Friday, May 24, 2013

TSRHC Farm & Ranch Day

I'm really liking having a string of positive posts here.  What a pleasant change!

Last Saturday, we attended one of our favorite hospital-related events, Scottish Rite's annual Farm and Ranch Day.  It's always a fun morning, and this year did not disappoint!

Big tractor, little bugs

Rollin'

She could totally drive this thing through downtown, no?

This was the first year the kids were old enough to try their hands at the catfish.
A neat organization called KidFish sets up this pool with catfish to teach the kids 
how to catch and release.

Got one!

Keegan even got a trophy for his catch!
It's a whopper!

"Hey, where's mine?"

Audrey was extremely disappointed that she was not allowed to actually ride the horse.
Sitting for a picture was not what she had in mind!
Someone will be getting riding lessons in a few short years. 

This is one of two horses that a local rescue organization brought out that have prosthetic legs.
This horse had been horribly abused, and his front leg was broken at a horrid angle.
Instead of amputating, they fashioned a prosthetic boot that allows him to walk.
The other miniature horse, named Midnite, actually has a true prosthetic leg.
Amazing animals and compassionate people.

Petting the bunny

This is a horrible picture, but it makes me laugh.
We told Audrey to say "yee-haw", and she automatically threw her hand up.

Same picture on this slide three years in a row between Farm Day and transplant picnics.

We once again took a chance on face painting.
It was a no-go again for Keegan.

Not surprisingly, Audrey chose a crown with sparkles.

"See?  It's my princess crown!"

I cannot explain how happy it makes me to continue to have fun adventures with these two to post.  It doesn't mean that the day-to-day has gotten any easier or that there aren't important medical issues to be addressed.  But for a very long time, there were no happy posts to interject between the realities.  Right now, we are home.  Keegan is stable.  We are moving forward and trying to find the joy in each day.  I may have to dig deep to find it some days, but it is there.  Every day that they are both in my arms is one of joy, no matter what else may come.  

Wednesday, May 15, 2013

Blessing

We received notice of a simply amazing blessing yesterday that I had to share about here.  A nonprofit called the JLH Foundation in Houston donated a large amount of money to COTA to be distributed to their patients in Texas, and a generous amount was directed to Keegan's COTA account.  We have been depleting Keegan's COTA account very quickly between his many inpatient stays, trips out of state to other hospitals, and cost of his rehabilitative therapies.  After receiving our most recent information from the neurologist on the brain atrophy Keegan has suffered, we are more driven than ever to continue to pursue these therapies in order to help him grow, learn, and achieve more.  This donation will easily replenish his account and lift the burden for us immensely over the summer and the rest of this year.  I'm at a loss for words to explain this blessing other than that we are extremely and humbly grateful for such a gift.

The JLH Foundation was created by John L. Hern of Houston, who saw a need to financially support his fellow transplant patients as he waited almost a year for his own heart transplant.  After his death due to rejection, the JLH Foundation was able to donate the Patient Resource Center at Methodist J.C. Walter Jr. Transplant Center in Houston.  I couldn't find much more information on the current state of the Foundation, but we were informed by COTA that their donation was to be directed to Texas families receiving aid through COTA.  We are so thankful for the generosity of the JLH Foundation and the work that COTA tirelessly does to help families like ours.  I pray and plan that one day our family will be able to bless others on this journey as graciously as these two organizations.

Monday, May 6, 2013

Super Saturday

Now, these are the type of posts I really like to write.  In 2013, Gray and I committed to giving more quality to Keegan's life, since we know we aren't guaranteed anything with him.  Too many hours in a hospital room will have you ready to take a few conservative risks and start crossing off all the things we've been wanting to do for years.  This weekend, we did two of them: a road trip for fun and a visit to Baylor to see the bears.

 First trip to the Bear Habitat
Only one of them, Joy or Lady, was there, and unfortunately, she was sound asleep.

We stopped at the student memorial briefly to say a prayer.

My best friend and roommate sophomore year, Amber, was killed by a drunk driver 
at the end of the year.  Her accident was one of the reasons I went into criminal prosecution.

Sic'em Bears!

We didn't get to spend as much time on campus as I would have liked, 
but we will be back!  We had more fun things to get to....

Miss Rylynn turned 4, and we simply HAD to come wish her a happy birthday.
So down to Lampasas we went to celebrate Teenage Mutant Ninja Turtle style!
If you watched the "Children's Med" program, 
you may recognize this precious miracle.
Her heart transplant story was prominently featured.

Taking a whack at the Raphael pinata.

Audrey had SO much fun!

Cowabunga, dude!
Mamie made some awesome chocolate pops to celebrate too.

Yep, that was a pretty super Saturday for our little family.
Gray and I had an early morning the next day, running the Cinco de Miler 5 mile race.
This was my fifth race in the 13 in 2013 challenge, 
and my first race post-ankle sprain.
Felt pretty good.  We ran for fun, not time though.



I did not carry a bead this race for Team Beads of Courage, but Gray and I 
were privileged to meet Sunday with the national director 
of the Team, Bryan, and his wife, Debbie.
Bryan has carried the same special Courage Tiger bead with him 
for his last 5 half marathons.
He said he was waiting for this well loved bead to find a good home.
And it did.

Thank you for Courage Tiger, Bryan!
He will be in good company with Keegan's growing Beads of Courage collection.
We are so blessed to participate in this amazing program, 
and I am extremely excited to continue 
to participate in Team BoC in the coming years!

How's that for a SUPER weekend? 

Thursday, May 2, 2013

Neurology follow-up

Keegan had a neurology appointment on Tuesday, and I'm still struggling to wrap my mind around it.  It was another one of those good news/bad news meetings that leaves the doctor feeling good but the parents rather torn.  A feeling I should be quite used to at this point, I suppose.

Since it was one of those kind of appointments, let's break it down that way:

Good news:

  • The doctor was very impressed with the progress Keegan has made since we saw him last summer.  At the time, Keegan had just come off another steroid pulse.  He wasn't using much language and was extremely frustrated all the time.  He was hitting himself, and there was concern he was continuing to have strokes or silent seizures.  We did an EEG that ruled out the seizures and repeated his brain MRI, since he hadn't had one since we came home from Boston.  
  • We compared the three most recent scans from June 2011, September 2011, and August 2012.  He counted as many as 10+ areas of infarct, i.e. strokes, but there are NO new strokes in the latest scans.  Very good news!
  • Unless Keegan has another trauma, big MAS flare, or really declines from a developmental standpoint, the neurologist doesn't necessarily think there is an immediate need to repeat the MRI or follow-up with him on a regular basis.  
  • Once again, the biggest compliment the doctor gave Keegan is that he looks nothing at all like what a neurologist would expect simply by looking at his scans and medical history.  He said this last year, and after this year, he said he meant 200% more.  We are so grateful that Keegan has weathered these storms.  Hearing how bad things could be based on what the neurologist sees on paper really drove home our gratitude for God's blessings and protection for our Bug.
Bad news:

June 2011 on the left; August 2012 on the right.

  • It doesn't take a person well-educated in neurology to see the dramatic difference in these two scans.  The 2011 scan on the left was done after we removed the misplaced port out of Keegan's subclavian artery that was likely the source of his strokes.  The 2012 scan was done just before Keegan's 5th birthday.  
  • The two main differences are the size of the ventricles (black spots in the middle) and the amount of hydration of the cells in the lobes.  As you can tell, the scan on the left shows "fluffier" brain matter and obviously more of it than the one on the right.  If you think of the brain as a sponge, Keegan's is rather dried out at this point.  The doctor believes this global atrophy is due to inflammation and increase in Keegan's intercranial pressures during MAS flares and long-term steroid dependency.  
  • Essentially, Keegan's brain is about what a 60-year-old's would look like.  There is no way to fix the damage that has been done so far, but we are doing our best to prevent further rapid deterioration by aggressively weaning his steroids and keeping the MAS under control.  Despite this damage, Keegan has continued to show that he can learn and improve, so there is a vast amount of hope still there.  The neuropsychologist who we will follow up with later this summer will be the one to help us understand what we can expect from Keegan developmentally in the long-term based on these scans.  
Is there much left to say after that?  I'm not sure.  I think the news kind of speaks for itself.  It's not really necessary for me to explain why this information is difficult for us to process.  Even though it is blanketed in such good news, the take-away is still so vastly disappointing.  We are, of course, grateful that Keegan has dodged so many bullets.  Yet, it still doesn't make the damage easier to accept.  We will absolutely turn our focus on the many positive bits of news that we learned.  We will wait patiently for news from the neuropsych evaluation in July.  But more importantly, we will continue to trust that the Lord has Keegan firmly in His grasp and that with hard work and His blessings, Keegan will continue to grow and thrive in the coming years.