Ch-ch-ch-changes

If I was less computer-stupid, I would figure out a way to have that David Bowie song playing when you pull up this blog post.  Instead you'll have to settle for a mental soundtrack.  Yes, there are big changes happening in the world of Kinnaird.  And no, I'm not pregnant.  (Geez, can't a girl in her 30's have news other than that?!)  But first, a Caleb update.  Caleb had his first check-up in 4 months, after what we considered a really great summer for him.  For once, I was headed to the hospital with high hopes for a good report.  And I got one.  Caleb is doing well!  We have continued to periodically check his oxygen saturations at home and his numbers have been good (in the high 70's and low 80's) every single time since his last check-up in April.  We haven't had a single scare or concern since his last doctor visit.  PLUS he's finally starting to catch up developmentally... yay!  At 17 months, Caleb took his first steps and at 19 months now, he's really starting to move.  He's talking too and watching him grow into a full-on toddler is lots of fun.  Today he actually said "thank you" when I gave him his juice.  (Well, he said "deek-oo", but whatever.)  These little milestones are fun for every parent, but for me, every new thing Caleb does makes me want to throw a party.  There was certainly a time when I couldn't imagine him walking and talking and yet here we are.  And since this last doctor's appointment, I've daydreamed about Caleb reaching milestones I've never even thought about... kindergarden, driver's license, college... these are brand new thoughts for me and I really do expect him to get there.  Of course I say "expect him to get there" with the disclaimer that I hold Caleb with open hands to God and have no freaking clue where he'll "get to".  But I do have stronger hope for Caleb than I've ever had, and I think it's actually realistic.  Last week, the cardiologist was really pleased with Caleb's continued growth and development, and with how stable Caleb's cardiac health appears to be.  So much so that we don't have to go back for 6 whole months and they fully expect his next open-heart surgery to be able to be put off until he's about 3 years old.  That is wonderful news!  The older he is, the better, for so many reasons.  We left the doctor's office and worshipped God in the car on the way home.  We also went through a Dunkin Donuts drive-through and let Caleb eat donut holes in the car.  It looked like a bag of powdered sugar had exploded in our back seat, but we didn't care.  We were singing worship songs at the top of our lungs and praising God for how good He is.   

So Caleb's doing very well and meanwhile God is taking our family down a new path that will continue to require complete dependence on Him.  I'm starting to think that's the way He likes it.  After being at home full-time with my boys for almost 4 years, I've just started a new part-time job with a ministry called Cradles that works with teen parents.  I'm the program coordinator and it's a great fit for me.  The program provides high-quality and low-cost childcare to teens who are parents, so they can finish school.  We also have a daily parenting and life skills class they come to for the last hour of school each day, for school credit.  And of course the main focus of what we do is building relationships where we can love them, support them, and share Jesus with them.  Daniel and I feel 100% sure that God is calling us as a family to minister to other young families and we are so excited to open our life up to them and see what He does.  We know we have a lot to offer other families in crisis and can't wait to share the love and joy and hope that we have found in Jesus.  Because you sure can't find it anywhere else.      

We would love your prayers as we make this transition.  So far, Jonah is thriving in the Cradles pre-school class (the kids can come with me when I'm there because we have a childcare facility), but Caleb is struggling.  He only goes to Cradles 8 hours a week, between Daniel and Grandma Amy watching him the other times I work.  But he's not happy about it so far.  Pray for him and for us as we adjust to a new schedule and much more demands on me.  We know that God wouldn't call us to do something that He won't provide for, but transitions are always stressful.  Thanks for praying and supporting us in every season of our life.

Hope you've had a great summer too.  And I hope you yourself know the hope and joy that we have found in Jesus.

"So... how is Caleb doing?"

At least once or twice a week, I run into someone at, say, Kroger who chats with me for a minute and then, seeing Caleb grinning and trying to climb out of the cart and take a box of cereal with him, cautiously says, "Well he looks healthy!  He must be doing great... right?"  People always say this while nodding their head and looking at me expectantly and I can't tell if they're trying to encourage me or encourage themselves.  It actually means a lot every time someone asks and helps me feel like we're not alone and people really care... but I struggle between giving people the answer they probably want to hear standing in Kroger versus the real answer that lingers in our house on a daily basis.  So how is Caleb doing?  Well let me tell you the not-best-suited-for-Kroger answer.  Caleb is doing really well right now.  What that means is that we've had no unexpected events or changes in his health lately.  He has actually had pretty good oxygen levels this summer, with his sats (oxygen saturation) in the high 70s to low 80s.  He is often pretty blue, especially his lips and his hands and feet, and that's pretty typical for a kid with his heart condition because of his funky circulation.  Developmentally, at 17 months he is just now starting to take his first steps and he's quickly making up for lost time.  He crawls like a mad man, climbs on anything, and gets frustrated when you tell him, "Get down from that Caleb, you're not big enough to ride on the lawnmower", as if he defies your logic and will prove you wrong.  The child has a generous dose of determination.  In all other areas of development, he's a perfectly normal little guy.  He's starting to talk, earlier than Jonah did, and his favorite word is "Cheeeeese", as in "take my picture, please".  He's says "daddy" all the time and "mommy" only occasionally, just to show me that he will say whatever dang words he chooses.  

You may be thinking, who wouldn't want to hear that?  Well, because that's not the full answer.  The full answer is, that's how Caleb is doing... right now.  I realize that many people think because he's had surgery, his heart problem has been corrected.  Actually, there is no "cure" or "fix" for Caleb's heart condition.  As our cardiologist explains, everything we do for Caleb, medicine or surgery or whatever, we are trying to make his heart as strong as possible for as long as possible.  And for how long that will be is completely unknown.  The thing is, Caleb's heart has to work much harder than everyone else's does to pump blood.  That extra work puts stress on his heart that, over time, can weaken it.  At our last doctor's appointment, which was a positive one, Dr. Kumar said, "He's doing well right now, but of course after 5 or 10 years of his heart working this hard, we just don't know what shape it will be in".  Ever since Caleb's last surgery, his heart has been weaker than before.  The doctor calls this "diminished heart function", or heart failure.  There's not much they can do for the heart to make it stronger.  He is on medicine, but so far the medicine has made no difference.  Fortunately, he only has a mild degree of heart failure, and we're really thankful for that.  It does, however, change his long-term prognosis and put him at greater risk the older he gets.  There's just no way of knowing how his heart will continue to hold up as he ages.  

Caleb will have one more surgery sometime in 2013, probably next summer.  This surgery will improve his oxygen level, but probably not his heart function.  After that surgery, his heart will be as "fixed" as they can make it.  So far, Caleb has done great for a heart baby.  He's healthy, relatively speaking, and developing normally.  His energy level is pretty good and he's happy and growing.  What we're learning is to be excited for that and not really think ahead.  

Why am I telling you all this?  I promise it wasn't to bum you out.  It's because I don't ask people to continue praying for us as much as I should.  Trust me, I would rather just not think about his heart condition and unknown future, and so I assume nobody else wants to think about it either.  But I know that's not true and that people want to know so they can support us and pray for us properly.  I actually shared this stuff with some family last week who then said, "Oh my gosh, I didn't realize all that.  Are you guys dealing with all this ok?"  And the honest answer is yes!  We really are learning how to live with this and feel like we're as normal as possible.  Still, our hearts are permanently softened, and the simplest thing like seeing St Vincents' NeoNatal Ambulance flying down the highway makes us stop for a minute, shed a couple empathetic tears, acknowledge that pang in our hearts and then move on.  We are forever changed, Daniel and me, into different people than we were two years ago.  But honestly, the change in us has been really good.  We are thankful and joyful over the smallest life experiences and that makes life a whole lot of fun, when you enjoy every little bit of it.

It would mean so much to have you continue to pray for us and encourage us.  Yeah, we're pretty tough and we trust in Jesus, but we still live with the reality of a sick child on a daily basis.  The love of our friends and family keeps us going at times, and today I'm letting you know we still need it.  Thanks for walking with us through the crazy life God chose for our family!

No place like home, but mountains are nice, too

If living in Africa did one thing in my character, it was to make me into a thankful person.  One thing in my life I will NEVER take for granted is my bed, and every time I travel and then I come home and crawl into my bed, I say a prayer of thanks that I have such a comfortable place to sleep.  It's a simple thing to be thankful for, and if you've slept in some of the places in the world I've slept, you know what I mean.  I seriously love to travel, but there's something so great about coming home again.  We've been traveling quite a bit this past month.  It's been a month of some big-time spiritual refreshing for me and a month of awesome bonding time with my family too.  Wow, just writing that sentence made me overflow with thankfulness again.  What a good May I've had.  Thanks, God... these are great blessings.


The first week of May, Daniel and I went to Costa Rica for 6 days for a missions conference with International Teams, the missions org that Daniel works for.  God really took that time to speak to me about my life, and to encourage and refresh me personally.  I have been growing closer and closer to Jesus in the last year and one thing He has been saying to me over and over is that He wants more of my attention.  And the more I give Him, the more change I see in myself.  While I was in Costa Rica, God really laid it on my heart to get more serious about how I spend my time.  As I prayed about that, I decided to designate the weekdays as "no media" days... meaning that Monday through Friday, I don't watch tv or movies or get on the internet.  I leave that stuff for the weekend only.  It's amazing what cutting entertainment out of my schedule for most of the week has freed me up to do!  I am spending more time praying, more time reading my Bible, more time just talking with my husband.  It's so good!  The closer I get to Jesus, the less I care about other stuff anyway.  


Not only has there been a strengthening of my relationship with God lately, there's been a lot of great relationship-building with my family.  Daniel and I just celebrated our 8th wedding anniversary and I am more committed to him than I have ever been.  God has given me such a gift in my marriage.  And in my kids!  Last week, the four of us took our first family vacation.  We went to the Smoky Mountains and stayed in a cabin for a week, hiking, exploring, playing outside all day in the mountains.  It was amazing.  Not easy, particularly, but amazing and such a blast.  Traveling with a 1-year-old and a 3-year-old is an art form that I'm still mastering, but it was totally worth the extra effort.  


My boys are really growing up.  I noticed it so many times this week.  Jonah was so tough on the trails, hiking several miles and loving every minute of it.  He usually wanted to be the leader, and he routinely would stop, turn around and say in his deep little voice, "Everybody ok back there?", like he was the one looking out for us all.  What a little man.  And Caleb... he's getting so big.  He LOVES to ride in the pack on Daniel's back and he is already a little hiker in the making, I just know it.  He's not a baby anymore, he's becoming a little boy.  When we'd pass people on the trails, people all the time commented on how great it was that our boys loved to hike and how cute they were... I'm sure not one of them would have guessed Caleb's story.  He looks and acts so healthy!  I'm so thankful for that.  He's doing well, he looks good and is getting so close to walking and talking.  And I'm really starting to let myself dream about him getting bigger and the things our family is still going to do.  I haven't always done that, but God has been giving me the encouragement to dream about our future again.  And it feels good to dream, even while I'm learning that there are no certainties.  I think I can do both; I can be hopeful for our future, and at the same time know that whatever life brings, I will trust that God's plans are good.

  

Nothing new under the sun

I wanted to post a quick update from today's doctor's appointment: it was a good appointment.  There have been no changes with Caleb's health, and that's always good news.  Dr. Kumar had no concerns and said that Caleb was stable.  His sats are in the mid 70's and that is satisfactory.  The best part is we don't have to go back for 4 whole months, which is the longest we've ever gone without seeing a cardiologist!  That's always a good sign, when we have a break from doctors.  Thank you so much for praying with us today for Caleb.  It means the world.

I actually had a good conversation with Dr. Kumar today, a conversation about Caleb's future and the possibilities we face.  He didn't really give me any new information, but it was still helpful to talk about how hard it is not knowing what his future holds.  I have been trying to process some stuff today and I want to write about it, but I have to think some more before I share.  One interesting thing that came from the conversation was my realization of the huge need there is for families like us to find support and connections with people who understand what it's like to have a child with serious, ongoing medical issues.  I've actually thought about this a lot throughout our journey with Caleb, and today on the way home I told Daniel that I'm going to pray more about what God would have me do.  I want to see families like ours connected with other families struggling in similar ways, to feel like we're in it together and have a sense of community.  Hmm... interesting ideas are floating around in my head.  

Thanks again for your prayers.  Another blog coming soon filled with what is sure to be some pointless ramblings and at least one funny poop story.  I'm always good for some of those.  Oh, and here's a picture of my family on Easter, which includes Jonah in a sweater vest and Caleb in a tie (i.e., more cuteness than I can handle).

Can I trouble you for some prayer?

Hello on this frosty spring morning!  Life is as normal as can be in this little house today... while I'm trying to steal a few minutes to update my blog, two little blond brothers are going through our movie collection since it's too cold to play outside.  They have discovered and are consequently ripping the cover off of a Spiderman dvd.  Jonah just told me that when he grows up, he's going to watch a Spiderman movie and live way far away, "probably like as far away as Jesus' cross".  (I guess we're still thinking about Easter a little bit.)  Caleb is rubbing his eyes and clearly is ready for his morning nap, but being the good mommy that I am, I am trying to put him off as long as possible by handing him MORE dvd's that he can try to rip the cover off of.  Hey, anything to buy me a few extra minutes to get a task done.


I'm writing this morning to ask you to pray for Caleb.  Tomorrow morning we have an appointment with his cardiologist.  It's a follow-up appointment after the not-so-great report we got 6 weeks ago.  We have been checking Caleb's sats (this is short for "oxygen saturation", hence the word 'sats') and they have been pretty good, but not great.  We're seeing numbers in the mid to upper 70's, but we'd like to see low 80's.  I'm anxious to see what they find out tomorrow.


Would you please take a minute to pray for Caleb's heart today?  Please know as I'm requesting this that we realize prayer is a huge gift and we are more thankful than you'll ever know for those of you who really do take the time and energy to pray for us.  Daniel and I have been praying that God would help us keep the door to anxiety and fear closed, and He's answering that prayer.  But we need the people who love us to keep praying for courage and strength for us, and for vitality and healing for Caleb.  The picture in my mind this morning as I was praying for Caleb was this mounting pile of prayers at the feet of Jesus; a pile that is getting so big it can't be ignored!  Please join us in adding to that pile of prayers today for sweet Caleb.  I will update tomorrow after we see the doctor.

Sweet relief

I totally should have let people know this last night, but I think I'm just a little bit in shock and can't wrap my mind around the conversation I had with Caleb's cardiologist last night... Dr. Kumar called last night right as we were walking out the door to go to small group.  He had talked to his nurse, who had given him the readings I've gotten on Caleb's sats from the last two days.  He wanted to let us know that he was really pleased with those numbers and so much so that he felt confident Caleb does NOT need a heart cath or any additional tests at this point.  Wait.... what?!  So we just went from painful disappointment, to anxious fear of more procedures, to a sudden change in his color, to... "See you in 6 weeks"??  You can imagine why it's taken me a while to get the word out.  It just doesn't seem possible!  But of course it is possible!  I feel no hesitation whatsoever in crediting God with our great news.  I KNOW that God has responded to the prayers of hundreds of people.  Wow.  Thanks, guys.  You get to count this as your victory, too.

We go for a check-up in 6 weeks.  For now, we're breathing a sigh of sweet relief and moving forward with our plans in the next couple weeks... I'm leaving on Wednesday for a little get-away by myself. I'm going to Colorado for a few days to visit my dear friend Kylee, to rest, read, have great conversation, and re-charge my batteries a little.  I'm SO excited!!  Then when I come home, Jonah, Caleb and I will be joining Daniel on a work trip to Chicago.  And to think that I was about to cancel these plans to be in the hospital... I can't get over it!  

That's all for now.  My little PINK boy is waking up from his nap... better go kiss his face for the millionth time today!

From blue to pink...

I believe with all my heart that my baby boy is experiencing God's healing hand on him... as you may know, we have been in a critical time right now, monitoring Caleb's sats at home, watching with baited breath to see if his oxygen level continues to drop and if his lips continue to be blue.  I am FULL OF JOY as I share the news that Caleb's sats are going up!  His little lips have gone from blue to pink in the last few days and we are seeing numbers on his oxygen monitor that we haven't seen in months.  At first I started thinking of this whole thing as a fluke until I realized... this is no fluke.  Caleb has had blue lips and low oxygen for weeks.  Yes, I can think of reasons why this is, but the truth is simply this: we started praying, and others started praying, and I have seen with my eyes the color in his face begin to change, and have seen the evidence on the monitor last night and all day today... God is with my baby boy.  I don't understand all of God's ways, why some prayers are answered the way I hope for and others not, but I have no doubt in my heart that this week God touched Caleb and changed his oxygen level.  His sats are in the high 70s and low 80s and that's right where the cardiologist wants them.  God has given us a gift this week and we won't forget it.  

Caleb's sats need to stay up for a few days to be completely out of the woods.  I'm convinced we need to keep lifting him up, and I will keep expecting God to respond!