Sunday, March 28, 2010

Golf and Easter Eggs

Keegan had two fun events on the last two Fridays.  This past Friday evening, we went up to the Legacy campus of Children's Medical Center (right down the street from us) for an Easter egg hunt.  Keegan picked up two eggs and then tried to hand his eggs out to other kids.  Very generous, but not quite the idea!  We managed to keep the two he did pick up, and he really had fun running around the hospital grounds without having an appointment or blood draw to go to.  He also helped me decorate a cookie after the egg hunt.  He wouldn't eat it (surprise), but he wouldn't let go of it either!  He clutched it to his chest, icing-side first of course, and ran around with it.  What a character!
Why do you want me to pick up something off the ground, Daddy?  Don't you usually tell me not to?

Posing with his basket...instead of picking up eggs!

There was a bracelet in the first egg, which he wanted nothing to do with at all!  Such a boy!

What's in yours, Daddy?  Ohh, a sticker!

Playing with his eggs

Two weeks ago, we met Big Daddy and Aunt Alex at the golf course for his first putting lesson.  (Just kidding, but he does have his own little driver and putter courtesy of BD.)  Keegan was more interested in dropping golf balls into the holes and digging them back out.  But he really likes to pull out the flags on the putting practice green and RUN with them.  Very safe, I'm sure!  He also got to "drive" a golf cart with BD - so much fun!  It should be interesting to see if his skills improve over the summer!
Any balls in this hole?

Dropping the flag for half a second to check a hole for his golf ball.
Hopefully the first of a lot of fun times on the green with BD!

Friday, March 26, 2010

You're Welcome!

We received a neat little "thank you" from Children's today.  It said to watch the below video for a special thank you from the staff.  Notice anyone familiar?? 

http://madeleine.thanksfrom.childrens.com/

Really neat!  Any of our other CMC friends get one of these cards?  Didn't know if we got one only because of the cameo or what.

Anyway, enjoy the video, and keep reading for an update about Keegan's cardiac clinic visit on Monday!  Have a great weekend!!

Cardiac Clinic

Keegan went to cardiac clinic on Monday.  No time like the present to update, right?!  Sorry for the delay, and we appreciate the prayers for a good appointment.  They were certainly answered.  It was a long day, mainly because there were just so many kids trying to make up their appointments from Spring Break.  Keegan's chest xray and EKG looked great.  He doesn't get another echo until September!  His weight was up a little more - he's 29.5 lbs now!  We dropped one of his medications, Lasix, and will watch his blood pressure closely to make sure he truly doesn't need it anymore (we check his BP twice a day everyday at home and will for the rest of his life). 

We did add two new vitamins to his repetoire - E & C.  A combination of these two vitamins have been shown to do better than statin medications to prevent coronary artery disease.  Statins can cause liver problems, GI problems, and developmental delays in some studies.  Well, we already have liver and GI problems, and we certainly don't need more developmental delays!  Coronary artery disease and the corresponding heart attack are the leading cause of death among heart transplant recipients after the first two years.  Keegan needed to be on something to protect his heart, but his liver and GI system couldn't handle the statins.  But there are NO side effects to the vitamins!  Once he can swallow pills or chew tablets, these two will be easy to give him.  Until then, it's a little bit of a pain in the rear, but honestly, it's still easier than TPN or tube feeds!

As always, his labs were the biggest question mark of the day.  His red blood cell count remained stable; further evidence that he's kicked his anemia of chronic disease!  His kidney numbers were also stable, and although still elevated, his liver numbers have stayed within what we've just deemed Keegan's normal range.  His immunosuppressant levels were low, so we've increased his dose a hair and will recheck it next week.  The biggest "what??" was with his white blood cell count (infection fighters).  As you know, we give Keegan shots twice a week to boost this number because Keegan's have always been low.  We don't need him suppressing himself on top of what we already do to protect his heart.  I won't go into the long explanation, but we decided to recheck this number on Wednesday.  It was better then, so we've decided to trial run Keegan on one shot per week!  We'll be rechecking his levels again next week along with his other labs and will need at least two more sets of labs to determine if he can stay on one shot a week.  It continues to give us hope that as Keegan eats more and gets better nutrition, he may not need the shots anymore.  His hematologist has set the bar of what's acceptable fairly low.  We're not expecting he'll be able to get to a "normal" level with one shot or no shots for that matter, but as long as he doesn't completely crater, we'll be ok with it.

Tomorrow we'll increase his daily rate of tube feeds again, and that should leave him with less than 3.5 hours of tube feeds during the day!  He's been having some pretty good feeding moments lately, and although the road ahead is still long, I'm hoping that his recent weight gain will help us get off the daytime tube feeds even faster!

Good news! - One of my best friends, Marci, had her first little baby boy on Thursday.  Welcome, little Noah!  I got to meet him today, and he's just a precious little bundle of boy!  Mama and baby are doing well, and we are so happy for Marci & Todd. 
Bad news! - Carter is still inpatient in Boston.  He's had some scary ups and downs the last week especially, but if his liver numbers go down next week, they should be able to be discharged locally and hopefully on their way home soon after that.  Please continue to keep them in your prayers.  The journey has been long and hard, but they're hoping to come home well and stay there!

Thank you once again for all your support and prayers.  I know it sounds like a broken record, but we truly can't tell you how much they are appreciated.  You give us strength to continue each day, and we are so blessed.  Thank you.

Sunday, March 21, 2010

Big Boy Room - Phase I

Well, Keegan's "big boy room" is coming along.  Two weeks ago, Gray and his parents removed all the guest room furnishings and painted the room two shades of blue, a pale blue on the walls and brighter blue on the ceiling.  Last weekend, I put his bed and nightstand together.  This weekend, we installed a black-out shade behind the shutters for naptime (the room faces the front of our house with no shade, whereas his nursery has a tiny window completely shaded by cedar trees), found a boxspring for the bed (LONG, frustrating story), and finished the guardrail.  But the most fun was had installing the new "road" on Keegan's wall!  See!  (Once again, sorry for the phone pictures...still no camera.)

This was fairly easy and so fun to do!  It was a great way to take up a big wall safely above his bed.

It's all vinyl decals, like you put on your car!

Keegan still LOVES cars, and he seemed to get a kick out his new road.

The guardrail works, Big Daddy!  ;)

We scattered a few extra cars around the room - along the window and door frames and on the mirror above his dresser.  His bedding should be finished in a week or so and will be so cute.  He seems to like going in the room now...let's hope that doesn't change!  We'll see what fun things we can get done next weekend, and we'll post a "Phase II" pic.  Our goal is still to start napping in the new room by the end of the month.  I think we're on target so far!  Please leave a comment, and let us know what you think of Keegan's new room so far!

Tomorrow is cardiac clinic - a full day of heart fun!  Better get to bed since we have to be off super early.  Since it SNOWED 7 INCHES in Plano today (yeah, you read that right!  On the first day of spring!), I'm sure traffic will be crazy.  We'll update again tomorrow with news from clinic.  Prayers would be greatly appreciated for it to be nothing but good news.  Thanks so much. 

Friday, March 19, 2010

Smart Kid

I'm filing this one as evidence of Keegan's amazing intelligence, although I guess it could also fall under "sad but true."  The other day I was vacuuming the house, and Keegan was following me around saying "uh oh".  I was getting a bit annoyed, as he was stepping in every area I had just covered, and instead of stopping what I was doing, I kept repeating "what's 'uh oh', baby?"  Finally, I stopped the vacuum, and before "just show Mama what's 'uh oh'" could even escape my lips, I heard his feeding pump alarming!!  Too smart!  The line had become kinked, and he wasn't getting any formula.  I cleared the alarm, and he went back to playing while I finished my chores.  Do I have an amazing kiddo, or what? 

It makes my heart a little sad that he even knows what that alarm means, but at the same time, he's so accustomed to it that it doesn't even phase him.  He doesn't get upset or sad, just asks for help and goes about his way happily.  It just reminds me that getting worked up about how different his life is and the "unfairness of it all" is simply an attitude choice that I am making.  This may change as he gets older, but for now, he's completely ok with his situation and is genuinely happy!  If I only make the choice to be more like him (and more like HIM for that matter, focusing on my blessings), my life would be much easier.

Today officially marks 6 MONTHS since Keegan's been inpatient!!  I won't lie and say that I'm not waiting for the bottom to drop out at any moment, BUT again, I must choose to focus on what an amazing 6 months it has been.  I'm not given any guarantees about what will or what won't happen for the next days, weeks, months, or years.  I'm going to take a lesson from my 2 year old and try to make whatever it is we are given the best it can be.  It's a challenge for sure, but I think he's worth it! 

Now, on a completely different note...If you are the parent of a CHD kid, please take THIS survey!!  It is being conducted by the California Heart Connection to collect information from parents on their experiences with the diagnosis and initial treatment of a child's congenital heart defect.  This research will be shared with physicians and hospitals to help better prepare and inform parents with their childrens' cardiac diagnoses.  As an advocate of patient and family centered care in hospitals, I am so excited that interest in supporting parents and physicians in these situations is growing.  So please, if you have been touched by CHD and haven't participated yet, please take 20 minutes to complete the survey!  (PSA finished now...thanks!)  =)

And no, our camera is not fixed yet.  But here's an iPhone pic to tide ya over!  Keegan has no desire to sit still for a photo these days.  Hence the attitude shown below!  We took him to the Arboretum to enjoy the fresh air with Alex and Mamie while Daddy and BD were out of town for business.  He is ready for swimming weather because we had to keep him from diving right in every single fountain on the premises!  Come on, warm spring weather!!

Saturday, March 13, 2010

Tag

Well, I suppose this makes this a real blog and not another health journal for Keegan!  My friend, Abby, "tagged" me in a photo game. 

Here are the rules:
1. Open your first photo folder on your computer.
2. Scroll to the 10th picture.
3. Post that picture and the story behind it.
4. Tag 5 or more people.  (I don't know a lot of people who blog, and Abby took most of them!  So, I tag Stephanie McP, Ashley F, Chelle C, Lisa M, and Stephanie E...no pressure to actually participate though, y'all.)




Like just about everyone that I've seen respond to this, my photo folders are set up a bit differently, and the first folder under Pictures just had more folders in it.  So, I this is the 10th picture in the first folder (2007) in the first folder (Keegan) in Pictures.  Lost ya, yet?  It's neither here nor there really.  I'm supposed to explain the story of the picture, not where I found it.  Focus, Maddie!  Just as a warning, the story behind the picture is a bit more serious and reflective than the point of this game was....

This picture was taken sometime in the afternoon of September 12, 2007, the day Keegan was born.  I was still in the hospital myself, but it appears that Father Postell is performing a baptism and anointing of the sick on Keegan in the CVICU at Children's.  Gray is in blue at the front left, and my dad (Big Daddy) is in red in the back.  I don't think Last Rites were performed until he was taken in for his transplant surgery.  Although if you were to ask any doctor or nurse on staff that day, they would probably have advised them to be performed.  Funny how time loosens people's tounges, as I've had no less than four people lately that were there that day tell me what a miracle it was that Keegan actually survived to his first surgery the next morning.  Sure doesn't lessen the blow though. 

One of those people, a surgeon, is one of the most amazing Christians I've ever known.  He is not Catholic, but he made a keen observation once when I off-handedly commented that giving Keegan the Last Rites before his transplant was probably a mistake - that it was actually the beginning of Keegan's life!  He said that I was right and wrong from a medical standpoint.  It was a new life, but in order to start that life, a part of Keegan actually died on that table - the moment they took out his own damaged and useless heart to prepare him for the miracle of a new, strong one filled with love.  Did you catch the gravity of that??  For the briefest moment, no heart beat in his chest, not even one on life support.  My son, my baby, was gone for that moment, and through nothing but the love of another grieving family and the skill of a team of amazing surgeons, he came back to me.

I don't know if I ever shared that conversation with anyone until now.  I struck me in a way that I guess I buried it deep down; although I think about it every single day.  I'm actually glad I was given this opportunity to share it with you.  Relieves a bit of the burden in a way.  The reality of that fact will never go away, and it daily brings up a wave of hurt and grief, no matter how brief, that rocks me to my core.  Even more so as I prepare for our new baby, a healthy baby girl.  But I choose to focus on God's hand in this story.  I can't think of a better time to share it than with a picture of Keegan's baptism.  The act in which we die to our sins and are reborn into the possiblity of eternal life with the Father!  An act that can only be performed through Him and by His grace.  A reflection of Christ's passion and sacrifice for us that we remember now during Lent as we prepare for his resurrection at Easter. 

Surely this is not the way this game was meant to go.  I do kind of wish I had a fun vacation picture to share now!  But for what it's worth, I hope that it heals me in a way that it might touch just one person who reads it. 


"We were therefore buried with Him through baptism into death in order that,
just as Christ was raised from the dead through the glory of the Father,
we too may have new life."  Romans 6:4

Friday, March 12, 2010

Aud-ee

It was only a matter of time.  Keegan gave his little sister her first nickname yesterday during speech therapy.  He was playing with a little house, and we were identifying all the family members (Daddy, Mama, Rusty, etc).  We "named" the little baby Audrey, and after being prompted a few times, Keegan blurted out "Aud-ee"!  Oh my gosh, y'all!  I just about lost it!  He still uses very, very few words spontaneously, but his vocabulary of prompted words is slowly growing.  Anything with two syllables is always either Mama, Daddy, or Dee Dee first; then after a bit of prompting, we can get something closer to the real word.  I was sure that when Gray got home last night, I'd never get Keegan to say Audrey again, but he did!  He seems to like saying it too!  The other newer words we've heard lately are "beamie" (what we call his blanket), "puppy", "open", "off", "up", and "shoes".  He still is showing difficulties with the letter P, but we're so excited for his progress! 

And to answer your next question...no, he still has no idea that Audrey is his baby sister, that she's "in Mama's tummy" (have really avoided that one as it seems like a confusing concept at this point for him), or that he's even going to have a baby living in this house with him.  So far, he's completely ignored the other babies he's been around lately.  If you ask him if he's going to be a big brother, you will get a "yes" or "no" depending on the minute you ask it, so I'm not sure he understands.  There have been a few times we've asked  if he is going to have a baby sister, and he says "no".  Then you ask if he's going to have a baby brother, and he says "yes".  Sorry, buddy!  Don't think you really have a choice in the matter.  Gray and his parents painted Keegan's "big boy" room this past weekend, and it looks great!  He seems to like going in there now, as it's mostly empty.  He particularly likes to get the baby bathtub out of the closet and play in it!  Once I have a camera again, I'll be sure to post work-in-progress pics of his room.

I figured this would be a good time to update about the baby and how things are going.  I also promised an explanation of the name a long time ago, and now that we've agreed on it for sure, here goes.  Audrey has been my "girl name" since I was in middle school.  Yes, it is after Audrey Hepburn, an amazing woman of strength, grace, nobility, and compassion.  If you don't know much about her, I assure you that it's worth the read.  Audrey, meaning "noble strength", was a fitting name of this daughter of a Belgian barroness (Hepburn was a stage name), who fled Belgium for France during World War II and risked her life as a young teen aiding the resistance during the war.  Audrey was a ballerina before being discovered by a casting director for the broadway play GiGi.  In my much younger and thinner days as a dancer, my family once commented that I looked a bit like her, so my dad started buying me her films on VHS one by one.  He started with My Fair Lady, and I was hooked.  To this day, it's one of my favorite movies.  I still have every one of her movies that was available on tape, even though I have no VCR on which to play them!  So, that's where the baby's first name came from, and her middle name, Moyer, is another last name from my mom's side that has been passed down through the years.  It was my middle name too. 

We will have our last sonogram at the high-risk OB at the end of April (32 weeks).  I have been doing fairly well, except with some struggles with anemia.  I'm down to three months left, which seems so far and yet so right around the corner too!  If she doesn't come early, our current plan is to induce on June 14 so that we can make sure Keegan has proper nursing care scheduled.  There just seems like so much to cram into that amount of time.  I remember that feeling with Keegan, but this time, it seems more pronounced.  It's still so hard to shake the feeling that something will go wrong.  I'm trying to lay those worries down and take comfort that God is in control.  Still, when it comes to your babies, it can be so very difficult. 

We just can't tell you how much your prayers and well wishes mean to all of us.  I hope to have more pictures soon!  Get out and enjoy the beautiful spring weather while you can!  This is Texas afterall!  ;)

Wednesday, March 3, 2010

If it ain't broke...

Well, it is the week of broken appliances in the Harrison household.  I'd been having problems taking pictures with the nice camera Gray got for his birthday last year (as evidenced by the last photo below).  Now, I'm no photography genius, so I assumed it was user error.  I assumed wrong.  Somehow someway, the flash casing and bulb have cracked.  Hopefully, we will be able to fix it without too much trouble, but we will be short on pictures for a bit.

To add insult to injury, our beloved "grind-n-brew" coffeemaker is also broken.  I try to limit my coffee consumption reasonably while pregnant, but Saturday and Sunday mornings, I still enjoy a nice cup (or two, but who's counting?)  Or rather enjoyed.  All work and no coffee makes Mama a very dull gal.  Luckily, we pulled out the manual to find the thing actually has a 3-year warranty and is only 2 years old!  But it might still take up to 2 weeks for the replacement part to arrive.  I don't think the part is the problem, in my uber-engineering-oriented mind, but we shall see when it arrives.  The second lucky thing is that my dad has an extra coffeemaker at the office for temporary use, so this weekend will hopefully go a little smoother! 

We picked out paint colors for the kids' rooms this weekend.  We'll be painting the nursery lavender to match the baby's purple, green, and brown bedding.  This weekend, we're hoping to start on Keegan's new "big boy" room (i.e. the former guest room), which will be two shades of blue to go with his new bedding that is primary colors.  We didn't paint the nursery for Keegan because the tan buttery pecan color that literally covers every inch of our house was a color in his bedding.  Paint makes me very nervous, so we'll see how this goes!  We have the design of both rooms planned out in our heads.  I just hope they turn out the way we think they will.  We're aiming to have Keegan's room done so we can start transitioning him over by the beginning of April.  I'm starting to get nervous about switching Keegan into a twin bed and new room.  Any helpful hints would be greatly appreciated by those of you who have been there!

We hope you're out enjoying the lovely weather this week!  If you wouldn't mind keeping two of our little friends in your prayers, we'd appreciate it - little Jillian and Carter.  Jillian is our friend Delaney's little girl.  She was premature and is fighting hard.  She's off the ventilator, but she still has a long fight ahead of her.  Carter has gone back to Boston with his parents for treatment, and it is taking longer than they initially thought.  He is also having trouble not processing his feeds, and they need to find a cause/treatment before addressing his blood problems that brought him there in the first place.  Both families could use your prayers and support.  Thanks so much!