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!

Home and Getting Ready for School

We had a wonderful trip over the past few weeks to visit our families in the northeast.  Roughly 42 hours of driving time when all was said and done, but we endured the miles and enjoyed being together.  The kids did amazingly well on the long drive (better than their mama) and it was so nice to spend time with loved ones that we don't see nearly often enough.  Great to watch the kids re-connect with their cousins, great to watch Lilly come out of her shell a little bit more with her extended family (especially with her younger cousins--Delaney and Elly on my side and Peter and Naomi on Tom's), great to do some really fun things we've never done with our families before--a family reunion with my dad's mom's family, the "Just Ducky" tour of Pittsburgh, some great swimming at a State Park in New Jersey, a night away for Tom and me at a beautiful bed and breakfast in Pennsylvania right on the Delaware Canal, a chance to see Grammy play the organ at her new church, a chance for Jared to go to his cousins' Chinese church, and a surprise 40th birthday celebration for Tom's younger brother, Jeremy.  All in all, a wonderful time.  Photos will be coming soon, I promise.

Oh, but how nice to be home again. 

Our own beds were a welcome sight after the long drive back home.  Even Lilly, while sitting in her room after we made it home, pointed to her crib and said "that's my bed.  I like my bed."

Now we are in our final few days of summer vacation.  The kids start school on Thursday.  Since we've been home, I've been in a little bit of denial about being home, so rather than vacuuming, grocery shopping, and doing mountains of laundry, we've been hitting the beach, going to Big Kahunas Water Park, going canooing, and having sleepovers with friends.  Hey, why not?

Today, we get Jared's schedule and go meet Anna's new teacher.  I think after that, however, we'll go back to the water park!  And then maybe ice cream.

If you're wondering about any updates on Lilly's medical treatment, we are still in the land of frustration and incomprehensible lack of communication.  On our road trip north and then back home, we twice passed through Birmingham, AL--where we are to have LIlly seen by a pediatric neurosurgeon.  And while in New Jersey, we were just one hour away from CHOP, where her big surgery will take place.  But because of the inexplicable delays in getting her medical records transferred from CHOP to Birmingham, we have yet to schedule *anything* at all.  I am beyond frustrated.  Thankfully, Tom yesterday wrote an e-mail--a bit more pressing than any of mine have been thus far, but it was phrased far more diplomatically than the most recent one I had drafted--and perhaps the "MD" after his name in his signature block will carry more weight than my simple (but IMPORTANT, thank you very much) title of "mom."  Stay tuned.

So, stay tuned for photos from our road trip, and then photos of the first day of school shortly thereafter!

I Like the Things that Summer Brings

One of LIlly's Dr. Seuss books entitled "Summertime" begins with the line: "I like the things that summer brings, it brings so many many things..."  Here are some of the things that summer brings to us lately:

Summertime brings lots of time to read...

and time to play...

Summer brings time with good friends...

And we're excited that summer will soon bring the chance to travel, spend time with family, and get away from the daily "stuff."

Happy Summer!

Excited to see our families soon!

Summer is quickly rolling right by.  We have 3 1/2 weeks left in our summer vacation from school, and--having spent the first month of so staying close to home and enjoying time with friends, time in our pool, and local activities, sports, camps, music lessons, and other events--we are now ready to hit the road to see our families.We have tired of the endless wait for medical records to be transferred and consults to be scheduled.  We have long since given up on the thought that Lilly's surgery might take place over the summer while the big kids were out of school.  And we trust our sovereign God to know the best timing for all things.  So now we are busy doing laundry, lining up a dog sitter, and getting excited to be "on the road again!"