Saturday, October 27, 2012

I hate this

Autism, developmental delays, brain damage from stroke or hemorrhages.

I don't care.

I hate it.

I hate that because of it I can't get a picture of my beautiful son.

My friend, Chelle, set up a beautiful photo shoot outside with a lovely Santa who sits and reads stories to the kids for amazing Christmas photos.

I hate that whatever it is that makes Keegan this way means we can't even get him to sit and listen to one story. No posing, no smiling. Just sit. Without a stick in his hand. Without throwing a fit.

There is no reasoning with him. He doesn't want a reward. He doesn't want to do something else. He doesn't even NOT want to do what you're asking. He just can't.

And I don't know why.

I hate it.

It breaks my heart. It makes me angry. And I hate it.


- Posted using BlogPress from my iPhone

Thursday, October 25, 2012

Some smiles

Just so I can avoid a post with actual content for a few more days, here are a few smiles for ya.

LOOK...AT...THIS!!
Keegan has been working on writing some letters as part of his behavioral therapy.
Attention to task and taking direction are really difficult for him, so these four letters are beyond amazing!
The circled ones he wrote on his own with direction from his therapist.
I think I'm going to have to frame it.


 And lest the post get too serious...
Where did this goofball come from?

She was helping me clean up the backyard during Keegan's school session.
First her shoes came off when they got muddy.
Then she saw the mud on her dress, and it went too.
She was wearing gardening gloves, running in circles singing, "I got glubs!"
Hysterical!

Speaking of running, Audrey has taken to telling us that she is going to be a runner
"like Mommy but faster with a phone in my pocket."
Umm...ok.  
Looks like she has some good form so far!


Goofy, gorgeous girl.
Even with a busted lip where Bubby hit her with a play baseball bat.  Sheesh.

Saturday, October 20, 2012

Getting ready to Run the Rock

Ok, so it's not called the White Rock marathon anymore, just the Dallas marathon, but "run Dallas" doesn't quite have the same ring.  Leave it to Dallas to mess up a good thing.

You may remember this post from back in April when I talked about starting to run again after a hiatus of several years after Keegan's birth.  Well, despite setbacks from surgery and inpatient stays, I've kept it up and finally feel like I'm back in the game.  I ran a 20K race the day of Keegan's 5th birthday party,  and I placed third in my age group in a 5K at the beginning of the month (just 1 minute faster to be first, sheesh).  Time to move on to bigger things though.


I ran my last half marathon, the Country Music half, in Nashville in 2005, the day after my very last law school exam.  I was training for the 2007 White Rock half (it used to be run at the beginning of the year) when I found out I was pregnant with Keegan.  It's rather fitting, I suppose, that my first distance race after resuming running would be to finish where I left off.  So, I am registered for and getting ready to run the Dallas half marathon on December 9.  (See, so much less allure in that sentence than "run the Rock half marathon"...oh well.)  I would love to be in shape to run the full, but alas, that will have to wait until another time.

The best part about this race though is that it benefits Texas Scottish Rite Hospital for Children, where Keegan sees his rheumatology team and developmental pediatrician.  It couldn't be a more perfect race to run.

But I'm going to need your help to do it!

1.  I've signed up to fundraise for the hospital and am hoping to raise at least $250.  TSRHC has been operated by the Masons completely free of charge to its patients since its founding in 1921.  Until this year, when the strains of healthcare costs and economic depression caused the hospital to have to start seeking reimbursement from private insurance and Medicaid.  Uninsured children are still never asked to pay, nor are any co-pays or deductibles charged to any patient family.  This still means that the nonprofit hospital operates almost completely on donations to care for the children treated there every day.

TSRHC is a unique place, unlike the other hospitals where Keegan is treated.  He adores going to see Dr. Punaro and her team at "his crayon hospital".  We could not be more grateful for Dr. Punaro's ability to see Keegan as a complete child and how each treatment and medication affects his entire wellbeing, as well as how it affects our family life.  The hospital holds a special place in my heart beyond the loving treatment my son has received there because I, too, was treated there as an infant to correct my foot alignment.  Scottish Rite has been in our family for over 30 years now.

On the playground at TSRHC


If you feel called to support TSRHC and my race, I have set up a page for secure online donations through the marathon website:
http://www.dallasmarathon.com/donate/?kwoAdvocateId=4QQQ5W1

If you would like to help but not donate online, please email me, and I will be happy to arrange something else.  Thank you in advance!!!


2.  I also signed up with Team Beads of Courage to carry a very special bead with me on race day.  You may know that Keegan has participated in the Beads of Courage program since it came to Children's in 2010.  He has countless beads - over 28 strands now.  They are an amazing testament to his journey over the last five years.  I am excited to carry a bead with me, infuse it with hope and encouragement before sending it back to BoC to be passed on to a child battling heart disease, cancer, or other chronic ailments.
Some of Keegan's beads hanging proudly in his room

If you are also running the race or any other race or century ride, won't you consider joining Team Beads of Courage?  I truly believe it will give me more strength to push myself than the child who ultimately receives my bead.  It will be a palpable reminder of Keegan's struggle during a test of my own endurance.
The beads I will carry on race day


3.  A call for ARTISTS!!  
My sister, Alex, coined the team name "Ks for Keegan" (K stands for kilometers here) several years ago for races, but we have never designed a logo for it.  I have zero artistic talent, but I know someone out there does!  If we had a logo, we would be able to print tshirts for team members at future races, and I intend to at least have a technical shirt printed to wear for the Dallas half marathon.  We would like the logo to incorporate a green ribbon for organ donation and a heart.  We also use the phrase "Runnin' for the Bug" sometimes, so that might feature somewhere also.  The main point of the shirt will be to spread awareness about organ donation when we are at events like this.  If you feel inspired to create a logo for the Ks for Keegan team, please contact me by email or through the comment section below.  

So that's about it!  7 weeks to go until race day.  Thank you so much for all your help - a prayer, a word of encouragement, a donation, anything.  We appreciate it every show of support for Keegan, our family, and the hospitals that treat our Bug.  

Thursday, October 18, 2012

Keegan's First Day of Pre-K

Today was Keegan's very first day of Pre-K!!


We finally got everything squared away with the school district for Keegan to start receiving in-home instruction with a special education teacher for two hours per week.  She will come Tuesdays and Thursdays, and they will also send a speech pathologist out for 30 minutes per week, in addition to his regular speech sessions at Baylor.  There will be a lot of repetition of programs he is already working on with speech and behavioral therapy, but his teacher will also follow the typical classroom curriculum.  If he is still homebound next year, he will receive four hours of instruction at home for Kindergarten.  

Keegan and Miss Jenni, his teacher

Not your typical first-day-of-school pictures, but we will take it!!

As expected, he had a little bit of difficulty transitioning and with attention to task, but overall, he did very well!  He made construction paper blackbirds and worked on his colors.  We are excited to start with a normal schedule next week and see all he can accomplish.  Between 8 hours of ABA, 2 hours of school, 1.5 hours of speech, and half an hour of physical therapy per week, he will have plenty of opportunities to shine!  ;)  Good luck, Bug!  We love you and are so very proud of you.

Sunday, October 14, 2012

Briefly

It seems I'm slacking a little in the blog updates again, but to be honest, it's been a pretty crazy, hectic week.  Due to some missed sessions from doctor's appointments and therapist's conflicts, we have had to schedule make-up ABA sessions almost every day of the week.  He is making some amazing progress that I can't wait to post about soon.  Until then, I have a few phone pictures from last month to share.  Keegan is still limping, so we are anticipating an MRI sometime this week.  However, his labs were starting to get back to his own version of normal by the end of the week, which is very reassuring.

I will update more soon.  Another busy week awaits us!  Hopefully these will bring a smile to the start of your week.

TPN still running on a Saturday morning

Dress up time!
Minnie goes to Mexico

Sir Keegan, the cowboy knight

Sic'em Bears!

A trip to the shoe store for back-to-school sneakers

Lainey, Audrey, and Walker going into school one morning

Saturday, October 6, 2012

Weekend Wrap-up

After spending all day at Scottish Rite conferring with Keegan's doctors and having an ultrasound of Keegan's hip and leg, we still don't know much more about the limp and funky labs plaguing the Bug this week.  We repeated labs on Friday.  His ANC and WBC are dropping.  Again, they are going from normal to low, but that is more what we expect from Keegan than normal numbers.  His liver numbers and inflammation markers looked a little better, but his D-Dimer was still elevated.  The ultrasound was unremarkable, and his rheumatologist said he didn't have any raging arthritis that she could feel on examination.

The doctors feel the most likely explanation is that Keegan has begun experiencing some bone head degeneration in his hip from chronic steroid use called avascular necrosis (AVN).  It is early enough that we can't see it on plain film x-ray, but that is a good thing.  It usually isn't visible anywhere but MRI until it has reached an excessive amount of degeneration.  So, we really need an MRI to confirm this theory, which would require more anesthesia.  The plan right now is to watch him at home for a few more days.  If he continues to limp consistently, we will go ahead with the MRI.  However, there is no real way to reverse AVN, and the best way to treat it is to stop the steroids.  Obviously, that is very difficult, if not impossible, at this point with Keegan.

This weekend, he has continued to limp, but he seems to have a bit more energy.  We are hoping that remains the only concerning thing for the next day while we continue to look for answers.  Thank you so much for continuing to pray with us while we wait.

Entertaining himself on the playground at Scottish Rite while we wait

Silly girl with her hula hoop

Wednesday, October 3, 2012

What now?

"What now?" comes out of my mouth too much than I would like to admit with my kids.  Evidently enough that Keegan and Audrey have both started parroting it to each other.  And sometimes to me!

Today, we were saying it to Keegan and his medical team for an entirely different reason when we ended up in the ER at the Legacy campus this afternoon.  Fortunately, we are home tonight, and yet unfortunately, we don't have many answers than when we went in.

Keegan ran a low grade temperature all afternoon on Saturday.  Not quite high enough to warrant bringing him in for cultures and antibiotics, but high enough to make him tired and feeling crummy.  We braced ourselves for what we were sure was an ER trip and admission by Sunday morning.  However, the fever was gone Sunday morning.  Keegan continued to act fatigued, and his bowel movements started to get looser.  Still, there wasn't much I could put my finger on that I felt we needed to call the medical team before his regularly scheduled labs on Friday.  Until he woke up with a pronounced limp this morning.

Twice last week he woke up limping but was ok by noon.  Not today.  Limping can be a sign of arthritis caused by inflammation from a flare in his joints.  The combination of events led us to agree to bring him in this afternoon.  X-rays showed no signs of a fracture anywhere in his left leg.  His labs were somewhat thought-provoking.  Mostly, they looked pretty stable; inflammation markers were normal.  His ferritin wasn't high either.  However, his coagulation factors were elevated; his white count and ANC were high for him.  His D-Dimer was elevated too, which is not a benign factor.  Since he was acting ok though, we came home for the night to confer with the rheumatology team tomorrow.

So what now?

Something is not right.  These labs do not add up, and while he does not appear to be in pain, there is certainly something wrong with his hip or leg.  We are just praying that we get some sleep tonight before trying to get a better answer to "what now?" tomorrow.  As always, we would greatly appreciate you joining us in that prayer.

Tuesday, October 2, 2012

Portraits

When Keegan was two years old, my parents had his picture taken by a portrait photographer.  Since we loved it so much, they did the same for Audrey.  We just picked up Audrey's portrait this weekend.  My dad's friend and business partner, Dr. Vergne, and his wife, Olga, presented Audrey with this beautiful dress when she was born.  It was handmade for her in their home town in Puerto Rico, and it could not have fit her more perfectly.  There is a gorgeous matching linen blanket, but a certain little girl developed an attitude by the time we tried to incorporate it into the picture.

Can you believe this? 
She looks more like a porcelain doll than a real girl!


Here is Keegan's.  He looked so much healthier then.
I love looking at his smile.  Such a classic one that we don't often seen from him in photos.

We are so grateful for these amazing portraits of our babies.  They will be treasured by our family for generations, I am sure.