Tuesday, August 31, 2010

First Day of School

Keegan started off the day not too thrilled to be going to school.  I think it had more to do with the fact that he wanted to watch another episode of Curious George than get in the car!  He also is struggling with his allergies (darn ragweed!), and I don't think he felt his best.

Daddy told him he needed to be a "big boy" and go to school.  This is his "how big are you?" stance from when he gets weighed at the hospital.  Gray also kept teasing him about his "clodhoppers" (his big ol' shoes he had to wear for the playground/gym).  A boy just can't catch a break, I guess!

Starting to get a little more excited about it...

He still wasn't sure when we walked in, but as a few kids started coming in, he got a little bit more excited.  I have to say, his expression reflects just about how I felt dropping him off...apprehensive but curious as to how he would do.

Still working up some courage with Mama before going into the room...

Once he saw the toys inside, he was good to go.  I think it helped being the first one in the room.  So ironic that play food is what he went for first!  If that hamburger had been real, you can be sure he would have gotten as far away as possible from it!! 

Overall, the teachers said he did very well.  They said they weren't sure what to expect from him (neither did we!), but he listened to and followed instructions well.  He didn't throw as many fits as some of the other kids did (whew!), and he didn't cry.  Because he hasn't been able to play with other kids his age quite so much, he isn't sure what to do when other kids take his things.  He is more than happy to share, but when he doesn't get it back, he sometimes takes it a bit too personally.  The teachers said that he was "enthralled" by music class.  He didn't get up to dance or sing with the other kids, but he seemed really happy in class.  The biggest problem was eating (surprise!).  Today was a short day, so they only had a snack.  The kids are expected to sit with the teachers at their little table, eat their snack, drink their juice from a dixie cup, and wipe their own hands with a napkin.  And Keegan does ....none of that.  They said he stayed at the table, but he did not eat or drink anything.  To keep him from getting dehydrated, they asked me to bring his straw sippy from home on Thursday.  I'm sure that will just yield a roomful of other little ones wanting their sippy cups, but I guess that will be the teachers' problem! 

I was able to keep it all together today, and I only called to check on him once!  I had to take a moment when I got back to car.  Watching all the other moms and dads walk in and out, I wondered what it was like to have your biggest worry be if your child would share toys or have an accident from not being fully potty-trained.  The fact of the matter is though that even if that is their biggest fear, it IS just that!  We are all entitled to those fears and worries.  I'm so grateful that he looked just like any other little boy walking into his first day of school.  He may carry a much bigger burden on his shoulders than any other little boy there, but he does it with a smile on his face and in his heart.  Today, Keegan didn't know that he was any different than any other boy in school.  I cherish that fact, and I will hold on to and find comfort in that fact for as long as I can.

Congratulations on your first day of school, Buggy!  Mama & Daddy love you so much and are so proud of you!  We're looking forward to every single day of this school year, and we hope you are too! 

Chatty Cathy



Audrey is a chatty little thing.  Guess that's another difference between girls and boys!  Here she is "talking" to her Daddy. 

Just a note - if you usually read the blog posts from your email, you must actually go to the blog web address to see the video.  Click on the blog title ("Miracle of the Heart") at the top of the email to go to the website; then you can click on the video itself to play!  On the same note, if you ever want to leave us a comment on a particular post, you can do so by also going to the actual website, then click the "comment" link at the bottom of the post for the comment form!  Thanks!

Sunday, August 29, 2010

A Leap of Faith

I'm tired lately.  Well of course, you say?  I have two kids under the age of three...one of whom is Keegan, who makes up for a whole houseful in and of himself.  If Audrey's not up in the middle of the night, Keegan is.  He has stopped napping almost completely, and the days he does nap, it's (1) short, (2) Audrey will surely not be asleep at the same time, and (3) will cause him to be up until 9pm at a minimum.  Almost every night or morning for the last two weeks, Keegan has had some kind of tube or diaper leak that requires washing him and his pjs and sheets.  Frankly, it started wearing on me.  I hate that I can't just put my child to sleep at night without worrying how many times I'm going to be up to untangle him, change him/sheets, silence pump alarms, etc.  When you're exhausted, you don't always think rationally, and things wear on you much quicker than they should.  I started to get overwhelmed by Keegan's therapy and doctor appointments, his inability to communicate, his feeding problems, and his labs starting to take a turn for the worse.  I started to worry about the upcoming cold and flu season and how to handle "lockdown" with a second child.  One who was starting to get a little frustrated with being awakened earlier than she wanted to in the morning to go to Keegan's appointments.  Being up all night just gives you a lot of time to worry about life - the way it is and the way it should be.

These are all things you think I would be used to by now.  They are the things that, up until now, I have accepted as the way it is.  In our little bubble of a world, these things are our normal, and I'm usually ok with it.  But then, the way things should be slaps you in the face...hard.

Because Keegan is starting school this week.  Yep, at the urging of the transplant team, he'll start Mother's Day Out at a nearby church two days a week on Tuesday.  I hate to admit it, but I'm absolutely, positively terrified about it.

I know beyond a shadow of a doubt that he will have the time of his little life there.  I know he'll be excited to be in class with his friends, Lainey, Gage, & Ainsley.  I know he'll grow up before my eyes, and I hope that his speech and eating will take off because of it.  I know these are the reasons we were told to enroll him.  I'm certainly grateful for a transplant team that stays positive and has realistic goals for him.  I can't wait to see all the artwork he'll bring home, to read the daily reports of the fun things he did, to see him shine to his full potential.  We are blessed to have a school with teachers and administrators willing to take on the responsibility and risk of caring for Keegan and other parents in his class that already care so much about him. 

But I'm paralyzed by the fear that he'll end up inpatient way too much when we are so close to a year of being at home.  I'm afraid that the teachers will get frustrated that his communication skills are so far behind his peers, that he's the only one in his class that hasn't even thought about potty training (you try talking potty with a kid pumped full of formula all night and who has GI problems, for lack of a more p.c. term).  I'm nervous about possibly having to ask every parent in his class to please choose flu shots instead of the nasal mist that contains live virus.  We have spent three years shielding him from others to keep him well, and here we are, sending him to the front lines of germ warfare with no armor whatsoever. 

It's not fair that we have to worry about these things.  It's not fair that the choice to send my son to school was not made because he wanted to or that he was old enough.  No, it was made as a "quality of life" issue.  I shouldn't have to think that this is something he needs to do because if he were gone tomorrow or next week or next year, we wouldn't want to have not given him the experience of learning and playing with other children his age.  It's not fair that he'll miss the first full day at school for his annual cardiac work-up...because we need to cut his neck open and snake a line down to his heart for a biopsy to make sure his body isn't rejecting his beautiful heart.  It's not fair that every day when I drop him off, I'll have to drive away wondering if it'll all come crashing down today.  This should be fun and exciting, but instead, all I can think about is that it's just not fair.

But then I remember all the parents I know who would love to be the ones walking their child into school on Tuesday, no matter how unfair it is.  The ones who don't get to hug and kiss their child anymore and send them off to have fun, even if all they do is sit and worry about them.  The ones who would give anything to spend another night awake tending to their child.  And my worry seems petty.  I might not get to walk Keegan into school for as many years as I would want, but this week, I get to.  It will take a huge leap of faith to walk away and put my trust in Him.  But I will...because He has done wonderful things for us, and we couldn't be more grateful.

Sunday, August 22, 2010

Playing with Addie

While this little cutie, Jameson, is undergoing a bone marrow transplant back home in Cincinnati,
 we had the pleasure of playing with his big sister, Addie, her grandmother, and her aunt.

Keegan & Addie meeting for the first time.  They literally ran into each others' arms!  It was like they'd known each other forever...maybe she just saw the same fight in Keegan that her little brother is showing now.


They both love the water.

Playing with toys before lunch

Thanks for playing, Miss Addielou!  We had a great time meeting you and catching up with Mrs. Kathy & Kristen.  We're praying for you, Jameson, Amy, & Matt!  We can't wait until Jamo is good as new and can come join us for a swim.

Audrey's Baptism

We were blessed to have Father Postell baptize Audrey yesterday morning.  Audrey was a complete angel during the ceremony and reception afterward.  She certainly seems to be feeling better and adapting to a schedule, which has made her little personality just blossom. 




The "Miss A"s - Aunt Alex & Audrey




The Godparents - our beautiful friends, Todd & Marci Curry
We are so thankful that Audrey has such loving, amazing friends as her godparents.

The classic Big Daddy hold

Pops & Oma

Yummm....petit fours!

The amazing spread by Mamie...thank you for all your help to make the reception perfect!

Papaw & Audrey

Great-Grandpa & GG

This was the best moment of the whole day!  Noah, Todd & Marci's son, giving Audrey a big hug!  This one is definitely going in the rehearsal dinner slideshow.  ;)

Noah, Keegan, & Audrey


Oma & Mamie with Audrey

Keegan, holding court as usual!  With Poppy, Noah, Marci, Keva, BD, & Chum

Sunday, August 15, 2010

Fun with the iPhone



Thanks, Chelle, for turning Keegan onto Talking Tom.  Too funny!

Fancy pics

Gray has an app on his phone that makes pictures you take look like they're from an older camera.  Here are some fun pictures he took of the kids the last few days.







I took this one of Audrey at her 2-month doctor visit.  Just a regular iPhone pic, but cute nonetheless!

Wednesday, August 11, 2010

2-month Well Child

Audrey had her 2-month well child appointment with the pediatrician.  It's the first time I haven't laughed to myself as I walked in the door.  "Well child" was and is such a misnomer for Keegan.  We're blessed it's appropriate for her!  She got a resounding thumbs up from our precious pediatrician today.  She weighed 10lbs 3oz and measured 21 inches long, which puts her in the 27th and 9th percentiles, respectively.  Sorry, chica - you got your mama's height!  ;)  The doctor was amazed at her neck and trunk strength.  I wish I could take credit for that, but we have been putting her on her tummy from the get-go merely because she hated being on her back for the first month or so.  I guess it paid off!

Unfortunately, she was prescribed prevacid today because her reflux is so bad (which is incidently, why she probably hated being on her back for so long and earned her the nickname "Miss Fussbuckets").  Poor thing has been refluxing pure stomach acid, and the doctor even noted some irritation in her throat.  While I hate putting our healthy child on medication, we're hoping it will be only for the short term and will help her be more comfortable.  The other issue we had to address today was the rash/baby acne she has been battling for the last several weeks.  We're going to try a few different tactics, but if it doesn't go away by the three-month mark, the doctor said it may be a milk allergy and require a change in her formula.  Whatever it takes...I miss my sweet-cheeked little girl.

Audrey still adores her big brother, and I hope that this is just the beginning of a great relationship between the two of them.  She tracks him as he moves around the room, and he definitely makes her smile with his "where's Audrey?" routine.  He is a great big brother, and he can calm her down just by taking her little hand in his.  So cute.  I can only imagine what she's thinking when she sees him running around like a little tornado (like here, where he's dumped an entire 64-count box of crayons out and is coloring on the items in his doctor kit).  If she has half his energy when she's mobile, I will be in serious trouble!  Can you see Keegan's forehead in this picture?  Yeah, it is covered in a giant bruise and is twice it's normal size because he tripped and ran smack into the corner edge of a dresser at my parents' house...while airborne!  Seriously, can you imagine having two of them running around causing trouble?!  I have nightmares about it already.

On a sad but funy note...I had to include this picture.  This is when your medically dependent child knows too much.  Keegan loves to bring items up to you and have you name them for him.  Luckily, he's now started trying to say the word you tell him it is.  For instance, we have added some real life medical supplies to his play doctor kit.  While I was taking these pictures, he showed me this g-tube extension, and I said "tube", which he repeated.  He then pulled up his shirt and held it up to his button without prompting.  I had to shake my head - sad but still my cute little bug at the same time.

Saturday, August 7, 2010

Naptime


Keegan's first nap in his crib at 9 weeks old - November 17, 2007



Audrey's first nap in her crib at 6 weeks old - July 17, 2010

Cuties

Just some recent pics of our little cuties that we haven't had time to post lately.  Keegan had a much better day today, and we are encouraged.  Thank you so much for your prayers and support.  If you would, please keep our little friends Aaron, Avery, and Austin in your prayers.  They all are fighting so hard, and their families are weary.  We pray that the Lord's healing hand will extend over each of them and bring them each home soon.

Bathing beauty

Adoring her big brother

Bathtime buddies

If I'm not fussing, I'm a pretty happy girl!

Nobody can make me smile like Daddy!

Thursday, August 5, 2010

No News Is Ok News

First, let me say the two words I can't say nearly enough - thank you.  Wow, the outpouring of support, prayers, and love in the last few days has been so comforting.  It's nice to know that our friends and family are continuing to lift Keegan up in prayer after all this time.  Thank you also for your comforting words to Gray and me.  We trying our best, and sometimes it gets to us more than we'd like.

Keegan was already scheduled for his normal nephrology appointment this morning.  One of his kidneys is atrophied and has not had any noticeable growth at all.  He has been officially diagnosed with a "solitary kidney" or renal hypoplasia.  It's most likely a result of the renal failure he was in while on ECMO and immediately after his transplant.  The other kidney has been adequately picking up the slack since we got him off of IV nutrition, and there's no immediate problems with it.  We follow-up with nephrology every six months to continually monitor his function.  Unfortunately, his immunosuppression medication that keeps him from rejecting his heart can cause kidney toxicity.  Lucky, huh?  So, this is one more area that we wait and watch.  His nephrologist thought everything looked good on that end today.  He was slightly concerned about his blood pressure but planned to consult with cardiology.  All in all, we hope to not see him again until February!

After nephrology, Keegan had labs, an EKG, and an echo to see what, if anything, was causing his recent issues.  Have you ever heard a funny noise from your car engine and taken it to the shop, only to have them tell you they didn't hear anything or see anything wrong?  Well, I haven't, but that's exactly what happened with Keegan today.  At least nothing new to worry about.  To be honest, that's what I was expecting.  We went through this exact same thing for several months before he went into complete intestinal failure.  You can tell something isn't right, but you have nothing to show for it.  His energy came back up quite a bit today, but he still is not eating well and had some terrible GI issues.  We will continue to watch his blood pressure and heartrate at home and monitor his energy levels.  Waiting and watching.  Unfortunately, we know all too well that the signs of rejection can show up long before the tests can detect them.  It doesn't make the waiting an easier....at all.

Thanks again for the prayers and support.  I wish I had a better way to say how much you are appreciated.  We are so blessed by the good health Keegan has enjoyed for the last year and all the progress he has made.  I think that in a way, that makes it harder because you get used to everything being so stable.  Then the next time it hits, you not only feel robbed of your child's health but of that bit of normalcy that you'd become accustomed to.  I wish that I could say that one day we'll be able to sit back and say, "whew, that was tough, but it's over now."  No, we'll never be able to say that.  Keegan will never be able to say that.  He doesn't know any different now.  But one day, he will.  I fear most the day that he says he doesn't want to fight it anymore - when the worry I feel becomes his.  So, I'll wait and watch today and tomorrow, just like yesterday and the day before that, and I'll make sure that he gets every opportunity to smile and enjoy it.  And I'll pray that my fears never become reality, and that if they do, we will be ready, strengthened by our friends, family, and the grace and healing hand of the only One who can lighten our burden.

Monday, August 2, 2010

Waiting

You may have seen my Twitter/FB post earlier today that we were worried about some troubling symptoms Keegan has been having lately.  Thank you so much for your prayers about it today.  They really mean so much more than we can say.  We take Keegan's vitals (blood pressure, heart rate, and temperature) twice a day, every day.  About two weeks ago, we noticed his heart rate was noticeably higher than it had been, even when he first woke up.  He also had some slightly elevated blood pressures.  As you can see from the pictures below, Keegan had a pretty busy weekend playing with family, so when he started showing signs of increased fatigue, we weren't immediately concerned. 

For the last month or so, we've been toying with the idea that Keegan might need to drop his nap.  I did not want to hear it at all because I still needed the quiet time.  Still, he was staying up later and later at night, and the pediatrician said that was a good indicator that he probably was in the process of giving up the nap.  Sunday however, he asked to take a nap at 11:00am, even though he'd slept in that morning.  He took a two hour nap and fell asleep that night as I was reading to him before bed.  This morning, he did not want to wake up after sleeping over 12 hours.  Both his occupational therapist and feeding therapist commented that they thought he didn't feel well.  His OT said he didn't have any "fight" in him today.  Then he fell asleep in the car at 10am on the way home, which is something he hadn't done since we drove home from Boston over a year ago.  We went to my mom's house, where he promptly asked to watch a cartoon and laid down on the floor with his blanket to watch.  He didn't touch a single toy.

I finally decided to call the transplant team.  They had me bring him to the pediatrician immediately.  Luckily, our pediatrician is best friends with our transplant cardiologist.  (Tell me that's not a God thing!!)  Of course, he perked up in her office, and she didn't think his heart sounded bad.  All this is to say, that despite everyone (yes, I guess me especially) getting worked up about it, we've just decided to wait it out a bit longer.  He again feel asleep immediately tonight although he didn't do much of anything at all this afternoon and was extraordinarly moody. 

It's quite possible that we're all overreacting, but frankly, it's hard not to do so.  The loss of our little friend, Hannah, last year made me realize that I can never underestimate anything related to Keegan.  Another friend who was transplanted over 10 years ago has been fighting rejection for the first time.  Here's the thing: this will never go away.  It could literally happen any minute of any day.  Keegan will never have "just a cold" or "just a bug".  Every symptom could be a glaring red flag, and I am so afraid I'll miss or ignore it until it's too late.  Sure this could all just be "normal toddler stuff", but what if it's not?  I'm tired of waiting for the bottom to fall out.  I push the worry aside way too many times a day.  And you know what?  I'm tired of it!  It's exhausting.  I'm sorry if this sounds like a pity party, and maybe it is.  I think I'm entitled to one every now and then.  Every day I wake up knowing that no matter what we do, no matter how many precautions we take, today might be all we have. 

Because Keegan's heart is denervated (the electrical system of his heart was severed when his old heart was taken out), he does not feel chest pain and would not feel the tell-tale signs of heart failure.  There wouldn't necessarily be any warning.  I've learned to live with it as best as I can.  I've learned to cherish every smile, every laugh, every tear, and every precious moment.  And today, just like every day, we're waiting.  Waiting for what?  I don't know.  I hope I leave this earth one day waiting on Keegan.  Nothing could make me happier.  But today and tomorrow, I'm waiting to see what will happen.  And frankly, it sucks.

Wait for the Lord.  Be strong, and take heart and wait for the Lord.
Psalm 27:14

Visit from Wesley

Gray's uncle, Larry, and his cousin, Wendy, came to visit last weekend, and we finally got to meet Wendy's son, Wesley, who is almost 2 now.  We had some fun spending time with all of them.  Wesley and Keegan became fast friends.  Can't wait to see y'all again!

Keegan & Audrey with Great-Granny

Keegan showed Wesley how to be a bucket-head while they swam Saturday morning.

I'm assuming these two were laughing at me since I was sitting off to the left, but I have no idea why!

Showing Wesley the duck statues in Allen.  I think Keegan misses the Make Way for Ducklings statue in Boston Common.  I miss the weather in Boston....slightly cooler there than on the surface of the sun, where we evidently now live.  Lovely face there, by the way, Keegan.

Sweet boys.

Oh wait...that's more like it!

Wendy & Keegan having a moment.

The kiddos

This is Wesley's "oh noooo!" face.  It's my new favorite!