  We saw Dr. Miller, and he suggested we talk to Dr. Puccioni.  It took about a month for us to be seen, but that's ok we weren't that worried.  Pretty much he told us that the decision to have the 2nd surgery was ultimately ours.  It would strictly be cosmetic and at that point in time Braydon's head was borderline in what he would recommend getting fixed.  So we decided to wait and see.

In the meantime we had Braydon's 2nd birthday party.  Of course it was Thomas the Train themed.  Braydon loves Thomas as well as all trains.  But what 2 year boy wouldn't love trains.  Don't get me wrong, he loves sports too.  Every time there is a football game on, he says "football awesome."

Braydon seems to be hitting his milestones nicely.  He's starting to speak in sentences, knows around 50-75 words.  He knows his letters and is starting to count to 5.  As far as growth is concerned his head is 51.25 cm (96th percentile), 31 lbs (71st percentile) and 33.75 inches tall (26th percentile).  We couldn't be more happier with how things have turned out.

Which leads us to today.  We had our follow up with Dr. Miller this afternoon.  He pretty much walked in and said his head looks great.  That we probably won't need the 2nd surgery, but he still wants to follow up on a yearly basis to make sure the skull continues to grow.  So since we got such good news today, we would figure that we would share some more good news with you.  Braydon is going to be a big brother.  Baby B-2 is scheduled to arrive in early April.  We couldn't be more thrilled, however very cautious.  While we know that Braydon's condition was a "fluke", we still are concerned that any subsequent children we have might have the same condition.  If it were to happen again, at least we are "prepared" for what is going to happen.

I hope that everyone has enjoyed their summer and gets to enjoy the fall (that is if you even get one).

It's Been A Long Time Coming

Wow, I can't believe it's been 5 months since I posted.  But life with a toddle is interesting at best.  We've been used to the walking, but now he's climbing on everything.  And well let's just say he's like his mommy and likes the electronics.  When I finally get time to sit at the computer, I'm to exhausted and want to go to bed.

It's been an interesting 5 months, Terry had to have a benign lymph node removed in October.  We were worried that it might be cancerous, but luckily for us everything checked out.  We finally got to enjoy the holidays this year, I even attempted to help cook Thanksgiving Dinner.  I more or less watched my mom do it, but I'll know for next time.

We also got to enjoy Christmas with our families because we didn't have to worry about getting Braydon sick before his surgery.  Unfortunately, we were the ones who were sick.  So hopefully we didn't pass our germs on to everyone else.  Braydon was uber duber spoiled at Christmas.  I literally thought Santa threw up toys all over my living room.  But you know what, he plays with them all and is super happy.  He's also a very healthy 17 month old.  Who would have thought that would be the case after the past 17 months.

It's hard to believe that a year ago tomorrow, we trusted our babies future in the hands of 2 surgeons we barely know.  Now we owe them everything for what they have given us.  Everyone comments on how perfectly round his head is and there are NO signs of brain damage or any trauma.  He's a babbling, running, climbing, all 17-month year old little boy.  I couldn't imagine life without him.

I hope that as he gets older, I'll be able to write more just so we aren't doing the 6 month updates.  He changes so much from day to day and I would like you to all enjoy him as we do each minute.  But to tie you over, here is a before surgery picture and where he's at now.  And yes, he's now a blondie.

Before:

After:

Life on the run...

I know it's been a long time since the last time I posted.  You all probably thought I had forgotten about this blog.  But life with a mobile 11 month old has been crazy.  Since the last update we have gotten 2 bottom teeth and the top 2 have broken through.  We learned to crawl and went to see Grandma and Grandpa Pitzer in Louisville.  So we got to go on our first airplane.  Over the last couple of weeks we have even started to walk.  Every day Braydon takes more and more steps.

This makes me cry tears of joys.  It's amazing that 6 months ago we were awaiting a surgery and wondering if our baby boy was ever going to be "normal".  He was perfect to us, but to other standard he wasn't.  He wasn't hitting his milestones and his head was shaped like a football.  It was 6 months ago that we took him to Children's Hospital and left our baby boy's life in the hands of 2 surgeons.

Now 6 months later and you could have never known that he had super dark hair when he was born or that his head was shaped like a football.  You would have never known that he cried all night long or that all he ever wanted was to be held and lay still.  Because all he wants to do is go go go.  He has super blonde hair and his head is perfectly round.  He's walking at 11 months and hitting the milestones at a lot earlier age.  He's learning to use the sippy cup, but I still think breaking him from the bottle is going to be hard.  He eats all table food now, even though Terry mashes it up to look like baby food sometimes.  He worries that Braydon is going to choke.  Braydon likes to stuff handfuls of food into his mouth. 

We always thought we were going to have a baseball player, but we might end up with a linebacker.  As this little guy has learned the art of charging the dog or us and lowering his head.  I worry that his head will break, but he shows no fear.  He is our miracle and I thank god every day for the blessing that he provided us.  Times were tough and they still can be trying, but I could never imagine having as much strength as our little boy had when he went into the operating room.  I also wish I could live without fear the way he does, but hey someone has to worry right?

In less than one month we will celebrate his first birthday.  It's amazing how far we have come in the past year and can't wait to see what the future has in store.

Before Surgery -

After Surgery -

Braydon is an Angel

Braydon's story has been posted to Avery's Angels.  This is a non-profit group started by a mom of a cranio baby.  She started off making headbands for little girls and now is making do-rags for little boys.  Please read Braydon's story.

Braydon's Story

 

Also Braydon's picture is featured on the Sagittal Craniosynostosis description page.

Sagittal Cranio Synostosis

Can you believe it?

I know it's been a long time, but living with a curious 7 month old, doesn't leave a lot of time for blogging.  Yesterday we hit the 2 month post op mark.  And you would never know that Braydon went through major surgery unless you noticed his scar.  His hair is growing back blond and the incision site is healing up very nicely.  Also his head shape is very good.

Braydon has started to try and crawl.  He tries to grab the carpet in front of him to pull himself.  But he gets around a lot quicker when he rolls.  He will also scootch backwards.  I can't believe how big he is getting.  I really miss the newborn stage when I could just hold him and snuggle him.  But I don't miss the staying up all night.  Braydon will sleep from about 7:30 at night to about 5:00 in the morning.  He will go back to bed if you snuggle with him for a little bit.  He's eating fruits, veggies and dinners 3 times a day and will even eat a Vanilla wafer or 2.

He babbles a lot unless you put a phone or get him on the webcam.  I think he gets camera shy.  It drives my dad nuts because he wants to interact with him, but he can't.  At least they come back a lot.  He still has only really said Da Da and Ba Ba.  But we are working on Ma Ma.  I'm sure he will surprise me with it one day.  Until next time Braydon says keep on smiling.

1 - Month Post Op

Wow it's been 1 month since we handed our little guy over to the surgeons.  Braydon is doing great.  His incision was infected, but it seems the antibiotics are doing it's job.  His head shape looks awesome!  We couldn't be more pleased.

Braydon has now said ba ba and da da.  He's sitting in a high chair all by himself now, and he's upgraded to his convertible car seat.  We can also "sort of" drink from a sippy cup.  We are almost through the fruits and then he'll be able to eat anything.  Oh boy!

Heaven help us, because our little boy is growing up so fast.

6 Months Down, 6 More to Go

We started off the week by seeing Kristin at Dr. Puccioni's office.  She's the physician's assistant to Dr. Puccioni and she is super nice.  When she walked in she was amazed at how great Braydon looked cosmetically.  Like Dr. Miller, she was sure that Braydon wouldn't need another surgery to remodel his skull.  Braydon was giving her the stare down, it sure does take awhile for him to warm up to someone.  But at least he didn't cry when she was touching his head.

She thought he was doing really good.   She told us that it would probably take awhile for the soft spot to close, but in case it doesn't they can take a portion from the other side of his head and split the skull and use it to fill the hole.  And then put the remaining piece back.  Then it should grow back in.  She also told us we can start putting Neosporin on his incision site and start scraping off the scabs.  I'm not sure about the picking part, but we definately could put some Neosporin on his head.  We have to go back the first part of April to see Dr. Puccioni and hopefully he will clear us and hopefully we won't ever have to see him again.  Not that we don't think he's a nice guy, I just don't ever want to have to deal with this again.

Kristin was also very helpful in answering our questions.  As long as Braydon's skull fills in the big holes, he won't be restricted in any activities.  He'll be able to play football, baseball or any sport that he wants to.  Or if he wants to be a dancer, he'll be able to do that to.  My money is on a Steven Tyler replica.  That boy can scream.  :)  I also asked her about the possibility of some brain damage because Braydon won't roll over from his tummy to his back and he was having a hard time sitting up by himself.  My fears were put to ease by her and also by Dr. Davey at his appointment.  Kristin said that she doesn't believe that there was any damage, and said if you had all those headaches all you would want to do is lay on the couch.  So it probably made him feel better to lay down.

We then met with Dr. Davey for his 6 Month Check-up.  His stats were 18 lbs 5 oz in weight (he gained a pound since surgery), 25 3/4 inches in height and head circumference was 46 cms.  His head size didn't increase since his surgery.  He is now in the 62nd percentile for weight, 23rd for height and 94 for head circumference.  Since Braydon had his surgery, he finally got on a curve line for his head.  Before he was way off the charts.  :)  I would have thought that since his surgery, his head size would have decreased a lot.  But Dr. Davey told us that most of the time Cranio doesn't really affect the head size to much.  He just told us Braydon is going to have to have a big hat size.

His check-up went great from all other standpoints as well.  I told Dr. Davey about Dr. Byrne's concerns about his eyes and my fears were put to ease.  There is absolutely nothing wrong with his eyes.  Thank you to the lord that nothing else is wrong.  also he told us that his little pee-pee is getting better.  We still have to pull the skin back, but we may not have to surgically fix it after all.  He told us that developmentally he is right on par.  Since he can at least roll over one way, that is perfectly fine and as long as he can sit up while being supported he is right on track.

From a diet standpoint we still need to give him about 32 ounces in breast milk and formula.  Once we get through the fruits (we have apples, pears and peaches to get through), we can start pureeing what we are having for dinner and give it to him.  He also can have Biter Biscuits, but I have no idea what those are.  So if someone could tell me that would be great.  In a couple of weeks we can start Cheerios and Puffs along with crackers and yogurt.  By the time he is 8 months old he can have bread and some soft food.  By the time he is 9 months old he should be eating finger food.  I'm sure I will have to wrap my house in plastic wrap when that happens because he is already throwing stuff.  :)  Or Dakota is going to become a fat dog because I'm sure Dakota will eat more than Braydon.

Braydon had to get 3 shots and the drink.  Poor little guy, but he did so well.  We do think that he had a little reaction to the flu shot, because he was running a fever on Friday.  And that has never happened and that was the only new shot they introduced.  I guess we can confirm our suspicions when we bring him back in a month to get his second dose.

We took him to get his pictures taken after his appointment.  I know it was a genius decision to take pictures after his shots.  But it was the only time we really had.  It took him awhile to warm up and he only lasted about 20 minutes.  But we got enough good shots.  I'll share some of our favorites with you.  Until the next time Braydon says keep on smiling.