1 Year Cranioversary!

We thought is was pretty cool that Isaac had his 1 year check-up appointment on the anniversary of his surgery. He is so much older and easier to take to the doctor! He was so cute and talked with the doctors and was pretty cool with all the head rubbing.

Dr. Siddiqi was really impressed with how well his scar has healed, it is hardly visible. He says that has a lot to do with genetics, so we are grateful for wherever those came from. He does have a couple holes that haven't grown in yet, but he feels confident they will. It could take some time since they didn't fill in when his head was healing most rapidly in the first months after surgery.

We won't be coming back here for a year if all goes well. We are going to watch and make sure his head is growing at his next pediatricians appointment and we'll come back sooner if it hasn't. They think that it will have grown because he is doing everything and more that he should be at this age, and he isn't having trouble sleeping or headaches.

This boy is SO loved! We can't imagine our family without him and love all the joy, laughter, cuddling, and sweetness he brings. We even love his spunk that comes through in little tantrums.

His cousin Jessica took some darling photos for us. Look at that beautiful head! There is still a bit of a ridge on his forehead that they will fix when he's five if we think it is too pronounced. We're just praying it smooths out on its own and we don't have to consider that path.

Happy 1 Year Cranioversary to our perfect little boy! We love you Isaac and appreciate all you have taught us through your courageous and patient attitude. We are grateful you are healthy and happy and that we get the amazing blessing of having you in our family. XOXO

8 Months Post-Op

What an amazing boy! Our Isaac is now 18 months old and 8 months post op. I am amazed when I stop to think about all that he's been through and how it is all, mostly, just a memory now. We no longer get stares when we go out, all that silky red hair completely covers his scar. It's good and bad. I do miss being able to tell people about craniosynostosis, which the vast majority of people have never heard of.

He is so smart and developing right an track, if not a little ahead of the pack. He speaks clearly and has lots of words, adding new ones every day. This week it was "iPod"! Definitely his favorite toy that we are constantly hiding from him as he goes around the house searching and asking for it.

To get him to sit still for these pictures we had a little help from his favorite character - Elmo!

There is still a bit of an odd shape to his head, especially on his forehead. According to Dr. Siddiqi that will go away as his brain grows into the space they created with his skull. His brain will then dictate the shape of his head as it controls the growth to fit the shape of his brain. When the pediatrician measured his head it was a lot bigger right after the surgery, but at every well check since then it has been the same size. I assume that once his head starts growing again that will mean that his brain has filled out his skull. Crazy - I have learned so much more to appreciate the miracle of the human body!

 There is one screw that is visible on the left side of his head a little above his temple. It should get smaller and be totally dissolved by 1 year post op.

Measuring up to his brothers and sister at the zoo this last fall. He is a HUGE fan of animals.

A rainy day outside the Draper Utah LDS Temple. He has a nice scab right in the middle of his forehead. He still bumps his head every day on something, and I still feel a little panic inside every time, but then remind myself that his doctors said not to worry about it. He always has a bump or bruise somewhere on his noggin.

 Discovering snow! He loves being outside and playing in all that cold white stuff. He is the most adorable little guy and keeps us laughing and loving him every minute! We are so grateful for our happy and healthy family.

2 Months Post-Op

Isaac looks so AMAZING! Looking back I can't believe how much he has healed in 2 months! He also just celebrated turning one and we are loving our fun little guy - he is perfect! That smile melts my heart every time.

He learned to walk about a week after turning one - I was so happy and relieved. I don't like crawling babies during the summer, but even more than that it was a reassurance to me that he doesn't have any developmental delays because of his cranio.

His hair is starting to grow in and cover the scar a bit. It looks especially good right on top, but gets wider and more red on the sides. Dr. Siddiqi said to expect that because a muscle in the jaw will pull at the sides of his head and stretch the scar. They can fix that later if it gets too noticeable. His bumps from the screws are still very noticeable. I also think there is still a little swelling right above his brow.

We are still putting vitamin E oil on his scar and massaging it in for a minute or two each day. This is supposed to help the scar heal better and smooth it out a lot. I hope so because it is a bit of a greasy mess and its hard to get him to hold still.

 
Isaac's first word was, "ball" so we got him a toy with bouncing balls for his birthday. He loved opening all his presents!

He loves interactive books so he got a few of those. This one is one of his favorites because it bites his fingers. =)

Isaac LOVES being outside and loves picking up rocks and dirt which quickly make it to his mouth so I made him an Oreo dirt cake for his birthday. He smooshed it all over his face and enjoyed every minute of it! It's amazing to think about what this little guy has been through in his first year - I am so grateful that I am his mother and that I get to continue to love and nourish this precious child. I know he is a gift from my loving Heavenly Father. My cup runneth over!

One Month Post-Op

His scar is looking SO good! They told me the stitches would dissolve by 2 weeks post-op, but that has not been the case. They are coming out little by little, the inside part dissolves and then the outside dried out part falls off. It will be nice to have them gone.

There are a lot of lumps and bumps, but they'll be around for a while. They said to plan for it to take 2 years for them to dissolve. I've heard other mothers say they get more prominent as time goes on, so hopefully his hair keeps growing fast!

I never quite know how to handle things when we take him out. People often come up to him and ask his name and age and tell me how cute he is. I know that they really want to ask what happened, but they don't know how to do it. I don't know if I'm supposed to add, "By the way he had a cranial vault reconstruction." Most of the time I just answer their questions and leave them wondering. =)

We had a fun Memorial Day weekend visiting family in St.George. The pool was a favorite. It was a little chilly the first day, so he had to just watch the big kids.

He loved the pet bird! All animals get him excited. He wasn't so sure when we let it climb on his shoulder though!

Finally in the pool and loving every minute! He floated around for a long time and just couldn't get enough. We feel like we've really got our Isaac back now. He's busy, curious, cheerful, friendly, and constantly making a mess - just how we love him!

2 Week Check-Up

His first taste of M&M's. He was a fan! We've started taking him out and about more. Sometimes it is amusing to see people's reactions and sometimes it makes me sad. I want to tell the people who stop and stare for a long time, "Just ask me." I am more than happy to explain. I sure am learning a lot about how to treat people with differences, and I am able to teach my children about these things as well.

Playing outside with his big brothers. No matter how upset he is, going outside makes him happy right away. We were given some darling hats to keep that beautiful new head protected from the sun this summer.

We went in yesterday to Dr. Siddiqi's office at Primary Children's for Isaac's 2 week post op check-up. I wondered how he would do entering the hospital, but it didn't seem to bother him at all. It was kinda neat sitting in the waiting room with so many children and parents who had gone through similar things. The doctor said that everything looked great. Right above his eyebrows there is still some swelling, probably because of the drainage tube. That will go away eventually. He will have deep tissue swelling for up to a year. We don't go back to the doctor again for 6 months - that is amazing to me!

The swelling above his eyebrows is pretty visible in this picture.

The knot at the end of his stitches on his left side came out a bit so I clipped it off. This side is looking the best. Dr.Siddiqi said to massage his scar with vitamin E oil for one minute two times a day for a year. I started this morning and he was like a dog getting his ears scratched. =) He loved it and kept moving his head into the massage. It must be really itchy and uncomfortable with his stitches getting all tight and dried out. It's so nice to be able to do something for him that feels good. It also helps loosen up the dried blood and clean things up.

With the swelling mostly gone the lumps and bumps are becoming much more obvious. The doctor said they are from screws and where bone meets and overlaps a little. He is sleeping much better and acting much more like himself. I think getting better sleep makes all the difference so we are hoping that he gets that back to normal soon. 

1 Week Post Op

We've had a rough transition back to life, but it does get better each day. The first night home he screamed until 2 in the morning - I could not find any way to comfort him. Finally we both fell asleep in the spare bed in his room, but even then he was fussy all night. Saturday he cried most of the day which sounded extra sad because he had screamed himself hoarse the night before. He wanted me to hold him constantly or sit right next to him as he played on the floor. He couldn't be alone for a minute. Naps never last more than an hour, usually closer to 45 min, and he always wakes up crying. Alan and I looked at each other Saturday night with total exhaustion and wondered what we had done. He did do a little better when we elevated his mattress and added pillows for cushioning. We've kept up on his pain medications, but he seems the same whether he's medicated or not. The last couple nights we've only given him Tylenol in the evenings to help with sleep.

He has been eating and drinking great since the moment we got home which is so wonderful! Each day he laughs a little easier and is even starting to play by himself again. In talking with other cranio moms it seems that it takes 2-3 weeks before you feel like life is returning to "normal".

I'm amazed that Isaac looks this good after only one week! The swelling goes down more each day, which reveals more lumps and bumps, but the doctor said that is to be expected. I can already see some of the stitches are dissolving. I think his head is heavier and more awkward that it was before, so Isaac is getting used to that. It's really hard to not be able to communicate with him about what helps and what he is feeling.

He's still wanting to learn how to walk and still loves to explore.

The scab behind his ear is where the drainage tube came out. His head shape really is dramatically different than before. I do miss his old head, but I'm grateful for the healthy future he has in store with his new one.

This is the face we are seeing way too much of, but I am so grateful that we see less of it each day. He has been such a fighter and so patient with all that he has had to go through. I am so proud of this little guy and so inspired by all the strength that can come in such a small package.