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 =)

Life outside of PCH

I read that kids have trust issues after surgeries, especially so young but I didnt really understand the extent of it until last night.

Keegan went down for bed but eventually woke up and sounded very scared. I then brought him in the bed with me and he dozed right off. However, every time our bodies would stop touching he would wake up and cry again. Then, he would put his foot on me or have any sort of contact and fall back asleep. I was nervous because he didnt have all the monitors hooked up and night and I knew nurses would not be checking in every so often. He tossed and turned all night and couldnt seem to get comfortable.

We were a little worried last night about possible herniation in Keegan so we called the on call neurosurgeon. Based on the symptoms the surgeon was concerned about either a hydrocoele or hernia. He then passed the word on to Dr. Shafron. Dr. Shafron called at about 10am this morning and told us to go to the ER and that he would call a doctor to check on Keegan when we got there. We got back to PCH around 11am after thinking we would not be returning =( The ER got us right in and 2 doctors looked at Keegan. They then ordered an ultrasound to check and make sure everything was alright. Keegan did NOT like being back in the hospital and seemed very scared and unsure. I actually had to lay on the hospital bed with him to calm him down and he soon fell asleep on me before they wheeled us on over to the ultrasound location. They did the ultrasound and gave Keegan his third beanie baby.

We then waited in the room for the doctors to go over the results. Fortunately, they came back with good news and told us that he had fluid built up from all the fluids he was given throughout his stay in the hospital. It should go away on its own.

They also addressed the diarrhea issue that kept us changing diapers every 30 minutes for the past 24+ hours. They told us to keep him on a strictly clear liquid diet for 24 hours and then give him light foods. Kids often times have upset stomaches due to antibiotics and we would just have to wait it out. In the meantime, we were to make sure he drank fluids. So far so good. I am sure he will wake up starving tomorrow.

It is not going to be an easy road to get Keegan comfortable around people again. He is on guard non-stop due to everything he has gone through. We are trying to let him know that we are here for him and not going to harm him. He needs constant comfort and to be around recognizable things and people. I think he just needs some quiet time without people touching him , although its hard to do because he is just too cute.

Now if only kids could talk! I wish he could tell me if he hurt or where he hurt. I wish he could say he is scared or that he doesnt want people around (although body language is good at telling me some of these things).It is so hard seeing our baby boy whine so much when he is normally laughing, smiling and talking but I know it is just a matter of time.

♥ Love ♥ ,

Tara

Discharge Day!

It is hard to figure out where yesterday ended and today started.

I knew sleep would be scarce because Keegan had thrown up yesterday and later ran a low grade fever. However, I did not imagine I would be not getting a single minute of sleep until 6am.

Keegan was up ALL night long . He was dirtying diapers the entire night and in some pain before each one. He fussed until I could change him, just to start the process over again. The technician noticed some blood in one of his dirty diapers and informed our nurse. I then waited for the doctor on call to come in and check him out. At about 2am, the doctor checked him and determined that he was constipated from the tylenol with codeine but had an upset stomach because of a flu bug or antibiotics. Then, I noticed his left arm was more swollen. The nurse untaped the board on him and put a saline lock on the IV since he was drinking fluids on his own again. At about 6am, Keegan finally dozed off in my arms until his daddy arrived at 7:30am.

PJ showed up and I left to catch some sleep since exhaustion fully kicked in. While I napped for4 hours, PJ and his dad took Keegan to the play room and walked him around the hospital. I then was woken up around 1pm and notified that Keegan was ready to be discharged and that the doctor was happy with his progress. I jumped in the car and headed back to the hospital. Leaving that parking garage was such a relief. It really made me think about all those parents and kids that weren't as fortunate as we were.

Although Keegan was released from the hospital, he still has recovering to do. He is experiencing some trust issues since he has been poked, prodded, touched, stared out along with undergoing a major surgery on his skull. His stomach is still bothering him and we are hoping that is clears soon. You never think of all the other body parts affected by a surgery. But, it is apparent that all the antibiotics, medications, anesthesia etc have caused his body to be thrown out of whack.

Please continue to pray for a smooth and quick recovery.

Our Love ♥ ,

Tara, Pj and Keegan

Day 5 at PCH- Almost there

We almost escaped the hospital by getting discharged today but had a few setbacks.

Keegan woke up a lot last night, which means I woke up a LOT as well. He was in a funky mood and giving the nurses some dirty looks. The swelling moved from his eye lids down to big bags under them. His daddy brightened his day when he showed up this morning. Keegan got a huge grin when he showed up.

The neuro nurse practitioner stopped by this morning and told us that if Keegan was able to drink 16 ounces by the end of the day he would be discharged. He had been eating small things such as crackers and cheerios but didn't want to drink anything. Because he was on IV fluids, they thought maybe he didn't have a sense of thirst so they disconnected it and allowed us to take him outside in a wagon. We were to keep him stimulated and give him fluids as much as we could. On the way outside a therapy dog named Raleigh showed up for him . They gave Keegan the leash in the wagon and Keegan actually walked Raleigh to the elevator. Then he got a trading card with Raleigh's picture and information to add to his collection. In the playground he only drank an ounce or so of fluids (we tried milk, chocolate milk, juice, pedialyte, water... you name it!) He got a little tired when he was outside so we headed back to his room so he could nap.

Later, we went outside again on the wagon and he ate a few crackers, goldfish and some teddy grams and was drinking some fluids. However, not too long after, he threw it all up and we headed back into the room. Shortly after, he started to run a fever. Dr. Joganic stopped by and said he wanted to do a urine analysis to see if maybe he had a urinary tract infection since he had a catheter in during and right after the surgery. He said he wasn't concerned about an infection from the surgery because the incision and swelling looked so good and the fever was 5 days after the surgery. He said low grade fevers are common with this type of swelling because of the blood in the head. They thought the vomiting was from the codeine in the tylenol (we are trying regular tylenol no) and the diarrhea caused from the antibiotics which he doesn't need anymore also.

So, it is now 10:30pm on day 5 and Keegan is asleep. His tummy is still upset but his fever has dropped from 101.5 to 99.5 and his swelling has gone down even more. He looks so good =) He also drank 5 ounces of pedialyte this evening. We are hoping the drinking continues tomorrow so we can go home!

I am exhausted and my back hurts from the chairs in the room (I swear they have a contract with a chiropractor or something). Everyone's thoughts and prayers have helped us all so much. We continue to pray for a healthy recovery for Keegan and a discharge very soon.

Our roommate Carter has been here for nearly 8 weeks! He is such a trooper and gone through so much. He had hemorrhaging that occurred all over under his skin and then attacked his lungs and intestines. It is an autoimmune disease that started with strep. He drew Keegan a picture that we hung on the wall. PJ gave him a patch from his squadron and he was excited. Tonight, Carter showed me his scrapbook that he has been working on. On that note, I have NO room to complain about the uncomfortable hospital room accommodations.

♥ ,

Tara

Day 4- Eyes open & no more drain!

Well today was day 4 and it started off with Keegan eating some cheerios and snuggling with me in the morning. His eyes were still closed when he woke up.

His daddy had the magical touch because when he picked Keegan up in the morning when he got to the hospital... Keegan opened his eyes! They were still pretty swollen but we could see little slits with his gorgeous blue eyes peaking through.

Then, his Grandpa Burke showed up shortly after. Keegan was greeted by a therapy dog which happened to be a golden retriever (just like Keegan's best buddy Cooper) . The dog was named Lucy and brightened Keegan's day. He stood up and had the biggest grin on his swollen face. He kept trying to climb out of the crib to play with Lucy. The volunteers who brought Lucy by gave Keegan a photo card of Lucy . He held onto the card and looked at it for quite some time.

Dr. Shaffron and Dr. Joganic both stopped by to check on Keegan and said his swelling on the top of his head looked great because it almost didn't exist. No cerebral fluid and very little blood drainage meant that the drain could come out. They told us that it would come out at noon (read two in hospital time). Dr. Joganic mentioned how tight his brain was in his skull again. He said that if it had been left untreated, it would have really caused Keegan some problems by the time he hit first grade.

His big "CUZ" Caden and little cousin Brittyn came to visit with Aunt Tammi and Gramma. Caden handled Keegan very well and acted as if nothing had happened to him. He gave Keegan a spiderman figurine to "borrow" and Keegan was babbling and playing away with his cousin. (Later Caden asked Gramma why she had spiderman in her purse and when she said it was his he said "but gramma, I gave that to Keegan to borrow")

The drain came out around 2pm and they consciously sedated him along with morphine for pain management since he couldnt take anything by mouth before. When child life came by to make sure Keegan had his favorite toy during it, she mentioned that although he is sedated , he may still scream or cry. It was no surprise how well Keegan did during the removal as he only flinched when they removed the LONG tube and stitched up where it was inserted.

I am amazed every day at how strong of a boy Keegan is. He has maybe cried 3 times for less than a minute throughout the whole process. When he is in pain he barely even moans and just looks uncomfortable!

Keegan's Aunt Shannon stopped by after work and was able to join us all on a wagon ride. He was able to leave the room and check out the rest of the hospital. He was still kind of loopy from the sedative for the drain removal but he kept his eyes open and took it all in with only an IV for fluids attached.

His Busia (Grandma Burke) stopped by in the evening and was able to get him to drink some milk and feed him some crackers. We then tried pudding and applesauce but he didnt want anything to do with either of them as he was getting pretty sleepy.

The nurses and staff here have been wonderful. We (the whole family) have been taken care of very well and are so thankful to be able to get care at such an amazing hospital.

We are 1 day closer!

♥ ,

Tara

Day 3- Goodbye PICU

Keegan had a very restful day today. He woke up with his right eye swollen shut and a few hours later the left one joined in. He is very swollen but resting peacefully, so that is good.

We limited visitors to the grandparents today so that he could get a good days rest. PJ's parents came in the morning and my parents spent the evening with us.

They moved Keegan out of ICU and into a regular room. We now have a roommate in a VERY small room. They are going on their 8th week here due to an autoimmune disease , so we have NO ROOM to complain about our stay in the hospital so far.

Keegan didnt want to eat or drink much today. Nurses and doctors said his activity (wanting to sleep all day) and swelling is very typical for a 1 yr old with this type of procedure. It just breaks our hearts seeing our normally very active, smiley boy swollen and sleeping all day.

They just gave him an IV to play it safe and get him hydrated . Figured it would also help me from trying to force him to drink pedialyte all night. This way he can rest more and stay hydrated.

Day 2

Last night I got a decent amount (a few hours) of sleep at the hospital, although I am sure adrenaline played a major role in my functionality.

Keegan seemed to be in quite a bit more pain this morning and had a few rough times. His platelette count was low so they took him to get a CT scan to make sure there wasnt any bleeding. It was really hard seeing them move him out of the crib bed to the CT table. He was in quite some pain when they did this! The CT came back looking good and his platelettes went up on their own when they checked his labwork at 4pm.

They stopped the morphine this morning and moved onto tylenol for pain management. After the second tylenol dose with the codeine addition, Keegan woke up smiling and babbling away. Our boy was back! Next thing you know he is drinking milk, eating chicken nuggets, sitting up and even standing up! On the down side, he is trying to pull the IV cords out and is very curious now as to what everything is. I was able to hold him which was such a relief to me since it has been since I left him back in the operating room.

He had a few visitors today, all the grandparents, his great Aunt Barbie and great Aunt Kath, Aunt Shannon and Uncle Ben, my cousin Heath and his wife Erin and his Aunt Tammi and Uncle Bronson. He was so excited to see everyone he didnt want to lay down and insisted on sitting up and drinking his milk on his own.

Unfortunately, we had to kick the visitors out shortly after they got here because he was refusing to rest and being Mr. Social! I wonder where he gets that from?

Once he fell asleep, PJ watched him while I napped on the hospital couch in Keegans room. Then, Keegan woke up and PJ headed to his parents to get some shut eye and plans on coming back in the early morning.

♥ ,
Tara

We are on the OTHER side

PHEW! Thats all I have to say after such a whirlwind of a day. Looking back at the past 24 hours seems like such a blur. Thanks to the power of prayer and the love of family and friends, we are now on the "other side". I laughed at the craniokids website when all the mom's mentioned the other side but I COMPLETELY understand the phrase now.

I was up all night last night, tossing and turning thinking about his surgery. Such a teeter totter of emotions have been inside me. I was also afraid I would sleep through my alarm that I set to make sure I woke him up early to get a good breakfast in before his surgery since he couldnt eat all day. I finally jumped out of bed at 5:45am and fed him. Then, we left for the hospital at 10am. When we got to the hospital, Keegan was dressed in a gown and received another beanie baby toy. He then played, not knowing what was going to happen later. In Pre-op, his grandparents were all there, Aunt Tammi, Aunt Shannon, his "CUZ" Caden and baby Brittyn. It definitely helped occupy all of us ! Aunt Karen and Jamie showed up while we were waiting.A friend I played softball with works here and was able to stop by a few times as well =) Brittany and her mom stopped by and saw Keegan for a bit once he was in his PICU room

We spoke to the anesthesiologist and then it became REAL. She seemed great for him and assured me that she holds him throughout the process rather than sticking him on a table. We pulled it together so Keegan wouldn't see us upset. Kissing the family goodbye, at 12:45pm we headed down the dreaded hall we learned about yesterday on the tour. It was sooo hard handing our son over to doctors but we knew he was in excellent hands. PJ and I then walked outside and gathered ourselves before meeting with the family. At 2:10pm, the nurse came out and let us know that the surgery was beginning. At 3:45pm she informed us that the surgery was going as planned and they were about halfway, just piecing the skull together. Dr. Shafron and Dr Joganic both came out of the OR at about 4:45pm and told us that the procedure went as planned. They said his brain was pretty snug inside his skull (which made us glad we did the surgery). They said he had quite a bit of blood loss but that is normal for the type of surgery performed (2 units worth during surgery). We were told that Keegan would be recovering and that we could see him in 10-15 minutes.

PJ and I headed on over to the PICU to meet our precious boy but were told to go wait in the family center. The anesthesiologist spoke to us and explained that he will have quite a bit of swelling and that she was unable to put in a central line so he will just have a few more lines in him in the meantime. She told us to wait another 10-15 minutes. About an hour later PJ called down and was told another 15 minutes. Finally 2 hours after the surgery finished we were able to see Keegan. He was soundly sleeping and looking good. He opened his eyes a few times.

Everyone has been such a help! Thank you all! PJ went to his parents to get a good night's sleep so that he can take over in the morning if need be.

I will try to keep you all updated on his progress. He is such a trooper!

♥

Tara

Pre-Op

We went for Pre-admission and pre-op meetings with the two surgeons that will be doing Keegan's surgery. Keegan had lab work done and the 3 nurses nicknamed him the pudgemeister. They had trouble finding a good vein but were successful with minimal screaming. I was sitting in the hall on the bench while PJ held Keegan on the table since I get woozy with needles. It killed me hearing him scream!

We then got a tour of PCH. It really hit us during the tour that everything would be happening so soon. For me it was seeing where I will have to let go of Keegan and put him in the doctor's hands and of course God's!

Later, we had meetings with the two surgeons, Doctor Shafron and Doctor Joganic. Very informative! Dr. Shafron will start the procedure and Dr. Joganic will finish things up with re-constructing his skull. The doctors gave us length of surgery times varying from 2-4 hours. Anesthesia will take 45 min- 1 hour so we are thinking that was factored into the 4 hour one. They will make the incision from ear to ear in a straight or zig zag pattern and will then open the fused suture and re-construct and piece the skull back together in elliptical pieces. plates will be ultrasonically fused to his skull to prevent the brain and skull from continuing to grow how it has been. These surgeries are performed weekly and Keegan's condition is the most common form.

The doctor confirmed that they do not know why this happens and that Keegan was, in fact, born with this. He told us that this happens in utero to 1 in every 2000 or so. There is also a slightly higher chance that a future kid could have it, although it is very rare. After the surgery, he will not need a protective helmet but Dr. Joganic suggested a bicycle helmet because he is so active. I , of course, think its a great idea.

We were able to get our minds off of tomorrow with a nice steak dinner with ALL of our parents. Keegan kept our minds busy with his entertainment and energy!

We are planning on arriving at 11am for his 12:30pm surgery. After the surgery, he will be in PICU anywhere from 1-2days and then moved to a regular room for another 2-3 more days. There is a couch in the PICU and a family room in the unit with showers, couches, tvs, refrigerators, microwaves, laundry facilities etc.

Thank you for all the thoughts and prayers~ We will update you all when we can

♥

Tara

Surgery Time

Keegan's surgery has been scheduled for 12:30pm on Friday May 21, 2010.

Went swimming today

In Arizona

Keegan and I made it to Arizona around 2:30pm yesterday and we were both sweating when we got off the plane. Didnt take me too long getting acclimated to MT weather.

I have so much respect for mom's traveling alone.It is HARD. I had his stroller, diaper bag and 1 carry on and that was still a struggle. A nice older man helped me by putting my bag in the overhead. After, he made it a point to walk 3 rows back and grab my bag for me and carry it all the way until I met up with my parents.

During the flight, Keegan kept wanting to push his legs up against the seat in front. The guy kept giving us some pretty nasty looks. I was trying so hard to hold his legs so they wouldnt touch his seat or the tray but they would barely touch the seat every now and then and VOILA.. the look would come again.

When we got into town we stopped by Tammi and Bronson's and Keegan and Caden played chasing each other around the house while I held my little niece Brittyn (who is getting so big!) We then headed back to my parent's house to RELAX. We watched the college softball selection show. Stanford is hosting regionals and have Hawaii, UC Davis and Texas Tech. Mom's homemade mexican food and homemade salsa was DELICIOUS and then Keegan and I were BOTH in bed before 9pm.

PJ and his dad left this morning around 6am for their drive from MT to AZ with Cooper. It should take 18-20 hours. They are stopping tonight in Park City, UT to stay with some family friends. Let's hope Cooper behaves =) They should then be in AZ tomorrow evening.

We are hoping to have a few relaxing days before Keegan's surgery and not committ to doing too much or seeing too many people . We love seeing everyone when we come home but tend to get our days completely filled with making plans. We want to be very calm and relaxed for Keegan and get some fun in before Thursday.

♥ ,

Tara

Added page/Packing

I added a information page that is linked on the top about craniosynostosis. I now know why I didnt start a blog a long time ago. It is something I enjoy doing; however, I should actually be getting the house ready to leave for 3 weeks along with all the laundry so we can pack.

Love ♥

Tara

First Post & Keegans Diagnosis

Well I thought I would start a blog to keep family and close friends updated on Keegan as many have asked to be put on the update list. With everything coming up so quickly, I figured this is a great way for people to be updated.

I took Keegan into Urgent Care on April 17, 2010 because he had been grabbing his ears. I figured I should take him in since we would be flying to Arizona the following Thursday to celebrate his FIRST Birthday (which was a success by the way). His ears looked fine but the pediatrician who saw him was concerned about his head shape. She felt his head and noticed a ridge running from the front of his head to the back. She strongly encouraged me to call our pediatrician first thing Monday morning and ask about getting a CT scan performed. This was NOT the news I was prepared to hear, nor the news I wanted to hear by myself. PJ was down in Tucson for work and was watching Ashleys softball game vs U of A when I called with the news. I was in tears and was pretty choked up.

In the back of my head I knew he had it, yet had never heard of it. I knew he had a long shaped head and the ridge indicated that she was correct. I never worried about him because he is such a smarty pants and I just figured every kid is different. It was a long 3 days until I could get in to see Dr. White (our ped). When she saw Keegan she confirmed my thoughts and referred us to Phoenix Children's Hospital. I called PJ at his parents house with the news. At 1am he got in the car from Tucson and drove to his parents house so he could be around family when he heard the news. I am pretty sure he knew what was going to be said as well. He got an appointment scheduled with Dr. Adelson (the chief of neurosurgery in Arizona) and a CT scan scheduled on Keegan's birthday. It was not the birthday gift we wanted to be giving Keegan but we knew it had to be done.

Keegan did AWESOME with the CT scan. We got there and he played with a few kids in the waiting room. During the scan, he was a little unsure at one point when he was all bundled up. He looked at me with a quivering lip and I thought I was going to lose it. Instead I grabbed one of the many "cool" toys they had to distract the kids and he brightened up. It went by really fast and he even got a neat beanie baby toy to take home with him. We sat in waiting room after until they had burned us a copy of the CT scan. With CT scan in hand, we left the hospital full of emotions, hoping for the best but prepared to hear what may be.

Knowing the results were on a disk in our hand, we promised we would wait until the medical professionals read the results to us. We pushed it behind and focused on throwing Keegan and AMAZING first birthday party. We had such a great turnout with amazing family and close friends to celebrate. Keegan devoured is cake and hammed it up for everyone watching.

The weekend ended and we were faced with our appointment with Dr. Adelson on Monday. PJ's mom tagged along to help with Keegan and make sure we didn't miss any important questions once we heard the news. The nurse practitioner came in and showed us the CT results. We knew instantly that his sagittal suture had fused together. She explained the diagnosis and treatment with us before Dr. Adelson came in. I thought this was different that she broke the news but it helped us focus on asking questions when Dr. Adelson came in.

He explained that although there is no definitive data saying it can cause brain delays, it is linked to some as well as jaw problems since his head is only allowed to grow in one direction. Some link pressure in the brain to this condition as well. He let us know that the surgery is highly recommended and NOT for cosmetic purposes. Keegan's metopic suture (along his forehead) is also closed but the doctor was not concerned as this closes earlier anyways and the sagittal suture surgery should correct it

I have done some research online and see that this condition is apparent in every 1 out 2000 babies and 3 times more likely in boys than girls for his premature closure of the sagittal suture. However, as with anything there are so many different things on the web for his condition.

Phoenix Childrens Hospital has specialists for each surgery, and since Dr. Adelson is fairly new (around a year), Keegan's surgery would be done by Dr. Shafron. I have read great things about Dr. Shafron and am fully confident he will be great for Keegan. The cranio-facial plastic surgeon will be Dr. Joganic from Barrows Neurological Institute at St. Josephs (he is also retired Air Force and did work at Wilford Hall). We are thankful that we are able to travel to Arizona where top-notch surgeons will be able to correct this.

Keegan's surgey is scheduled May 21, 2010. Keegan and I leave on Sunday to fly to Arizona and PJ and his dad will be driving the car with Cooper on Monday. Thursday we will be going to the hospital for labwork at 9am and an ICU tour. Then in the afternoon we will meet with Dr. Shafron and Dr. Joganic individually to discuss surgery plans.

PJ and I have both had some emotional times dealing with it all but we know God has a plan for everything. We thank the Lord that this was caught early, before it became a problem. It has been a very difficult time for us and I have found some comfort in becoming a member of a web site called craniokids.org where mothers and fathers share their experiences with cranio surgeries.

I hope to keep this updated throughout to keep you all informed every step of the way. We are BLESSED to have such wonderful family and friends to help us through this tough time. Feel free to ask any questions you may have.

I apologize for the LONG post but this is not even half of everything going on in our minds right now =)

Love to all!

Tara