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9 Month Post-Op Apt with Neurosurgeon

Keegan's appointment on March 8, 2011with Dr. Shafron went really well. Actually, it went better than I even expected!

Both Dr. Shafron and his Nurse Practitioner, Kristina, were amazed at how Keegan looked. He did really well when they measured his head and was hamming it up making faces at himself in the mirror, almost posing. Keegans index was .71 (meaning his head's width behind his ears is 71% of its length) which was good.  His head is continuing to grow on the same curve. Keegan's curve is way off the charts but thats because of his large brain =) Dr. Shafron stated that Keegan's head will most likely always be that shape. He was impressed with his scar and overall feeling of Keegan's head.

I went into the appointment with three concerns which were all answered. 

They were the following:

1. Keegan sometimes will stop what he is doing and grab above his ears and close his eyes. Is this cranio related? Are there pressure issues? The NP asked if Keegan has recently been sick or had colds. Keegan had a cold almost all winter and had an ear infection 2 weeks before his appointment. They believe that this is related to congestion, etc. Dr. Shafron also suggests that all kids get their eyes checked yearly once they hit two. The eye exam will show if there is any inter-cranial pressure (ICP).
2. Keegan's speech seems to be behind as he speaks his own language most of the time. He has said many words but does not consistently repeat those words. Can this be cranio related? Dr. Shafron stated that this is the number 1 question asked by ALL parents, regardless of the reason they are seeing him for. He is not concerned with Keegan's speech as he is very responsive and was chattering away. He said he would be concerned if Keegan was not talking at all. He said there are studies out there but they are not valid and many are inconclusive. There is also a link to speech delay in boys. However, sagittal craniosynostosis is also more common in boys than girls.
3. Now that I am pregnant with our second, do the chances of having another cranio baby go up? Is there any way to detect this in-utero, since the sutures in fact do fuse during pregnancy? He said the chance of the second born having cranio is increased. They MAY be able to see an elongated head in an ultrasound but it is very unlikely. He said he always does free sibling checks and to bring the baby in when Keegan sees him again in December. Keegan also has an appointment with the plastic surgeon, Dr. Joganic in September (when the baby is a few weeks-1 month old). Dr. Shafron said to ask Dr. Joganic to look at the baby and give him a hard time if he requests a referral.

Dr. Shafron said Keegan looked even better than he would expect for having surgery at 13 months old when the bones are harder and less likely to reshape. He believes that if someone looked at Keegan, without knowing his history, he/she would never guess that he has craniosynostosis (has or had? since its been corrected does he technically still have it??) I was informed that most kids who have surgery so late do require second surgeries a lot of times. He does not forsee any future surgeries, as long as his head keeps progressing as it has.

Here is a recent picture of our Crazy Boy. We are so delighted that he has been so strong throughout this journey.

 

         

5 months post-op

Well folks, its been a while since I have posted anything on this blog. No news is good news when it comes to Keegan's cranio =)

We had appointments the second week in September with both the plastic and neurosurgeon. Both Dr. Joganic and Dr. Shafron were very pleased with Keegan's healing. The neurosurgeon would like to see Keegan back in 6 months (looks like we will be taking a trip "home" in March) and the plastic surgeon would like to see Keegan next September (darn.. another trip home). The plastic surgeon thought he still had a bit of frontal bossing, forehead sticks out past the profile of his face, but thinks it will subside with time. The major concern was behind his ears and his "new" head is growing wider behind the ears, allowing more room for the brain to grow which will eliminate intracranial pressure that they saw when they were operating on him. He also asked that I send his nurse pictures of Keegan's head once a month so that they can track his head shape and make sure there are not major changes that should be addressed.

The collage on the left is a compilation of pictures that I took last night with hopes to get some good shots to send to Dr. Joganic's nurse, Nancy.

Keegan is sure keeping us busy and constantly worrying. He has been grabbing his ears and waking up crying a lot at night shortly after going down. We thought maybe he had an ear infection, so we took him on base to the pediatrician (who is the new pediatrician who took over for our previous doctor, Dr. White). Turns out his ears looked great and she couldnt see any teeth emerging from the gums. She concluded that she thought its possible for his molars working their way down from his jaw and that may give him discomfort. His glands were fine, no temperature, cold/flu like symptoms so we were given the "all's-good". PJ and I both got a chance to meet her and she jotted down notes when we told her about the cranio. We think she is going to be good but obviously will be strong advocates for Keegan's health.

We tried asking to squeeze in his 18 month well baby exam but she kind of shrugged the idea off since there was a base training exercise going on and she had an appointment after. Keegan did weigh 27.6lbs and was 32inches tall. His head measured 20.5" in circumference.

Until next time....


♥ ,Tara

12 month check up at 14 months!

We made an appointment with our pediatrician once we returned to MT. We wanted to inform her of everything that went on and have her check Keegan out. He saw a lot of doctors over the past few months but they were all for his craniosynostosis. We wanted to make sure everything else was functioning and developing properly.

He seems to be growing like a weed. His weight was 25 lb 14 oz and he was 31.5 inches long. His head was 20 inches (50.5cm). Recall that his head was 51cm at his staple removal appointment. I think that extra half a centimeter was due to some swelling.

Dr. White knew everything Keegan went through which made us happy to see that she took the time to really read through all of the reports from before, during and after his surgery. She addressed all the concerns we had during the surgery, platelet count, hydrocoele, etc. Everything looked good and she advised us to wait until 16 months to get his 12 month immunizations and will do a CBC to check his iron and platelet levels then. He has his two bottom molars working their way out so I am fully prepared for a couple restless nights in the near future. He will then be seen at 18 months.

She did really well with Keegan and seemed to pay extra attention to him at this appointment (which I expected). I asked her how often she has seen this and she said she gets 1 every 2 or 3 years and most are able to be corrected with helmet therapy. She said the helmet therapy is often times not as successful as Keegan's CVR (calvarial vault remodel). I burned her copies of his CT scans and she is going to have them digitized and placed in his records.

She also showed me his growth charts and the peak in his head growth from 6-9 months old. His head circumference was at 89% at 6months and jumped to 100% by 9 months. I also noticed it was only 35% when he was born... makes me think if it really happened in utero as Dr. Joganic stated or if it happened after?! Dr. Joganic's reports also said he was diagnosed with craniosynostosis at birth (which he OBVIOUSLY was not or else we would have gotten a CFS consult much earlier).

Keegan did pretty well, considering. He did not like her checking his mouth out though, very protective of those pearly whites. He didnt mind the head measurements and her feeling his head. I dont know if this is because it was done at the beginning or if he has become accustomed to all the head touching .

Aside from all medical stuff, Keegan has been keeping us all VERY busy. He is now walking at a VERY fast pace and sure thinks he is both spiderman and a class clown. He is persistent and will find a way to get what he wants. He is very crafty and has been getting frustrated very easily when things don't go his way. He will push furniture and when he cant get it over the rug or it hits the wall he keeps pushing and then starts getting really mad that it wont move for him anymore.


Last weekend we had our first family camping trip, PJ, Cooper, Keegan and I, along with a friend Erik from the squadron. I was a little nervous and it seemed like we were going for a month based on everything we packed ; however, the trip was a success. We traveled an hour and 40 minutes north of us to Tiber Reservoir (Lake Elwell) on Saturday morning. We set up camp, ate lunch then headed out on the lake. Keegan did NOT like wearing a life jacket but did alright. We tried fishing but it was really windy AND (be ready to laugh) PJ did not bring a single change of clothes. He got cold because he only had the shirt on his back and his swimsuit. Apparently... it was my job. Lesson learned (for PJ.. pack your bags). We got back to camp and the guys made dinner while Keegan, Cooper and I went on a walk around the campgrounds. When we got back we ate dinner and got Keegan ready for bed. We had an 8 man tent that comfortably fit his pack n play, two air mattresses and still had room to stand and move around. Keegan went down around 8:15, woke up around 9pm, and went back down at 9:30pm until 7:00am the next morning. We woke up, cooked breakfast and hit the lake. This time we wakeboarded since we didnt go when the fish were biting AND our trolling motor wasnt working.  Keegan was GREAT this time and came to the realization that he WILL be wearing the lifevest and shouldnt fight it. Then we packed up camp and got on the road at 11:45am.  PJ already has the next trip planned... it only took me 3 years to get him to go. I knew he would enjoy it.

Looks like we will stay home for 4th of July weekend and take care of some things around the house and relax before our Yellowstone trip next weekend. We are looking forward to some more outdoor adventures here in Montana!

So long, for now

♥ ,
Tara

Post- Op CT and Mr. Climber Keegan

Well Keegan has officially given me a heart attack the past few days with his climbing. He is always in the same room as us but is so fast. He is pretty steady with his climbing too but I know it only takes one little wobble. I did buy him a Toy Story Toddler helmet (size 3+) but had to return it because his head was too big.

So back to Target I go.. and only 200 dollars later (okay the whole fam got something from there) I got him a Spider Man size 5+ helmet that fits him (AND ME) perfectly. Now if only he enjoyed wearing it!

Yesterday I found Keegan in the  makeshift entertainment center we have under the TV. He had climbed into his toy basket to get into the cubicle. Then today, I found him sitting on top of his work bench (working ON his bench).

Here are some CT scans to compare ... I am AMAZED at what they did and the different shape his head now has. However, it so odd that I miss his old head. i thought it was perfect the way it was and I get kind of sad knowing he is looking different now. I know its the best for him though =)

Before

After

Before

After

BeforeAfterAfter

Please continue praying for everything to continue healing and growing as it should. We have loved all the support and thank GOD every day for helping us through this.

♥ ,
Tara

4 Weeks Post-Op Today!

I cant even believe how quickly time has gone by. It was 4 weeks ago today that we were all sitting at PCH anxiously waiting to hear he is out of surgery and recovering well. It is such a blur looking back but not out of my mind one bit. I find myself consumed by researching craniosynostosis because I want to learn everything I can about it.

Keegan's medical records came in the mail yesterday and today from both surgeons. It was very interesting reading all the reports during the surgery. Both surgeons explained in detail what they did. Dr. Joganic (the artist of Keegan's skull) explained the subtotal cranial vault reconstruction.  He expanded the frontal region with radially oriented cuts into the frontal prominence. Then it was reconstructed with transversely oriented elliptical flaps and the shortened the overhang and widened the occipital region. He explained that he used radial cuts in the occipital region as well to decrease the frontal bossing.

At his June 8th appointment he says "staples are out, cranial vault is stable, no open areas are palpable. His cranial index is .77 with NOP 171 (length) and EUEU 133 (width). He seems to be doing quite well and is back to his usual activity. He is actually now walking. He is not irritable, is very active and is eating well. It appears as though he will have a good long-term result. The frontal bossing is moderate although the temporal fossa is expanding rapidly".

I mistakenly got the index wrong in my previous post. However, his index before was .65. NOP was 185 and EUEU was 120. This is still great progress in his head dimensions. Plus, his smarty-pants brain now has more room to grow!

Here are some pictures I took today to show his recover so far (4 weeks!)

I did find some interesting groups on Facebook along with interesting research studies online. 1 interesting thing I found was that a research group from UC David and Washington found a link in intrauterine space constraints and craniosynostosis. This intrigued me because my OB, Dr. Braget, mentioned how tight Keegan was in there towards the end of my pregnancy. Also, when I had my C-Section they found that I had adhesions (all of my insides were stuck together). They repaired the adhesions and  I hope they stay apart. However, menstruation cramps before and after the pregnancy have always been very painful and back pain associated. This leads me to wonder if I have endometriosis?? Furthermore, it makes me wonder if this is part of Keegan's craniosynostosis or just a coincidence? Is it genetic? No one seems to have an exact answer. I hate not having answers for my curious mind. I like to know how things work and why they work that way.

I hope to raise awareness of this condition and urge self- advocacy for a child's medical care. Keegan has been recovering amazingly and handled the surgery well; however, if it was caught earlier he could have went through a less-invasive endoscopic procedure.

Until next time.... signing off

♥ ,

Tara

Back HOME in Great Falls

Home at last! It was great being in Arizona surrounded by such AMAZING family and friends, but it sure is good to be "home".


Since the last post, Keegan was seen by Dr. Joganic, the Craniofacial Plastic Surgeon. We waited nearly an hour in the room. Finally, he showed up and seemed to have a busy day on his plate full of unexpected time in the OR. He checked Keegan's head and took a few measurements. Their goal for the surgery was to have an index of .75 (he initially had .65). When Dr. Joganic measured it nearly 3 weeks after it was at .749. I'd say that is pretty good =) He also addressed Keegan's forehead shape before I even had a chance to ask. He explained that he still has frontal bossing but the surgery should correct it over time. The points of the basketball shaped ellipses go down to his brow line on his forehead and they cut a triangle on the sides near his ears to angle the forehead back. That means as the head continues to grow it will start angling back and flatten out. I found this comforting to know that he noticed his frontal bossing right away and answered the question before I had to address it. He was not the most "sociall inclined" (read: very akward) but at least he is amazing at what he does. Dr. Shafron on the other hand is amazing with kids and very personable. Both surgeons will want to see Keegan back in 3 months.


Tammi, my older sister, had called Friday evening to tell me that there was a show on Discovery Health. I had missed the early evening showing but was able to catch it at midnight. It was based on 2 twin 4 year old boys who had sagittal craniosynostosis which is what Keegan has. Seeing how Keegan's head may have looked in a few years really reassured me with the whole surgery decision. Also, the boys complained of massive headaches. The whole procedure was shown and it was hard to watch but I wanted to see what Keegan went through. The surgeons made it seem like such a simple task; yet, you could tell by watching that it took a certain type of brain to do what they do. I am very thankful for science and the medical field improvements that allow them to do what they do. The show was called Surgery: before and After Radical Renewal aired on June 11, 2010. I cant find it online to share, unfortunately. One thing I didnt know before was that the absorbable plates will dissolve in the first year and break down into water and carbon dioxide. I found this picture online to show what they look like:

Saturday was filled with errands gearing up for our LONG road trip back to Great Falls. PJ had to get back to work so Keegan, Cooper and THANKFULLY my dad rode back with me from Chandler, AZ to Great Falls, MT via Ogden, UT. But before we took off, Ashley came home from college at Stanford and we celebrated with a mexican dinner made by the one and only mamasita (read: my mom who we think is part mexican). Tammi, Bronson, Caden and Brittyn joined us along with Ashley's boyfriend Nolan. Later that night (errrr morning) I packed and did my homework for my masters classes until 2am. My alarm went off at 5:30am and we hit the road around 6:15am, dropping Ashley off at the airport on the way. We traveled to Ogden, UT on the first day and stayed with Wayne and Zee who are friends of PJ's family. They knew them from when PJ's dad was flying in the Air Force. They were very hospitable and fed us dinner when we got into town around 6:30pm. Keegan and Cooper did amazing on the car ride, although Keegan only slept a total of 1 hour during the 11 hour car ride. Cooper on the other hand, slept nearly the entire time. We hit the road at 9:30am on Monday morning and arrived home at 5:30pm. We saw many antelope along the way. Again, Keegan and Cooper did really well. We are all glad to be home and sleeping in our own beds.

We plan on scheduling an appointment with our pediatrician, who at this time, we have decided to stay with. We really liked her and will try to raise awareness of craniosynostosis as not many have experience with this. We will advocate for our child now and may even have to make a few urgent care visits when Dr. Mesnick is working (she discovered Keegans Cranio!). We owe her a big thanks for catching this. Keegan is past due for his 1 yr vaccinations and we need to contact immunizations department to make sure we wait long enough after the surgery.


Please check the link on the other page as I have added 2 very interesting videos I found on Youtube on Keegan's condition.

Staple Removal

Keegan had his staples removed this morning at Dr. Shafron's office. They got us in right away when we showed up. Dr. Shafron said his head looked great and was amazed at how well he has been healing. He also joked around about hiring me to clean incisions because his head looked so good. I thought it was still pretty gross looking with scabbing.


He said the bumps on Keegan's head were normal. A few were swollen lymphs and others are normal with the surgery. He told me the biggest indicators to look for would be more behavorial (change in appetite, fussiness, fever, etc). He measured his head and it was 51cm in circumference.... now if only I can remember what it was before. I will be sure to ask Dr. Joganic (the plastic surgeon) on Thursday.


After Dr. Shafron left, Keegan got really antsy because he knew we were still in the room for a reason. Then the Nurse Practitioner came in with a nurse to remove the staples. The nurse held him down on the table while the NP took the staples out. It was fairly quick although seemed like a life time to Keegan I am sure. He did NOT like being pinned down. There was a little bleeding just where some scabs came off around the staples but after it was over he caught his breath. He was all worked up and didnt want ANYTHING to do with the nurse after when she tried giving him a fire truck book.


Last appointment for Keegan is on Thursday afternoon at 2:45pm with the plastic surgeon. I figured it is better to have both see him while we are here. As I have learned with the whole diagnosis, some see things that others don't. Thankfully, I know we have the BIG man upstairs helping us find those eyes at the right time.

2 in a row??

After sleeping so well the night before, we didn't get our hopes up for last night. However, Keegan amazed us again and slept through the night. For a short while (Thank GOD it was short lived...I hope) I was having newborn flashbacks with the wakings during the night and fussiness during the day.

Now, Keegan is back to his normal smiling, laughing self. He sure is a jokester. Will I have a class clown on my hands?

He keeps crawling into his stroller because he loves walks so much. I guess being born in Montana makes him an outdoorsman =)

He gets his staples out 1 week from today and then we will be heading back to Montana. We are not sure of our route yet but would like to break it into a few days and see some friends along the way.

We LOVE being home with family but we are all looking forward to getting settled back into OUR home and sleep in OUR bed =) Who can blame us !

The pictures are from 10 days post-op. Isn't it AMAZING how quickly little ones heal? I am amazed at him every day.

♥ ,

Tara

"Heeeeeee's Baaaaaaaaack!"

We moved from my parent's house to PJ's parents on Friday afternoon. Keegan was still a little fussy when he moved over but we learned that stroller rides were really calming for him. That night he went to bed at a decent hour and only woke up 2-3 times and went right back down shortly after. Was this too good to be true? (Keep reading)

The next morning he woke up with a HUGE appetite! He ate nearly an entire banana, 1.5 containers of yogurt, cheerios and some of a toasted bagel. He was smiling, dancing, laughing and back to his normal self. We were so happy to see our KEEGAN!

PJ and I met Shannon and Ben at the Vine for lunch and Keegan hung out with his Busia while Grandpa went golfing. He did well and only took a 30 minute nap. When we were at the Vine, PJ and I realized we hadn't been out without Keegan in over a month. It was very relaxing to just chat and hang out knowing he was in good hands.

We got back and Keegan was eating lunch. He shoved chicken nuggets in his mouth and was hamming it up for his Aunt Shannon and Uncle Ben. Later we went over to my parents house while PJ's went to church. Over there he was able to see his buddy Cooper. He was happy and playing with his LEGOS (more like seeing how much noise he could make with them). He wore his "shades" in the car and just thought he was the coolest!

We watched the first quarter of the Sun's game there and headed back to PJ's parents house for dinner. We ate (Keegan didn't) and then Mike, Michele and the kids came over to watch the Sun's game. Keegan was scarfing his face with Cheez-Its and would not let them out of site. He went down for bed around his normal bed time and we thought PHEW it wasnt a fluke.

WRONG! Keegan tossed and turned all night whining at times. At about 1:15am he woke up screaming and shaking as if he was really scared. He didnt want to lay, sit or do anything. We turned on his Baby Einstein music and even that didnt calm him. He was wide eyed and looking around the room non-stop. Finally (around 2 hours later), we laid him in the bed with us and he snuggled up to PJ and fell asleep. We then transferred him back into his crib and he slept until 7:45am. Although we would not have woken up so happy with such little sleep, Keegan was up and raring to go.

We are still struggling getting him to drink milk and other fluids like he would normally. But slowly, we are making progress. His lymphnodes on the back of his head are swollen so we will be calling on Tuesday about getting that looked at. It doesnt hurt him to touch but they are recognizable bumps on the back of his head.

We are headed to Aunt Mo's for a Memorial Day BBQ today where my parents will be joining as well. This will be the first time Keegan will see a large group since the surgery so we are hoping he handles it all well =)