***If this is your first time visiting the blog, you may want to start
with the first entry in the March 2013 Blog Archive called "The
Beginning...the News" to be up to speed.***
Happy FIRST Birthday Payton!!!!!
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| 12 months old! January 2014 |
Lots of birthday cake, family, smiles, and feelings of thankfulness
surrounded us tonight as we celebrated. This has certainly been a year to
remember in our lives. It has been exactly a year since the day you were
born. It has also been almost 7 1/2 months since your skull surgery for right
coronal craniosynostosis. And you know what? Even with the challenges we
have overcome this past year, I would still live it all over again. Why?
Because I'd get to also experience the joys you have brought to our
family. And especially because of the lessons learned during this year
that have helped reshape our perspectives about what matters in life. And
of course, I'd relive it all over again just to have you, a beautiful, gentle,
careful, happy one year old in our lives today. You are SO worth it!
I wanted to update your blog at some point and your first birthday seemed
like a great milestone for our friends and family to see just how far you've
come since birth, and especially since your skull surgery last May. I was
surprised this fall that your blog has even reached other families around the country
who have children facing the same surgery.
A few have even contacted us for more information or support. One mom,
whose son had surgery in December, contacted me after seeing the blog and asked
for recent photos of you too.
After
sending some to her, she was feeling even better about her son’s own future and
upcoming surgery.
I’m proud that your
experience has had a positive impact on other children or families, reassuring
them that they will get through it!
And
what changes you have gone through in the past 8 months! So here’s a recap:
Since your surgery on May 23, 2013, at 4 1/2 months old, you have been
thriving! By 6 months old, we returned again to Children's for a follow
up with your doctors. They were impressed with how well you had recovered
from surgery and you were out of "recovery" mode and back into
"development" mode...mastering the rolling over skill and trying hard
to get the "sitting up" one next. They (and we) were also very
happy with the outcome of your surgery and your changing head shape. Look
at the 3D arial photo of your skull before surgery (on the left) and then 6
weeks after (right.) What a difference!
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| Left photo: Arial view of Payton's skull day before surgery. You can see the tip of her nose at the bottom. Right photo: 6 weeks post surgery. |
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| 1 month post surgery |
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| 6 months old-6 weeks post surgery |
Payton, by 7 months, you were sitting up on your own very well. Your
hair was starting to really grow in nicely and many people couldn't notice
your scar anymore. It never bothered us when they did, but now it was fading
away, hidden under your growing hair. At 7 months, you also started full day daycare,
adjusting well and taking a bottle (which I was scared you weren't going to do!
Within a day of daycare, you proved me wrong though, and I was okay with that!)
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| 7 months and sitting up! |
At your 9 month welcare doctor visit, in October, your doctor was shocked at
how much your face and head shape had changed, specifically the shape of your
brows and forehead.
She saw you after
your surgery but commented that just three months later, the improvements were
even more significant!
She’s not the
only one who has said something like that over the last few months too!
Even now, 7 months after surgery, it seems
like you are still "growing" into your new skull shape nicely.
Your doctors in Denver who performed the surgery said to expect some continued
improvements between surgery and 18-24 months old, and we have been excited for
you as we see your more natural facial shape appear each month. Although
still slightly noticeable to someone who sees you often, it would be very
difficult for most people to notice that you were born with a fused skull and
deformed head shape! Your skull looks amazingly symmetrical compared to
before! Those doctors knew what they were doing!
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| Pre and post surgery shots- 3 months and 7 months old. |
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| Left: Pre-surgery (Photo is a mirror image so right eye looks bigger, but left eye does in this photo.) | Right: 12 months old |
Around 10 months old, you were officially crawling and then quickly starting
to pull yourself to standing when you had something to hang on to. You
are such a happy baby that the only thing that can tamper your great mood is
the occasional cold, flu, or incoming tooth.
Now Payton, at a year old, you are cruising around everywhere, walking when
you have something to grab on to, or crawling quicker than we can catch you! As
I mentioned earlier, you are somewhat careful. This is new for us...we
are used to your fearless brother who was trying to jump off of the stairs or
run into swimming pools at your age, and who had four black eyes and a knocked
out tooth before he turned three! So walking completely on your own is not a
priority for you yet, but I think you will be quickly approaching that
milestone in the next few months too. It is exciting to see you reach different
developmental milestones at your own pace and we are not worried anymore about
your cranio journey significantly impacting your future development. All
babies reach milestones at different times and you are right on track, your own
track.
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| Holidays 2013 |
Payton, do you know what this past year has really taught us though?
Over the past few months, Derek and I have
both realized that your journey with craniosynostosis changed our outlook about
what really matters in life…and that the small stuff, although stressful at
times, is really just small stuff.
I
would still have considered us positive people prior to this year, but here are
my "Top Ten of 2013" that your journey helped remind me about or
reinforce:
1) Love for a child is fierce and unconditional. It changes your heart
forever.
2) Through trials or challenges come new perspectives. I wouldn't wish this
tough journey on anyone, but I'm grateful it has helped me appreciate more
about my life and focus less on the day to day stresses.
3) Laughter and a positive attitude will help you endure so much.
4) A strong marriage is the cornerstone of a strong family...I knew this
already but was glad to be reminded of it this year.
5) A support system of family and friends can reach beyond what you even
imagine...in times of happiness and in times of need. Be appreciative of
those in your life and be there for them too.
6) Family needs come before earning that "extra buck" (if at all
possible.) At the same time, there are times where you make sacrifices or
do what you do for the sake of your family. We really had to follow our
hearts this year when it came to making decisions about what's best for our
family in the present and in the future.
7) The peace of mind of having an emergency savings fund when you need it is worth more than anything else you could spend your money on. There have been times in our lives where we
didn't have a single dollar in a savings account, but this experience reminded
us about why it is important, when possible, to try to have a savings set aside that
you don't touch unless it is for a family emergency or medical need.
8) Take care of yourself even when you are caring for others! You only get
one body so treat it well but enjoy things you love occasionally (like,
say...wine or chocolate for me) because you only live once...OMG I just said
"YOLO!" My sixth graders would be so shocked! ;)
9) Truth and grace can co-exist. It is important to speak truth to
others, even if it is sometimes hard to hear. However, it is also important to
show grace to others and hope for those two things from those around you.
Payton's doctors (all of them) had a good balance of truth- being realistic and
honest with us- and grace...understanding when we asked a million questions
more than once or were more challenging than their actual patient! Derek
and I also had to show a lot of truth and grace to each other, and it helped us
immensely knowing we could count on each other for that balance of "tough
love" and "understanding."
And the final one I hope to carry with me into this new year and exciting
second year of your life…….
10) Be PRESENT in the moment and look for things to appreciate rather than
looking for things to worry about!
So far so good! Thanks for all you have helped teach our family during this
first amazing year of your life! We love you forever!
