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.  

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.

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? 

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.  

Transplant picnic

On Sunday, we attended the annual Children's solid organ transplant picnic.  We missed last year because Keegan was inpatient at the time.  Three years ago, I went into labor with a little spunky miss during the picnic.  This year was much calmer, and we all had a lovely time.  Smaller crowd this year, and only two of our heart friends were there, little Brynn (in blue at left of front row, waiting on her second heart) and baby MacKenzie (in her big sister Grace's arms on the right in matching dresses).   This is the only picture I was able to get due to a camera issue, but this group of amazing miracles is enough of a post all on it's own.  Don't you think?

Finally what you've been waiting for...

Have I put off a substantive update about Keegan long enough yet?  Yes?  Ok.  I apologize for the delay, but it is for the most part a no-news-is-at-least-no-bad-news kinda thing. 

To start off with, Keegan's heart is A-Ok, as usual.  We had a quarterly transplant clinic appointment last week with echo, labs, and doctor visit.  It’s always good to hear that his heart function is great and stable.  No concerns at all there.  It’s the rest of his little body that always throws us for a loop.

We have successfully weaned down another milligram of steroids.  Keegan will only have about four more months of them if he holds on this pattern without incident.  Starting with the next wean, we will likely increase his anakinra to give him extra coverage from a flare with the reduced amount of steroids.  That will be the equivalent of two full adult doses per day.  Luckily, there are few side effects of anakinra.  However, it locks us into using a central IV for the foreseeable future.

We met with the immunologist last month.  She gave him some vaccination boosters to try to increase his protection from certain strains that he didn't respond to initially, and we also gave him a dose of a special pneumonia vaccine that children don't usually get.  This was two-fold.  This vaccine is for a saccharide-based bacteria.  By giving him the vaccine and then testing his response a month later, we were able to (1) protect him from this bad strain of pneumonia and (2) see if his immune system can respond to especially dangerous saccharide-based bacterias.  Thankfully, we got good news on both fronts!  He had a good response to the vaccine, which gives us such peace of mind.  

We have a follow-up appointment with the neurologist in two weeks.  We're anticipating that will be another good report with stable news.  His teacher recently did some informal standardized testing in order to prepare for a meeting with the school district to plan for kindergarten (yikes!).  Keegan placed in the 32-40 month age range in social/emotional and communication, and on the low side of average for his real age range in cognitive skills!  That means that while he has difficulty expressing himself and engaging with others or attending to self-help needs, he understands things on a level consistent with other five year-olds.  This is a full year better than where he placed in January of 2012.  He will have a formal evaluation by the neuropsychologist again in July to get more solid numbers, but we couldn't be more thrilled.  Keegan has worked hard for that progress, and it shows.  As for kindergarten, the medical team, the school, and Gray and I all agree that he needs to be home-bound for at least one more year due to his immune suppression.  He would have been in a resource room alone for all core subjects anyway, so keeping him home makes even more sense.  Next year, he will continue with his current special education teacher (yay!), but he will have 4 hours of in-home teaching, instead of just 2 hours.  Hopefully, we will learn more about his genetic immune deficiency and get him off steroids during the coming year, which will help him feel better, learn better, and have a better chance of leaving home for school by first grade.

Our biggest problem lately has been getting his electrolytes stable, mainly his magnesium levels.  His potassium and sodium have been ok as of late, but his mag and phosphorous are chronically low.  The mag is the one of most concern, as low magnesium can cause heart arrhythmias.  In a denervated heart (the electrical pathways of the heart are cut during transplantation), arrhythmias can be dangerous and difficult to correct.  Unfortunately, the main anti-rejection medication, tacrolimus, inhibits the absorption of magnesium in almost all patients.  Keegan has always had low levels, and for the most part, we’ve been ok with it, as he didn’t have too many ill side effects of the condition.  At least, so we thought.  The few days that we were able to get his mag levels even a touch higher than his normal levels (nowhere near normal), his teacher and therapists all consistently noted that he behaved better, was more cooperative, and concentrated better in sessions.  This prompted us to believe that even though he seemed "ok" at these chronically low levels, he would be better with higher ones.

However, lately his levels have routinely dipped to “critical” levels.  The doctors first increased his TPN to three nights per week. Then, the TPN was stretched from 10 hours to 12 hours.  We completely maxed out his oral dose of supplemental magnesium.  Finally, we gave him a few doses of IV magnesium here and there.  We checked his kidney function, but it didn't seem he was wasting an excess amount via his urine.  When nothing else worked, the team decided to bring him into the hospital for IV mag every Tuesday and Thursday.  After the first week, his levels were still low, so know we're increasing his dose...again.  Our goal is to get him at least close to normal.  So, it looks like this will be our new routine for a few months.  If it works long term and he tolerates the infusions well, we will eventually be allowed to administer them at home.  
Of course all this fluid has him a little on the puffy side, but that's a small price to pay for now.  Regular labs will be drawn on Friday, so we'll see if all the work is even helping him at all.  He has been sick with a cold that his sister brought home.  It's been a little hard to tell how he's feeling other than that, but the snot seems to be subsiding now.  We are hopeful for a break for our little buddy soon.

I again apologize for the delay in posts.  Sometimes things aren't really black-and-white, and I'm not sure what to update about, if anything.  Sometimes I don't want to jinx a good stretch.  More often than not, I'm exhausted by the time I sit down, and I really just don't want to dwell on it all.  I've said before that it seems hardest to grapple with everything when things are stable, when you have time to actually think and react.  I have a million excuses to throw out.  At any rate, thank you for sticking with us through it all, thick and thin, stable and not.  It means the world to us.

And to show our appreciation, a little entertainment for you:

A very special Stars Game

Last fall, Aunt Alex gave Keegan a very special gift: tickets to his first Stars game and a chance to ride on the Zamboni in between periods.  When the strike was over, she made it all come together.  I wasn't able to attend due to my lovely sprained ankle keeping me in an orthopedic boot and crutches, but Keegan, Gray, BD, Aunt Alex, and Cody had a night to remember cheering on the Dallas Stars!

Keegan and Aunt Alex

Gray, Keegan, Big Daddy, Alex, and Cody

BD and Keegan getting ready to ride the Zamboni

The Stars staff was awesome and bent the rules to let Gray ride

with Keegan, considering his anxiety and medical issues.

Somehow, I don't think Gray minded.  ;)

Keegan really did well overall.  

A little overwhelmed but staying calm

Waving to his adoring fans!

At the end of the night, the Stars beat San Jose to win a playoff spot.  We know it was Keegan's presence that spurred them on!  Thanks again, Aunt Alex, for a night Keegan will always remember.

Pray for Boston

I had planned on an update tonight on Keegan's transplant appointment and other family happenings, but right now, there is only one thing occupying my thoughts.

Boston.

I am struggling to sort out all my feelings, let alone put them in print at the moment.  They are coming from every aspect of my life.  As a runner.  As a mom.  As an American.  As someone who loves the city of Boston and all the hope it has provided our family.

My mind constantly flashes back to four years ago today.  Our apartment at the time was on the corner of Mass Ave and Boylston.  The finish line of the Boston Marathon less than a quarter mile down the street.  Gray, Keegan, and I literally stood right on that corner under the country flags to watch the elites come in on Patriots' Day 2009.  It could have been us.

Keegan and I in 2011 across the street exactly from today's tragedy.

As a runner, Boston is the epitome of our sport.  It is more than a marathon.  For many, it is the culmination of a lifetime of pain and perseverance.  Race day is a beautiful symphony of people pushing their own limits, honoring others, and coming together to rise above.  As Katherine Switzer, the first woman to ever run the Boston Marathon, once said, "if you are losing faith in humanity, go out and watch a marathon."  

My heart is grieving tonight for so many reasons I have yet to sort through.  First and foremost, I grieve for those lost and injured tonight, especially for the parents of the young boy among the casualties.  For everyone who was present today and everyone who responded.  For law enforcement working tirelessly to find answers and medical staff caring for all involved.  For every runner who is safe and for every runner whose dreams and security in their sport were shattered today.  May you each find healing and peace during this time.

Tonight as I put Keegan to bed, only one song came to mind.  As he fell asleep, I cried but continued to sing.  This has provided both of us comfort in times of need, and I hope it does for all in Boston tonight.  

You who dwell in the shelter of the Lord

Who abide in His shadow for life

Say to the Lord, my refuge

My rock, in whom I trust

And He will raise you up on eagles' wings

Bear you on the breath of dawn

Make you to shine like the sun

And hold you in the palm of His hand

For to His angels, he's given a command

To guard you in all of your ways

Upon their hands, they will bear you up 

Lest you dash your foot against a stone

And He will raise you up on eagles' wings

Bear you on the breath of dawn

Make you to shine like the sun

And hold you in the palm of His hand

-On Eagles' Wings

Mouse-ker-size

I have a lot to update about, but I've been a bit sidetracked with another stint on crutches, among other things.  Yep.  Fun times.

In the meantime, I had to share this gem with you.  Keegan following along with a Mickey Mouse-ker-size episode while waiting for his TPN to finish on Saturday morning (his IV pole is behind him still).  Turn it up and watch closely to see him play the Simon Says like game.  Not only is it cute, but it's amazing how closely he is following instructions, something that is so very, very difficult to do in real life.  I love it.

Time for Eggs is Easter-time!

The first major holiday of 2013 was spent at home!

We kept Easter weekend low-key, family-focused, and home-bound, 

and it couldn't have gone better.

Saturday was spent at Oma and Pop's house with egg hunt #1.

As has been his want the last few years, Keegan prefers to gather eggs sans basket.

"I see it! A yellow one!"

"Come here, puppies! I have bubbles for you."

Poor Jack and Oso endured Audrey's "attention" like champs.

Finding more eggs with Pops

Daddy and Keegan opening their treasures.

No church again for us this Easter Sunday.

Somehow I believe God understands the need to keep Keegan out of the crowds.

Hopefully, he will be in a better place by next year and able to return to church.

Surveying the loot from the Easter Bunny

Opening presents from Aunt Alex

To be specific, Audrey is opening Keegan's present.  

She is a bit of a present hog.

These Monsters Inc. characters are his new obsession.

Looking closer

After the Bunny's baskets, we went to Mamie and BD's house for egg hunt #2!

Posing with Aunt Alex

One day they will both smile for the camera, right?

Making funny faces with Mamie and BD

Lovin' on Poppy and Chum

Chillin' with Poppy while Audrey napped

"This one is poi-pul!"

In addition to not using his basket, Keegan prefers to open as he goes.

Cascarones!!

Confetti hair

Full baskets, cheesy faces

We hope you each had a blessed Easter!