Craniosynostosis Graduation Day!

For those of you that may be new readers to our blog I thought I'd do a quick recap on our son's adventures over the past 6 months! In August Jackson had a limited cranial vault... in shorter easier to understand terms, almost 50% of his skull was removed!

Jack at 3 mos old...
Jack at 10 mos. old...We found out a few months prior to his surgery that one of Jackson's sutures in his head had prematurely fused shut...Craniosynostosis. Pretty freaky! After trying for Jackson for about 8 years and finally getting our miracle, this was a pretty surreal revelation for us, and pretty scary one too. The only answer for him was surgery and so we set forth down our crazy Cranio journey...
What an adventure... there is nothing harder than handing your 4 month old over to a team of surgeons so that they can make a hole in his head on purpose! But we did and they loved and took care of him and they are our heroes!

Our Little Hero...
Our Little Hero's Hero...
This is Dr. Genecov, Jack's Pediatric Plastic SurgeonAlong the road we have had the honor and joy to join other families on their cranio roller coaster rides. Feel free to peruse the blog to read some of their stories and see more picks of all of Jack's Cranio Buds! Craniosynostosis effects about one in every 2000 babies. Many come to Medical City Dallas, as this is where two of the best surgeons in the world are located.




The type of surgery that Jackson had was a somewhat less invasive procedure than what we cold have chosen, but left him with a bit of an uncertain growing period. Frist, a good portion of this skull was removed and second, his head had to learn a new way to grow... so Jackson was fitted for a cranial band (or helmet).




It's been a good 5 months now since I've seen my baby's head for more than about an hour a day. But yesterday Jackson received his offical discharge! He is Helmet Free!!! His head is beautifully round (a little bumpy, but who's isn't). I feel like he's had his first Graduation Day!! I have no doubt that our journey with craniosynostosis will never be completely over... if anything we'll be able to share our expereinces with others, but for now we celebrate!!

What a great God we have! He has brought our family and my little man through so much!! Keep praying for him as he grows. In some ways the real test starts now. His little noggin' is on its own from here on out. And pray for me too that I don't try to hard to catch him every time he falls! I know it's impossible for him to never hit his head, but wow it's scary now to have a toddler with such an expensive head!

Jack's Last Cranial Scan (for a good long while anyway!)...
Graduation Day Pics!!

How does it get done, you ask?

So the other day as Aaron left for work in the morning he shook his head and said, "I don't know how you get anything done during the day." He said this as I was holding Jack and singing to him and washing dishes and eating breakfast. So since you were wondering daddy, here's how!

Laundry Time
Unloading the Dish Washer
Making the Bed
Stopping the Washer from rattling
Moving the Furniture
Cleaning the Bathroom!
Loving Mommy!


See Dad! It's not so hard!

I Heart You!

I know that Valentines Day is just one of those over done holidays, but I can't help it... I really like it! I always loved making my box at school when I was a kid and then making special valentines for all my friends... I remember being really little and making valentines with my mom, I have vivid memories of making all kinds of animals out of paper shaped hearts... caterpillars and owls mostly for some reason! It was fun.

Aaron and I didn't do a lot for Valentine's Day this year, but he did buy me a book to add to Jackson's "Jack" book collection (I'm collecting books that have Jack or Jackson characters in them for Jackson... if anybody runs across a good one let me know!) I was very surprised and excited. He's a good husband and daddy.

Here's some pics of Jack filling out his Valentines before church on Sunday for everyone. He was really into it until Daddy started taking pics of course, but still cute! He's wearing his red outfit for the occasion from Nana! Good job Nana, he looked very smashing!

"Are you learning Jack?" ..."Yeah!"

He's growing WAY TOO FAST!! But I love to watch him learn and change. I can see the wheels in his little, round, expensive noggin working over time some days. He's in the in and out stage. How fun is that. He was very big boyish this morning and I had to show him off!

Oh! And his new favorite word is "Yeah" You can ask him a yes or no question and I guess he can tell by the tone of your voice that he should say "Yeah!" It's too cute.





FYI - we live next to a fire station AND I only use this stupid high pitched voice when I'm videoing Jackson. I don't think I ever talk to him like this any other time!

5 in ONE week!!!

Jack has been teething since he was 3 months old!! Drool, Chewing, Fussy... BUT...

NO teeth!!

I remember sitting in the swings at the park betting with Aaron that he would have a tooth by whatever weekend that was... it was warm enough to be outside in the evening, so you know it wasn't any time recently! Needless to say, I didn't win that bet... but neither did Aaron, because not until two days before we left for our trip to Amarillo for Christmas did Jack finally get his first tooth!!

Here's the first one!



On Jan 17 his second tooth cut.

(The first was the bottom right and the second was the top left, so for a while he looked liked he had bubba teeth in!)

Then.... Bing Bang Boom!!! He has six teeth!! All before the next weekend!!

He's a chewing machine now!!

These are the best pics i could get of them... that little stinker's fast!! You can't see them all, but there are 6 in there... Just ask Nana her finger probably has chunks out of it to prove it! I told her to stop putting it in his mouth!!!




(Actually he still kinda looks like he has bubba teeth!)

Look Who Stole the Show!

I think Jack got caught up in the excitement of the bowl last night! He was the half time show... then just kept going and going!! Uncle Dave had fun! Jack was really into his electronics, that helped with the motivation... He hadn't done more than 4 or 5 steps before this... He hasn't stopped this morning!

A Prayer for Sunday and Xander

A prayer from Walter Brueggemann

Awed to Heaven, Rooted in Earth

Re-text Us
We confess you to be
text-maker,
text-giver,
text-worker,
and we find ourselves addressed
by your making, giving working.
So now we bid you, re-text us by your spirit.

Re-text us away from our shallow loves,
into your overwhelming gracefulness.
Re-text us away from our thin angers,
into you truth-telling freedom.
Re-text us away from our lean hopes,
into your tidal promises.

Give us attentive ears,
responsive hearts,
received hands;

Re-text us to be your liberated partners
in joy and obedience,
in risk and gratitude.
Re-text us by your word become wind. Amen.

We met Xander's family Kristen (mom), Billy (Dad), Lucy (sister) Bert (grandpa) and Reenie (grandma) yesterday. He is having cranio surgery tomorrow at 7:30am. Ya'll prayer for him.

Jack had fun with his new cranio bud swinging and getting ready for the Super Bowl!