Hearing a doctor tell you that there is no way you would have recognized the 3 months worth of signs that you didn’t know were masked seizures somehow doesn’t comfort you. We know we couldn’t have done anything different, yet we have a heightened awareness now that Amy and I must try to control. We have to make sure we aren’t neglecting two healthy kids trying to watch the one who is getting better. It all amounts to time management and priorities.
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,
So sorry for not getting more information out sooner, and please allow me to thank all of you, from churches to individuals, that have called, emailed, tweeted, placed Bethany on prayer lists, and overall prayed and supported both Bethany and our family over the past number of weeks.
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.
Sorry for the delay and thank you to all who have been so diligent in prayer and in offering their support to our family in the last 48 hours! Bethany is doing well. She is safely in Children’s Medical Center- Dallas on the neurological floor, and we anticipate being here likely a few more days. Here is what we know…
(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!
For those of you who follow our twitter or facebook feeds, you know by now that our 4 month old daughter Bethany will soon be having surgery to correct some issues with her skull. In order to help answer the many questions that are certainly out there, please read the information below. Thank you all for your prayers, and please understand that if we asked you to read this, it is simply so we don’t have to retell all these details multiple times. We appreciate your understanding and will be sure to keep everyone updated as things progress!
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.
Its all wrapped up, the paint brushes are cleaned, and the ladders are all put away…(well, almost all the ladders are put away!) That’s right! Sulphur Springs Work Camp was a HUGE success.
Thanks to the tireless efforts of about 300 young people, combined with a small army of cooks, crew leaders, worship leaders, Kari Jobe, and a great sand artist, not only were 21 houses in the Sulphur Springs, TX area scraped, repainted, weeded, trimmed, and mowed, but multiple lives were transformed in the window of but a few days. Kids lives. Adults lives. Workers and homeowners alike. Some served others in ways they never had. Some were veterans. We had the blessing of being along for the ride!
For a better idea of what Work Camp was like, check out all the photos and more on their facebook page or watch our Flickr slideshow below! For those of you in the East Texas or Southern Oklahoma area, consider joining next year for Sulphur Springs Work Camp 2011 June 5-8. Rumor has it they are shooting for 25 homes!
This last UthBuild project in Puerto Penasco, MX was one for me like no other. Our home recipeint was a 51 year old gentleman named Ulysses. Ulysses had macular degeneration and has been blind for 10 years. To him, every day is dark. Today, however, he “saw” something new… his new home.
And I got to “show” it to him… What a privilege. We walked around inside for about 15 minutes pacing north, south, east, west, then north again, until he said, “Ok… I see it!” He had made his blueprint in his head of his new home. Awesome. Praise God.
Thank you to the amazing ALL GIRL crew (hence the pink and blue shirts…) that made this house happen, and to Dave an Tavya Robinson for continuing to shape the lives of youth through this amazing ministry opportunity!
Hanging a line array at the New Palm Valley Church
No, I’m not talking about the Houck family coming home. Sorry. God still has us out on the road, and we love it. My title today is for Palm Valley Church in Goodyear, AZ. Planted nine and a half years ago by Pastor Greg Rohlinger and his wife, Palm Valley will finally “Come Home” to their first permanent facility since the church was started in the Pastor’s living room. We attended their final service a week ago as they wrapped up at the venue that they have literally built within a high school for the past 6 years. First they were just in the gym. As they grew, they shifted to the auditorium. Now, they have become one of the foremost “portable church” experts in the nation, as they set up and tear down church facilities for 2700 adults and 1000 children over 5 services… EVERY SATURDAY AND SUNDAY!!!
That’s right. Every week their amazing team of volunteers empties, assembles, uses, disassembles and reloads the contents of not one but NINE not trailers but SHIPPING CONTAINERS full of computers, big screens, staging, lighting, backdrops, nursery equipment, and more. But the week after Memorial Day, the load ins will be no more. That is when they will open their new 44,ooo square foot facility that they re-purposed from a furniture store!
We spent a day helping put some of the final touches into the building, including hanging the line array speakers for the new main sanctuary that will seat 1000 people in what will now be only 3 services.
The building, however, is not their focus. Their community is. That is WHY they have grown. Not growth for growth, but growth as a result of effective and focused outreach through serving. Based on how well this congregation has pulled together and reached out into their community in the past, I have a feeling that a 4th, and maybe even a 5th service won’t be far off in the future. Way to go Palm Valley. Thank you for teaching the value of serving, and doing it with excellence. (see a few more pics on Flickr)
This post is the fifth in a series of entries on our journeys through California during April and May of 2010…
Back in January of 2009, we were looking for somewhere to do a little work in exchange for somewhere to park the RV for a few weeks while we began work on a book. Today, almost a year and a half later, that book proof was shipped to the same place it began, and we are back where we started – geographically speaking.
Those of you who have been following for a while may remember the Chicken Coup project from 2009 in Lake Elsinore. The location is called Rancho De La Paz, or “the ranch of peace”. It is a re-entry point for YWAM missionaries and a retreat for pastors and full time ministers that need a little “down time.” Run by the Caruso family, the ranch has a few llamas, a dog, a cat, a bunch of chickens, and some ducks. The farm animals give people from the city something to look at that calms them, while giving rural missionaries something “familiar” as they handle re-entry into American society.
Last year we built the foundation for a new chicken coup. This year, we dug some holes for some trees, but we also got to paint the trim on the chicken coup. I finished with a full day driving a John Deere 210 Loader moving over 30 loads of horse manure… (view the full Lake Elsinore photo set on Flickr)
But back to my thought…
While we were painting, I thought about the fact that even though we weren’t there, the progress on the ranch continued. Multiple other volunteers had helped with construction projects, repainted fences, patched holes and did countless other things. Then we got to return and play a part again.
It makes me remember how I came back to my relationship with Jesus 10 years ago. Several people along the way, each doing their small or large part. Some laid a foundation. Some built on it. Others have helped dress up the project along the way. Every one of them played a critical part.
Thank you for everyone who has done a little work on ME. My life today is the fruit of YOUR labor.
Blessings from California, and now… On to Arizona!
This is the fourth entry in California Wrap Up, a series of blogs highlighting our travel through California in April and May of 2010.
Following our time in Simi Valley with New Heart Church, we headed south of Los Angeles and through the fun of LA traffic to one of the kids favorite overnight camping spots: Oceanside, CA. Specifically, they love Oceanside Harbor. It is a parking lot with no RV hookups and the spaces are super tight together, but it excels in the areas that are critical to the kids: playgrounds and wildlife! They have a great little play area right on the sandy beach, its only about 100 yds to the waves, and there are almost always a few sealions swimming around in the harbor to watch. We’ve been there about 4 or 5 times and every time there is a sea lion on the docks.
Just down the road from Oceanside is the city of Vista, CA. One of the last times we were in Oceanside, our local friends mentioned a recovery ministry named Green Oak Ranch in Vista, so we decided this time to contact them. They agreed to let us visit and just hang out as guest to see what they were doing, so we headed to Green Oak for 3 days before attending a weekend service at Vista Assembly, where we had visited during Easter of 2009. (Remember the Tim LaHaye assignment?)
Green Oak was amazing. They have on site facilities for their resident recovery program including a full cafeteria, dorms, a chapel, and classrooms. They also have a over 100 acres of land that they also use for a retreat center, inclusive of a nature center, animal reserve with Llamas, goats, ducks, emu, a couple horses, a pair of donkeys, a bobcat, a longhorn, and a few owls. They have a full reptile center, a pool, and retreat cabins. Its quite a place. Most importantly, you can sense the presence of God in those who spend their days there. It is a place where lives are transforming and hope is being found. It is awesome, and we are blessed to have experienced it.
Today is 5/25. At 5 am our 5th family member woke Amy and I up to usher in Dillon’s 5th birthday. He was woken up by, you guessed it, his 5 yr old sister. We proceeded to drive 5 miles to Costco where we got fuel so we could start the generator (oops… poor fuel management on Dad’s part), stopped to see the cool race car in the photo at left, and then we made our birthday breakfast tradition happy face pancakes with 5 slices of banana for a smile… (see the photos on Flickr)
I sense a theme birthday like no other coming on…
In all reality, tonight in Chandler, AZ at 6pm (ok the theme is broken!) we will meet up with a handful of freinds at Chick-Fil-a for a “birthday party” for Dillon, complete with cake and ice cream, and then we will enter our 2 week window with 2 children at 5 yrs of age. Kinda wacky, but thats just how it goes when you go by the name “Share5!”
For those of you who follow our twitter or facebook feeds, you know by now that our 4 month old daughter Bethany will soon be having surgery to correct some issues with her skull. In order to help answer the many questions that are certainly out there, please read the information below. Thank you all for your prayers, and please understand that if we asked you to read this, it is simply so we don’t have to retell all these details multiple times. We appreciate your understanding and will be sure to keep everyone updated as things progress!
Share Well Podcast at iTunes
