Followup Tests in Birmingham Scheduled, Surgery on the Horizon

The ball is rolling indeed.

Lilly and I will be making our way back to Birmingham on Wednesday, 1 September, for her urodynamics test (the International Relations specialist in me has a hard time not spelling that word "euro" dynamics) and a renal ultrasound.  We will make it an early morning Wednesday to arrive in time for an 11:00am check in, and I am trying to decide if we will spend the night or attempt to drive back home the same day following her afternoon tests that should wrap up around 4:00pm or so...  Tom will stay here with Jared and Anna this time to keep it simple, especially since this visit will not involve any significant consultations with physicians--mainly just the tests.

The followup CT scan (with sedation, praise God), further x-rays, and pre-op appointments are tentatively scheduled for 21 September.  Her spinal cord surgery is tentatively scheduled for Wednesday, 22 September. 

Please pray for wisdom for the doctors as they review her tests, peace and comfort for Lilly, strength and wisdom and patience for Tom and me, and patience and comfort for Jared and Lilly as they deal with various "arrangements" for their care. 

Thanks for reading and especially for praying!

~Amy

A Few Interesting Links--Recognizing Dr. Campbell's Contribution to Saving Children's Lives

Video of Recognition by US Congress for Dr. Campbell

House Resolution Recognizing Dr. Campbell

Home from Birmingham: Spinal Cord Split Confirmed, Next Steps Outlined

We are home from our quick overnight and successful morning consult with Dr. Oakes, a pediatric neurosurgeon at Children's Hospital of Alabama who is well-known and respected in the field.  Many mant thanks to good friends and neighbors who cared for Jared, Anna, and Tad overnight!

First off, Lilly did great.  The car ride both directions (about 5 hours each way) was a piece of cake (thanks, in part, to the 2.5 hours I spent earlier in the day configuring her new "Leapster Explorerer" handheld game so she could play it).  She showed very little of her usual anxieties at the hospital, and even gave a few of the staff small smiles and waves, especially after a trip to the treasure box.  She was even willing to show off her ability to run for Dr. Oakes, as part of his exam.  What a difference from just about a year ago, when the one-hour car ride to her first ortho appointment seemed an eternity because of her wailing, and the entire time spent in the office she clung to me and cried inconsolably.  When we arrived home today, she announced within minutes of walking in the door "I didn't cry!"  That is a first for any type of doctor's visit for her. 

Second, we were really impressed with Children's of Alabama--they were friendly, efficient, and Dr. Oakes was great at explaining what he saw in Lilly, what the research shows in cases like her, and what next steps should be for her in preparation for her VEPTR surgery. 

Having reviewed Lilly's MRI and CT scans from CHOP, he explained that Lilly's spinal cord splits in two in the upper part of her spine, and then re-attaches to itself lower in her spine.  It is held down and "tethered" at its lower end by either bone or cartilege, which means that as she moves around, it can be stretched and pulled.  For now, this is not inhibiting her in any way that is noticable.  Left untreated, however, studies show that by the age of 15 she would almost certainly lose function of her legs and control of her bladder.  Moreover, if we were to proceed with her VEPTR surgery without first addressing this problem (something Dr. Campbell would not do), it would result in unspeakable damage to her spinal cord. 

The good news is that he is confident he can treat her surgically and prepare her for her upcoming "BIG" surgery on her spine.  He pointed out the irony of considering a spinal cord surgery to be the "little" surgery, but in Lilly's case, that's what is is by comparison.  This initial surgery will require probably 3-5 days in the hospital, and he expects we can get it scheduled in the next few months.

Next steps in preparation for the spinal cord surgery include additional X-ray and CT scans to look specifically and in greater detail at certain parts of her spine and a urinary neurological function test, to see how well Lilly's urinary system is innervated and how the surgery on her cord might impact her bladder control.  Neither of those things will be fun for Lilly--she has already informed me that that she WILL cry when they take more x-rays.  But she is a trooper and I know she'll be fine. 

We will work with Dr. Oakes' staff on scheduling these, hopefully in the next few weeks, and then get the surgery scheduled from there. 

Thanks for your prayers for our sweet spunky girl, for safe travels, and for Dr. Oakes.

In Full Swing...Getting Ready for Next Steps for Lilly

Despite the fact that it's still August and temperatures here in Niceville Florida are still mostly in the 90s during the day, we are fully immersed in our fall schedule and things are rolling along pretty well for the most part.  Forgive me for not posting first day of school photos back when it was the first day of school, over 3 weeks ago!  That just goes to show you that, once school starts, life gets pretty hectic again!  So here are the photos from the first day of 8th grade for Jared and 5th grade for Anna...

"Do I really have to get up already?"

Don't they look excited to have a nourishing breakfast before school??

Just as we went to head up the hill to school the skies let loose...good thing we had an umbrella handy!  (Thanks, Aunt Judi, for Anna's 1st day of school outfit that you shopped with her for!  It is her fav this year)

So, now that school us back underway (so far so good for both Anna and Jared), most of the fall schedule has also kicked right back in.  Anna is back at the pool after a few weeks off from swim team, Jared's cross-country practices are in full swing every day before school (he looks like this while waiting for his carpool to  arrive in the morning)...

And last week, AWANA started back up.  Lilly and I are back in Cubbies, which, so far, looks like it will be a fun year!

This is Lilly, running under the parachute at Cubbies...

Since Lilly hasn't started back to preschool yet (she'll start 3-days a week of VPK after Labor Day at Happyland Preschool again this fall), she and I have been finding fun things to do with our days at home together.  We hosted our second annual "Big Kids are Back in School, Little Kids Rule the Pool" party and had a blast with our friends in our backyard.  We have been visiting playgrounds and water parks, and just hanging around the house playing, too.

Check out this video from a day at the splash park!

Now that Tom is done with his Air War College, he is simply focusing on his work, which, in and of itself, is more than a full time job!  It is nice that his weekends are now more his own and we can do some fun family activities. 

I did my first triathlon in a few years this past weekend, and--although I did my best time and placed 3trd in my age group--I spent nearly an hour in an ambulance after the race recovering after getting severaly overheated to the point of dilirium.  I nearly passed out and did succomb to nausea several times...I hope I never ever feel that miserable again in my life!  Thankful, however, for a healthy body and for the fun of competition and physical challenges!   And for the beauty of God's creation!  The Gulf was absolutely beautiful that morning though the surf was rough.  Here's a link to a photo of the race--I am near the camera in the black and red, just getting started into the water after the "GO!" for my starting wave of the swim.

http://nwfdailynews.emeraldcoastphotoswest.com/mycapture/enlarge.asp?image=31116439&event=1061568&CategoryID=28208&picnum=3&move=F#Image

And here are just a few fun shots...Lilly took good care of Tad and gave him her blankie yesterday...

Lilly loves to swim...in the pool, in the tub, you name it.  Her bouyancy is not what it would be for most 4-year-olds since she is missing a significant amount of lung volume, but that doesn't stop her! 

Speaking of lungs, finally here is an update on where we are with Lilly and her medical care.  Tomorrow (Tuesday the 24th) we will visit a pediatric neurosurgeon in Birmingham, Alabama to review her MRI and CT scans from CHOP.  He will be evaluating her spinal cord and determining whether she is fit to proceed with the VEPTR surgery her orthopedist at CHOP is preparing to undergo with her.  The neurosurgeon might need to do an initial surgery on her spinal cord to make it safe to proceed to straighten her spine.  I am eager to hear what he has to say and to then have a better sense for next steps.  I am just praying that he will have eyes of discernment as he looks at her films, and that communication and coordination fo Lilly's care will proceed at a smoother and quicker pace than it has for the past 6 months or so...

Stay tuned...I'll post an update soon after we are back.

Oh, and by the way...

...the letter from "daddy, MD" seemed to do the trick.  We have successfully obtained all the records we need from CHOP and have a consult scheduled for 24 August in Birmingham with Lilly's pediatric neurosurgeon.  So happy to finally be moving forward!  Thank you Tom!  My hero!

...oh, and here is some of the lovely scenery...

Both of our families live in the greenest, hilliest places.  It makes for lovely early morning runs on back roads!  My parents' house is nestled in a lush, green little cove and every time I visit I realize how much I took for granted the beauty of my home growing up.

Here are the Photos!

So, in no particular order, here are many (but not nearly all!) of the photos from our road trip to see our families.  Looking back through all the photos makes me so very grateful that we both have such wonderful families who love each other, who love us, who love our children, and who model the value of family.  We are so grateful for that!  As you can see here, we lacked nothing when it came to fun outings (almost always capped off with a great meal or at least an ice cream cone!).  And the scenery, well, just striking as you can see.  Enjoy!