Wednesday, March 28, 2012

Long day...short post

Keegan had his glo-fil today.  This test requires injecting a radioactive dye through his port, drawing labs at different intervals throughout the day, and then measuring the samples to see how well Keegan's kidneys clear the dye.  The end result is a percentage of remaining kidney function.  The test went well with no hiccups.  Last year, we were dealing with his port that was unknowingly embedded in an artery, which clotted off several times during the day.  This time, the only hiccup was Keegan still not feeling well.  That will, unfortunately, be something we will have to deal with for awhile, I think.  He is very tired, is having terrible tummy pain, and still doesn't want to walk.  We're just praying he shows bits of improvement every day in his attitude, energy, and labs on Friday too.  

Relaxing and trying to stay awake.

Blood samples stacking up throughout the day.
Results should be ready by next week.

Audrey also had a big day.  
Mamie took her for a little trim at the hair salon.

A little unsure about all this.

What are you going to do to me?!

 All this for one little lop-sided curl!

But a happy, little monster by the end of the day.
"EM-MO!"

Tuesday, March 27, 2012

Hesitantly home

I titled this post as I did because Keegan did indeed come home this evening.  We're just a little unsure about whether or not he should be.

After a very long night of watching for pee, it finally came late morning.  He's still very "positive", meaning he's taken in more fluid by IV or mouth, than he has wasted, but his kidney numbers were fairly stable through it all.  High still but stable, nonetheless.  Most of the rest of his labs were fairly stable too.  It looks like the c.diff is about to rear it's ugly head again, but hopefully, that is something we can once again tackle at home.  Again, the risk of picking up a secondary infection inpatient while we wait it out was greater than the risk of going home.  So, here we are.  There's just something different about this time that I can't quite place my finger on that's making me uneasy.

Tomorrow, we will be back at the hospital bright and early for Keegan's glo-fil test.  This is a kidney function test that will give us an approximate percentage of remaining kidney function.  Last year, he sat square at 50%, so we'll see how such an eventful year has impacted him.  This is one area that makes us extremely nervous, so if you're not tired of praying for Mr. K just yet, we would really appreciate lifting a few up in this area.

We can't express our thanks to each and every one of Keegan's prayer warriors enough.  The Lord is surely watching over our sweet Bug.  Thank you for reminding us of that daily.  More info as we know it.

Monday, March 26, 2012

Sleepy boy


This picture pretty much sums up Keegan's day.  If he wasn't asleep, he wanted to be.  I guess sleep is good and helps you heal, so as long as he sleeps tonight too, we'll all be happy.  

Other good news from today: cultures from Saturday were negative for 48 hours, and around 3pm, he was afebrile for 48 hours too.  Ferritin was back down to 1100, and most of his inflammation markers are trending down along with his liver numbers.  As expected, his coags, platelets, and hemoglobin are still dropping, but they do tend to lag behind everything else.  Today was the last dose of pulse steroids.  We are planning to go back again to 7mg/day of prednisone starting tomorrow, since for some reason he seems to be ok on 7mg, not on 6mg.  He is still maxed out on anakinra for now.  We sent the genetic labs that the immunologist and rheumatologist wanted on Saturday, but they will take a few weeks to come back.  The plan for now is to pray he stays stable on the higher prednisone dose and anakinra for the next few weeks and hope that these test results give us some concrete direction on what to try next.  

If that was all there was to the story, then Keegan should be able to come home tomorrow.  As you know with Keegan, things are never that easy.  He has all but stopped peeing today.  We are all on pins and needles praying he picks it up overnight.  We will recheck labs and reassess his kidney status in the morning before making decisions about going home or not.  Ironically, he is scheduled for his kidney function testing on Wednesday anyway.  Should be interesting.  

We were finally able to get him to walk this evening.  Between holding my hand and the railing on the wall, he managed to make one lap around the floor.  It was his first time to walk since Thursday, so he was a touch stiff.  Hopefully, it made him feel a little better just to move though.  

Please join us in praying for some pee tonight.  (Odd, I know, but you should be pretty used to it with Keegan by now!)  May visions of waterfalls dance in your head all night, Buggy!

Sunday, March 25, 2012

Better news

I have held this in all day, not even telling our family, because I didn't want to jinx it.  Until we made it well past the 24-hour mark, I wasn't sure I believed it.

The line culture that grew out was contaminated!!  Keegan does NOT have a line infection!!  Praise the LORD!!  (Dearest family, please don't be mad at me.  I'm sorry - just didn't want to say something until we knew for sure!)

Ok, whew!  Have that out of my system now.  Unless you are the mom of a kid with a line, a nurse, or a doctor, I don't think you understand what an enormous relief this is!  Now, we will still run the antibiotics for 48 hours after the culture was drawn, just to be sure, but oh my, such a relief.

Unfortunately, that doesn't mean Keegan isn't having a MAS flare or that he doesn't need the pulse steroids.  This means that the flare is either being caused by another virus or simply by his underlying immune dysfunction being too powerful for the amount of drugs he was on.  Personally, I think it's the latter, but I have no way to prove it other than that the last two flares have happened when we reduced his steroid load to 6mg/day.  Neither option is good or better than the other.  Both mean we need to get more aggressive in treating this.  He is going to be exposed to viruses his whole life, and he needs to be able to fight them.  But if he is flaring with no known trigger, just because his immune system is attacking itself so fiercely, then that means we need to be more aggressive in treating something that we don't understand still.

Today's labs were fairly stable with a little improvement here and there and a little worsening here and there.  His ferritin went up more to 2500, but that's a minor change in the grand scheme of things.  Tomorrow will thankfully be the last dose of mega-steroids.  Keegan is absolutely beyond miserable.  Nothing makes him happy, and many things cause him to fly off the handle.  He's exhausted and hungry but too nauseous to eat.  We don't know if he is a little zoned out because of the drugs, because he's not feeling well, or because of something more sinister.  Hopefully just the first two.

If all goes well, we could be discharged by mid-week, which would be wonderful.  All of Keegan's doctors will be back on service tomorrow, and the discussion will begin about what steps need to be taken for his long-term health and management.  Everyone now agrees that this disease process is too out of control to take lightly, but we're not sure what will change from here on out just yet.  We did send off the research labs yesterday to see if we can learn anything from Keegan's genetic sequence that would clue us in to where this inflammation is stemming from.  That could take weeks though, so we will have to take action before then to stay ahead of the game.

Thank you so much for your prayers for our Bug today.  They were certainly heard!!


The bright spot in our otherwise crummy day.
Love my Ladybug.
(Sorry, no pics of K today.  He was in no mood for pictures, unfortunately.)


Saturday, March 24, 2012

Bad news, Bears

Before I get to the bad news, let's start off on the right foot.

Today was the Race for Wishes 5K benefitting Make A Wish of North Texas, and K's for Keegan rocked it!!  Thank you so much to those of you who came today to run.  We really wish Keegan, Gray, and I could have been there.  Big thanks also though go to everyone who donated to our team!!  Because of you, K's for Keegan was the Wish Kid team that raised the most money.  $1600!! We are so grateful and in awe of how awesome y'all are!  Isn't that amazing?  And Keegan even got a special prize for your generosity, an iPad of his own!  Crazy, right?

 Most of the K's for Keegan team:
(Top row) - little Evelyn & Maura, Aunt Alex & Audrey, Kelly, Rachel, & Monica
(Bottom row) - Kristen & Mamie
Not pictured are Lisa, Big Daddy, Marley, & Vicki

Kelly and Kristen aren't just members of the superlative K's for Keegan team.  They volunteer with Make A Wish and are Keegan's Wish Granters!  (I know I'm being a little elusive about his Wish.  By now, you've figured out he has been granted one.  It's coming!  It's big!  Get excited!)  More than that, they and Maura are three of my best friends from growing up.  I have known Maura and Kristen since preschool (Mother's Day Out even?). Our family is so blessed to have such close friends working to facilitate one of the most memorable opportunities of Keegan's life.  Each of you who supported our team in the race today by running or donating helped make the wish of a lifetime come true for a child with a life-threatening illness.  You may not understand the gravity of that gift until you are the parent of the child making it, but trust me, that words simply cannot express the beauty of those memories for a family.  Thank you.

That's the good news.  Unfortunately, now we are to the bad news.  Contrary to the connotation of this post's title, it's not about our Baylor Bears.  Women and men's basketball teams are also rockin' it!  Elite Eight, what?!  Awww, SIC'EM!

But seriously, now.  The bad news.  And it's big, very bad news.

Keegan is having an MAS flare, but this time, it's being caused by an infection in his port.  A permanent IV that is tunneled directly into his heart.  

Last night was beyond rough and a little scary.  We ran the first dose of IV tylenol around 9:30pm.  At 2am, his temperature was down to 99.9.  We had noticed his blood pressure dropping, and around 2:15, it tanked.  Then his heart rate started spiking.  The doctors started coming in, worrying he was on the verge of sepsis.  Within a few minutes, his temperature was over 104.  He started vomiting; his heart rate soared into the 200s, and his blood pressure went crazy high.  He was shaking and miserable with almost 30 minutes before we could run the next dose of tylenol.  We pushed some anti-nausea meds and hooked his g-button up to a bile bag that just blew up with nastiness.  Finally, his temp came down into the 99s again, and he was able to get some sleep until the next fever cycle started around 7am.  He did this until about 3pm.  Knock on wood, but it looks like the fever may be gone.  The biggest sign is that his heart rate has come down to normal for the last few hours.  Here's praying for a better night.

Wearing his race tshirt.  There in spirit.

Labs this morning showed a flare happening quickly.  As the rheumatologist said, Keegan is a Ferrari when it comes to getting sick.  There's no ramping up.  It's 0 to 60 in no time flat.  Ferritin jumped to 1300 today; blood counts sank lower, and his liver is getting angry.  This morning, all his blood cultures were still negative, and with such a decreased white blood count and ANC, we assumed this was a viral trigger.  The blood culture from his port didn't grow back positive until this afternoon.  We've recultured and are waiting to see exactly what strain of bacteria it is so we can tailor his antibiotics appropriately.

Due to the frequency of Keegan's flares, the team today decided it was time to pull out the big guns.  A full steroid pulse like we did in Boston.  30mg/kg for 3 full days.  That's the same as if he were in rejection of his heart.  Hopefully, we will be able to control this flare better by starting the steroids immediately, rather than trying lower doses that don't fully work.  Honestly, I was a little surprised to hear them jumping to a full pulse at this ferritin level, since it's really nothing compared to his flares in the past.  There is definitely something to be said for jumping in early, especially in the situation of a bacterial infection that he desperately needs to fight.  The team also said they are discussing where to go from here with his medications.  The anakinra is not enough, especially if we want to have any chance whatsoever of getting him off of steroids eventually.

I don't think I have to explain how defeating this news is.  Even more so though is the fact that he has a line infection.  We can probably beat it into remission if we can get the flare under control.  With an extremely suppressed immune system, it's going to be terribly difficult to fight.  Additionally, bacteria have a tendency to colonize on the catheters; they may stop being angry for awhile, but you usually can't get rid of it entirely without pulling the line.  The bacteria can also invade the bloodstream and the heart.  We are watching both of those carefully, needless to say.  

That's about all I can handle right now.  I hope it was clear enough to understand.  This is the worst situation that I think we could be in, but Keegan is fighting hard.  His labs are a mess, but he is staying pretty stable outwardly for the meantime.  Keep it up, Buggy.  Please, just keep fighting.

I can end the post on a touch brighter note because I have this little beauty to share:

Now, THAT will make you smile.

The first swim of the season.  
Another fun day Keegan missed out on.

Friday, March 23, 2012

Inpatient again

Keegan was admitted to the hospital again this morning.  He spiked a fever (103.8) around 3am.  We gave him tylenol, and he was able to sleep until 7am when we were instructed to bring him to the ER downtown.

It has been a rough day all around.  Keegan has handled the actual fever fairly well.  Retching alot but no true vomiting.  The fever has not come below 100 and has peaked at 104.2 throughout the day, so we will be switching to IV tylenol in about an hour.  His labs look like he is reacting to a virus, flare, or the combo of the two.  His ferritin is up; blood counts down.  We still have to culture his central line to rule out a bloodstream infection as the source of the fevers.  It also requires a contemporaneous draw of blood from a peripheral vein, which he hates and is a terrible stick.  Even though he screamed bloody murder, he sat up after it was over and said "aww, thanks everybody."  My sweet boy.

The cultures take 48 hours to "brew" and require that we prophylactically treat him with IV antibiotics until we are sure the cultures are negative.  Until we are sure of that, we can't treat the flare with a steroid pulse.  Steroids help quelch inflammation, but they are like adding gasoline to a fire when there is bacteria present.  So, we will watch his inflammation markers and pulse him as soon as we can if necessary.  In the meantime, we try to treat the fever and keep him comfortable.  They also ran a respiratory virus test to rule out RSV and a bunch of other issues but will mean he is on contact precautions and isolated to his room during these 48 hours.  So fun.

Feeling really crummy in the ER

Then there were the unexpected wrenches thrown in the day.  He has a biopatch under his port needle, a piece of treated antimicrobal foam that we just started using this week to pad his skin where he was having some irritation.  Overnight, the patch blew up and turned yellow like it was saturated with something.  Wound care team thinks he was having an allergic reaction to the bio patch, and the skin underneath it when we pulled his needle seemed to support that theory.  Obviously, that meant we had to reaccess him, and it took a few tries, i.e. big needle sticks into his chest, to get it right.

To add insult to injury, we went to give him oral tylenol through his g-button while in the ER only to find his button would not flush, draw, or anything at all.  Completely and utterly clogged with magnesium build-up from this morning or even from weeks of the stuff.  Keegan uses a specialty g-button that is not kept in distribution in the hospital.  We couldn't even get the right size of a more standard g-button.  So, we had to get creative.  We pulled his current g-button.  (Imagine a big earring stuck through your abdomen, directly into your stomach.)  Stuck a foley catheter into the hole to prevent it from clogging.  Rinsed, pushed, and pulled on the button until we got it cleared.  Realized we didn't have a guide bar to stabilize for reinsertion but managed to slip a weighted ng tube through it and get it back in place.

By this time, Keegan had just about had it.  His fever came roaring to a head, and he finally passed out asleep.  IV tylenol is running as we speak.  We are praying he is able to sleep comfortably enough through the night to feel better tomorrow.  Right now, our biggest prayer request is that this is truly a flare and not a line infection.  Flares are nothing to laugh at, but at least we can treat them and know what we are facing.  Keegan cannot afford to lose his central line to an infection, nor does he have the immune system to fight one at this time.

More information as we learn it.  Thank you so very much for praying for our Bug.  He means the world to us, and we absolutely hate to see him in pain yet again.  We are inpatient at an absolute minimum until Sunday afternoon if he doesn't have a line infection and doesn't have an MAS flare.  In all reality though, it will probably be a week of pulsing him with steroids and trying to beat back a flare, just to have to renew the discussion of whether or not we should be pulling out bigger guns to stop these from happening.  For now, we wait.  Thank you so much for joining us again on this journey.

Thursday, March 22, 2012

Immunology & EEG

Yesterday was a very long day for our Bug.

We started off with a visit to see Keegan's immunologist.  Actually, we started off with over an hour on the tollroad trying to get to the immunologist, but that's another story.  The actual appointment went pretty well.  No terribly earth-shattering news while we were there.  Appointments with this doctor are always thorough but never short.  Drew a few labs to check his immunization titers and immunoglobulin levels.

The most interesting part of this visit came to light today at Keegan's GI appointment when I learned of a post-visit email from the immunologist to the rest of the team.  I have not spoken to her or any of the doctors from Keegan's medical team to know exactly what it all means, but I think there is some labwork being ordered that may give us a better idea of what is behind all the inflammation going on in Keegan's little body.  I have learned over time to not let myself get too excited over the possibility of answers.  And answers this time may help us answer the why, but they won't necessarily tell us how to treat it or lead us to treat it any differently than we already are.  Only God knows the answers to the deep mysteries of my little boy's body.  Sometimes I have to be okay with that.  But any glimpse He gives us in the meantime is absolutely welcomed!

We met Audrey and Mamie for a quick bite, and then, it was back to the hospital for Keegan's first EEG or electroencephalogram.  This is a test to detect electrical problems in the brain, including seizures.  Several of the strokes and micro-hemmorages Keegan has had are in areas where the neurologist said could affect the neuron connections in Keegan's brain.  He is additionally at risk of seizures from central nervous system inflammation from Macrophage Activation Syndrome.  I don't know exactly what we would find from this test that looks at the brain at a single moment in time, but I'm trying to remain calm about it.  Again, even if we find anything, it's not necessarily something we can do treat, just important information to know for the future.  To set a benchmark for the future.

Overall, Keegan did really well during the test.  He wouldn't sit still to allow the technician to attach the electrodes or leave them alone on his head, so we had to restrain his hands and strap him to a papoose board.  It's not as bad as it sounds, but it is a little uncomfortable.  Once they were all attached, Keegan was supposed to sleep for about an hour.  The test was a sleep-deprivation EEG, so we had to reduce his sleep the night before (sooooo much fun) by 3 hours.  I was nervous that Keegan wouldn't fall asleep, but he did at first.  It didn't seem like he was ever comfortably asleep though.  About 25 minutes or so into it, he screamed out something I couldn't understand but stayed asleep.  About 10 minutes later, he started crying and wanted the "head off, head off".  After the sleep section, there was a part requiring him to stare into a strobe light.  It gave me a headache, but Keegan didn't seem to mind.

Still smiling as the leads are attached.

Getting a little grumpy as they wrapped his head to keep the electrodes in place.

Sleeping soundly for a moment.

Happy to have those wires coming off!

We should get results within a week.  Keegan really surprised me with how well he did throughout the whole process.  I was expecting it to go much worse!  My Bug really is a super trooper, and we are so very proud of him.

Friday, March 16, 2012

Spring Break

So maybe we didn't take any exotic vacations or do anything too out of our ordinary, but we did have a pretty busy week.

Our spring break started with a visit from Teague, Gray's best friend and Keegan's godfather.  Unfortunately, it was a terribly rainy weekend, but it was a fun time anyway.


Audrey has become quite the little dictator and was quite fond of Uncle Teague.
Within a few minutes of his arrival the first night, she started in with "SIT, Teague!"
And she didn't stop...for three and a half days.  Any time he would leave her side.  
Thanks for being a good sport on that one!

On Monday, we went to meet the most beautiful baby girl, sweet Alexandra Claire.  Alexandra's mommy, Stephanie, is my oldest friend, and we are so happy for her, proud daddy Matt, and super big brother, Brady!  Welcome, Alexandra!

Lil' Alexandra Claire

Audrey being silly in Alexandra's nursery.

Keegan rockin' out.

I'm crazy for posting this shot, but this was the best we could do of a group photo!
Stephanie, Alexandra, Brady, Bea (Steph's mom), Martha (Mamie), Audrey,
Alex, Keegan, and me.

Dueling drums with Brady.
I am so mad I didn't get a pic of it, but super cute Brady found a new girlfriend this week.
Nope, not Audrey.  Aunt Alex!  He was super enamored with her.  
Alex colored a picture for him to wish him good luck in his first soccer game. 
Stephanie reports that Brady loves it so much, he asked to sleep with it!  Too stinkin' cute.

Mamie and baby Alexandra

Tuesday, Keegan had his first neurology appointment since we came home from Boston in the fall.  The visit went well overall.  The best thing we heard was how pleased the doctor was with Keegan because he had been expecting a child with much more severe complications based on the brain scans and medical history he had read in advance.  We have known for quite some time that Keegan has been blessed to dodge some big neurological bullets, but to hear it from the neurologist was extremely reassuring.  The damage is there, but the brain is such an amazing organ that Keegan has managed to overcome and compensate for so much of it.  The worst news was (and this is not even comparing his most recent scan in September) that Keegan has had more strokes than we thought.  Again though, they are in places where he has been able to compensate and recover without too much lasting impact other than developmental and behavioral issues.  The doctor said he definitely thinks we need a repeat brain MRI, but we are going to wait a little while since it requires anesthesia.  If nothing comes up to require one sooner, we will repeat it in September.  In the meantime, the doctor said Keegan was at a high risk for having "silent seizures" due to the inflammation from MAS, so he will have an EEG done next week.  We have absolutely seen an improvement in some of his autistic tendencies as his inflammation markers have improved over the last month though.  A direct indication that he is experiencing central nervous system involvement during flares.  Lastly, he will have a swallow study in the next week or so to determine if Keegan's continued drooling is due to a structural problem or a neurological issue.  Then we will follow up with the neurologist in four months.  Again, overall it could have gone much worse, and for that, we are very thankful.

On Thursday, we did something else fun - Keegan's first trip to the zoo!! 

We were so happy Daddy was able to take the morning off of work to join us!

Ta-da!

Can you find the gorilla in this picture?

Aunt Alex is off work for the week too, so she joined us.
Watching the elephants with Audrey at the Giants of the Savannah exhibit.

Keegan did pretty well.  As we expected, he was not interested in the things that most kids are at the zoo.  Like, oh say, the animals.  He preferred to play with the map given to us at the entrance and run around to the script in his head.  However, this time he transitioned between areas of the zoo SO much easier than our excursion to the aquarium over Christmas.  


Aunt Alex and Keegan at the lion exhibit

The cheetah was Audrey's favorite this time, hands down.  
The cheetah would walk out of view, and she would call, "LA LA!!" (i.e. cheetah) over and over again until the cat came back.

Feeding the giraffes some lettuce

The giraffe stuck out his tongue to get the lettuce and Keegan said, "P.U., stinky!"
I don't know if it was the tongue sticking out or what.  He couldn't smell the giraffe's breath or anything due to his mask.  Crazy kiddo.



This was a highlight for the adults.  These are two Galapagos turtles.
One has pinned the other upside down against the wall.  We watched this go on for about 10 minutes.
The one on the bottom would work up some energy for a minute and then give a big push. 
Poor upside down guy.  I'm sure the end result was an upside down, defeated giant turtle!

Daddy and Audrey at the tiger exhibit

We didn't get any pictures of the actual koalas.  They were asleep, as they do for 20 hours a day, which prompted Audrey to tell the boys next to us, "shhh!"

And this is Audrey after the zoo.
If you couldn't tell from the pictures above, she spiked a fever while at the zoo.
We took her to the pediatrician immediately (hence the Olivia sticker on her shirt), where her temp peaked at 103.  No strep or ear infections, negative for flu.  Started her on antibiotics
since she has had a runny nose for over a week.  So far, Keegan is ok, and his labs were good today.
Audrey was a bit better today.  Here's hoping it passes quickly and Keegan stays safe!

Well, that about wraps up our Spring Break.  Not too exciting, I know.  But it was nice to do a few fun things this week.  I am super behind on pictures and what not, so I will try to squeeze those in soon.  Keegan has his normal therapies, labs, GI appointment, an immunology appointment, and an EEG scheduled for next week.  Back to the grind.  At any rate, we hope everyone had a safe and fun Spring Break, and happy Saint Patrick's Day!

Monday, March 12, 2012

Chosen

Honestly, I should give up making promises about when I will update.  It really is near the top of my very long, ever growing list of self-improvements.  Seeing as I'm not getting very far on that front, you'll have to forgive me once again.  I couldn't go to sleep tonight, however, without sharing this.

If you are local to the Dallas area or have read this blog for awhile, you may already know about and be a fan of a documentary series on Children's Medical Center Dallas called Children's Med that is currently airing it's second season.  One of our dear little friends, Rylynn, received her angel heart last October.  She was featured on the first season of the show while waiting on a Berlin heart, and the first two episodes of this season showed the story of her transplant.  You can watch the second episode on the Children's YouTube channel or by clicking HERE.

I wanted to share this tonight for several reasons.  First and foremost, we are so happy for Rylynn and her family and want to share her story.  Second, while we may have had some issues arise over the years, our transplant team (you'll get to see Keegan's surgeon, Dr. G, and our transplant coordinator, Susan, in the show) does amazing work every day that truly deserves to be celebrated.  Additionally, it is a real life view into the operating room during a heart transplant.  This is what our son endured four and a half years ago.  Dr. G explains the transplant process very well in this episode.  Keegan did not have the same defect as Ry, but he went from a form of mechanical life support (ECMO) to bypass to transplant.  He was also only 7 days old and weighed barely 5 pounds, with the heart the size of a walnut.

More than anything though, watching this episode brought on a wave of emotions and memories that I try hard to not think about too often.  I distinctly remember Susan walking into the waiting room (in the old CVICU) and falling to my knees with exhaustion and gratitude when she said Keegan's donor heart was finally in and very "snappy."  Although I have seen my son wheeled down the OR hallway post-surgery more times than I would like to count since then, I can still see his little face peeking out of blankets and tubes.  I remember saying, just like Andrea, "he looks so good, so pink!"  But I also remember realizing, as Dr. G describes, that my son would clinically die on that table that night.  For even the briefest of moments, no heart would beat in his chest.  No breaths would be taken as an entire cardiac team waited to see if his angel heart would bring him back to life.  Back to me.  And I am rocked with that grief and yet the renewal of knowing he was given a second chance all over again.

I don't know what I would have done or what our lives would have been like if things had gone differently that day.  Or if a miracle in the form of a little boy named Johnston wouldn't have come our way.  Still, I wouldn't have chosen any other life...any other child.  I couldn't.  He was chosen for me.


I STILL WOULD HAVE CHOSEN YOU

If before you were born, I could have gone to heaven and saw all the beautiful souls,
I still would have chosen you.
If God had told me, "This soul would one day need extra care and needs,"
I still would have chosen you.
If He had told me, "This soul may make your heart bleed,"
I still would have chosen you.
If He had told me, "This soul would make you question the depth of your faith,"
I still would have chosen you.
If He had told me, "This soul would make tears flow from your eyes that could fill a river,"
I still would have chosen you.
If He had told me, "This soul may one day make you witness overbearing suffering,"
I still would have chosen you.
If He had told me, "All that you know to be normal would drastically change,"
I still would have chosen you.
Of course, even though I would have chosen you,
I know it was God who chose me for you.


-Terri Banish

Sunday, March 4, 2012

Race for Wishes

Keegan was just thinking about what his Wish would be...


Maybe, just maybe, it might be coming true soon!

Just in case (wink, wink) Aunt Alex has started another K's for Keegan team for the 2012 Race for Wishes   5K benefitting the Make-A-Wish Foundation of North Texas!  It's going to be held on Saturday, March 24 at Williams Square in Irving.  

We'd be honored if you would join us!  If you want to attend and walk/run the 5K or Fun Run, online registration is $25 in advance online.  Or you can support the team and Make-A-Wish with a donation in Keegan's honor.  

Click HERE to go to the K's for Keegan fundraising and registration page.

And if you do sign up, please comment below, and let us know!  


Keegan has a busy few weeks coming up, so I will try to be better about keeping up the journal.  Also, please keep our friend, Nate, and his family in your prayers at this time.  He is fighting hard but needs all the prayers he can get right now.  Thank you so much.

**UPDATE: Y'all are AMAZING!  We have almost doubled our fundraising goal!  Right now, only two people have registered to run the actual race.  If you do register to run, make sure to choose the K's for Keegan team!  Thank you so much for your support of a great organization that makes so many children's dreams come true.