Thursday, April 29, 2010

Catchin' up from the week

It hasn't been a particularly exciting week per se around here, but I wanted to update about a few things.

First, thank you so much for the prayers for our last sonogram that was Monday.  She looks just perfect still.  All organs seem to be in good working order.  The only bad news really is that she's breach.  The doctors said that if she doesn't turn in the next week or maybe two, the odds that she will are pretty slim.  At my follow-up appointment with my OB on Tuesday, she said she would bet confidently that the baby won't flip, since she's been in this exact position for the last two weeks.  Her head is smack dab up in the base of my rib cage, so it would take quite a bit of effort and force to turn at this point.  We will see, but it certainly looks like we're headed for a c-section this time.  The perinatologist's assistant commented that "if a c-section is the only thing that goes wrong, that's not bad at all."  I know it's not that big of a deal in the long run, but we were really hoping to avoid ALL operating rooms this time around! 

Second, you may have seen the Twitter update that Keegan had a really rough night on Tuesday.  In fact, it was an exact replay of the night he was admitted last September.  We think it was a minor, yet very painful, form of intestinal roll-over that Keegan used to get, called an intussusception.  He would scream in pain for 5 to 10 minutes or more before passing out for the next 45 minutes.  This went on from about 9:30pm until 4am.  It tore us apart to wtach him be in pain, but we knew what would happen if we went to the ER ... he would be admitted and given morphine, which woudl shut down his good kidney.  He'd end up back on medication to stimulate his kidney, which we just stopped about a month ago, and we'd spend the next three days inpatient waiting for him to stabilize again.  He was set for labs Wednesday morning anyway, so we agreed that if he was still in pain by 5am, we'd just go to the ER.  Fortunately, that didn't happen.  He's spent the last few days trying to catch up on sleep and being rather lethargic, but he seems to be doing ok.  I just wish we knew exactly what was happening during these episodes so that we could better help him through it.

We want to congratulate two of our little friends on some BIG accomplishments.  Carter is home from Boston, and we couldn't be happier for his family.  It was a long journey, but we are praying he is home for a long time!  Also, our friend, Nate, had his trach removed on Tuesday after six long years!!  He's home and doing well.  What an amazing accomplishment for him!  We can't wait to see how you continue to grow stronger and amaze your parents and brothers every single day, Mr. Nate!

Lastly, one of my two best friends from law school, Courtney, is getting married this weekend to another of our law school friends, J.W.  Gray and I are so upset we could not travel to attend the wedding, especially since we missed my other best Vandy friend, Kathryn's, wedding last summer.  I know the wedding will be amazing and that Court will be a gorgeous bride.  Courtney and J.W. - we wish you a beautiful and blessed journey in your new life together.  We love you very much and can't wait to see you later this summer! 

Lainey's Birthday Party

Keegan went to his "girlfriend", Lainey's, 2nd birthday party last weekend.  She had a bounce house party, and all the kids had the best time!  I was hoping either the bounce house or Lainey's new little trampoline would inspire some new jumping ability in Keegan, but alas, it did not.  To no one's surprise, Keegan was more interested in sitting in Lainey's Little Tikes truck than doing anything else!

A little tentative about getting in the bounce house the first time

"Hey, this is pretty fun!"

Bouncing with Nora, Gage, and Ainsley

Getting a ride from Daddy in Lainey's truck

The birthday girl about to enjoy some yummy cookie cake 

You know you have feeding issues when this is the look you get when asked if you want to eat some cookie cake!

I hope that one day I'm blessed enough to see this exact exasperated look from a 16-year-old Keegan as he's about to drive off in his first truck.

And that maybe I'll also get to see this scene with two teenage best friends driving away!

Or even this one!  Although hopefully Gage wouldn't be riding in the back if it were a real truck! ;)

Thanks for inviting us to your very special birthday, Miss Lainey!  We had a great time!!

Sunday, April 25, 2010

When Mama's away...

Daddy and Keegan will break all the rules and have LOTS of fun doing it, evidently!

This past week, I was privileged to spend three and a half days at a conference and intensive training seminar held by the Institute for Family-Centered Care as a family advisor for Children's Medical Center.  Luckily, it was held here in Dallas, so I didn't have to travel or spend one full day without seeing my Bug!  I was asked to go to the seminar as part of a team from the Heart Center.  I can't tell you how encouraging it was to see some of the positive change that is happening across the country (and world, for that matter) that truly makes patients and their families true partners with healthcare personnel in their care.  We are off to a great start at Children's, but we have SO much to do!  The highlight of the week definitely came Monday morning, when I was asked to participate in a panel discussion before the entire conference of two family members (myself and Avery's mom, Angie) and two patients.  I was able to share Keegan's journey with them - the good and the bad - and inspire even more change.  It was a long week for me, for sure, but equally transformative.

Gray and Keegan had quite the week too!  Very important things, like...
Putting practice with Big Daddy...




Learning how to rake the sand trap after your swing...


Or using the whole body approach instead of a rake...

Throwing balls on the chipping green...

And more golf cart driving practice...

Visiting Oma at Southwest Airlines headquarters (the red armband and ankle bracelet are from labs & his breathing treatment at the hospital that morning)...

Watching planes take off at Love Field...

Sitting in the bluebonnets while visiting Great-Granny...


Getting lots and lots of lovin' from family....

And being so thankful for three and half days of fun times with Daddy!!

(Oh, and in case you were itching for a medical update on Keegan, his weight was stable this week, so he earned at least a few more weeks off daytime tube feeds!  It has been such a change for me not having to deal with the tube or anything during the day but so very nice!  I'm looking forward to Keegan continuing to progress in eating orally and staying off the daytime tube feeds for good.  His labs also looked good this week, and I think his hematologist is right - the more his intestines heal, the more real food he eats, the better he absorbs what he eats, the better his bone marrow will perform!  I guess nutirition really is everything!  His immunosuppressant levels were off yet again this week, so he will have another set of labs next week.  Nothing we can't handle though.  The only bad thing right now is that his allergies have kicked back up (who's haven't though?).  He's runny and congested, and it's hard to keep him inside with the pretty weather we've been having.  We are praying this bout is short-lived and that he is back to his energetic, happy self soon.)

Lastly, we have our last sonogram at the high-risk OB tomorrow to get a good luck at baby Audrey and make sure she's doing well.  We're sure things will be great, but we'd appreciate your prayers for our little girl nonetheless.  Thanks so much.

Friday, April 23, 2010

National Organ Donation Awareness Month

So, I'm a little late in mentioning this (23 days late to be precise), but there's still 7 more days of National Organ Donation Awareness Month.  I've posted and posted some more about the statistics of organ donation in America over the last two and half years.  How many people are waiting for that life-saving gift... how many people can be possibly saved by one person's donation...how many people have or have not registered as organ donors, yet alone informed their families of their choice...the possibility of living organ and tissue donation....the number of people who may or may not have even taken the time to think "what would I do if...?"  I think anyone following Keegan's journey for any amount of time can spout these off as well as I can. 

But have you done it? 

Have YOU registered yet?  You don't have to wait until your driver's license is up for renewal!  You don't even have to take more than 5 minutes to register.  Click the Donate Life button at the top right of the page or go to http://donatelife.net/ now.  Click on the "commit to donation" tab, which will allow you to click on your state's official organ donation registry.  Your choice will be registered with the state and national registries, and this information will be available to healthcare personnel no matter what your license or family says.  If you choose to register as an organ donor, healthcare personnel can make the determination at the time what organs and/or tissue can be donated based on your health, age, etc.  The Donate Life America website has plenty of information about what organ donation means, and you can always email us to find out more or if you have questions.  The Southwest Transplant Alliance's website also is a great resource should you have questions!

I'm not going to throw any more statistics at you today.  But I will leave you with these precious angels, who are much more convincing than numbers....
Because of this angel, Johnston, and his parents' loving choice....


Keegan is alive, happy, and WELL today.

And because of similar choices made by other families, so is this little boy..

Carter Cates - Multivisceral transplant, May 2008


Nate Arnold - Double Lung transplant, September 2009



Summer Simons - Bone Marrow Transplant, January 2008

Andrew Madden (with Keegan, 5/24/08) - Heart transplant, October 2007


Shelby Hedgepath (top) and Natalie (bottom left) - Heart transplant, December 2007 & August 2007
Each child in this photograph is a blessed heart transplant recipient!

And this most beautiful girl was given two more years to touch our lives...

Angel Hannah Collie  - Heart Transplant, August 2007

No other words are needed.  Register yourself, and spread the word to encourage others to do the same.  So that this time next year, more people can say they are alive because of the courageous and loving choice of one person to commit to organ donation.  And if you are already are registered or register this month because of any one of these amazing kids, please leave us a comment on this post to let us know.  Thank you is so much more than we can say...

Thursday, April 15, 2010

GI Update

Ok, so GI update is just an understatement at this point!  Something clicked in this child's head on Sunday afternoon, and he decided eating wasn't all that bad.  The same child who had never fully finished even a piece of crust of pizza (he would take off any cheese and scrape the doughy part off before handing the rest back to you...) ate a whole (albeit small) piece of pizza with cheese, crust, sauce, and spinach!  So that day, we decided to hold his feeds at naptime, and he ate a few pieces of pasta from the casserole at dinner that night too.  Since then, some days/meals haven't been anything to write home about, but then there have been some like this...
Chik-fil-a is awesome!!

(Still no camera, maybe by next week...sorry for more phone pics.)  I could eat Chik-fil-a every day of my life and not get tired of it, and I have been waiting on pins and needles for the day Keegan would share my love!  Wednesday, we picked up his first kids' meal EVER for lunch and brought it home (I haven't quite mustered the courage to expose him to the actual restaurant/playscape yet!).  He ate two of the four chicken nuggets (smaller than that place that starts with an "M"), and probably 6 french fries.  We attempted some halved grapes with that to no avail, but it was a pretty darn good start! 

All that being said, Keegan had a GI appointment this morning, and we decided that we would keep up the trial run of no daytime feeds until today to see what his weight was.  He was down a bit but not too much.  He will get a weight again next week when he goes in for his monthly labs and breathing treatment.  The GI doctor told us that if his weight stayed stable next week, we could continue on without the daytime feeds at all!!  If his weight is down next week, we'll check again the week after and reconsider.  His oral intake (real foods he's eating by mouth) probably isn't too much different from a lot of 2-year-olds, but he doesn't necessarily benefit/absorb those same foods like a normal toddler either.  Needless to say, the doctors are definitely behind us and rooting for Keegan to stay off the day feeds too.

I can't even begin to describe the awe I have at how much progress Keegan has made in the last three weeks alone!  Had you told me a month ago that he would be on night tube feeds only by this point, I would have laughed.  Keegan (and more importantly the amazing God watching over him!) continues to surprise me every single day.  This change in feeding came somewhat gradually, but it really was like a little lightbulb just went on his head last weekend and voila!  I'm now waiting anxiously for the day the speaking lightbulb goes on! 

In other news, the baby's room is painted, and we picked up the bedding earlier in the week.  I hope to have pictures by the weekend for you.  I think it looks pretty darn good!  Getting the room set up has probably brought Keegan the closest he's ever been to realizing that a baby's coming to live with him.  You can tell he is wondering why his old room is looking so different, and we keep referring to it as "baby Audrey's room".  Not sure it will help too much overall, but it's a start.  Today, he woke from his nap early, and my friend, Marci, was here with her three-week-old baby, Noah.  I was holding Noah when I turned Keegan's light on, and he gave me a pretty darn pitiful look when he realized I couldn't pick him straight up out of his bed!  The first sign of budding sibling rivalry?  We'll see!

Speaking of little Noah, I haven't been able to share any pictures due to not having my camera quite fixed yet, but I did find this one from the day after he was born on my phone.  Little Noah and his parents are doing well, and we're so excited for them!  Here he is!

I know this has been a long post, but I would like to ask one more thing.  Our friend, Carter, is finally on his way home from Boston and nearly three months of being inpatient.  They are driving and hoping to be home this weekend.  Will you join us in praying for a safe trip for him and his parents?  I know they'd appreciate it.  Thank you so much!!

Wednesday, April 7, 2010

Big Boy Room - Phase II ...and Big News!

Phase II can officially be dubbed "the Transition"!  We were initially going to start with just naps in Keegan's new "big boy" room, but after the first nap, we realized it was probably better to quit the crib cold turkey than drag it out.  Tonight is the third night in the big bed.  The first night went really well, but he was up a lot last night.  Not upset or talking, just awake.  He said "uh oh" one time, so I went to check on him.  No discernable problems, but I sure don't like being greeted with a "hi Mama" at 3am!  He doesn't seem to have any desire to get out of bed on his own, which is good thus far.  The hardest part is breaking him of the habit of rocking to sleep - a bad hospital habit.  It's harder to just let him go to sleep on his own in case he pulls on his tube.  But overall, so far, so good!

We were so blessed to be given Keegan's new bedding from Miss Deb and the girls at Bedazzled in Plano.  They did such an amazing job, and we are so humbled that they would go out of their way to make sure Keegan's new room was perfect!!  Thank you, thank you, thank you, Deb!!  You're amazing!  There are still a few things that we're waiting on, but we think it's looking pretty good!
Keegan's big bed.  He's SO tiny in it! 

Isn't the bedding so cute?  A friend of Aunt Alex's hand-embroidered the "bed bug" pillow for us.  It was the pillow we used in his crib the last month or two to get him used to using one.

The unfinished corner.  Mamie is having a little chair that was Mama's reupholstered to match the bedding, and it will go somewhere along here.

His dresser...see the truck on the mirror?

The closet and Elmo...and do you spy a little Big Brother in the picture?

The comforter's surprise!  It's reversible!

And the other big news of the week?  Did you happen to notice that Keegan wasn't wearing his backpack with the formula pump in any of the pictures from Easter weekend?  Well, at the end of last week, Keegan's dietician and doctors agreed to let us take two more ounces off his daily volume of formula tube feeds.  With Saturday's planned hourly rate increase, that put his daytime feeds at 2.3 hours - just about 15 minutes more than naptime.  SOOO...Keegan is no longer on his feeds during waking hours!!  No more pack!!  He now gets his tube feeds during naptime and overnight only!!  It's still almost 13 hours of tube feeds per day, but at least he is no longer hauling that pack around.  One year and one week exactly wearing the pack.  Amazing!!  We certainly were surprised by how quickly he's progressed, but we're just so happy to see him running around without being tied to his pump.  The first day he seemed pretty confused about it, but by Monday, he could have cared less. 

Way to go, Bug!!  We couldn't be prouder of the big boy you're becoming.  You are going to be an awesome big brother! 

Sunday, April 4, 2010

Happy Easter!

It's Easter weekend, and we have officially declared the end of winter "lockdown"!  Keegan had a very full, very fun weekend.  Can you tell he's one of the happiest (and most blessed) 2-year-old's you've ever met?
Saturday we had an egg hunt at Mamie & BD's house. 

Found one!  Off to a good start...

Thanks for the lift, Aunt Alex!

Opening his eggs...

Look!  An Easter Hot Wheels car!  That Bunny sure knows what I like!

A rare photo of Keegan not in a full on sprint.  In fact, not long after this picture was taken, his momentum overcame his feet, and Keegan did a full faceplant on the sidewalk.  Nothing says "Easter" like a fat lip and blood splattered on your new outfit!  But, he shook it off and went on, ready for a full Easter Sunday at home!

We started the day off with the super early Mass to avoid the bigger crowds (yeah, right).  Besides one attempt at going to church late last summer (my nerves couldn't take the germ exposure), this was Keegan's first time back at church since last Easter Sunday in Boston.  You couldn't tell by the pictures below that this time last year, he'd been inpatient for almost 10 months!
All spiffed up and ready for Church.  He did amazingly well, and we were so happy that we got him in and out with minimal exposure to other people.  Father Postell stopped during the baptismal renewal to hi-five Keegan!  Heehee!

Seeing what the Easter Bunny brought him. 

Speaking of that Bunny, he's awfully busy this year.  He showed up at the country club during brunch with Big Daddy, Mamie, Aunt Alex, Oma, Pops, Great-Granny, and Miss Denise.  Keegan was a little in awe at first, but then...

The Bunny brought the balloons, and he was all smiles!

We finished off brunch with a quick golf cart drive.

Think these two boys are related at all?

The best family photo we could muster.  Why do we even try?

We spent the rest of the afternoon working on Phase II of Keegan's "big boy" room.  The bedding is here and is absolutely awesome!!  (Thank you, Miss Deb!)  We'll post pictures this week of the room.  It's almost there, and his nursery is pretty deconstructed.  We're planning to start napping in the new room this week, so please, please, please say a few prayers and cross a few fingers for a smooth transition!  We'd really appreciate it!  I think that Gray and his parents might paint the nursery this weekend, and the baby's bedding should be ready soon.  Less than 10 weeks to finish this up!

We hope that each of you had a wonderful, renewing Easter.  Father reminded us this morning that Easter truly was about one thing - forgiveness.  Being a mom has completely opened my eyes to the concept of God's forgiveness of our sins.  I honestly did not understand the breadth and depth of His love and capacity of His mercy until I became a mom.  No matter what Keegan does, my love for him is so great that I cannot imagine witholding my forgiveness should he ask or even if he didn't.  I understand why God the Father would sacrifice his Son because He loved us so much He couldn't stand not to forgive our sins.  Before I became a mother, that concept was too much for me to understand.  I pray for that realization for each of you this Easter.  Rejoice!  He is Risen!