The past 9 months

I've been terrible about updating this blog but am so happy to report Bryce has been doing great these past several months!  Following his surgery in December, Bryce was fitted for his STAR cranial remolding orthosis (helmet) and began wearing it on January 1st.   In February he had follow up appointments with his neurosurgeon, ophthalmologist, plastic surgeon, physical therapist, STAR cranial/helmet specialists, and the pediatrician. All of his visits went well--his neurological development was great, his eyes were in normal range, and his scar healed very nicely.  Dr. Rogers (plastic surgeon) was very pleased with how he looked (which is always good when a plastic surgeon likes his own work!) but did tell us Bryce would continue to change and look different in the months ahead.  We had appointments at Star Cranial every 3-4 weeks and those appointments were the furthest from home (Columbia, MD), took the longest (2-3 hours), and were hardest on Bryce. 

Around 9 months old (February) Bryce started crawling a lot, cruising a little bit, and getting busier as each day passed.  It was amazing to see how quickly he bounced back from surgery, and how happy he was through the whole thing!  He went to physical therapy only a few times in February and stopped going in March.  

The picture to the left was taken at his 9 month well check approximately 2 months after his surgery.  His scar was still red and would continue to look that way for a few more months.  However it was healing and looking better every day.  His hair also started growing a lot and before long was completely covering his scar. 

Head starts to look less swollen
10 months old (March)



Start to see bump on left side
11 months old (April)





May 2nd - last appt at Star Cranial - no more helmet!

May was a big month for Bryce! 

 He got his helmet off, first tooth, had a great check-up with Dr. Rogers, & celebrated his 1st birthday!  

Happy 1st Birthday Bryce!

Dr. Rogers told us the swelling would go down and his head shape would continue to change--and it did.  Once the swelling subsided we noticed a bump on the left (corrected) side of his head near his temple, which is a dissolvable plastic bracket Dr. Rogers put in his head to hold his forehead together.

Celebratory lunch after appointment with Dr. Rogers

May 16th was our last visit with Bryce's plastic surgeon, Dr. Rogers.  He was very happy with the way Bryce looked and told us that typically the bracket will dissolve and no longer be visible around December '14 -- maybe sooner.  He actually apologized and hated that it was so prominent, but of course we were just happy he  responded so well to the surgery and looks so great!  He told us we didn't have to come back for a year!  We were shocked and honestly I was a little hesitant at the 1-year statement.  We were seeing him every 6-10 weeks and the thought of not having to see him for so long was frightening to me.  Of course he reassured me that we can come in to see him at any time, but that Bryce looked great and he was more than happy with how well he was recovering.  We felt so lucky and proud of our little guy. Yay for Bryce!

On June 2nd we saw Bryce's new eye doctor, Dr. Bazemore, and she too said he was doing great.  Next appointment: 6-9 months!  Another huge sigh of relief!

On June 11th we saw his neurosurgeon, Dr. Myseros, and received pretty much the same report from him as well.  He asked us a bunch of questions about how Bryce was doing developmentally, he looked at Bryce's scar, forehead, measured his head circumference and told us to come back in 9 months.  If all goes well at that appointment we will only check in with him on a yearly basis.  

With all the appointments behind us it was time to celebrate and head to Long Island for the summer!  

Silly boy showing us his kissy face

Nearly impossible to get these two photographed together!
At the ocean, enjoying digging in the sand

End of June…in these two pictures you can really notice the bump on the side of his head

After catching up with all our family and friends in NY we were thrilled to announce Baby Detwiler #3!  Another little girl will be joining our family in mid-October! 

We got home from NY at the end of July and about a week later Bryce was walking.  He was taking steps, pushing toys, and cruising around for quite some time but I guess all he needed was to be home to really take off!

In September Bryce got his first haircut.  He went with Daddy to the barber shop and now he really looks like a big boy!  He's 16 months old, 9 months post-surgery, and this was the first time in a long time that we've seen his scar.  The hair will never grow on his scar but for months his hair was long enough that the scar was always covered up.  It's more noticeable on his right side than on the left for some reason.  He still looks handsome as ever and now so grown up and ready to be a big brother!  

And just like that no more bump on the left side :)

The bracket is no longer visible.  So much for having 

to wait until a year post-surgery! 

For families of a child with Cranio: I started this blog during a very difficult time in my life, and found comfort in reading what others had posted in various blogs online.  Starting this blog was not only therapeutic for me--it also allowed me to communicate updates to friends and family.  I hope that you find information and reassurance that others have gone through what you're going through, and that everything is going to be ok and your child too will heal!

PT & follow up appointments with surgeons

Bryce’s first day back at Physical Therapy was Tuesday, January 14^th, which was also his 8-month birthday!  He did great and his therapist was very happy with how he looked and how strong he is.  He still has a slight tilt but it’s only noticeable when he gets tired.  His flexibility continues to improve but he still doesn’t have as much mobility looking to his right as he does to his left.  Overall, he’s doing so well and we’re very pleased.  We are now on a bi-weekly schedule instead of weekly like in the past. 

Thursday we had his follow up appointment with Dr. Myseros.  The nurse asked us several questions about how he’s healing, how he’s adjusting to the helmet, and what type of things Bryce is doing.  She saw him clap his hands, smile, say “dada”, and blow bubbles with his lips.  She was very impressed with all his skills and of     course his charming smile!  She also measured his head, and no surprise here…HUGE!  Just like his sister and every other Detwiler.  He’s in the 96th percentile.  (Lots of brains, obviously.)  Dr. Myseros came in and made a few comments about how well and symmetrical Bryce looked.   With Bryce in my lap Dr. Myseros felt around his head and said, “He looks great.”  We continued to talk about Bryce’s head circumference and his jump from the 34^th percentile before surgery to the 96^th after he told us Bryce was on track, no motor or cognitive delays (thank goodness!), and that he would like to see us again in 6 months.  He will continue to see Bryce for several years to make sure his head is growing properly, that his suture doesn’t fuse prematurely (again), and that his neurological development is on track.

The next day we had another appointment with Dr. Rogers in Rockville.  He too was happy with how well Bryce was doing. At all of his appointments and PT we take his helmet off and same drill with Dr. Rogers.  We told him his scar concerned us a bit and he explained to us that it would be pink for some time and not to be alarmed.  We also asked if the helmet would make his scar worse and he said no.  We told him how the helmet was shifting and moving around when we laid him down and he wasn’t happy about that.  We talked about the fit of the helmet and whether or not it was safe to touch the left side of his forehead where everything has been reconstructed.  Dr. Rogers was pretty adamant that he didn’t want the helmet shifting and that it needed to be adjusted ASAP. He wanted the helmet to hold with slight pressure the right side of his forehead and hold less on the left (reconstructed) side.  He said we no longer had to worry about him sleeping on his stomach, face down and that Bryce was healed enough that the helmet pressure sleeping face down wouldn’t damage his perfectly reconstructed forehead.  Dr. Rogers said his face and eyes will continue to change over time and that his swelling is mostly gone.

Before we left Rockville we called Star Cranial in Columbia to see if we could be squeezed in and luckily, once again, they saw us.  We got there around 11 and were there until 1:30.  The appointments are SO long and this one was extra long because Bryce barely napped and we had Kaylin with us.  They put extra padding in the front of the helmet and it fits much better now.  It takes time and lots of patience but I think now that his forehead is more stable and Dr. Rogers gave the OK for the helmet to hold his forehead things will be a little smoother now…fingers crossed.   We go back on the 27^th for a follow up.   

 

Since Friday night Bryce is in the helmet for about 23 hours a day.  We give him a short break in the morning, sometimes one in the afternoon and take it off every evening for his bath.  Right before his last bottle we put it back on and he sleeps in it.  Surprisingly he’s been sleeping pretty well.  We have good nights and bad ones but overall he’s doing great! 

Last week was one appointment after another and now we get a week break! J  Each day gets easier and we’re already seeing an improvement in his head shape.   Again I never thought we would be where we are today with his recovery.  He’s healed beautifully and it’s such a blessing.  Yes, there are definitely challenges and some sleepless nights but overall he’s such a trooper and we couldn’t be more grateful.  We’re extremely lucky that he’s so tough and just the happiest little big boy! 

 Pics taken January10th, exactly one month since his surgery.  

Unbelievable how well he's healed!

Helmet

Bryce’s appointment at Star Cranial on December 31^st was pretty long – 3 hours to be exact.  Even though the helmet was made for him there were still many adjustments that needed to be made.   We would put it on him and then see how he would do for 20 minutes playing in it, then adjust it again (etc.).  They would check his skin and hair and see if the helmet was holding him in all the right places.  

The helmet doesn’t touch his forehead at all since his forehead has been reconstructed and there can’t be any direct pressure on it.  So instead the helmet is tighter around his cheeks and behind his ears.  There is space in the helmet in the back so his head can grow out and fill in that space. Ideally we want the back of his head to be more round/less flat.

Ray and I practiced taking it on and off and went over all the specifics about how to take care of the helmet, clean it with rubbing alcohol, etc.  Putting the helmet on him is still the worst part.  However, once it’s on him and we’re done adjusting it, he’s fine.  He plays all day in it and it doesn’t bother him.  When we lay him down to change his diaper or if he is on his belly he still gets cranky but I know that will get better with time.  He’s supposed to be in it 23 hours a day but that hasn’t happened yet either.  When we started the helmet they gave us a schedule for the first 5 days to work him up to 23 hours…

1^st day – 1 hour on, 1 hour off

2^nd day – 2 hours on, 1 hour off

3^rd day – 4 hours on, 1 hour off  - wear it to nap

4^th day 8 hours on, 1 hour off – wear it to nap and sleep

5^th day 23 hours on, 1 hour off – wear it to nap and sleep

The first few days were the hardest but after a couple days it became part of our routine.  In the beginning Bryce would get extremely sweaty so they suggested we have Bryce stay in a short sleeve onesie until his body temperature regulates.   He’s doing much better now, thank goodness!