Our surgical team, including Drs. Hobar and Sklar, OR Nurse Janet, Anesthesiologist John, and many others did their amazing work swiftly and skillfully, and we received hourly updates from the OR via cell phone, which allowed us to post the updates to waiting friends and family via twitter and facebook.  By the time the third update call came, it was interrupted by the craniofacial surgeon, Dr. Hobar, walking into the waiting room.  As his colleagues were closing, he was already out there to share the results with us.

The most comical comment of the day?  When Dr. Hobar arrived, Emily commented, “Did he already wash his hands?” daddy: “Well, yes Emily.  He had on gloves and a gown and a mask while he worked on Bethany, but I’m sure he’s washed his hands.”  Emily:  “Good.  I bet he had slimy, goopey stuff all over them.” (said with a slightly devious grin…)

About two hours later, Amy and I were allowed to go see her in ICU.  This is what we saw (see photo).  Fully bandaged, you could see very little, but you could tell her facial structure had changed.  Her eyes were not yet swollen, and a couple times she opened them and looked back and forth at Amy and I.

In the hours that followed, her eyes would swell shut, which is totally normal.  By morning, the doctors would remove her bandages.  Once removed, her head would begin to swell in the abscence of the compression the wrapping provided, but this too is part of the process they had prepped us for.

Morning would usher in a new day and by around 10am, Bethany’s cathater was removed, her arterial line was out, and the drain line on her skull was removed.  With nothing but her IV’s left, and her vitals stable, she was cleared for her move off the Ped ICU to the normal Pediatric floor.  This meant that Emily and Dillon would finally get to see their baby sister, something we had hoped would happen.  In fact, we kept the kids in Dallas an extra night just on the chance that Bethany would move off ICU the next day.

Prepped by the Child Care team from Med City, and after seeing photos of similar babies in similar swollen states, the kids got to see their sis at about 11:30 on Wednesday.  Her eyes were swollen shut, her head swollen to what seems like twice its real size (think Will Ferrel’s Blue headed character “MegaMind”), and they could clearly see the stitched incision that now runs from ear to ear on her head, but they still wanted to see their missing third.  As you can see, they didn’t care too much that she looked, as they said, “just a little scary.”

It is now late on day 2.  The kids have returned to Sulphur Springs with their grandparents to return to school and a somewhat familiar routine.  We wanted them to re-enter something familiar, and we are so blessed with great teachers and friends in Sulphur Springs that we knew it is where they needed to be.  Amy and I will be staying here in Dallas for a couple more days and nights.  Miraculously, after literally having her head sliced from ear to ear and having sections of her skull cut apart, repositioned, and reattached, our baby girl could be heading home as early as Friday night.

God is good because it is his nature.  He doesn’t have to work at it, He just is.  Skilled doctors are skilled because they have dedicated their lives to getting good at what they do.  In the weeks that passed, and certainly in the weeks that are yet to come, I am glad that both of those facts are fact. I love and serve a good God, who has given life to us individually, to my family collectively, and to my daughter specifically through the hands of a gifted, talented group of caring professionals that shared their gifts.  We cannot thank you enough.

Thanks to all of you who have called, tweeted, facebooked, texted, written, given, loved, cooked, driven, and even cried.  You have shared your lives with us and allowed us to share our struggles and fears with you, lightening our load.  We are well cared for, and for that, we are grateful.  Now – it’s time to go hold that little bitty hand and thank God once again.

Be blessed.  Share Well.

See all the pre and post-op photos on our Flickr account.

First the not so fun stuff- the surgery. To clarify, she is having a cosmetic surgery procedure on her skull, not brain surgery. Her premature fusing of her suture lines in her skull has caused the plates to both stop growing on one side, and grow atypical on the other. The results are seen in the uneven balance of her eye socket size and placement, the slight tip to the left of her nose, and an asymmetrical forehead shape. All of these things will be corrected by the surgical team using material similar to dissolving sutures in the shape of plates and screws that will be attached to her current bone. By separating different plates an securing them with these screws, removing some bone, then replacing and augmenting other bone with this material, the team will construct a more balanced facial and head structure that will allow her head and brain to grow in a more healthy manner. To do this, they will make a zig-zag incision from one ear to the other. Yep. That is all the tough parts. You can see more about the procedure and see some photos here. (note: due to advances in process and the use of the plates and screws, Bethany will likely never see a helmet.)

Now the good news! 1. Bethany does not seem to be having any further seizures. that means that her medication is working as it is supposed to. 2. Since moving “full time” to Texas to undergo this adventure, we have been able to enroll Bethany in the Texas healthcare system, and we have gained access not only to the phenomenal doctors and facilities like Children’s Medical Center and Children’s Medical City Dallas, but we have also begun working with an amazing team of Occupational and Physical Therapists. Bethany has about 6 appointments a month with them, and just completed a full 2 hour analysis last week.

She is meeting all of the expected benchmarks as far as social and neurological developmental stages, and seems to only be lagging by about 2 months in physical development, specifically her muscular tone in her stomach area (core) and left arm and shoulder. Considering that her left shoulder was impacted during delivery, and that her inability to push herself up on that arm to a sitting position is likely causing her lack of core development, both of those two issues should respond well to active physical therapy. She is not yet crawling, however she can stand and balance on her own on daddy’s hand… (yes, you heard that right…) in fact, that is one of the things building her core muscles! All in all, she is in great shape both physically and mentally to be going into this surgery. She is giggling in my lap as I type this.

So now we wait. We have just less than 3 more weeks before the surgery. We will go to Dallas the week prior for a final consult appointment with the Neuro team and for Amy and I to donate blood. Since we haven’t had her typed yet, we don’t know which one of us is the matched donor, so we’re saving her a needle poke by each taking one ourselves. Amy’s parents will be arriving around that time to help with transporting Emily and Dillon to and from school the week of the surgery, though we will all be at the hospital together during the actual procedure. They will probably come home with Grandma and Grandpa that night or the next day.

We appreciate your continued prayers. We have been blanketed with such a great peace about this whole process that we know you must be praying. We will continue to trust God for our expected outcome!

“You will keep in perfect peace him whose mind is steadfast, because he trusts in you.” -Isa 26:3

That said, we have decided to make a few adjustments to help us re-prioritize.  Some are short term, some longer, and all are subject to re-evaluation, but for the sake of communications, here they are!

First, since Bethany’s best care is here in Dallas, TX, we have decided to stay in Sulphur Springs, TX for what will likely be the next 9-12 months. It just gives us the most peace.  We are close to Childrens Medical Center Dallas for followups, the kids have started making friends here now, and we have a great community here as well.

Second, since we will be staying in Sulphur Springs, we are going to let Dillon and Emily go to public school this year. Sulphur Springs has a great school system, and if we were going to try it anywhere, why not here in the middle of a highly conservative small-town environment where they still pray publicly at high school ball games?

Third, we will be limiting our travel over the course of the next year significantly. This does not mean that we WON’T be traveling, but for the immediate next few months, we’ll be focusing our efforts here on our family and getting the kids ready for school and adjusted to a new environment.  Once school starts, we will shift some of that focus to more fully implementing the Share5 model here in Sulphur Springs, a process which we have already begun.

Finally, we are trying to find a real house (without wheels). While the RV provided us with a great method of traveling and living in the same space, lets face it… its tight.  Especially with 5 people.  If we are not traveling regularly, there is no reason for us to live in the confines of 282 square feet.  Lord willing, we will be moving up to at least three times that space.  =)

WE WOULD STILL APPRECIATE YOUR CONTINUED SUPPORT!  We could NOT have accomplished the amazing things that have been done in the name of Christ over the past two years without your prayers and financial backing.  As we shift to this next season, we need them all the more.   We still plan on sharing well with others.  Book one is now out and Chad is working on the next. We have already identified several opportunities to “Share Well” in this community.  In fact, we are in the middle of one such project as we speak.  We will be continuing to do the ministry works that God has laid before us – We are just making adjustments in how we do so.  We hope you will stick with us through this season.
Blessings, and thank you for all the stories and memories both behind and yet to come,

Chad, Amy, Emily, Dillon, and Bethany Houck

On Father’s Day, June 20th, we witnessed Bethany experience two of what NOW appears to have been a number of seizures of varying degrees.  I say a number, as we have learned that many of the behaviors we had previously passed off as normal or simply random MAY have potentially been seizure activity.

For example, many of you may recall laughing with us or marveling when she would sneeze five to seven times in a row.  Since she began her medication, we have not noticed her sneezing ONCE.  At a total loss of understanding, we have come to call these previous attacks “sneeizures”.  They may have been seizure activity, and they may not.  We may never know.

I tell that story to give a slight insight into what our lives have been in the past two weeks.  Everything we’ve ever watched happen to our daughter now has us wondering, “Was it a seizure?  Did we miss something?”  It’s a hard position to be in as a parent.  It kinda sucks.

On a good note, the Phenobarbital medication that we give her twice a day (through a bottle nipple we attach to the end of a syringe) has apparently caused all seizure activity to cease.  We are watching for anything out of the ordinary, and when and if we see something, we video tape it and email it to her neurologists in Dallas.  We’ve not sent anything since the Friday we left the hospital on June 25th.

So… What Now?

For Bethany, we have a followup appointment with the Neuro team from Children’s Dallas at 3 months.  In the meantime, its simply our task to observe.  And to continue with her meds.  Pretty straight forward unless something unforeseeable were to happen.  All in all, she seems to be doing well and even giggles on occasion like you would expect a happy four month old to do…

For Share5, and for the rest of the family, the situation is a little more complex.  That’s why this is only part 1.

Because there is more to come… on Thursday. =)

(This is all subject to reversal and change… as we are learning.  Anyone ever play football?  When the quarterback changes the play at the line right before the ball is snapped its called an audible.  We had alot of audibles lately… )

1. The cryosyostosis surgery (to UNfuse the plates in her skull) for which we thought we were most likely coming here is now 90% off the plate… for now.

This is because the seizures are the prominant medical concern, and their origin is NOT a direct result of the plates fusing.  If the brain had grown so large in a confined space that it was being compressed, that could have caused it. However, it appears (subject to confirmation and further investigation by MRI today) that Bethany’s brain is actually smaller than what her skull space would suggest.  In short, small peanut, big shell.  Plenty of room, so no urgency on the surgery.

2.  The seizures are likely worse than and more frequent than we are actually SEEING.  Hence the EEG monitoring being extended for 24 hours.  They wanted to correlate how much of the brain activity is actually getting “out” through her actions.  They explained that as young as she is, her brain and muscles have not yet fully connected, so the brain can be having a seizure, and she could look like she’s resting.

3.  Developmentally, Bethany is fine.  When the neurosurgeons did an eval on her (while watching the EEG screen) she responded completely typically with regards to reflexes, tracking, and optical response.  So she seems, even though her “peanut” is a bit small, to be utilizing it very well.

4. Further test should give us further insight.  Today’s schedule includes fully dilating her eyes to look further into them.  The neuro’s said its like a roadmap insight to the brain development… cool!  As I write this, she is in an MRI where they are essentially looking for any malformation in actual brain part development.  Later today, they will be doing a spinal tap again to draw more fluid for analysis as well to see if metabolic or genetic concerns are causing this…

5.  We may not find our answer this week…

That was the hardest one to swallow.  We know that Bethany is responding well to seizure medication, and that we will likely be taking her home on some type of anti-seizure meds. That is quite likely going to be part of our life for the next 2 years, but it will give her body and brain time to develop and give us a chance to more fully understand what is going on as the conversation continues.

Thats all for now. Thank you all for your support and prayers!

Chad & Amy, Dillon, Emily and Bethany Houck

First, and most importantly, Bethany is FINE. She is not in any pain and this is not an emergency or trauma issue at all. We knew from the first week that there seemed to be a slight deformity with her head just above her eyes, however all advice from our physicians was to simply wait for a couple of months and see if it self-corrected. Well, it has been a couple of months and it has not.

On June 15th, during our routine 4-month vaccination appointment in Sulphur Springs, TX, the pediatrician expressed a concern that she would like to rule out that the slope over Bethany’s left eye was not a bump being caused by a tumor. In order to rule that out, we agreed to do a CAT scan at the local hospital.

The result of the CT scan was that there was NO tumor. What they did determine is that the cause of the deformity is a premature fusion of the suture (space between the bone plates) on the right side of her head, from above her ear to the soft spot on top. (see image above)

The technical term is “Craniosynostosis“, specifically “Coronal craniosyostosis” meaning that the affected suture is between the frontal and parietal bones. This does not allow the individual plates to shift as the brain grows, and eventually creates pressure and greater deformity if left untreated, causing additional complications.

The treatment is a surgical cosmetic procedure where, basically, the will open the skin covering the skull from ear to ear over the top exposing the bone. They will then separate the fused plates, removing any bone material that would possibly cause problems later, and possibly use small dissolving sutures to reposition different pieces of the skull. Then they close it up and protect the head as it heals with a helmet, which also assists in therapeutically reshaping the head. The surgery can take from 4-6 hours, and the resulting hospital stay can be up to a week or more depending on how involved the surgery becomes. Expected recovery times will vary as well based on the amount of fused bone, however it likely ranges from 4-9 months.

A few things to note:

This is NOT considered brain surgery, so we are thankful for that.

We are currently waiting to hear from Scottish Rite Children’s Hospital in Dallas, TX to see if they will take our case.  They are well versed in the procedure, but typically only deal with TX residents.  Please continue to pray that they will make an exception.

OVERALL… everyone is doing well.  We appreciate your continued support and prayers.  We will be taking some time off the road as we go through this process, but will continue to update our blog and continue our work here in the Dallas/Sulphur Springs area.

Blessings,
Chad & Amy