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!" 

Check out my new sidebar...

...for a quick and easy way to stay up to date on the latest in Lilly's medical care.  I know many of you are too busy to read my lengthy posts, so if you want to just check in to see what's happening in our medical timetable, scroll down to "Lilly's Medical Care At a Glance" on the right side of the blog. 

To those of you who do slog through my entries, thanks for reading!  I love sharing our lives, even across the miles.

The Weeks Go Flying By

Every year I have to re-learn that summer schedules seem harder to keep track of than schooltime schedules!  We have had an eventful few weeks since my last post, and are enjoying our summer vacation to the max.  Here is a glimpse of the latest happenings around here...

Two days after school let out, we celebrated Anna's 10th birthday with...

...picking 14 pounds of fresh, plump, juicy blueberries at a nursery about an hour from home...

...then coming home to swim in the bayou to get cooled off for a bit...

...then, after dinner at the local Chinese buffet (yummers!!), working on decorating Anna's homemade chocolate cake with buttercream frosting with fresh blueberries.  Anna wanted the cake to look like a blueberry, so she decided to use oreos on the side to simulate the little frilly part on the top of a blueberry where the stem comes out...she and her friend Aubrey worked hard on this design:

..and I made some homemade vanilla ice cream to round it all out...

...finally Anna topped off her evening (before Aubrey spent the night) with a dip in our pool at home...

All in all it was a fun birthday for Anna!  Double digits for my medium girl--wow!

Anna spent every day last week taking part in rehearsals for a production of "Sleeping Beauty" put on by the Missoula Children's Theater (they did a great job!). 

Jared has been spending one day a week babysitting for my neighbor's two little boys, and one morning a week babysitting LIlly for me so I can teach spin.  He has also been really busy building and testing a raft that he and his friends bring down to the bayou and float around, Huck Finn and Tom Sawyer style.  They are having a blast with that.  So far, both kids are averaging one sleepover a week with a friend--a trend I'm not sure we'll keep up all summer, since they are pretty useless the day after the sleepover!

I have laid out "summer policies" again this summer--so each kid has a clear picture of what is expected in terms of keeping their rooms cleans and helping with household chores each day.  They are also clear on expectations in music practice and restrictions on "screen time."  So far so good.

Anna has started piano lessons in addition to her violin, and she is LOVING it!  I am so happy to see her at the piano.  Jared has started some private trombone lessons this summer, which will hopefully be of benefit when he goes back to be part of the jazz band and symphonic and pep bands at Destin this fall. 

Tom continues to keep his nose in his Air War College reading--he is working SO very hard to finish it up in time for his upcoming performance review board.  I try my hardest to make it possible for him to do nothing but read  and study when he is home...

We are working hard to coordinate Lilly's medical care, now that we know Dr. Campbell wants her to see a neurosurgeon.  Getting her medical records transferred successfully from CHOP to the surgeon at Children's Hospital of Birmingham/UAB has proven to be a challenge, and I have had some frustrations in working with some of the staff at CHOP.  I am hopeful the records will arrive soon and we can get on the surgeon's schedule for an initial consult and spinal cord surgery soon.  Then we can proceed with Dr. Campbell on Lilly's VEPTR surgery.

Now on with my day...Lilly is calling over the monitor!

Summer Vacation is Here!

It has been an eventful few weeks here, and I am weary from all the craziness.  Yesterday was an exciting day with lots of emotion as the kids wrapped up their school year, which all the neighborhood moms celebrated by ambushing our children as they came out of the school or off the bus with water guns, super soakers, and silly string.  So glad to have a quiet morning today to be still, let the kids sleep in, and just reflect.  Even I slept in till 6am and forewent the early am workout today.

Jared has now completed 7th grade.  He came home from school yesterday gloating and saying in his ever-deepening voice "Mom, I'm an 8th grader now!  Only one more year and I'l be in high school!"  Yikes he is growing up so fast.  And yet, I look at him and--notwithstanding his physical growth (he is up to my eyebrows now and growing daily; he can wear Tom's shoes)--I see so much growing he has to do emotionally, socially, and in the areas of organization, time management, and self-discipline.  So as I love him and encourage him in who God created him to be, I also am being mindful of ways to spur him on in those areas.  His language arts teacher this year has recommended him for the advanced class for next year with the caveat that "he needs to work on his organizational skills and writing in complete sentences over the summer."  So we will be doing a little bit of summer school at home.  Jared has recently taken up fencing lessons, and is pretty excited about that.  He will begin his summer conditioning for the cross-country team in a few weeks, meaning 3 early mornings of running a week.  I'm hoping for some carpool options so I am not having to get the girls out of bed early...

Anna has now completed 4th grade. She finished the year well, making the A/B honor roll all year long and achieving awards in many subject areas. She is thriving on her violin and will be picking up piano lessons starting next week. Even though a little stage fright at her violin recital this week left her at a loss for notes about midway through her piece, she remained poised and recovered well with a little queue from her teacher/accompanist. And she even calmly and articulately recited a poem she had written as an introduce to her piece before she played it. Her swim season is in full swing, and she has done 3 meets already, with another on the horizon in Tallahassee at the end of the month. 

Lilly, I'm sure, will be happy to have her siblings home with us now. She has been missing school, asking me almost every day "do I go to school today?" and saying "but I want to go to school!" when I've told her that she doesn't have school today. She has been having fun being my helper in household tasks, and she has been resilient as we have had SO many places to go and obligations in the past week or two. One day this week, I counted that she had been buckled into car seat, stroller, or bike trailer 14 separate times in one day. She and I were both ready to just stay home at the end of that day.

Tom is working diligently to finish his air war college readings and exams and papers. The poor guy really never has a chance to relax and just enjoy life. I will be so glad for him (and for the kids and me) when he is finally through with it and can simply do his job (and even take some vacation days!).

On the scoliosis front, we have successfully gotten Lilly's medical records from CHOP down to a pediatric neurosurgeon in Alabama, and are awaiting a call from his scheduler to get LIlly in for a consult and possible surgery on her spinal cord. Again, we continue to be blessed to enjoy "normal" life for now, because I know that upcoming surgeries are going to make life difficult for a time.

So, hopefully, lots of beach days, Big Kahunas Water Park days, and lazy days at home await.

Finally, a Phone Call

Last week I whined about not having heard anything from Lilly's doctor.  At an experienced friend's suggestion, I sought advice on breaking through this apparent stone wall in communication from a few of the internet groups I've found for families with children with congenital scoliosis.  Within a few days, I had heard from several other families who are at various points in the process of surgery with the same doctor, all of us having similar frustrations.  I learned from one family, however, that our doctor has been having his own health issues. 

So, just yesterday, while I was out for a long run, my whining turned into prayers for him.

And today, out of the blue, the phone finally rang. 

He said they have him "patched up and back to work," alluding to whatever his health issues had been.  He said they are trying to accelerate the OR scheduling to get more kids taken care of.  All good news. 

The bottom line is this:  Lilly will need an initial surgery on her spinal cord, which is "low and split," meaning, in his opinion, that there is something structural holding it down and causing it to split.  He recommended consulting with a local pediatric neurosurgeon to repair her cord, then giving her about a month to heal, and then coming to CHOP for her VEPTR surgery.  He is going to consult with the 2 pediatric neurosurgeons at CHOP for some local recommendations (or at least more local than Philly). 

Stay tuned.  It may still be a good thing that our summer is a blank slate (even though I had mentally started to fill it up with activities and trips!).