Braydon's Story
Also Braydon's picture is featured on the Sagittal Craniosynostosis description page.
Sunday, March 6, 2011
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
Braydon's Story
Saturday, March 5, 2011
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.
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.
Friday, February 4, 2011
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.
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.
Saturday, January 29, 2011
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.
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.
Friday, January 21, 2011
He looks good, oh he looks so good.
Had our first follow-up with Dr. Miller today. And he says Braydon looks great. The stitches will flake off here in about a couple of weeks. It will take a while for the skull to regenerate itself and fill in the soft spots. But if the rare chance it doesn't they will have to go in and do some bone graphing. He told us about the minute chance of needing a 2nd surgery for the forhead but would be totally surprised if he needed one as his forhead looks pretty good right now. We won't have to go back and see him until April 22nd. So Braydon will get checked out right before we leave for Louisville. Hopefully there aren't any setbacks between now and then that would make us have to cancel the trip.
Next stop on the recovery train is Dr. Puccioni's office on Wednesday.
Next stop on the recovery train is Dr. Puccioni's office on Wednesday.
Tuesday, January 18, 2011
WOW - It's been 2 weeks!
Time surely does fly when you're having fun, right?!?!
I can't believe it's been 2 whole weeks since Terry and I were waiting around Children's Hospital Surgical waiting area.
Braydon is doing great. He's still not sleeping but I was told that was "normal". It will probably take up to 6 weeks for him to get on a normal schedule again. It seems like his development has increased in speed. He's reaching for everything, including the tubing for my breast pump and every single cord. He also wants to type on the laptop's keyboard if we are holding him on our laps while sitting at the computer.
Braydon also is making bubbles and "spitting". He will also do Raspberries on any body part he can get his mouth on. And if he's not in contact with skin, he will make the noise. I can't believe that on Sunday he will be 6 months old. It seems like only yesterday that he was born.
I'm scheduled to go back to work on February 1st, but I might go back next week for half days. That is if Braydon's doctor thinks it's a good idea and I clear it with my boss. Braydon has really bad separation anxiety and sometimes even Terry can't console him He wants his mommy all the time and it's going to be heartbreaking if he does that when I go back to work. So hopefully if we take it slow, he'll get over it. At least I'm hoping that's the case. Hope everyone is staying warm this winter and if it's Summer where you are at, well color me jealous.
I can't believe it's been 2 whole weeks since Terry and I were waiting around Children's Hospital Surgical waiting area.
Braydon is doing great. He's still not sleeping but I was told that was "normal". It will probably take up to 6 weeks for him to get on a normal schedule again. It seems like his development has increased in speed. He's reaching for everything, including the tubing for my breast pump and every single cord. He also wants to type on the laptop's keyboard if we are holding him on our laps while sitting at the computer.
Braydon also is making bubbles and "spitting". He will also do Raspberries on any body part he can get his mouth on. And if he's not in contact with skin, he will make the noise. I can't believe that on Sunday he will be 6 months old. It seems like only yesterday that he was born.
I'm scheduled to go back to work on February 1st, but I might go back next week for half days. That is if Braydon's doctor thinks it's a good idea and I clear it with my boss. Braydon has really bad separation anxiety and sometimes even Terry can't console him He wants his mommy all the time and it's going to be heartbreaking if he does that when I go back to work. So hopefully if we take it slow, he'll get over it. At least I'm hoping that's the case. Hope everyone is staying warm this winter and if it's Summer where you are at, well color me jealous.
Sunday, January 16, 2011
Braydon's Soul Mate
So Braydon has found his true love. It's just a shame he doesn't know it.
Terry and I found a couple on CranioKids that lives in Sioux City. Their daughter Adeline had surgery a week before Braydon with Dr. Miller and Dr. Puccioni. She had her follow-up with Dr. Miller last Friday, so we thought it would be a good idea to get them together.
Now we all know Braydon has a thing for older women (just like his daddy) so it's only fitting that she's almost 2 months older than him. They played pretty well together, well just as well as a 5 1/2 month old and 7 1/2 month old. Adeline was fascinated with his scar, but that's probably because she can't see hers. Braydon just stared at her and drooled. I would like to believe that it's love at first sight, but in all reality it's probably just the teething. :)
While their hair will grow back over their scars, but I feel like they bonded over them and were talking to each other in their own way. I believe it's the start of a beautiful friendship between Adeline and Braydon and also between the Laakes and Bueltels. It's nice to have someone to share this journey. While we appreciate the support from our family and friends, it's just seems special because they were on the same rocky road. And now we can experience the recovery road together and compare heads. Plus it's nice to ask, does Adeline have the same flat spot on her head? Do you think this is a screw sticking out?
Until the next meeting, you can view pictures from their first date. My camera was to slow, so here are pictures from the Laake's camera.
Terry and I found a couple on CranioKids that lives in Sioux City. Their daughter Adeline had surgery a week before Braydon with Dr. Miller and Dr. Puccioni. She had her follow-up with Dr. Miller last Friday, so we thought it would be a good idea to get them together.
Now we all know Braydon has a thing for older women (just like his daddy) so it's only fitting that she's almost 2 months older than him. They played pretty well together, well just as well as a 5 1/2 month old and 7 1/2 month old. Adeline was fascinated with his scar, but that's probably because she can't see hers. Braydon just stared at her and drooled. I would like to believe that it's love at first sight, but in all reality it's probably just the teething. :)
While their hair will grow back over their scars, but I feel like they bonded over them and were talking to each other in their own way. I believe it's the start of a beautiful friendship between Adeline and Braydon and also between the Laakes and Bueltels. It's nice to have someone to share this journey. While we appreciate the support from our family and friends, it's just seems special because they were on the same rocky road. And now we can experience the recovery road together and compare heads. Plus it's nice to ask, does Adeline have the same flat spot on her head? Do you think this is a screw sticking out?
Until the next meeting, you can view pictures from their first date. My camera was to slow, so here are pictures from the Laake's camera.
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